This user hasn't shared any profile information
Posts by MegZucker
It was a beautiful Spring day. My friend Donna and I were outside of her parents’ home, sitting in her brother’s (my ex-boyfriend) parked old Cadillac. Despite the fact he and I had broken-up, Donna and I remained quite close. As we sat together on the leather seats that began to stick to my shorts, I watched as Donna pulled out a pack of cigarettes. “Hey, Meg. Wanna try one with me?” This would have been our first time. Donna was a year younger than I, and attended the High School across town. Her friend at school had provided the Marlboro Lights.
At first sight, I was intrigued by them. Yet, I felt immediately guilty. While I knew smoking was bad for you, I began to convince myself that perhaps it was actually okay. After all, I was pretty sure my parents had smoked cigarettes at least at some point in their lives, but it had been years. As I further reflected, I instantly recalled my Dad in his home “study,” smoking a dark brown pipe at least for a short period during my childhood. Unlike the smell of a cigarette, I loved the blend of what seemed like vanilla and smokey flavors when I would get a full whiff of my dad’s lit pipe.
I turned and looked at Donna. She was really pretty, and flashed a somewhat mischievous grin in my direction. Before I could formally respond, she offered the now-opened pack for me to select my choice smoke. As I tried my first puff, my first thought was actually, “This is kind of interesting.” In that moment, I couldn’t help but remember the first time I tried bubble gum cigarettes as a pre-teen. Each pack was designed to look like a real pack of cigarettes, and when you blew on the candy cigarette, powder would come out that looked like smoke.
But unlike blowing on candy as a kid, this was real. And so, with only an initial, slight hesitation, I took my first real puff….and then coughed. Before I could try again, I noticed Donna taking a similar drag, and felt mightily impressed. It wasn’t what she was doing but rather, how she looked doing it. Donna held the cigarette seamlessly–almost elegantly. Yet, somehow she also seemed sort of edgy as the cigarette rested perfectly between her two fingers. As I began to wrap my right finger around the white, thin object, I caught a quick glance of myself in the rearview mirror of the car.
In a word, I looked utterly stupid.
I suppose somehow I imagined myself looking like Donna as she held her own cigarette so divinely, so cool. But instead, with my one finger holding the cigarette rather awkwardly at best, reality struck quickly, and I looked merely like an awkward idiot. As it turned out, my first attempt at smoking was my last…..thanks to my hands.
Lately I have been thinking about how grateful I am for so many things. My family, my health, my job, this awesome “Don’t Hide It Flaunt It” community. But, I started thinking that to the outside world, strangers might take one look at me and let’s face it, take pity. Or even if not, they wouldn’t want to trade in whatever their challenges are for mine. Given the fact that, when I was a child, homeless people in the Middle East used to beg my parents for money until they would see me and run away, it is not surprising that someone’s pity at the mere site of me is a practical reality.
But there have been so many experiences in my life where my very differently-shaped hands have actually served me incredibly well. And so, it is time once again for me to provide you all with another list of Top 10 Reasons I think it is simply amazing to have two fingers. As I come to think of it, Letterman might be on his way out, but my Top Ten List will live on.
TOP TEN REASONS IT’S AMAZING TO HAVE TWO FINGERS
10. You will be the one everyone always remembers at a reunion—no dorky old school photo from the past necessary;
9. Wherever you go, people who see you for the first time throw loads of smiles your way (usually because they are unsure of what else to say);
8. If you decide to post an inspirational quote, you have instant credibility;
7. When you visit your kids at school or camp, and they also have your condition, you don’t have to sign-in anywhere. Everyone takes your word that they’re your kids;
6. You are the go-to person anytime something falls in between the seats of a car and it’s nearly impossible for anyone else to reach into the long, narrow space to retrieve it;
5. You learned quick addition and subtraction without counting on your fingers;
4. You can type wicked fast. With no other fingers to get in the way, speed is on your side;
3. Your career as a stand-up comedian could be launched with just a fraction of the weird things people have said to you over the years;
2. You always get an automatic callback on interviews. Let’s face it–they want to know more; and…..
the #1 reason it is amazing to have two fingers is…………………
The heat was practically unbearable. We were a dozen thirteen-year-old girls who had been crammed together on the hot bus to Alexandria from Cairo for over two hours with sweat pouring from our skin. There was no point in asking if the driver could turn on the air conditioner—you just knew it wasn’t in working order. When we settled in to our temporary overnight residence, I looked around at the girls on the basketball team. Although I was wearing the same Cairo American College (CAC) travel shirt as the others, in actuality, I wasn’t on the team. Instead, I was the CAC team’s “manager.” The following morning, before the big game, I sat next to our coach, Mr. Shaheen. My sole responsibility had been to make sure all the girls arrived at the court by 8am for early pre-game practice. My job was done.
It’s not that I wouldn’t have loved to play—I would have. In fact, had I tried out in the beginning of the season, I would’ve leveraged the skills I learned shooting hoops with my older brother, Peter, since I was six. Instead, I sat watching our team crush their most formidable opponent, and stared at our Coach. Mr. Shaheen was a relatively dark skinned, handsome and athletic man who sported a thick mustache. He was also our gym teacher at CAC. From the beginning of the school year it was clear he liked me, and had offered the role of manager one day during Phys Ed unexpectedly. But I had never even considered trying out for the CAC team. It simply didn’t come up and I had made no indication of my desire to play. I always assumed that Mr. Shaheen wouldn’t support me, given my physical difference. And so, while I pretended to enjoy cheering the team on, I felt frustrated by my inability to flaunt my athletic abilities. I wasn’t yet strong enough to speak up on my own behalf. I lacked the confidence, I lacked the pride.
This past week I kicked off the Don’t Hide It Flaunt It PEACOCK LOGO Children’s Art Contest, where the winning sketch will become the model image for the DHIFI jewelry line being created by Jennifer Stock Designs. As a result, I have been thinking a lot about what the peacock represents and why it is such a perfect fit as the DHIFI logo. Simply put, peacocks are the symbol of openness and acceptance. A beautiful bird that flaunts its feathers for all to enjoy? The logo choice seems obvious in retrospect.
But as I was choosing the new logo, I couldn’t help but pay attention that day to all the press about NBA basketball player Jason Collins’ decision to reveal that he is gay. Apparently, despite all of the progress we might think has occurred on that front, Collins is the first active athlete in any of America’s four major sports leagues to make this pronouncement. In an article, Collins revealed why he finally decided to step out. “It’s tough to live a lie. It’s really tough: I describe it as you know the sky is blue but you tell yourself its red. It’s an insane logic. It’s tough to continue to live with lies and half-truths. It weighs on you. You put on a mask, but at the end of the day, you’re not happy telling yourself a lie over and over again to the point where I am now being honest and truthful and not having to have a censor button, it’s liberating.”
What grabbed my attention most of all was not the fact that Collins is gay, but instead his comment about “living a lie” and feeling “liberated.” I thought about that a lot. Although my own personal difference may not be invisible, somehow I can similarly relate. I know what it feels like to hide, and I don’t just mean concealing my hands while being photographed. Even with my physical difference out in the open and extremely apparent, I have realized that unless and until I consciously take a stand to be clear about what I am and all my capabilities, I will find myself living a life where I am not being true to myself.
In this context, I was reminded of a lovely mother, Elisa Peacock (no joke, that really is her last name!), who recently wrote me on the DHIFI Facebook page with the following story: “Meg, while sitting in a diner on Easter, I noticed a man outside talking to his son and saw that his hand was exactly like (my daughter) Lauren’s. I was so surprised! I walked outside with Lauren and we introduced ourselves. He had that look that said “what does this woman want with me?”!! I said “We noticed that your hand is exactly like my daughter’s and wanted to say hello.” He didn’t get all excited like I thought he would but was cordial. We kept it brief. But it made me rethink that maybe everyone does not want to be noticed or talked to just because have the same difference. Any thoughts?”
To me, this story spoke volumes and reminded me once again that, invisible or not, flaunting one’s difference takes effort and it is not inevitable. It also reminded me how our every interaction with people, even strangers, can represent a missed opportunity if we have not reached the position of being proud of who we are. I have learned so much by learning to love myself, not despite of, but even because of my difference. And when you finally have the courage to flaunt, it is amazing the positive impact it can have on those around you. Just this week Ethan came home from school and informed me that he now regards his very differently-looking hands as his, “pride and joy!” I melted.
And so, if the peacock symbolizes the path to liberation (a worthwhile goal for any of us), then we need to find a way to turn our differences into that source of pride and self-confidence that will let us, not someone else, decide how we’re defined. No more living lies to accommodate someone else’s expectations of us. As Collins himself put it, “there is nothing more beautiful.”
At first, my fears from my own childhood were only about myself. Would they stare? Would they care? Would they whisper? Would they point? Would they laugh? Would they be scared? Would they shout aloud their questions about me for all to hear? But most importantly, would they get the fact that the most noticeable thing about me was actually the least important thing that I otherwise cared about?
But now I was an adult and it was no longer about me. As Ethan and I waited for the kids in his Kindergarten class to line up for his first day, I took in the panoramic scene. There was a flood of mothers and also some fathers standing with their own five-year-old children. It was clear that some had older siblings already enrolled, since those mothers seemed grouped together, comfortably chatting away with their friends while their kids stood close-by. For the rest, this was a new experience, but the excitement of a new school year was without question in the air. Some kids appeared to know one another from nursery school, and so they too filled the air with audible chatter and laughs. “Finding Nemo” had been a hit film with this crowd and so, at one point, a group of girls belted out a loud and solid, “First day of school! First Day of school!”
Although Ethan had one friend from nursery school in his class, for the most part he knew no one. As the kids lined up per class, I looked over at our eldest son, his blue eyes glinting back at me. “Have a wonderful day, E!” I shouted out. “Bye Mommy! See you after school!” He said with a wave of his one finger. To say that my stomach was in knots was an understatement. I froze with fear. I had purposefully kept my hands largely in my pockets while waiting for the teachers to come, to ensure that my very differently-shaped hands would not cause a distraction on his first day. But I knew that was simply a temporary deferral. What would happen when he walked through those solid wood doors? Would they stare? Would they care? Would they whisper? Would they point? Would they laugh? Would they be scared? Would they shout aloud their questions about him for all to hear? But most importantly, would they get the fact that the most noticeable thing about Ethan was actually the least important thing that either of us otherwise cared about?
Lately it has been nearly impossible to not think about the concept of fear. Of course, most recently the alarming events in Boston come to mind. But let’s face it—there are countless reasons, both domestically and internationally to make one want to cower at home and never leave the yard. Even when I tried to escape watching the horror of real-life, television drama was there to pinch-hit. On a recent episode of “Glee” (FOX), (typically a mindless guilty pleasure,) students were crouching behind a locked door praying to not alert an uninvited perpetrator to their presence. Watching, I could not help but think of the children being hidden by their teachers in the closets of their classrooms in Newtown, CT this past December. I don’t doubt that was intentional on the part of the show’s writers. But most times, thankfully, our fears are not created from horrific and unexpected events. Rather, they are actually quite personal and happen during every-day experiences.
As I sat and drank my coffee recently, I opened up the paper and read an article quoting Franklin D. Roosevelt from his 1st Inaugural address in 1932. Of course, the most memorable line was what was quoted: “The only thing to fear is fear itself.” Many don’t know that the phrase was actually not in the original draft of Roosevelt’s speech. It was added at the last-minute and its impact was powerful, for it represented a rejection of being paralyzed. Given FDR’s own private battle with Polio, he might just as likely have been speaking about his own fears and not just about the country’s battle with the Great Depression.
Thinking further from my vantage about the concept of fear, I couldn’t help but consider that the only thing more difficult than having the world judge you based on your physical difference is to have to stand by and watch your children be the objects of judgment and scrutiny– simply for being themselves. To me, that is what has been the scariest. To feel utterly helpless and frozen with fear.
And although FDR’s phrasing was catchy and motivating, in truth, I am not sure actually whether I have ever feared “fear” itself. Simply put, I think what I have feared more is the fact that I cannot control cruelty lurking around the corner. Although those events have been extremely rare, like terrorist attacks themselves, when they hit they penetrate deeply. For example, just the other day I saw a nasty comment written on a young blogger named Caitlin’s site (she also has a limb difference and blogs at www.streamofcaitlinness.com.) The comment to Caitlin said, “It’s not about being shallow or open minded. People with deformities are just weird. If we make fun of you, deal with it. God’s little mistakes.”
As long as there are new people to meet, it is inevitable that my children (and I) will continue to be the objects of questions, stares and even fear. Those things are hard but ultimately manageable. However, feeling that your child might be the object of cruelty and mockery is what has been my greatest fear to overcome. So is it possible to overcome this level of fear? The answer is a resounding yes. I was reminded of it by Caitlin’s response. She swift replied, “Thank you. [Expletive] You.” And then matter-of-factly shared it on Facebook as an example of someone being cruel. It seems Caitlin has discovered her own strength and uses it to repel jerks and their commentary. This is one girl who is not afraid.
I had never been to Las Vegas, nor had I actually cared to visit, at least not for any type of vacation. But it was my older brother Peter’s birthday, and he had convinced me (and my husband John) to go with him and his wife. While John did not bat an eye, I could not imagine spending time in smoke-filled rooms gambling the night away. “C’mon, Meg!” my brother pleaded. “You’ll love it. You don’t have to gamble at all. You can see shows, eat great food, and our hotel even has an incredible gym and spa!”
And that is how I found myself in a hot, small multi-mirrored room at the Venetian hotel, Las Vegas, surrounded by about eleven other people, all in the same, “Eagle Pose.” Although we had signed up for a completely different abs strength training class, somehow the schedule was switched last minute, and a medium level yoga class was being offered in its place. While mentally I knew the class would prove to be a disaster given my inability to balance well on one (extremely small) foot baring only one toe, I decided to try it anyway. “Shift your weight onto your left leg,” I heard the instructor say aloud as she began to expertly demonstrate the pose. “Now, cross your right thigh over your….” And then, everyone turned in my direction after hearing a rather loud thud; I had fallen completely over, even off my mat, onto the hardwood floor. I felt a room full of stares, but then everyone quickly averted their eyes, continued with their own pose, pretending not to notice. “Are you okay?” My sister-in-law mouthed in my direction. I nodded with a half-smile. In my effort to balance, my left foot had failed both me and my effort to look like an Eagle. After a while, I completely gave up and began to do sit-ups in the back, figuring I would have the abs work-out after-all.
No, yoga was not meant for the likes of me.
“Hey, Meg.” It was my friend Beth calling. “Want to join me at my awesome spinning class? I’ll pick you up and you can be my guest!” An avid lover of biking (outdoors), I thought… “Why not?”
And that is how I found myself in a hot, small, multi-mirrored room at a local Fitness Center’s spin class, surrounded by about eleven others. The instructor was an extremely fit and attractive woman, who immediately filled the room with blaring, yet appealing music. As we all began our spin cycle, I felt grateful for the invitation, and a quick sense of relief. This was not only not fun, but arguably easy for me. I pedaled faster, grinning at my friend. Yes, it was true that I couldn’t really cycle and simultaneously reach for my water bottle like everyone else in the room, but I didn’t mind. This felt invigorating! I was more than thrilled…..until I wasn’t. After about ten minutes, the instructor chimed through her small microphone headset, “Okay, now everyone! It’s time to really see you sweat!” In that moment, as a new song blasted through the surround sound, the entire class began to stand up on their bikes and pedal simultaneously. “Cool!” I thought. But in that moment, as I attempted to stand and pedal, my tiny feet failed me. I had to immediately sit back down. It was clear that I didn’t have enough length in my foot to balance my body. And so, notwithstanding the class methodically following the lead of the instructor (up and down, up and down, as they pedaled to the loud music), I simply pedaled for the remainder of the class with my rear attached to the seat.
No, spinning was not meant for the likes of me.
A few weeks ago a close friend called me up on a Sunday morning, asking me if I wanted to join her in a class at our local YMCA called, “Shabam.” The gesture in itself instantly made me feel warm and appreciative, but I waffled, unsure if I wanted to once again subject myself to something I might not be physically capable of doing. And, not to mention, the name “Shabam” reminded me of something Super Heroes might scream out after accomplishing something courageous. “Hmmm, I am not sure,” I began to drift into a comfortable world of excuses. After all, I didn’t need these classes. Years ago we built a gym in our basement. I love the machines we have and treasure the time catching up on all my favorite pre-recorded shows as I work out. “Meg, it’s so much fun. Just cheesy dance moves with fun music.” Knowing me extremely well, she continued, “I know what you are thinking, that you can’t do everything. But I think you can and it will be fun!” I thanked her, but declined, at least initially.
To be clear—I have reached a point (or, as I like to call it, “dignity ladder level”) that I really don’t care if I went to a class and fell flat on my butt in front of everyone else. I wouldn’t feel humiliated in the least. Rather, the issue is more that I love to exercise and in particular to dance. The thought of trying something I absolutely adore and then learning it is beyond me physically can be, well, somewhat depressing. By not going to the class, I can skip the possibility of having that post-class “down feeling,” where everyone else is capable of doing things beyond my abilities. “It is just a fact of my life that I have to accept,” I said aloud to my friend.
“Meg, I need to remind you that it isn’t just you–we all have our challenges. I know yours are visible but I think you should realize how many people fall into the camp of feeling trapped by their bodies, even their minds. I totally understand, but I really would love for you to go to Shabam class with me. Not only do I think it is something you can do, I think we’ll have a blast.”
And that is how I found myself recently in a hot, small, multi-mirrored room at a local YMCA class, surrounded by about eleven others. There were two attractive female instructors who immediately filled the room with blaring, yet appealing music. As I began to follow (or at least try to keep up with) the moves, I began to feel like this was actually something I could in fact manage. From the days of doing ballet as a little girl in Pakistan with my Mom as our class instructor, I had always been able to keep-up on the dance floor.
To my relief, there was hardly any balancing as we “shabammed” (is that even a verb?), and I was overjoyed. I glanceded over and saw my friend beaming at me. “Are you having a good time?” I was, indeed. And in that instant, I noted a woman in our class struggling to keep up, who clearly had no natural sense of beat. When the class moved to the left, she moved to the right. When the music began to transition to a new song, we all ran to grab our water bottles waiting for us in the back of the room. The woman looked at me. “Isn’t this fun? I know I have no sense of rhythm and I am probably embarrassing myself, but I always wanted do something like this, even if it is something I really can’t do well.”
And with that, as if someone slapped me on the face really hard, I was provided with a necessary reminder. As much as I often think I am one of the small percentage of people struggling with what is possible, I am actually not that unique after all. As I find myself consumed with my own lines to cross, I often forget that people otherwise physically “normal” are similarly walking their own lined path. What can I say, other than,“SHABAM!” I had achieved my own heroic accomplishment it seemed.
Sometime in the middle of the Shabam class, the music changed to Meatloaf’s “Paradise By the Dashboard Light.” As the girl sang the lyrics, “Before we go any further, do you love me? Will you love me forever….” the instructor began to make a heart-shape with her hands put together as she danced and everyone followed her lead. For a moment I hesitated–it was the one “move” I was physically incapable of doing. But as I watched the same rhythm-less woman dance in the wrong direction making the heart with her hands, I smiled as I simply danced and patted my hands on my heart—my own personal adaptation for the move. In that moment I realized it didn’t matter that I couldn’t make a heart with my very differently-shaped hands. After all, and most importantly, with this experience I had already found the heart to try new things. I didn’t need my hands.
I waited inside as my brother Peter’s friend from school, Tim, rang the doorbell. I had already seen Tim walking across our grass from the circle we lived on in Urbana, IL. I needed to act fast, so quickly dashed to the door before my brother noticed. “Hi, Meg. Is Pete home?” he asked. “No. You can’t come in, Tim.” “There, that wasn’t exactly a lie,” I attempted to convince myself. “Okay,” he replied as he walked away. “Let him know when he gets home that I stopped by.” I shut the door without a response. As I walked back into our house, my older brother by only fifteen months appeared at the foot of the stairs. “Meg, who was that?” “Oh, no one, Peter. Just a neighbor looking for Dad,” I replied, trying to not reveal the fact that I was literally lying through my teeth.
In reality, there was absolutely no reason that Tim shouldn’t have been allowed in to our house….other than the fact that I viewed him as a social outcast. He was a total nerd. Unlike me, Peter did not focus on what other people thought of him. He could have just as easily been friends with the biggest jock in our grade school or the ugliest dweeb. I, on the other hand, was consumed about what other people thought about me all the time. My anxiety over what people thought was in fact so acute I managed to transfer it even to what people might think of my sibling if he were to hang out with dorks. Not only was I unwilling to be seen with anyone with any type of overt difference, I did not want to be associated with anyone that was considered, “less than,” in any way. Not that I was necessarily the most popular girl in the school anyway. But that didn’t matter; my goal was to assimilate. To never stand out in a crowd (even though I did without even trying given my physical difference). This was critical. And so, by extension, I couldn’t fathom having someone like Tim come to visit my brother. What if someone…anyone…. saw him at our house? I shuddered at the thought.
Although outwardly I was social and had friends, I was, in a word, pathetic.
Recently John and I took our family on a trip to Texas. Although I know this is going to sound corny, the time spent together was simply magical. As we began to climb down the fascinating interior of the Caverns near San Antonio, I looked down at my three children. Ethan had been holding his finger in Charlie’s two-fingered hand to offer his younger brother stability down the wet, slippery ground. Meanwhile, Savanna held my own one finger on my right hand tightly as John followed us all closely, camera in hand, taking fabulous shots of the scenery. In that moment, I felt what can be best described as pure bliss; my skin began to rise covered in goose bumps from the feeling of being incredibly blessed. Only a few minutes before I had noticed a little girl around Savanna’s age perhaps staring at us, or likely me and our boys. It didn’t matter in those glorious minutes….. but it used to.
My greatest fear used to be that I would have children born with my condition. But what was I so afraid of? Thinking about all of my capabilities and accomplishments, it’s not like my road traveled has been a disaster or anything. So what was I really afraid of? The answer had much less to do with my condition itself, and instead more about how I might be perceived. Recently, I read a New York Post article called, “The Gifts We’d Lose,” by Kyle Smith that was completely on-topic. The article was about a mother named Britt Sady who loves her child Noah, a three-year-old born with Down Syndrome (“DS”). Although the article focused on state legislation that might prevent people from terminating a pregnancy once a severe abnormality is discovered, I was taken with a related subject also covered. “When does it get hard?” Sady asked a friend raising an older child with DS. The response penetrated. “If you don’t care too much what other people think….it’s all easy.” In the article, Smith provided a staggering statistic: 92% of expectant mothers who obtain a certain DS statistic choose to abort. He continued, providing the following rationale, which resonated. “Children are a status symbol that we love to boast about, and we fear that raising a DS child lowers our status, makes us pitiable.”
This was my “aha” moment in the article. Considering that I was the kid that was consumed by the opinions of others, this behavior would one day translate into my becoming an adult with a mentality of wanting the “perfect” child. This outcome was essential to my belonging to “the right pack.” But my desires and fortune were not destined to match, and Ethan arrived, one finger on each hand, two toes on each foot. He was the epitome of imperfection in the eyes of anyone. Yet finally, through the unconditional love I had for our son, I could see he was just as he was meant to be; he was in fact perfect. After having him, I no longer could worry about what others thought of me, for it was no longer me, it was us. Nothing and no one else mattered. And so while I have been humbled by multiple messages from expectant mothers who have read my articles and blog posts, and decided to forego an alternative option in favor of keeping their unborn child predicted to be born with varying types of abnormalities, the irony of my impact on their decision does not elude me, given my own past struggles.
I used to think that my having ectrodactly was the reason I was so worried about how others perceived me. But it turns out, that our lives living with such a blatant physical difference don’t set us as apart as I used to think. Given the statistic quoted in the New York Post article, I am reminded that a significant majority are concerned with how they are judged based on the offspring they have, fingers or not. Most importantly for me, I have learned that although I may have passed on my genetic condition to Ethan, that doesn’t mean he inherited my every trait. I have not only noticed, but even applaud that as Ethan grows, he doesn’t seem to be consumed with the judgment of others….at all. Although he has friends that he loves to play sports with that are “popular,” he is also the kid that will happily have the short kid, the nerdy kid, and even the kid with any type of mental or physical difference by his side. Unlike many of his peers consumed with how many Instagram followers they may have, he remains unconcerned by the social implications of who he chooses to spend time with.
Before having our kids, everything was all about me, and how my total package was perceived. Was I hanging with the “right” crowd? Involved in the “right” activities? It all mattered. It is worth remembering that when we have a child with difference, or even if they are born seemingly “normal,” it is time to finally let go of having to have everything go so right. Instead, it is time to take their lead. After all, if we think about it, they never think twice about the package we offer them, anyway (okay, at least not until they are teenagers).
Rather, they simply love us for us. Mission accomplished.
I was so relaxed. There was nothing like the feeling of getting a facial. Not that I get a chance to bask in this type of joy so frequently, but usually around my birthday I make a point of it. I love every bit of it: the creams, the steam, the special lavender or vanilla scents. Not to mention how nice it is to simply lie back let someone else completely focus on just you and enhancing your (skin’s) appearance, at least for the hour. On this particular day of indulgence, the woman that typically gave me a facial was away, and so for the first time I was trying out someone new, yet still highly recommended.
Somewhere about half-way through the facial, the esthetician grabbed my hands, carefully and intently massaging from the base of my small hand right up to the end of each fingertip. She then began to move each hand into a pre-heated “glove” to allow the special creams to further silken and soften the skin on my hands. Quickly, I sat up from the warm bed. “Wow, did you just get these? I’ve never had a hand massage or experienced these awesome heated gloves before!” I said excitedly. “Really?” she remarked quizzically. “We have had them for years. All our clients have always been treated to a hand massage when getting a facial since we opened fifteen years ago.”
“All but one,” I thought to myself.
Recently I took my close friend Johanna for a facial for her birthday. We hadn’t seen one another for a long time so some time alone spent treating ourselves felt especially luxurious. We ran into some traffic on the way, and rushed in through the doors. “Sorry we were a few minutes late,” I apologized to the man behind the counter. “No problem. You should still get most of your one hour facial in!” he offered with a smile. “Just quickly fill out this paperwork and you both can get started with your facials!” As we walked down the small corridor, we were immediately introduced to our estheticians. “Hi, I’m Jennifer!” an attractive young woman said in my direction. Once I was lying on the warm, comfortable bed, I thought briefly about leaving my hands inside the covers. But, reminding myself of how important it is to flaunt my difference, I kept them out, noting as she walked in the time was already 4:15. As Jennifer focused on my face, I noted that at one point she began massaging my shoulders and upper arms. However, not once did she touch my forearms or hands. “Okay, we’re done!” I looked at the clock, it was 4:51. “Wow, I thought this was supposed to be an hour facial?” “Well, you were late, and I have to run to my next appointment. I am sorry about that.” Jennifer had not even looked up at me. And so, I went outside, paid for our facials and walked across the street to get both of us some coffee, texting Johanna to let her know where I was.
When she arrived about twenty minutes later, she looked radiant. “How was it?” “Awesome! Thanks so much, Meg. I wonder why your person didn’t give you a full hour?” I nodded with frustration. “I guess she had another appointment.” While I was tickled to have treated her, I needed to press her on something. “Hey, did your esthetician give you a hand massage?” “Yes, it was fantastic—I loved it!”
I wasn’t shocked. It was clear that, at worst, Jennifer was so repulsed by my very differently-shaped hands and arms that touching me was a non-starter. Or at best, she wasn’t sure whether I would enjoy a massage in the same way people born with a fully developed hand would. She might have even feared hurting me unintentionally. I would like to give her the benefit of the doubt and believe that her intentions were more than good. But regardless, there was a better way for her to have acted, if only she understood.
A few days later I was in a grocery store, after returning from our awesome trip to Texas. I reached to grab the final item in my cart (a pack of gum) to put on my conveyer belt. A woman who worked for the store said, “I know you probably don’t need it, but can I help you unload that item onto the belt?” I took a breath, smiled, and said “No thanks.” After that, I posted the incident to my DHIFI Facebook page, interested to hear other opinions. Should I have said something that definitively made her realize that I, in fact, did not need the help? Could I use this to educate her so that she wouldn’t jump to conclusions about what people that look different may or may not be able to do? The overwhelming majority of commenters agreed that I did the right thing by smiling and appreciating her offer to help. I noted the comments were remarkably consistent: “You should respond with grace like you did. You know what you are capable of, she does not.” Others chimed in that she was trying to be thoughtful, and still others continued how it is best to give people the benefit of the doubt. Another thoughtful comment was, “I ask people if they need help all the time; and it’s not because I think they can’t do it on their own but to show there are still kind people in this world.” All of these comments resonated with me, and I appreciated being reminded of why people always want to offer so much help, with the best of intentions.
But then one person wrote something that took me aback. She interpreted my description of receiving unneeded help as something that makes me angry. I thought about this for quite some time. In fact, so much that it inspired me to write this new post. Anger? If I am really honest with myself (and therefore all of you), I suppose I really have felt angry, at least in the past. But I have grown from that, though. And still, I think what lingers more than anything when people react to my difference is the sense of feeling “less-than.” When you walk in my shoes, and people (for whatever their reasons) are afraid or at least unwilling to even touch you in their normal course of business, it is tempting to shout, “Hey, world!” “I am actually not so different than all of you than you perceive. Yes, I may look different. But I would love to just go through the day without people reacting to my difference.” While my anger is basically gone, I’ll admit sometimes it still hurts.
By sharing my recent experiences I hope I can provide insight into what it is like to be treated differently, even when there was the very best of intentions. And trust me, I understand that people usually mean well.
The point, however, is to help people understand the impact of their actions, even well-intentioned ones. As one grandparent weighed in about her grandson during our vibrant Facebook exchange, “He is very independent and loves to be able to do for himself. We rob him of that “self-worth” if we try to do too much for him.
Another suggestion that I loved even more was the following: “It would be great if you had a quick, humorous, yet educating comeback for situations like these. It would give the ‘help-offeror’ something to think about and you the ability to just keep moving forward. With smiles left behind.” I thought that sounded great, even if I didn’t know what to do with it.
Then, the next day, our daughter Savanna handed me the answer. After spending the morning opening water bottles, tying shoelaces and just generally helping my kids out as they prepared to rush off to school while simultaneously preparing myself to head to work, I said, “Have a great day, cutie pies.” Savanna, who had watched me do it all, replied, “Fingers Schmingers, Mommy. I love you.”
The next time someone decides, presumes, assumes…fill in the blank…. that I may need help when I don’t, I will simply smile and say, “No, thanks. I can do it myself.” And then I’ll follow up my reply with a genuine and heartfelt, “Fingers Schmingers!”
Feel free to use it.
I was completely pumped. It was my first day, and I was so happy to be starting my new job. The reputation of the company was stellar and the road to get the competitive position hadn’t been easy. Someone in my new group walked me around, from office to office, introducing me to various legal and compliance officers in the department. “C’mon, Meg! Let’s meet Sabrina! You’ll love her.” As we walked into her office, I saw a striking woman with straight, dark hair who appeared to me about five years my senior. Sabrina saw us in the entryway to her office, and offered a warm smile and wave of her hand. “Hi! Welcome to the Firm. Please, come in.” I smiled, gratefully, and as Sabrina extended her hand to shake mine, I thrust my one-fingered hand confidently in her direction. In that moment she let out an audible gasp and jumped back confused. “Nice to meet you,” I responded awkwardly.
I was completely pumped. John’s firm was having a special, black-tie event. Only spouses were invited but because I was his fiancé, John had them make an exception so I could come along. Although I loved my gorgeous red dress, and made sure that my make-up was applied picture perfect, I knew my shoes hardly matched my outfit. But somehow, as I entered the room holding John’s hand, the music both charged and distracted me from my fashion limitations. “There he is.” I looked over and knew from past descriptions that it was Michael, someone very senior in John’s office. “Hi there,” I smiled warmly at Mike and the woman next to him that I assumed was his wife. He replied, “Nice to finally meet you, Meg.” As Mike stuck out his hand to shake mine, he continued, “We have heard so many wonderful things about you from John.” I blushed and extended my hand. “Oh!” he blurted out, as his hand touched mine and pulled back swiftly. The reddish hue on his face had instantly matched mine. “Nice to meet you,” I responded awkwardly.
A few years after Sabrina jumped back at the sight and touch of my hand, I was happy to hear that she had gotten pregnant. But when her first-born baby boy arrived, I had heard from colleagues at our Firm that he had been born with webbed fingers and toes. As a result, Sabrina was out of work for months beyond her maternity leave, as she and her husband had flown to a special hospital that could operate to separate his fingers and toes where possible. I have to admit something. It’s going to sound pretty horrible. In my mind at the time, I actually had a fleeting thought. I wondered whether Sabrina’s son’s birth difference was a form of karma related to her reaction to me? I momentarily speculated that perhaps the sting of her reaction to me had come back to bite her.
I am not proud of that little mental diversion, nor did it last for more than an instant, but I think it provides insight into how a stranger’s extreme reaction to my very differently-shaped hands had impacted me so significantly and emotionally at the time. Let’s face it. Someone jumping back at the very look or feel of you can feel incredibly humiliating. Of course, people’s reactions may vary. But the real question is not whether someone deserves karmic revenge. They of course don’t. To me the question is whether when someone (an adult) jumps back at something unexpected, is it is a reflection of their own personal insecurities and unease with themselves? Conversely, is it fair to say that those adults that unexpectedly grab my hand and shake it warmly, as if to overtly state that a one-fingered person to them is just as normal as anyone else, are reflecting a strong inner contentment and joy?
I raised this on my Don’t Hide It Flaunt It Facebook page, and within minutes, the comments lit up my page like the Fourth of July. As expected, the reactions varied. For example, one person wrote, “I don’t think it has anything to do with being appalled or disgusted. I believe it is the unexpected that startles, that’s all!” Another thought another person’s jumping back reflected insecurity. Yet another described that on the first handshake, she would be more concerned about maneuvering a proper handshake with someone born like me. “You know your hand better than me…I need to try it once, and then I’ll know I got it right and comfortable for both of us. Autopilot after that!”
So what do I think? Weirdly enough, I think my answer comes more from my own past when I could actually relate to the people jolted by difference. Before I was out flaunting, I was hiding–hiding my hands in my pockets, in photos, etc., but that was the least of it. I was the woman who would never date anyone that was not physically perfect. After all, to associate myself with imperfection could only serve to reflect back on my own. I was the woman who greatly feared having children born with ectrodactyly, my condition. What would one day turn out to be my greatest gift was initially, the biggest shock of my life. When I saw that first sonogram of my unborn child, I imagine I jumped back. And so, how did I relate to difference in others back then? Not well.
Although I can only draw upon my own experience, I actually do think there just might be some validity to my assumption that if someone jumps back at a mere handshake, it may be more of a reflection of them and their own insecurities than really having anything to do with me. If there is some truth to my opinion, then for those of us who live our lives looking blatantly different than the majority, the best way forward is to flaunt who we are, and manage these extreme reactions but not absorb them. My favorite comments on my DHIFI Facebook page were when people provided stories of putting that shocked person at ease, despite their reaction. It’s better to be a teacher than a victim.
The other conclusion that seems self-evident and ironic is that no matter our exterior, no matter our own personal experience, on the inside we’re all traveling the same long road to self-acceptance anyway.
John and his immediate family were in the car on the way home from his Aunt Marcia’s house. He had just met me briefly the night before in synagogue, and then again earlier in the evening. “Let’s take a vote!” One by one, John’s family voted on whether I was a potential “keeper” and if he should pursue me. John sat there bemused by his family’s typical mode of humor and frankness.
It was the end of Yom Kippur, the Jewish Holy Day of Atonement, and my friend Beth had invited me to join her family and John’s to “Break the Fast.” Through Beth, I had actually met John’s parents and younger brother, Mat, a few years earlier. Until recently, John has been living in Washington, D.C., coming up only for holidays. There, at his Aunt Marcia’s, John and I conversed for the first time in front of all of his nearest and dearest. He made me feel at ease, as if we had known each other for years. He also made me laugh…a lot. At one point we moved from the crowded, loud dining room to the kitchen to talk in private. However, this effort became pointless, as different family members kept intruding with business (real or contrived) in the kitchen.
For years, I have heard the story of the “legendary vote.” Never once did it occur to me that the vote had anything to do with my physical (deformed) body. Never once did I believe that it was prompted by anything but the Zucker family’s sometimes fun, yet twisted sense of humor. And my hunch was right. In fact, “the vote” was nothing more than a playful jabbing at my husband-to-be from a family that could tell he seemed already smitten. But I wondered just why they were so instantly accepting of me, two fingers, two toes and all? I have written in past blog posts that the families of several boyfriends before John had instantly rejected even the notion of welcoming me into their family due to my having ectrodactly. How was this family not deterred, even for a moment, by my physical disfigurement?
Upon reflection, sometimes I wonder if John’s brother, Mat, unknowingly did me a huge favor. A few years earlier, Mat had taken the courageous step to let his family know that he was gay. Upon hearing the news, John’s parents were instantly supportive and expressed that they loved their son unconditionally. In that moment, their vision of their family had forever changed. Not for the bad in any way—just a different life outcome than they had expected. Now I actually wondered whether Mat’s coming out to his family, and their experience of embracing the unexpected, had paved the way for me?
Of course there has been a lot of news this week relating to the Supreme Court and the subject of gay marriage. But something on the television news last week, on topic, had already caught my attention. A Senator, who had previously been opposed, came out publically to endorse same-sex marriage. For this Senator’s entire public career, he had been on record holding the exact opposite position. In his words, “[This] isn’t how I always felt. As a Congressman, and more recently as a Senator, I opposed marriage for same-sex couples. Then, something happened that led me to think through my position in a much deeper way.” It’s not the politics or the actual issue of gay rights that interested me about this story, but rather it was the Senator’s change of heart. As soon as I heard the backstory, I got it. Apparently, the Senator’s only son came out to his family which prompted the change in attitude and posture of his well-known father.
This news got me thinking a lot. I write all the time about how important it is for people to avoid pitying or judging one another. It’s the mantra I put in huge font on the cover page of my Don’t Hide It Flaunt It site. But being preachy about it will not win many converts.
In some respects, it feels like people fall into two categories or sides of the fence. On the one, there are those that have hardly, if ever, been directly impacted by any type of difference. They have their opinions, and judging something that hasn’t hit home for them may be no more than an intellectual exercise of what they believe is right or wrong. One the other side, there are those of us who are walking the walk, experiencing difference on a deep and personal level. Perhaps we were born with our difference, maybe gave birth to or married it. It might even be invisible or have appeared unexpectedly. Speaking for the latter “side”, I confess to feeling tickled when I see someone who previously appeared unaffected, finding himself crossing the line to my side, finally having been touched by difference.
But I know also that nothing is that black and white. We all know people who are open and embracing of other people’s differences, even if they have never known such differences themselves. Having now known John’s family for almost two decades, I believe that their acceptance of me would have been complete given their inherent positive reaction and support from the start, even without Mat blazing a trail (though he probably helped).
From what I’ve learned, encountering the differences we’ve talked about is almost a certainty for every one of us. Some will have to deal from birth, others will come to naturally accept the facts of life, and some, will be forced to confront their discomfort. I frankly don’t care how someone gets here, in the camp of acceptance. But for those like me that walk this earth feeling judged simply for being who we are, we rejoice when they arrive.
When I shared this post by e-mail last week before publishing, in the spirit of the Zucker-humor tradition, Mat replied, “By the way, I voted for you because I liked your outfits.” But all kidding aside, he ended his note with something beautiful: “After all, Meg. The more we are accepting of people’s love, the more we can be accepting of more people we love.”
“A strenuous effort must be made to train people to think for themselves and take independent charge of their lives.” -Anne Sullivan
I looked up at the clock….only fifteen more minutes until it was time to leave the Urbana Public Library. Every Sunday afternoon after lunch, my dad took my two brothers and me to spend time reading at the town library. The bribe to get us there each week was first a visit to McDonalds. Although I readily accepted the quarter-pounder with fries, I didn’t actually need convincing to go to the library. By age eleven I just loved books. I was particularly drawn to strong female figures. And so, on library Sundays I would read biographies about female historical role models, like Helen Keller, Eleanor Roosevelt and Amelia Earhart. They were always the topics of my book reports.
While I admired Roosevelt, and Earhart captivated me early on, with her fearless determination to become the first woman and second person to fly solo across the Atlantic, the woman I felt the closest affinity with was Helen Keller. Unlike me, Helen Keller was not born with her physical challenges. At 19 months old she contracted an illness that was later believed to be a form of scarlet fever or meningitis. The illness did not last long, but it left Helen deaf and blind. When I began to read about her, I was simply in awe. Despite her significant physical limitations, Helen Keller’s accomplishments were almost impossible to comprehend. But Helen’s story would not be as amazing without her equally remarkable mentor, Anne Sullivan. Not only did Sullivan help Keller figure out how to read and write, she transformed her from being the “hopeless wild child” to the strong woman that would ultimately become a successful author, political activist and lecturer. Most importantly, Sullivan’s teachings went beyond helping Keller overcome her disabilities–she helped Helen Keller to realize that her mind and her beliefs were her most powerful asset. No one could take those away from her, unless she let them.
Later as an adult, Helen described Sullivan in this way: “By nature she was a conceiver, a trail-blazer, a pilgrim of life’s wholeness. So day by day, month after month, year in and year out, she labored to provide me with a diction and a voice.”
“Meg, Dad’s here, let’s get going.” It was my older brother Peter, jolting me back to reality. “I just want to check this one out—meet you all outside.” As I stood on line waiting for my turn, I opened my book on Helen Keller, and read a quote from her. I may have been too young to fully appreciate its meaning and personal relevance, but it stuck with me: “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.”
As I have been thinking more about the Kids Flaunt essays all due early next month, and last week’s notion that many kids without a blatant difference might be struggling to identify that which makes them unique, I couldn’t help but to think that even if I was born with all my fingers and toes intact, I would still walk this earth with another kind of challenge – the cultural “disability” of being a woman.
Lately there have been a lot of strong and powerful females making the headlines, one way or the other. Of course there was Marissa Mayer, and her recent decision to not allow employees in her company (Yahoo) to work remotely. Her announcement set off a wave of criticism with people fervently airing their opinions on both side of the debate. There was also Danica Patrick, the pre-eminent female driver in IndyCar and a NASCAR Sprint Cup Pole winner. Then there’s the power duo of Tina Fey and Amy Poehler who rocked the Golden Globes earlier this year and who, like Ellen DeGeneres, unwittingly serve as role models simply by making us laugh.
But the woman who has impacted me the most of late, is Sheryl Sandberg, the Chief Operating Officer of Facebook. In Sandberg’s book, “Lean In: Women, Work and the Will to Lead,” she offered stories about what is holding women back in their careers and lives, and ways to address them. I mostly was taken with her sharing her greatest career advice from former Google CEO, Eric Schmidt: “Sheryl, your biggest problem is that you are trying to please everyone all the time…..you don’t make change in the world; you don’t have impact in the world unless you are willing to say things that not everyone will like.”
With that advice to Sandberg in mind, I remembered a recent experience when I spoke on a panel at a professional webinar. Later that evening after the telephone presentation, I received the results of a participant survey about my performance. While the feedback was mainly positive, I got hung up on one person’s comment that (anonymously) read, “Meg tends to stammer and ramble a bit…and I disagreed with one of her comments….” I was crushed, especially since I had heard positive feedback from the organizers right after the presentation. How was it possible that I could have been perceived like this? Wasn’t everyone pleased with my performance? I couldn’t get past it. I concluded that I had let the organizers down and actually sent an apology to them and the other people on the panel. I just felt embarrassed. In fact, from this one negative comment, I went from feeling confident in my abilities to feeling at least temporarily depressed. In response to my apology, one of the senior organizers (a male), responded, “Meg: You didn’t stutter or ramble. It was very good. I find that some folks just like to be critical and even make things up. …” He continued, “I was once even told on a conference evaluation that my hair was too long!” That evening on my way home, I was thinking how much I wish I could be like the organizer – not allowing the opinions of others to so swiftly penetrate.
The irony is that I have spent years learning to “flaunt” and embrace my physical imperfections, and I make tremendous efforts to teach my children the same. Yet, somehow, as strong and proud as I have become on that front, it seems I haven’t transferred my flaunting technique beyond the physical, at least not consistently. Instead, I find that in my professional life I sometimes succumb too quickly to how I think other’s might view me. It is no wonder that Sandberg was getting such great media coverage for her advice—it resonates deeply for so many of us. In fact, if women truly listen and absorb her advice in their daily lives, Sheryl Sandberg could become our modern Sullivan, and this time impacting millions instead of only one.
But carrying out advice like Sandberg’s doesn’t happen overnight. And somehow, it feels familiar that Helen Keller’s initial reaction to life-altering tutelage was to kick and scream, rather than swiftly adjust. But just as Helen Keller eventually learned to master her body, her language and the ability to speak her mind, so too women can and must get a grip on those fears and insecurities that hold us back and surmount them. When we stop worrying what others will think of us, our success as women becomes not a miracle, but simply inevitable.
“Mommy, why did that boy die?” I turned around to Savanna, our six year-old, cursing myself that we had left the morning news running in the background during breakfast. We were scrambling, like every weekday morning, to catch traffic and weather before the commute to Manhattan while simultaneously getting three children ready for school. I quickly noted that U.S. Senator Bob Casey was being interviewed about a recent, tragic bullying incident, but then shut off the television, making a mental note to catch the story on my iPad later while in transit. These stories cut deeply for me.
Born with ectrodactyly, leaving me with a single finger on each hand, shortened forearms and a single toe on each foot, and with two of my three children also born with the same condition, the thought of a child being bullied and harmed hits home. Not that this type of cruelty has happened often, thankfully, to our family. But I immediately recalled the day in 1st grade when our oldest son, Ethan, was surrounded on the playground by five fourth graders who taunted him about his misshapen hands. Little did they realize his feet were just as different. The worst part was that he simply wanted to walk away from these mean kids but couldn’t. He was surrounded and intimidated. Fortunately, his best friend came and grabbed Ethan by the hand and loudly declared that the bell had just rung. He then pushed our son through the wall of older boys to safety. When we heard that afternoon what had happened, my husband, John, and I both felt numb; the pain of feeling that your child is being mistreated just for being himself, was excruciating.
Sitting on the commuter train that morning to Manhattan, tears began to stream steadily down my cheeks as I read the article from the morning news about Bailey O’Neill, an eleven-year-old boy from Pennsylvania who had just died. Bailey’s father, Rob, said his only child was punched during a bullying incident at recess at school on January 10, 2013. He said Bailey, a 6th grader, suffered a fractured nose, a concussion and seizures from the attack. Two weeks after the incident, he was placed in a medically induced coma. Bailey’s parents wanted him to see his 12th birthday, but as hope of his recovery faded, they took him off life support. “Honestly, I just miss sitting with him on the couch,” said O’Neill, 39. “I won’t hear ‘Daddy’ anymore. That’s tough.” During the interview, O’Neill said his son told him that one boy pushed him into another boy who punched him. His son didn’t want to fight, he said. “He wanted to walk away and couldn’t,” he said. “If someone wants to walk away, let them walk away.”
The report turned to the valiant efforts of Senator Bob Casey (D-PA) and Senator Mark Kirk (R-IL) to pass the Safe Schools Improvement Act. Said Casey, the bill, “will require school districts that receive federal funding to develop codes of conduct that specifically ban bullying and harassment. This includes cyber-bullying and bullying based on a student’s actual or perceived race, color, national origin, sex, disability, sexual orientation, gender identity or religion. Putting an end to bullying will require a consistent message from adults, including lawmakers, that young people can make a real difference in their lives and the lives of others when they speak up about bullying and harassment.”
As I thought about the Act and its potential impact, I recalled a recent exchange in our car between Ethan and one of his friends. “Ethan, are you going to play baseball this year?” Although his younger brother Charlie, born with two fingers on each of his more-developed hands is now playing for the first time this season, Ethan had considered the challenges of using a glove and self-selected himself out of the sport. “Nah, I think I will stick with tennis and basketball”, he replied. I later learned that his friend felt badly for seeming insensitive on the baseball subject. In reality, Ethan was unfazed by the conversation and never thought of it again. In speaking with the boy’s mother, I expressed my appreciation for the fact that her son had simply forgotten about Ethan’s difference which is why he assumed baseball was an option. I explained that I enjoy the same moment when friends casually suggest that I join them at the nail salon, forgetting that with only two fingers, it wouldn’t be much of a treat for me. The fact is, when you are exposed to other people’s differences on a real and personal level, on a daily basis, they become the new normal for you. The subject becomes a non-subject. A challenge arises, however, because not everyone has the benefit of having their kids grow from a friendship that can teach about difference, without parental or governmental intervention.
That is why I began a “”Kids Flaunt” writing competition this Spring on my “Don’t Hide it, Flaunt it” site, with the theme, “The Things That Make Me Different, Make Me, Me.” The winning essays to be published on my website. Ethan and I have even kicked off the competition personally in some participating schools. As interest grew in the competition, I was really pumped up, immediately assuming that all children could identify one aspect or trait about themselves that makes them unique. They would all find something they could not only write about, but even celebrate. But yesterday I heard something that makes me feel all the more strongly that this type of direct effort to engage our children is not only useful, but necessary if we are going to reach them in a way that develops their character. It was from a parent whose child was participating in the Kids Flaunt writing competition. “Meg, this is such a great idea, but it has been interesting. There are many kids that are struggling with this, because they don’t consider themselves as even having a difference, challenged to figure out what to write about in the first place.” From her comment I understood that most children equate difference with something negative. Standing out for being different can have an unwelcome social cost and so having a difference is not something they wish to celebrate. In its worst form, kids with an aversion to appearing different, and those intent on deflecting attention from their differences, can actually be the bullies. They mete out the punishment to anyone deviating from their comfort zone and the general norm. So what is to be done?
For one thing, I am hoping that the Safe Schools Improvement Act will inspire practical engagement with children, helping them to embrace their differences, and perhaps even learn from, rather than harming one another. But there is so much more to do on a personal level. Last week, Ethan came home and showed me his own Kids Flaunt essay submission.
Here was Ethan’s last paragraph of his essay.
“My mom has a saying that I think is very important: “The Things That Make Me Different Are the Things That Make Me Me.” That phrase means that differences contribute a lot to who you are. You must learn to overcome the obstacles that your difference may have brought with it. Everybody has some kind of difference—even if I can’t see it on other people like they can see it on me. Even those kids behind the tree that bullied me for having one finger that day in 1st grade must have had some sort of difference. I just could not see it. In my case, I may have had to learn early on about how to accept myself because of my difference, but even if some believe it has been the “hard way,” I think it will be ultimately the best way.”
While I am personally grateful for Casey and Kirk’s efforts and will rejoice if the Act is passed, the reality is that even if a school has the right policy, edict or code of conduct, success will not come from the wave of a banner in a school hallway. It’s not about what children are told they should not do. It’s about having them feel that difference is a relatable subject, and that although most kids are not the victims of a bully or even the bully themselves, they are the bystanders that don’t believe it could ever happen to them, as long as they fit in.
By now, our three kids were tucked in our guest room sleeping, together in the basement. John and I decided to also sleep downstairs, nearby on the playroom couch. The wind was already howling loudly-it was practically deafening. Strangely, the only reprieve was a periodic loud noise that would jolt us. While the rain flowed steadily and hard, it was hardly audible or at least definable given the other terrifying noises outside of our home. By the next morning, I would realize the thunderous and occasional loud booming sounds were trees crashing all around….on our street, in our yard, in some cases, through the roofs of the houses of neighbors.
Earlier that day, John, the kids and I had decided to take our weekly family walk around a local park. The sun shone, yet we could feel as we walked that the wind was beginning to pickup. Reports throughout the week had shown the impending threat of Hurricane Sandy, a monstrous storm that, within hours, would devastate much of the tri-state area and significantly impact our own town. I have heard the expression, “The calm before the storm,” throughout my life. Although I didn’t voice it aloud as we walked with the kids, I knew the description applied at that moment.
That night, as I lay on the sofa, I closed my eyes, praying that any trees weakened by past year’s October snowstorm had already been removed. And then I fell into a deep sleep. When we woke up, I looked over at John who seemed to be stirring. It was our 13th wedding anniversary, but celebrating was the last thing on my mind. I ran to the basement room where the kids were sleeping. They were already up, hanging out, talking together in bed. “Mom, the lights are still out!” The irony of my next thought would only hit me months later. Collectively, Ethan, Charlie and I are missing a total of forty-two fingers and toes. Yet, as John and I rushed over and hugged our children, I said a silent prayer of thanks. After all, my family, thankfully, was fully in-tact.
I looked outside. There were some trees and branches down, but everything otherwise seemed okay. With no ability to turn on the news, we had yet to learn that the storm proved to be more of a monster than we could tell, at least from our immediate vantage. Although losing power for almost two weeks was difficult, we were so grateful that our friends with generators opened up their homes to us unconditionally. Unlike ours, many towns were flooded by the Hurricane, utterly devastated within minutes. But the storm also brought out the best in people with many acts of kindness exhibited across the area. And I had seen it many times in past crises when people from all over the U.S. were inspired to send needed goods, or even travel far distances to lend a hand. It was as if when tragedy strikes, somehow an internal alarm bell seems to ring, with masses of people ready to help one another, all for the common good.
Last month I was running to make the NJ transit train home from Grand Central. It happened to be Valentine’s Day, but that was hardly my priority. I knew that Savanna went home from gymnastics early not feeling well, and I rushed to make an earlier train to make sure she spent the last few hours of her day with me by her side. As I sprinted past other commuters, I noticed a young woman sitting on the floor. She had a sign that simply read, “Please help us.” Next to her was a young child around the age of three sleeping next to her. I stopped in my tracks, instantly choked up. I thought about the most recent, “Pay It Forward” moment I recently mentioned in a blog, where yet another conductor assumed I should receive the discount fare based on my physical difference. I reached into my wallet, and grabbed a $5.00 bill, handing it to the woman. “Happy Valentine’s Day,” she softly chimed in my direction. I smiled back, but looked around and noticed that we were surrounded by countless others, simply rushing through their day, trying to get home to their loved ones. At once I felt a chill penetrate my bones, along with total confusion mixed with sorrow. I felt cold at the thought of her and her young child sitting on the stone, uncomfortable floor, with no better alternative. Sorrow for the scene, as one mother to another, and confusion about how everyone else could simply be passing her by. While I appreciate that it is unrealistic to think that everyone would stop to help yet another homeless person in New York, this felt different. Perhaps because it was Valentine’s Day, I felt like this was a day especially devoted to love.
During the train ride home, I thought further on the “Pay it Forward” concept. I began to think about how after times of terror or crisis, people admirably leap into action to help one another. I even remembered that after the Newtown CT school shooting in December, Ann Curry tweeted, “Imagine if all of us committed 20 acts of kindness to honor each child lost. I’m in if you’re in.” The tweet prompted a flurry of supportive comments and initiatives in response. While it was heartwarming and wonderful, I couldn’t help but feel a little disappointed. I thought the responses to Curry’s effort were great, but asked myself, “Why can’t more people simply be kind just for the sake of kindness? Why does it have to take a natural disaster or horrific tragedy to prompt a genuine act of kindness?” That’s not to say that people aren’t doing good things every day, without prompting. There is Jeremiah Anthony, the teen who set up a “West Bros High” Twitter account to send compliments and flattering messages to other students aimed at raising their self-esteem and to counter bullying. His effort is ingenious and inspiring. And there are others like that, to be sure.
Back on the train the next morning, another experience helped to form an answer to my question. Although this time I was armed with a ticket, yet another train conductor noticed my hands. He leaned over in my ear, “Excuse me Miss, but you really should consider not paying the full price for tickets. Why do it if you don’t have to?” He offered with a wink and a genuine smile. In that moment, (and yes, I enjoyed his calling me “Miss” and not “Ma’am,”) it dawned on me that I’m being too hard on humanity. Even if they aren’t a Jeremiah Anthony, people are self-motivated to be kind to one another all the time. Although collective acts of kindness in times of tragedy may grab more attention, there is so much more going on. In my case, my physical difference actually often brings these efforts out in people, in ways that I used to resent, but now appreciate on a different level. And it’s not just from train conductors. Later the same day I tried to give money to a homeless woman on the subway. I was admittedly taken aback when she took one look at my hands and tried to return the donation. She was showing me her kindness, I suppose, and imagined I needed the money more given my physical difference. And then the most meaningful act of kindness happened to me the following week. A blog follower named Douglas Jones (whom I have never had the privilege of meeting) paid attention to my recent Facebook posts about how cold my hands have been in the frigid winter air. Douglas knitted me a pair of custom-made warm black angora mittens, and mailed them to me. The mittens are in a word, perfect. And then, so floored by Doug’s act of kindness to me, it inspired my dear friend Ayala, founder of “Evelyn’s Kitchen,” to send goodies to Douglas on my behalf.
I no longer feel cold, inside or out.
My brother Ted came to visit recently, and when it was time for him to leave, I drove him to the train station. However, I knew we were cutting it close. “Ted, what time did you say your train was leaving?” “In four minutes,” he responded a bit anxiously. “And I still have to get a ticket.” At that, I reached into my bag and grabbed one of my pre-purchased tickets to New York. “Ted, take this.” He tried to refuse, but I insisted. “Teddy, come to think of it, I took a train ride the other day and they were short a train conductor so no one came to collect my ticket. I’m going to Pay It Forward with you. “Gee Meg, thanks.” And then, he looked at me with a huge grin. “Come to think of it, if these are the perks, your Pay it Forward efforts makes people really want to hang around you A LOT!” We both laughed as he fled from my car, easily making his train.
It was around 7pm, and my brothers and I were sitting, gathered in my paternal grandmother’s (“the little grandma’s”) one-bedroom apartment on 54th and 3rd avenue. My grandfather, who suffered for years after enduring a stroke soon after I was born, had recently passed. Both of my parents grew up in New York City, and even though they raised us in Illinois (and abroad) and my relatives would come visit, these summer visits back to the City to see our relatives were always the same to me, almost like coming home. As our parents and other adult family members chatted about nothing of interest (at least to us kids), Peter, Teddy and I sat on the floor to watch the “Wizard of Oz” for the first time, on our grandmother’s black and white television.
The movie kept me captivated, especially the music. But what stood out the most to me were Dorothy’s glowing and sparkly red slippers. They were the prettiest shoes I had ever seen, and I was instantly in love with them. Remembering my own lot in life, I quickly altered my position, so that I was now sitting on my legs with my tiny brown shoe-boots pressed up against my buttocks. With my feet now hidden, I daydreamed that I was Dorothy, and pictured myself wearing those sparkling red shoes.
“Meggie, boys, come say good-bye.” It was my Dad, beckoning me and my brothers to the door as everyone else began to leave the apartment for the night. Startled, I quickly rose and was snapped out of my unrealistic fantasy. But despite only being ten and allowing myself to fantasize on occasion, I already knew and had come to accept that anything that looked as sparkly and beautiful as those red shoes were out of reach, at least for me. I already knew there were much more important things in life.
I stared at the beautiful black patent leather shoes that had been tucked away in Savanna’s closet for months. “Found them!” I called out. We had been getting ready for John to take her to the “Father-Daughter” dance being held that evening at her kindergarten. Although her dress had been hanging in anticipation outside of her closet for weeks, I assumed her “fancy” shoes would still fit. I assumed wrongly. “Mommy, they hurt my feet,” she announced rather matter-of-factly. I grunted with disappointment, but called out to our sitter to see if she could run out and buy her another black pair in the next size. As Savanna and I sat alone together, she began to try and soothe my feelings, as she often tries to do when she sees me looking unhappy. “Mommy, don’t worry. It will be fine. The next pair will be pretty too and fit me!” She was right about that, but not what I was really fretting about. How do I teach my daughter, born without any apparent visible imperfection (unlike her mom and brothers), that you can’t always get what you want? That lesson had come to me without any parental intervention.
This past Sunday, I watched the Academy Awards show. Another year, another evening of glam, which for me never disappoints. Earlier in the day while working out, I caught the host of the E! Entertainment Channel showcasing high-end shoe designers, suggesting eye-catching designs worthy of Oscar’s red carpet. One model wore a pair of heels brilliantly designed with gold and glitz, compliments of the masterful Jimmy Choo. Even though it was the shape of an ankle-boot (within the realm of my possibilities), they had many peep-holes making it an impossible fit for the shape of my small, one-toed feet. Another model appeared wearing a stunning favorite– a pair of sparkling raspberry red shoes, with matching glittery bows. Instantly they reminded me of Dorothy’s red ruby slippers from the Wizard of Oz. I chuckled to myself as the E! Host suggested that it was not too late to head to the local mall and find a similar pair of dazzling footwear. “Not likely!” I practically said aloud. And then as I sat down to read the New York Times, I admittedly headed to the Style & Fashion section, one of my favorite Sunday morning activities. I smiled as I noted a new T Magazine Blog called, “The Daily Shoe,” making a mental note that it is a good thing I have this (lack of) finger-toe thing going for me, since I would have trouble running a weekly blog suggesting new varieties of shoe styles women would want to wear.
That night after the Awards show ended, long after John fell asleep, I stayed awake and remained on a natural high, thinking about all the beautiful outfits I had just seen. Nevertheless, as much as I love the look of beautiful shoes, the pleasure of wearing them has always eluded me. But early on, this taught me one of the most important life lessons—that life is a journey where you can’t always get what you want, and things can’t always come easily for you. Even in Oz, Dorothy’s journey was less about a return to Kansas than about her spiritual journey and path to empowerment. She had been forced throughout the movie to be patient and suffer delayed gratification. Dorothy was convinced that at the end of the road, a great man named Oz would guide her home. But as it turned out, and to her deep disappointment, Oz was a fake, with no magical power. Ultimately, she discovered she would have to solve her problem with her own power. First, though, she had to learn to be open to failure, amenable to unimaginable forms of creativity and even chance. And there was an even greater benefit. Along the way, Dorothy made wonderful friends she would not otherwise have met, had she not struggled on her quest.
It was with this frame of mind I thought about our daughter Savanna. I know that as her parent, I have to ensure she does not grow to simply expect she will get everything she wants. She must learn that a snap of her fingers (or click of her heels) won’t bring the world running to her feet. The other night before bed, as I was reading her a story, my darling little six-year old grabbed my hand and said with full sincerity, “Mommy, your one finger is so cute! You are so lucky!” I turned to her warmly. “Honey, thanks. I am lucky, but not because my fingers are cute or not. It’s because I have learned from having fewer fingers and toes, it means we’re not always meant to have everything.” “Why?” Almost stumped, I channeled what I knew best…great lyrics (from the Rolling Stones).
I turned to her and gave it my best shot. “You can’t always get what you want, Savanna. But if you try sometime, and follow the path made just for you, you just might find, you get what you need.”
I held on to my favorite monkey, “Monkey Biz.” Sean had his arms around “Froggy,” who was wearing one of my younger brother Ted’s shirts that he had outgrown. I looked up at my friend, and stared. Sean and I had come to my house to play with my stuffed animals after school. He was blond, with blue eyes, a beautiful face and sweet disposition. Our parents had been friends for years, and so our relationship was always comfortable. Although my family would move away for long stretches of time, we always returned to Urbana and slipped back into old friendships. Although I had known Sean for what seemed like a long time, this visit was the first time I noticed that he had a rather large scar spanning his forehead. Only now, forty years later, do I see the irony of the one-fingered girl staring transfixed at another child over a mere scar. Years later Sean’s mom recalled taking us both grocery shopping one day. My hands were visible and Sean’s head was bandaged post surgery. No one bothered to ask questions—they all just stared.
“What happened to your forehead?” I asked him directly. “Why does it look like that?” “I had to have surgery when I was a baby to fix something that was on my forehead, to make it look better.” In actuality, Sean’s scar was quite minor. Although I was too young at the time to appreciate, it was clear to the older folks that Sean presumably had had a skin graft. We continued playing together, but in that moment I became very subdued. It was most likely the first time it occurred to me that others that were born with or had a physical difference could actually try and fix the abnormality.
I, on the other hand, was stuck.
The other day I read a story in the paper that caught my attention. It was about a woman named Anita Adams who has a condition known as “heterochromia.” While the name may sound as impactful as, say, “ectrodactyly,” in fact it reflects people who are born with two different colored Irises. About five years ago, Adams, now 41, began to search for an online solution. Her goal was simple, she wanted her irises to match. Adams finally found a company that might be able to satisfy her desire. The company, New Color Iris based in Panama, could apparently implant an artificial or prosthetic iris over her natural one. Despite the fact that the device was not approved by the Food and Drug Administration, nor were there any clinical studies or peer-reviewed publications about it, she flew to Panama anyway. Despite the risks, which were described in the article, Ms. Adams was “determined to fix her perceived imperfection.” At first, she was content with the results of the procedure. However, within two years, her vision began to grow spotty. Ultimately, the procedure led to her being diagnosed with glaucoma and cataracts. She had to have the implants removed in early 2011, at a cost of $5,000, which was not covered by insurance. She said that although her sight is better, now her pupils are kind of oblong instead of round and her corneas are scratched. Her eyes are back to their original different colors but she is much worse for wear.
And then I read about a fourteen-year-old girl named Nadia Ilse who was form with “dumbo-like” protruding ears. In an interview on Good Morning America (ABC) last summer, Nadia said her physical difference resulted in her being constantly bullied in school. In fact, she was so upset by the teasing that “she began to believe the negativity and began to consider suicide.” But then, a plastic surgeon heard about Nadia and she was operated on two months before the interview. When the doctor was asked why he found Nadia’s story compelling, he replied, “She wasn’t picked to have her surgery because she was bullied. She was picked for her surgery because of her deformities.” According to Nadia’s mother, “It was just something that we chose to do. It is no different than somebody having teeth that requires braces. Interestingly, Nadia’s story drew a combination of support, but also significant criticism and controversy online after the interview. “If this girl was not bullied, would she have even thought about cosmetic surgery?” And, “What will they make fun of next? Her clothes, her make-up, her hair? Should she change all these things to make others happy?” Yet others with a similar experience defended Nadia. “I had my ears pinned back when I was eleven in 1977. I was bullied before surgery and it was the best thing my Mom could have done for me.”
After reading about Anita Adams and her quest for perfection, and Nadia Ilse’s option for surgery to improve her appearance, both stories reminded me of many situations where people I have known have removed blemishes and scars not only to remove imperfections, but to look “normal.” Whether it is to feel better about themselves or to avoid being judged (or having their children judged), or both, it makes no difference, in my opinion. Admittedly, in the past my first reaction was pure jealousy. The thought that someone could wipe away physical imperfection with a simple (or even more complex and expensive) visit to a doctor was, at times, hard for me to swallow. And even though Ms. Adams’ attempt at perfection was a failure, there are countless other examples of people fixing themselves or their children with success, such as in the case of Nadia.
Before I tell you my take on this whole subject, allow me to share another story that a friend recently passed to me. It is about a young woman named Lizzie Valesquez. Although now in college, when Lizzie was in high school she was nastily dubbed, “The World’s Ugliest Woman” in a YouTube video. In fact, Lizzie was born with a rare condition that left her with no adipose tissue, and without the ability to store muscle, among other things. The comments on YouTube were vicious. Viewers called her “it” and “monster” and encouraged her to kill herself. Instead, Velasquez set four goals: To become a motivational speaker, to publish a book, to graduate college, and to build a family and a career for herself. Already at the age of 23 she has been a motivational speaker for years and is about to publish her second book, “Be Beautiful, Be You.”
When I read more about Lizzie and her outlook on life, well, she reminds me a bit of……me! In her recently on CNN to Dr. Drew Pinsky, Lizzie said, “The stares are what I’m really dealing with….but I think I’m getting to the point where… instead of sitting by and watching people judge me, I’m starting to want to go up to these people and introduce myself or give them my card and say, ‘Hi, I’m Lizzie. Maybe you should stop staring and start learning.”
And then there is also a young girl named Jordan about whom I have read a lot (her Mom Jen just wrote a Guest Flaunt for my site and blogs at: www.bornjustright.com). Jordan was born missing part of her left arm. Without the ability to “fix” her difference, she has become a role model to those who know her. In fact, she recently won the “WIN” (Women’s Intersport Network) Columbia Inspiration Award, presented to her by Olympic athlete, Jackie Joyner Kersee. I got the chance to speak with Jen recently. Jordan’s mom told me that already at the age of seven, Jordan serves as a mentor to other kids, helping them to feel proud of who they are, no matter their difference.
So here is what I think. Many people, often understandably, find themselves looking different because of anything from a transient blemish to acne to something much more severe. Although I have discovered first-hand the immense value, and even blessing, to be had from walking this earth with a blatant deformity, I appreciate how someone would want to take advantage of what is medically available to correct their own (or their child’s) imperfection. And as I just wrote, I have frankly been a bit envious in the past. As a young child, I wondered (naively) whether my missing fingers would suddenly blossom. As a teen, if you told me I could add eight fingers and eight toes, I would have certainly explored the idea. However, by not having the ability to alter my appearance, it forced me, as well as Lizzie and Jordan and countless others, to embrace our differences and even have the privilege of inspiring others just by being ourselves! There is no question living in this camp is harder; it takes a lot of strength for sure. Although it admittedly took me years to get here, I am actually relieved I couldn’t fix my own physical difference.
To me, as I flaunt who I am and how I was naturally created (and teach my children to accept their lot in life with pride), I feel my inherent value more intently and beautifully than any benefit surgery could offer.
“The mediocre teacher tells. The good teacher explains. The superior teacher demonstrates. The great teacher inspires.” William Arthur Ward
I looked around the cabin. There were sixteen girls in total, all around fourteen and fifteen years old. We had just sat outside by the lake surrounding the High School Girls Division at Interlochen National Music Camp in MI and watched the sunset. It was our first night of an eight week session. Having experienced the phenomenal talent and energy at Interlochen as a teenage camper myself, I was thrilled to have gotten a job as a counselor in the High School Division for the summer before my sophomore year in college.
Earlier in the day, as each girl arrived and said goodbye to her parents, I greeted them with a smile and a hug, “Welcome to the best summer of your life!” I would call out, sincerely. Their reactions to me and my two fingers (total) spanned the spectrum. One was completely taken aback, even visibly staring. Most others took a quick look but then carried on with pulling their trunk and other personal belongings into the cabin. Finally, several did not even flinch, stare or quite frankly, seem to notice my difference. With all the commotion going on, it is quite possible they didn’t, at least not in that moment.
“Girls,” I said loudly enough that the cabin became quiet, and for the first time we could hear the sounds of nature outside the windows. “Everyone climb in your beds. I want us to get to know one another. Let’s go around the room and I want each of you to share something about yourself that would be interesting to everyone else. I will start, to get it going.” As much as I was interested in hearing from each camper, this activity was completely pre-calculated. Here was my chance to get my physical difference out in the open. But I purposefully only wanted to take a few minutes about me and then move on. “For those of you wondering, the reason I only have one finger on each hand and one toe on each foot, is because I was born this way. No one else in my family has ever been born looking this way, so I am not sure what caused it.” Back then, I still didn’t even know the name of my condition (ectrodactyly), nor did I believe it was genetic. I was sure my mother never took the drug Thalidomide, which was used about that time to treat morning sickness but actually resulted in unexpected and severe limb deformities in newborns. Rather, as far as I knew, there was no reason for my condition, although I remember even believing at one point that perhaps my mom ate some bad fish while pregnant with me and somehow that could’ve affected my development in utero. As I continued to talk, the girls remained completely silent. “The most important thing for you to all know is that we can talk about my difference as much or as little as you want. It can be all together or one on one. Mostly, I want you to all know that it is simply a part of me, but nothing that I allow to hold myself back. I can do pretty much everything…okay, well maybe not the flute!” At that point, a burst of welcome laughter came out from the girls. I smiled, and with that we went around the room so I could hear a litany of stories—two girls that were adopted, one that was afraid of the dark, another so grateful to have gotten a scholarship to come, one whose family was moving to California at the end of the summer, and so forth.
Right before I closed my eyes that night, a huge sense of relief swarmed me. The conversation with the girls went well, as I had expected. Throughout the summer, my relationship with each girl in my cabin blossomed, and often they would even leave me anonymous notes on my bed…just because. After all, by the time a girl was a teenager, she had much more important things on her mind than the fact that her counselor was born digitally challenged!
Recently, my good friend Larry remarked, “Meg, I am almost surprised you did not become a teacher. With all your life experience, there is so much you could have done to impact kids you would have taught, just by being you!” The timing of his words was uncanny. Recently I posted a Guest Flaunt from a woman named Kristy Desilets who is a 5th grade teacher in Boston. Kristy’s “difference” is that she was born missing one of her hands. In the piece, Kristy acknowledged that “having half the fingers of the average person is different, and differences do attract attention, initially.” She went on to describe her “show and tell” strategy on the first day of school of every year. Essentially, she gives a two-minute talk about her (lack of) hand, and then opens up the floor for questions. Once questions are asked, Kristy explained, the class can move on “with no one left wondering or distracted.” Now in her fourth year in the same school system, many kids have heard about Kristy’s physical difference before even entering her classroom. In some respects, there has even been such a positive reaction that one of her student’s tells her how much she loves Kristy’s difference.
I met Kristy for the first time in Boston at the Helping Hands Foundation event in January. Right after I presented, Kristy quickly approached me and informed me she was an elementary school teacher. What she doesn’t know is that from the moment we met a pang of jealousy passed through me. To put it in perspective, teaching was in my family’s blood, at all levels. My father was a Political Science professor, my mother taught English at Bronx High School of Science and before she passed, my grandmother had taught grade school children in the Bronx. Once my older brother Peter and I even visited her school. I was fascinated how my grandmother was able to take total control of the room, with her students hanging on her every word. I also recall getting stuck in her school’s bathroom—the door too heavy for my small hands to open independently—but I digress.
As Kristy spoke to me with animation about her class and her particular desire to meet my own 5th grader, Ethan, my mind raced back to a time years before, when I myself was initially drawn to the field of teaching. But it was not meant to be. The reason? I could not fathom having to have students come up to me constantly asking me about my hands (and feet, given my tiny shoe size). And although I knew that over time the children might become comfortable, the next year would bring the same stares, the same whispers, the same questions. Although it is ironic that Kristy and I developed the same type of “two-minute” talk before discussing our difference with a group as I did back at Interlochen that summer, I was not even willing to open myself to that unless the ‘kids’ were teenagers.
Years have passed, and although I had purposefully decided to pursue a legal career, ensuring I would be surrounded by adults at least professionally, it only now strikes me how the decision to “hide” rather than “flaunt” my difference has had more ripple effects than I could have anticipated. The irony is, when I used to think about being a teacher, I imagined my classroom filled with inspiring quotes on the walls. My favorite was from A.A. Milne, when Christopher Robin says to Pooh, “Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.” I always imagined it would be plastered on the wall for my class to admire and digest as we progressed throughout the year.
Thankfully, wonderful people like Kristy have had the ability to embrace who and what they are, long before I ever was able at the same age. If we are most fortunate, strong, self-loving and confident people like Kristy become teachers, allowing our children to benefit from a life experience and insight no teacher’s manual could ever mimic. When I think about the true lessons she offers her pupils from year to year, Kristy and teachers like her need no inspiring quotes or special gimmicks on a classroom wall to motivate.
Rather, they inspire the instant they enter the classroom.
I was mesmerized. Michelle Johnson, a senior at Cairo American College, the K-12 international school in Egypt where my brothers and I attended, was belting out the title song of, “Hello Dolly.” Michelle’s voice was more beautiful than anything I had ever heard, at least in person. To attend the performance at CAC, my family and I had walked a mile and a half on a dirt road from our apartment. As we sat and listened, I noticed that a mother had brought a toddler, who continually whined on her lap throughout the performance. Although the child was distracting, I tried my best to pay close attention to ‘Dolly.’ Her voice brilliant and clear, with perfect pitch and the most gripping tone.
Yet, as beautiful as Michelle’s voice was, I was actually even more captivated by something beyond her musical prowess……her stage presence. There must have been at least one hundred and fifty people in the audience and, rather than appearing nervous, Michelle was consumed in the moment. She was clearly a natural on the stage and undeniably comfortable in her own skin, despite the large crowd of eyes on her. For some reason, even though many of us continued to find the toddler distracting, Michelle was able to perform without seeming to even notice the disruption.
The next day, my family took a trip to Giza to see the Pyramids. As we climbed the narrow passageway, up a dark and rocky stairway toward the King’s Chamber, I became distracted, less focused on the historical significance that awaited me, and instead consumed with the performance from the prior night. I realized that Michelle had a special talent that I needed: the ability to perform publically. It’s not that I had any strong ambitions to run for office or sing on Broadway. Rather, I began to understand that being fearless in front of others was a valuable skill on its own. Although while growing up I had always loved to sing while my dad would accompany me on the piano, it never occurred to me that a performer on stage or in a public setting must morph into someone who cannot worry about what others are thinking of them. In that instant, or for that point in time, as long as they were doing something they felt passionate about, they effectively could remove themselves from any feelings of nervousness, anxiety or stress. In their comfort zone, performers could ignore judgments and were free to be themselves.
From that day forward, I leveraged my own singing talents and began to study voice. Years later, I would join the Madrigals in my own high school, sing on Kresge stage at the Interlochen Performing Arts Camp, and even on stage while in Law School. Over time and with practice, singing became a terrific outlet for me. Although during those days in Cairo, and later as a teen and young adult, I was nowhere near ready to start flaunting my difference, I loved the feeling of being on stage, where all my fears about the way people might be perceiving me evaporated, at least for the moment.
The other day I watched a previously recorded episode of the FOX show, American Idol. Even before it began, I had heard from a friend that there was a teenager named Lazaro Arbos. Arbos had a significant stutter, and a painful back story. A Cuban immigrant who arrived in the U.S. as a young child with his parents, Arbos had been stuttering ever since. Although his parents fully expected him to grow out of it, he never did. On Idol, prior to his performance, Arbos and his parents described a quite lonely childhood, where he was frequently the object of pity, and typically friendless. According to his mother, Arbos’ stuttering became so acute that often times the only thing that enabled him to communicate was when he would sing. “Without music he couldn’t have survived,” added his father. During the American Idol interview, Arbos stammered repeatedly. “Stut-tut-tut-tut-tut-tut-ering is really hard,” he said. “It’s like a r-r-r-r-rollercoaster.” But when he started to croon “Bridge over Troubled Water” for the panel of judges, it was almost impossible to believe that this was the same person singing. I read one article that captured it well. “The amazingly fluent performance brought to mind the scene in the movie “The King’s Speech,” when Geoffrey Rush’s character puts headphones blasting with music on Colin Firth and asks him to recite passages out loud…which he does perfectly.”
But that was not the only reminder on point. Just a few weeks ago, I posted a Guest Flaunt written by Rabbi Ari Rosenberg. Rabbi Rosenberg wrote about growing up with “a stutter so severe, there were discussions about whether I would ever be able to chant Torah, or even read English at my Bar Mitzvah.” Overall, the Guest Flaunt helped readers fully understand what it would be like to have such a severe speech impediment. “The words would be in my head…bottlenecked like Friday traffic…..,” he described. Beyond providing us insight, I was particularly taken with Rabbi Rosenberg’s passion for Hebrew and ultimate discovery that his speaking difficulties began to diminish when he spoke outside of his native tongue in the language he loved the most.
Most importantly, Rabbi Rosenberg advised that he lost his stutter when he became comfortable in his own skin. Both of these stories resonated deeply with me. When someone discovers his passion, it can produce miraculous results. My love for singing allowed me to learn to perform publically, never once giving thought to how my hands looked while I was on stage. It seems that when we identify and allow ourselves to experience those things we love doing the most, we are at our strongest, and most able to move through our anxieties, our hiding, our stuttering, and all the rest. That’s when we can finally be seen for our accomplishments, rather than our impairments.
This post is dedicated to Michelle Johnson, the Executive Producer and Owner of Diva Las Vegas Productions. If anyone is in Las Vegas, make sure to see Michelle perform! And, a special thanks to Facebook, for helping me reconnect with friends I lived with from all over the globe and who I otherwise would never have located.
January 26th, 2013
“Find Your Greatness!” I was sharing this slogan at the Helping Hands Foundation (HHF) annual winter conference in Boston held this past weekend. It was borrowed from the fantastic Nike commercial made of Nate Muehe, a twelve-year-old baseball player who just happened to be born missing part of his left arm. See him on YouTube:
During my talk, I decided to embarrass myself. I confessed that, despite my efforts to help others similarly born with a blatant physical difference to believe in their abilities and ignore other people’s assumptions, I had not walked the walk in my own home. Although I am not proud of this, I explained to the audience that when Charlie, our seven-year-old (who only has two fingers on each hand), expressed a desire to play baseball last Spring, I encouraged him instead to play soccer. Even basketball seemed like a more realistic option for sure. His older brother, who shares our genetic condition had already proven to be a good basketball and soccer player. Nevertheless, Charlie insisted that he wanted to try baseball. Over the summer he and my husband began to hit balls with a bat in our backyard and we both noticed that not only did he appear to have talent, he clearly enjoyed the game. But when Charlie persisted, I wavered………not being able to imagine how his hand would fit into a glove. Fortunately for us, our son assumed that we would solve that problem and didn’t spend his time worrying about it. In the end, Charlie dragged us to Sports Authority, found a glove that was somehow flexible enough to fit, and he has been participating in baseball clinics and private lessons ever since, preparing himself for the forthcoming Spring baseball season.
After my talk at HHF, a boy (I believe his name is Alex) came up to me with his family. By his appearance, he looked to have the same physical difference as Nate. Alex was around twelve, friendly, with a clearly beautiful disposition and great sense of humor. He was also eager to write for my site. Like Nate, Alex had already been playing baseball for years and was fortunate enough to have been raised by supportive parents willing to let go and follow his lead. After chatting with Alex’s parents, too, it was clear that ever since he expressed an interest in playing baseball at age four, they embraced his ambition, choosing to believe he could play baseball like any other kid, just in his own way. In fact, Alex was so enthusiastic about sharing his great baseball experience with Charlie that he offered for Charlie to come meet with him and practice one day with his team.
I also thought of Zach Hamm, who I have written about (Heroes Among Us, Feb 2012) who not only plays golf despite his physical differences, but started his own Golf Classic in Texas. In that moment I decided this week to add a “Kids Flaunt” to my site to feature such stories. I cannot wait to read from kids ready to flaunt not only who they are, but how their differences have shaped their lives.
The other day as I was trying to brainstorm ways I could get my site’s new “Kids Flaunt” up and running, I decided to reach out to a friend whose 6th grade son has Down’s Syndrome. Sticking with the theme of baseball, at least for now, I knew her child is mainstreamed and plays on a team with kids from his public school. When I asked if her son might be interested in writing a “Kids Flaunt” for me, her response not only intrigued me, it resonated with me. “Meg, I’m not sure that he knows he has a difference.” I get that. Even for those of us that realize we have a difference, we are certainly not focused on it.
Stepping back momentarily to the morning after I spoke to the families at HHF, I caught a story on the morning news from the Education Secretary, Arne Duncan, who had recently offered new Guidance. In a groundbreaking order, Duncan stipulated that, “Students with disabilities must be given a fair shot to play on traditional sports teams…if officials can make reasonable modifications to accommodate them. If those adjustments would fundamentally alter a sport or give the student an advantage, the school must make available parallel and comparable athletic programs.” When I heard the report, I instantly thought of Oscar Pistorious, wondering whether his participation in the Summer Olympics in London this past summer paved the way for this forward-thinking pronouncement from the Education Department. Although Pistorius’ own mainstreamed participation was not without controversy, I wrote in my “Blade Runner” post (July 27, 2012) that ….”any type of unfair advantage in the end was beside the point. The inspirational downstream impact from Pistorius’ very participation in the Games cannot be mimicked. He stands for the principal of inclusion. He defies expectations…..and in doing so, forces us to reconsider the boundaries and definition of normal.”
Whether inspired by Pistorius or not (I like to think so), all of a sudden the significance of Mr. Duncan’s efforts occurred to me. If those of us that are parents with children differently-abled have the confidence, the willingness, let’s face it– the guts, to allow our children to find and ultimately flaunt their greatness (e.g., via sports), the importance of them being able to play on “traditional” sports teams becomes not only ideal, but essential. After all, although any child who experiences life with a difference may look and even behave differently to the outside world, he or she is simply functioning within his or her own definition of normal, capable of doing everything, within their means. Here’s the reality check: Our kids don’t necessarily assume they are meaningfully different, less able, or meant to be isolated, until the world intrudes. Watch Oscar. Admire Nate. Read about Alex. Check out Charlie! http://youtu.be/hB5K_jya0OA
Let’s together, discover all their greatness.
I was more than thrilled. His name was Eric and he was blond with deep blue eyes, not to mention extremely tall—around 6’3”. It was a Friday night, and my close friend, Lia, and I were at the Kollege Klub, a bar close to the University on N. Lake Street in Madison, WI, hanging out with some other sorority sisters. Lia and I were, in a word, dorks. We met at the Kappa Kappa Gamma sorority house during my sophomore year. While everyone else’s favorite drink was either pop (soda to everyone except people from the Midwest) or beer, we had a deep love and appreciation for cold milk. In fact, we met in the Kappa kitchen. The first time I saw what would turn out to be my life-long friend, she was slurping her milk from a glass at a table from across the room as I was similarly slurping mine.
Despite our aversion to alcohol, we still chose to hang out at the bars because they were a huge part of the undergrad social scene. “Meg, don’t look now but that tall guy is looking at you. He seems interested.” Knowing that my closest pal was around 5’10” herself, I knew she thought he was tall, he must’ve been towering. At that point, however, I assumed his interest was most likely curiosity about my very different-looking hands. But then I felt a slight tap on my shoulder. “Hi, I am Eric. This is my friend Matt. Mind if we sit here?” It was then I noticed that Eric was on crutches. “Here-take my chair!” I replied. Eric thanked me but refused, despite his injury. Instead, he and his friend both stood next to us and we all ended up talking for quite some time. Eric had injured his leg at a game the week before. At one point, Lia left to talk to another sorority sister, and at the same moment Eric’s friend Matt excused himself. I, admittedly, was quite smitten. Eric was on the University’s Men’s Varsity soccer team. He had the build of a star athlete, and was adorable. About ten minutes later I heard my friend beckoning. “C’mon, Meg Let’s go!” Lia began to take my hand to leave. I hesitated, unsure of her rush. “I’ll call you, Meg,” Eric shouted after us. I had already given him my number.
As we walked together up Langdon Street, Lia looked me directly in the eyes. “What a jerk!” “What do you mean?” I replied with genuine surprise. “Meg, didn’t you notice how arrogant Eric was? He couldn’t stop talking about himself.” My heart sank. Eric had already asked me out on a date, and I had accepted instantly back at the KK. When I informed Lia, her reaction was swift. “You just CANNOT go on a date with him. He is not interested in you—except maybe seeing how far he can get with you…..I just know it.” I became angry. “Why are you judging him merely based on the way he looks? Just because he is a jock and seems cocky doesn’t mean that is the whole package?” Here was my best friend in the world and she didn’t get it. Having the opportunity to go on a date with such an attractive guy was a highlight for me. Even if it turned out he was a creep, most guys that cute held no interest in dating someone like me, so physically imperfect. So I insisted on going and Lia backed down, even loaning me one of her cutest outfits for the date (after all, differences aside, we both knew I needed to look good for the date).
The next weekend, I went out with Eric. There is not much more to say except that Lia was right. He had been arrogant and creepy. My infatuation was over. When I returned to the Kappa House I expected to find Lia gloating about how right she had been. I was mistaken. I hadn’t trusted her judgment, and by the time I returned, she had enough time to stew on that point and work herself back into a fury. While her anger came from a place of love and protection, and she would soon get over it, that night was our first and only fight in 25 years of friendship. In hindsight, I should have listened to Lia.
Last month or so, I read in the New York Times (“Social Q”) section by Philip Galanes a brief story about a Caucasian woman named Elizabeth who began dating an Asian man. Being her second Asian boyfriend in a row, according to the woman, every person she has introduced him to has made a comment along the lines that she must have some sort of Asian fetish. Elizabeth posed the following question to Mr. Galanes: “I know that if I dated two white men in a row, nobody would even notice. How should I respond?” Galanes offered an initial humorous response, then an observation about the glaring interracial spotlight, but ultimately arrived at, “The heart wants what it wants…..Mercifully, within a date or three, hair and skin and eyes give way to actual people—with personalities and everything. Telling pals to buzz off will only alienate them.” And then he followed with an interesting quote from Terence, the ancient Roman playwright: “Nothing human is alien to me—neither the incidental features that first catch our eye, nor the way they reliably fade as we gain deeper sight.”
Bear with me. Lately I have longed to play my own version of Dear Abby. I have decided to also offer Elizabeth my thoughts.
I just read your question and Mr. Galanes’ reply in the Social Q’s section of the New York Times Style section. As a person born with a blatant physical difference (one finger on each hand, one toe on each foot if you are curious), I was intrigued by your concern about the unwelcome thoughts and comments of others. Although I appreciate Mr. Galanes’ statement that, “the heart wants what it wants,” our choices in love can still invite complications. The fact is, everybody has an opinion and they love to share . When you invite difference into your life – by whom you choose to love, or by any other method – you are bound to face unwelcome comments and judgments. Of course, to be fair, not every opinion ought to be disregarded. Some of those opinions will emanate from genuine unconditional love, and will have nothing to do with the way your date looks or the difference you have welcomed into your life.
To me, the answer to your question in wondering how to respond to unwelcome comments about your relationship is actually in the form of a question to you. Why do you care what anyone thinks? Using your own words, if you dated two white men in a row, no one would notice. But if you are truly willing to follow your heart, willing to pursue a relationship that invites unwelcome stares and scrutiny, then it is time to fully let go of what people think about you. Once you cross the invisible line and invite difference into your life, you must learn to disregard other people’s reactions or they will consume you.
And so, what is the best reaction to any insensitive comments about your relationship? No reaction. But not because getting angry might “alienate” your friends. It is because you simply are above it all. If you can get there–you will feel liberated. Your heart will not only know what it wants, but you will have made peace with your choice. If you don’t believe me, feel free to check in with my husband, who has loved me despite my difference, unconditionally, since the day we met, more than fifteen years ago.
This post is dedicated to my friend Lia. I cherish her (and her sister Laura) as the sisters I never had.
Lia is my rock and my go-to girl forever. Fortunately, Lia loved my husband John from the start.
This is also dedicated to Pauline Phillips (aka Abigail Van Buren, “Dear Abby”), who died on January 17, 2013 at the age of 94. For those that only knew her through her advice columns, Phillips should also be remembered for her dedication to (in her words a few years ago,) “equal rights for women, minorities, people with mental illness and those who are physically challenged.”
In a 1990 interview with CNN’s Larry King, Phillips explained the bottom line of dispensing advice:
“There is always an answer, even if it’s say, look, pal, you can’t change anybody but yourself. You got to play the cards that are dealt you and you have to live with this, do the best you can. But you got to accept what fate deals you.”
“Well Done is Better than Well Said” Benjamin Franklin
I could hardly believe it. In just an hour William was picking me up downstairs at the Towers, the dorm I had just moved into for my Freshman year at UW-Madison. It had already been an exciting week since I had just become a new Kappa Kappa Gama pledge. William and I had met casually on the street the evening before. I was walking down Langdon Street with my friend, Susan, and William was walking with his roommate heading in the other direction. There was really no reason that we stopped, but our eyes met and locked. “Hi—I am William and this is Mitch. We are sophomores and roommates. What’s your name?” He asked us both, looking at me. Swiftly, I shoved my two fingers into each pocket, hoping he did not notice my imperfection. Without seeming to notice my gesture or waiting to hear my name, he touched my shoulder. “Where do you live?” “The Towers,” replied Susan. Mitch responded without a pause, “Wow, we live in the Ann Emery building right across from yours on State Street.” “Nice to meet you both.” Clearly Susan had had enough chat with strangers. Although both guys were attractive, I had felt the heat between me and William rising. As they began to walk again in the opposite direction, I turned around and hollered, “Hey, my name is Meg!” My stomach tightened instantaneously; butterflies began to do summersaults. Later that night, after Susan and I had dinner downstairs in the dorm cafeteria, I got off the elevator and found an index card from William and Mitch taped to my door. It read: “Hi Meg. It was great meeting you tonight. Give us a call!” I stared at the note and the number. I tensed. Maybe they noticed my hands before I shoved them in my pockets? What a relief to think they wanted me to call despite my difference. I couldn’t be sure, and figured if I called, I would soon find out. I dialed and waited nervously, unsure of which roommate would pick up. “Hello?” It was William.
That night the conversation flowed easily, and before I knew it we had been on the phone for almost three hours. Never once did William raise my physical condition. Toward the end of the conversation, before we hung up, William had asked me out to go to the movies the following night.
He arrived the next night at the Towers and at first I forgot myself, and smiled widely. But then immediately I grew bashful, and once again shoved my hands in my pockets. As we walked down State Street toward the theater, William attempted to grab my hand to hold. I flinched, making sure to continue to hide both of my small hands, deep in my pockets. He turned to me. “Meg, what’s wrong? Did I do something?” I spent the entire date, even while sitting in the theater and as we walked all the way to my dorm, hiding my hands. Later that night, after we had parted, I got into my room, climbed onto my bed and cried. There seemed to be such a connection with William. I feared that if he discovered my difference, I would lose my chance with him.
But I wasn’t able to hide any longer. Later that night, after I had fallen asleep, the phone rang. It was William. “Meg. I really like you, but you have to tell me what is going on.” Up until that moment in my life, people typically noticed my difference and then I would have to manage their reaction. Now, for the first time, I described my condition over the phone to the guy that would become my boyfriend in college. It felt like I had just hurled myself over a cliff, not knowing how exactly I would land safely.
“We’d been once before [to Disney], the difference this time being that we were now a family of four, and that Isabella, our eldest child, would be old enough and tall enough to brave some of the more hair-raising rides; one in particular, Thunder Mountain…We were not surprised to see her picked out from the line to check her height. With a thankful sigh, she eased over the limit. But as we moved to step back in line, the guard motioned for us to return. ‘She cannot go on this ride.’ Enquiring why, we were bluntly told in an equally untactful manner that ‘She cannot go on this ride because she does not have two hands.’”
The above is an excerpt from a Guest Flaunt called, “Along for the Ride.” It was written this past summer for my Don’t Hide It Flaunt It site by a parent who lives in the United Kingdom. His words came flooding back to me this week as I watched an episode of my guilty pleasure, “The Bachelor” (ABC). One of this season’s romantic hopefuls, Sarah Herron, was born missing half of her left arm due to amniotic band syndrome. In the episode, Sean the Bachelor invited Sarah to a bungee-jump off of a skyscraper. I watched Sarah getting fitted in her harness and couldn’t help thinking to myself, “One arm, one finger or whatever, I don’t care how cute a guy is. You couldn’t pay me a million dollars to jump off a building!” Clearly not sharing my (slight) fear of heights, Sarah was game for the adventure.
When Sean and Sarah arrived safely on the ground, Sarah revealed why she was particularly grateful to have been invited to make the jump. She recalled a memory that had clearly haunted her. Years ago on a trip to Las Vegas she had planned to go bungee jumping with her father. She was excited and got as far as the harness before being told that she couldn’t jump since she has only one arm. She had been deflated and humiliated. It was an experience remarkably similar to that of the 5 year old waiting expectantly to ride Thunder Mountain but destined for disappointment.
As someone who experienced the dating scene for years with my version of a limb-difference, Sarah’s reflection gave me the chills. It reminded me how often I have encountered people whose reactions to my appearance leapt quickly from mere curiosity to audacious assumptions about my abilities and limitations. In some respects, Sarah’s willingness to jump off the skyscraper reminded me of what it is like to be born with a blatant difference. It is effectively a free-fall, where the minute your difference is noticed or revealed, you never quite know how you might land. Your greatest hope is that they will simply treat you like everyone else. But sometimes they don’t.
I would like to dedicate this post to Sarah Herron. With her willingness to go on national television in the hope of finding love she may inspire others to similarly flaunt and find a new self-confidence. And with her courage to make a 35 story jump, she may provoke some people to rethink their assumptions of what “capable” looks like.
Thoughts from Aviva Drescher (RHONY)
You couldn’t pay me a million dollars either to bungee jump!!!! In my opinion, dating is the hardest part when you have a physical difference. I spoke to a journalist this week calling Sarah “courageous” and “amazing.” I can’t imagine being 25 years old, dating and competing on a reality show with lots of women for one guy!!!! I don’t think I could have done it at her age. I was too self conscious. I didn’t have the confidence or the guts. After I told the journalist that I thought Sarah was “courageous”, I regretted it. I realized that the last thing Sarah wants to hear is how “courageous” she is because she just wants to be like everyone else!!!! She said it on air to the bachelor (Sean) and I know exactly how she feels. “Don’t look at my arm,” she is thinking…”Look at me, and my character.” Having a missing limb and having participated in a wacky reality show, I believe in my heart of hearts that the cameras, the press, the other ladies in the house and all the stupidity that comes with doing a reality show will be harder for Sarah than her missing arm and dating.
So in closing, I do think Sarah is courageous. But not because she is dating with one arm publically. That’s ultimately very manageable. Sarah is courageous, like all the other women on the show, for putting herself out there at all. Like everybody else….
I was floored. ”Why in the world would anyone feel compelled to send an insulting e-mail like that?” I had just seen a disgusted tweet from Ellen DeGeneres about Wisconsin TV anchor Jennifer Livingston’s receiving an insulting e-mail from a man named Kenneth Krause about her weight. Here is what the e-mail said:
“Hi Jennifer. It’s unusual that I see your morning show, but I did for a short time today. I was surprised indeed to witness that your physical condition hasn’t improved for many years. Surely you don’t consider yourself a suitable example for this community’s young people, girls in particular. Obesity is one of the worst choices a person can make and one of the most dangerous habits to maintain. I leave you this note hoping that you’ll reconsider your responsibility as a local public personality to present and promote a healthy lifestyle.”
Livingston gave an on-air response to Krause followed by countless national interviews and a guest spot on Ellen. “I don’t take a lot of crap from people,” she said. She recalled e-mailing back and forth with Krause a few times. But, Livingston said, Krause would not back down. “He kept saying I was a poor role model.” Ultimately Krause apologized.
I was intrigued by Livingston’s very public response to Krause’s e-mail. There was no question she had already learned not to hide, but to flaunt. Yet later that day I pondered something else about the scenario. What makes someone like Krause feel the need to speak his mind, regardless of the feelings of the recipient? Is it ever useful? More importantly—should it matter to us?
“Meg, have you ever considered the fact that people might think twice about letting you drive their children—to and from a play date for example? It’s not that I know anyone that thinks this, but perhaps some do.” That comment, although not intentionally cruel, sent me reeling into the biggest pity party I had experienced in years. I cried for hours to my husband John that night, not knowing how any person could want to say something so hurtful.
Yes, I am fully aware that people might encounter me and find themselves curious about what I might be able to do or not. I suppose one could wonder how well I manipulate a steering wheel, etc. However, until that very moment, it never occurred to me that anyone might pause before trusting me with their children because of my physical differences. The thought threw me into an emotional tailspin.
The comment actually came from an acquaintance, who perhaps felt close enough to me that she could spill whatever flavored bean she felt like tossing in my direction. Bulls-eye. All of a sudden my rosy world became a dark shade of grey. This same person happens to be particularly unfiltered on occasion, even with the best of intentions. I let her know how deeply her suggestion had stung me and she sincerely apologized for upsetting me. I appreciated her effort, and knew that at the end of the day, she was just being honest. But she is an exception—at least in her willingness to share her every thought in person. In fact, I think most people hold their judgments closely and don’t let you in on their “thought bubbles.” Only in anonymity, or at least when secure behind a screen, do people drop their pretenses. How many times do we read tweets that we know the writer would not dare to express face to face?
Social media has become a sort of technological cloak, where others suddenly feel comfortable hurling whatever they are thinking about us. The problem is, there are no rules, not even an invisible line drawn, when someone has gone too far in their comments. The only guide is when the receiver can’t take it anymore and starts denouncing critics as “bullies”. But that really only attaches a label without signaling a way to rise above the message. In my first example, Livingston said the email to her from Krause was bullying. In an interview, she said, “Whoa buddy, this is far beyond what is OK to write to somebody in an email, even somebody who is in the public like me.” Whether Livingston was actually bullied or not is actually a matter of contention, but is also beside the point. I still think her responding to Krause publically was fantastic.
Livingston added that, “We need to teach our kids how to be kind, not critical, and we need to do that by example.” Although I agree with her, I think our teachings need to go one step further. To me, the reality is that people we encounter are going to say things about us that can sting; some will be strangers, some may be acquaintances, and still others friends. Some will say things to be mean, some to bully, some purely unintentionally hurtful, and some deliberately jarring. Whatever the purpose, whatever the reason, I always like to think that when people speak their mind, I may not like what they have to say, but that doesn’t mean I have to absorb it either.
But that sounds preachy. And the reality is, I can’t always follow my own advice, at least not initially. Let’s face it, I was a total mess when I was suddenly led to think that other parents might be afraid to let me care for their kids. But beyond ourselves, how do we really teach our kids to not care what people think, especially when they are living in a cyberworld filled with people tossing rude and thoughtless judgments at anything that moves? Here is how I do it. The only way I was able to move past the (unwelcome) opinion was to ask myself, “Do I actually agree with her comment?” In some respects, it is as simple as that. And so I considered my driving record, which is actually impeccable and in fact even better than my ten-fingered husband. It was not enough, though, to move through the comment, I needed to move past it. I concluded that even if anyone ever was concerned about my driving their children, they were in fact wrong, and that was their problem, not mine. And so, as people thrust their opinions on us, either directly or otherwise, regardless of the intention, the only way to handle the message is to emphatically believe the other person is mistaken. Once you embrace that, then who cares what they think anyway?
After all, flaunting is all about being proud of who you are, no matter the critic.
Recently, John, the kids and I were having breakfast in our kitchen, early in the morning before school and work. I flipped the news on to check traffic and weather. As I waited for the update, there was a story about a couple who had two baby girls that were born last March conjoined, attached at the abdomen, who together shared critical organs. To the delight of their parents and two-year-old older brother, the girls had just been separated during a complex, life-threatening, yet ultimately successful surgery. I listened to both parents describing how grateful they were, and thought about the unimaginable stress they had just experienced. The mother began to describe the day she had first discovered that the girls were conjoined. “First, we received word we were having twins. We were elated.” She went on. “But then, when the doctor told us they were connected and my heart dropped…..their recommendation was to terminate.” And then her husband finished her thought. “But we both agreed it wouldn’t be fair to them to not give them a chance.” I sat down for a moment, sipped my coffee, and watched intently. The mom continued, describing the moment the twins arrived. I heard her say, “I instantly said they were gorgeous, they both had ten fingers, came out screaming, and we knew we made the right choice.”
I looked up at my boys, hoping they did not catch the comment about the “ten fingers”. John seemed to be engrossed with the paper, so I didn’t bother complaining aloud, making a mental note for later. Thankfully, the boys seemed unfazed, and so I turned off the television, gave them, Savanna and John each a kiss, and dashed out to the door to make the next train. At the parking garage, I had the sudden urge to let loose a stream of profanity—sort of like Yosemite Sam, the short-tempered nemesis of Bugs Bunny. “Why is it that people are so darn hung up on having the perfect, ten-fingered baby?” I thought to myself, aggravated. Here’s a couple whose babies came out conjoined, with a potentially life-threatening situation, and she is relieved they have ten fingers?
But as always, by the time I arrived at work, I had spent a fun train ride listening to music with my friend Mike on his iPhone, and quickly forgot my frustration, at least for the time being.
One day late last month, Ethan’s 5th grade class went on a field trip to visit a center in New Jersey for the elderly. I recalled my own high school years when I worked part-time at Clarke-Lindsay Retirement Village in Urbana, and I was glad he was going to spend time there. The exposure made such an impact on me, as I hoped it would for him. That said, I have spent many conversations talking to all three of our children about respect for the elderly, and how much we have to learn from people who have had a full life experience. The kids in Ethan’s class, along with the rest of the entire 5th grade, were going to the center to play games with the residents, and also sing holiday music with them. Being a working mom in New York City, I couldn’t be one of the volunteers going, but I would have liked to attend this one.
The following week, as I hung up the phone after a conference call, I noticed an e-mail from John. The subject line read, “Take a look at this.” Included in the message were the following words from my husband, “Look at how Ethan folds his arms!” I opened the link to see an article in the local paper and a photo of Ethan’s class at that senior center. There he was, in the front row, the only kid with his arms folded, hands seemingly hidden. I stared at the picture, feeling regretful that I didn’t join his class trip. Maybe if I had, Ethan wouldn’t have been hiding his hands in front of all of those strangers. That same evening, on my way home from work, I swung by Ethan’s basketball practice. I made it in time for the final ten minutes, waved to Ethan, but then held back, periodically peering into the gym where the boys were pushing hard with drills. As I peered in, I noticed one boy in particular (a year older than Ethan, but who was on his team) that appeared to be particularly focused on our son’s one fingered hands. Instantly my heart deflated, and my mood darkened, wondering what kind of season Ethan was to endure, given the boy’s fixation.
And then, at the end of practice as we began to walk to our car, I noticed that the same 6th grader had grabbed Ethan’s right hand, placing it on a ball. I almost interjected, but stopped myself in time to watch the boy trying to show Ethan how best he might be able to grip the basketball for dribbling. Slightly annoyed (and mildly defensive), I looked at the other boy and stated matter-of-factly, “You know, Ethan has already been playing basketball for years.” “It’s okay, Mom!” I heard Ethan say, clearly wanting us to move past the topic. But then, the boy said something that surprised me. “Oh, that’s so cool! Ethan, see you soon!” He was totally sincere.
And there it was, the boy was actually just curious (after all, it’s not every day you meet a one-fingered basketball dribbler) and even being sweet. I, on the other hand, had jumped to the (wrong) conclusion that the boy was going about to react negatively, or with pity. In fact, he was just interested in showing Ethan what he believed the best way he could grip a ball using one finger.
When we arrived at home that night, I began to reassess the day, this time wearing glasses a much rosier shade. After Charlie and Savanna were in bed, I came into Ethan’s room—he was just finishing his homework. “E—I have a question. When you were singing to the senior citizens at the center, how come you had your arms folded in front of you? Did you feel self-conscious?” I waited, expecting him to confess. But instead, Ethan turned to me and said matter-of-factly, “Of course not Mom. I was cold in the room. Why would I do that? Older people wouldn’t care about the way my hands look!”
After Ethan had gone to bed, I considered the day’s events. Not only was I making assumptions about the intention of others, I was even making assumptions about the actions of my own children! It occurred to me that I spend so much time writing, speaking, and living my life so that people don’t make assumptions about me or our children, and here I am doing just that. If I deserve a chance, then I need to remind myself that so do others.
As I sat down to write this piece, it was originally going to be written with a different slant. But as I researched more on the mother of the conjoined twins, wanting to make sure I quoted her perfectly, I learned that she in fact said something different than what I had thought I heard. Here is what she actually said: “I instantly said they were gorgeous, they both had held on to my fingers, came out screaming, and we knew we made the right choice.”
Clearly, I should have given her the benefit of the doubt too.
“Courage is Knowing What Not to Fear” –Plato
We all start out so unabashedly unashamed. Whatever makes us unique and special, we regard without concern; we flaunt it without a care.
Then we depart from this. Someone. Somehow. Sometime. Something. And we find ourselves thrust into the world of judgment, or painfully watch as our children face something similar. Does it happen to us or do we allow it to happen? No matter. It was always present, but now we care. There, we struggle, sometimes for years, to improve ourselves so we are noticed, or perhaps improve ourselves so we aren’t noticed. If we are fortunate, we are able to return to that place of our early youth, where we no longer absorb the assessment of others.
As we turn to 2013, I once again choose to highlight those auspicious people that have demonstrated this past year to their family, friends, neighbors and some even to the public at large, that they have learned not to hide, but rather flaunt whatever may cause others to judge them (or their children):
- Oscar Pistorius: “The Master of not only the possible but the seemingly impossible.” Oscar is the only person to make my list two years in a row. In 2012, Pistorius successfully competed in both the Summer Olympic Games, reaching the Men’s 400-meter semi-finals, as well as medaling at the Paralympic Games this past year. In addition to his great athletic ability, Oscar was voted one of People Magazine’s “Sexiest Men Alive.” Pistorius lost his legs at eleven months old, and ultimately learned a different way of mastering balance through competition.
- Nate Muehe: “If you put your mind to it, you can do what you think you can’t do.” One of Nate’s arms was stunted at birth. Some youth baseball coaches refused to let eleven-year-old Nate Muehe, play on their team, despite the fact he could reach 60 mph on the radar gun. But one team in Kansas, where Nate is from was willing to take a chance him. Now a 7th grader, Nate has proved himself to anyone that doubted his ability to play baseball. Nate continues to excel as a pitcher in in Johnson County, where he lives with his family. He’s also a fantastic center fielder and first baseman. Nate’s great attitude, in addition to his awesome baseball talent, is the reason Nate made this year’s list.
- Aimee Copeland “Instead of saying I am disabled, I say I have a different set of abilities” (While being interviewed by Katie Couric in Sept. 2012). When Couric asked if at any point she wanted to give up, Copeland firmly said no. “I love life. It’s a beautiful thing.” Copeland, a 24-year-old graduate student went zip-lining with friends. Unexpectedly, the homemade line snapped, and she sustained a deep cut. Days later, Copeland was diagnosed with a rare, dangerous flesh-eating bacteria, which ultimately claimed parts of all four of her limbs.
- Tony Memmel: “It may sound strange, but I have found everyday challenges ….to be the true challenges that occupy my mind most days. It is very seldom that I think to myself, ‘Now how in the world am I going to do this with just one arm?’ Fortunately, I can count those instances on one hand.” Memmel is a singer and songwriter who was born missing his left forearm. Never one to be held back, Tony taught himself how to play guitar, and given his tremendous musical talents, Memmel tours around the country, won numerous awards and has just released his latest album, “Clenched Hands, Brave Demands.”
- Zach Hamm: “It doesn’t matter what you look like on the outside, it matters how you look on the inside. This isn’t a life threatening disease. It doesn’t stop me, and it shouldn’t stop you.” Zach, a 12-year-old boy from Texas, was diagnosed with Ectodermal Dysplasias (ED). A rare genetic disorder, ED can have multiple effects such as hair, teeth, nails and glands developing abnormally. Zach has skeletal abnormalities which include only having one toe on his right foot and two toes on his left. Also, his sweat glands are not fully functional and he is unable to control his body temperature, particularly in the heat. With the unconditional support and love from his parents, Zach started the ‘Zach Hamm Don’t Sweat It Golf Tournament,’ an annual benefit to help raise money for the National Foundation for ED, was profiled in a 2012 book by sportscaster Bill Brown (www.mybaseballjourney.com), and Zach’s father, Paul wrote a fantastic Guest Flaunt for me earlier this year, in honor of Zach.
- Vidya Anandam: “At first it seemed to be hard. Soon, it became a pleasant experience as my heart became as light as a feather. Interestingly as I began to face the society with bolder and stronger attitude, it became more and more friendly and more understanding. As I learned to say ‘I haven’t got a child’ with less pain, sympathy turned into respect as though by magic. Had I got children normally and immediately after marriage, I would not have realized what a precious gift G-d has given me (i.e.) my husband. I would not have enjoyed the depth of his character- his generosity, broad mindedness and unconditional love for me. I suppose the history of mankind itself is full of differences and challenges and can be described as a never-ending journey towards perfection.” Anandam, a woman living in India, wrote a passionate and captivating Guest Flaunt for me this year. In it she heroically faced her inability to have children biologically, despite it being viewed as a ‘sin’ among many people in her society.
- Joanna Rowsell: “If I can make a difference to young girls with the same issue then that’s a responsibility. If they can look at me and think it’s not the end of the world and they can still do what they want to do, that’s pretty amazing!” After claiming Olympic victory in the women’s cycling track event in London this past August, Rowsell removed her helmet to reveal she is almost totally bald—the result of alopecia she has suffered for 13 years. Despite the inevitable shock and judgment, Rowsell chose to ascend the Olympic podium to collect her medal without her wig.
- Zachary Kimotho: “The kind of response we are getting is quite encouraging. It’s what is re-energizing me. To know that people are listening, people are receptive. They can see the need.” Zackary has been in a wheelchair ever since he was shot in a car-jacking eight years ago. This past year, Kimotho was on a heroic plight to raise money to build a Spinal Injury Rehabilitation Unit in Nairobi. Having recently returned home, Kimotho successfully raised $900,000. Upon completion of the center, local spinal cord patients will be provided with affordable, easily accessible care that is currently unavailable.
- Molly Ryan Stapelman: “I believe everybody is different. Some people’s differences are on the outside and easier to see than the differences others have on the inside. But everybody has got something and G-d doesn’t give challenges to those who can’t handle them. And whatever your challenge, it is a blessing worth celebrating.” Inspired by her beautiful daughter Ryan being born with symbrachydactyly (resulting in shortened fingers on one of Ryan’s hands), founder of “Lucky Fin Project,” with already thousands of supporters around the globe, Molly’s mission is to educate as well as create a support network for parents whose children with limb difference. http://luckyfinproject.org/
- Lauren Scruggs : “I think the hardest thing is losing my hand, because it changes your life and you have to learn things in new ways, but its also a good and positive thing because you appreciate life a lot more. I feel that the joy in my life has intensified, and my compassion for people has strengthened. And my dream for you…..is that you’ll catch a glimpse of what I love so much about fashion: Its boldness and creativity, the confidence that it takes to stand before a camera and let your image get captured, even though you aren’t perfect; the peace to be truly okay with how others see you.” Scruggs, recently interviewed on Today (NBC) and quoted in the HuffPost, is a Dallas area model and editor who lost her left hand and fractured her skull (losing sight in one eye) after she walked into the propeller of a small airplane approximately one year ago.
Today, as we close the chapter on 2012, I celebrate these phenomenal people, and look forward to seeing who else may turn up on the Don’t Hide It Flaunt It list for 2013.
Happy New Year from my family to yours!
This post is dedicated to Kim Tebussek Gollings, who is a dear friend from my youth. Kim not only was the 500th “like” on my Don’t Hide It Flaunt It FB page (which earned her this dedication!), but recently reminded me that our lives are all filled with struggles–blatant difference or not. Here is what Kim wrote:
“Meg: In honor of me, dedicate your post to someone else. Or dedicate to old friendships. Or to those who had no idea of your struggles because we never thought of you being different. Not to take away from the physical difference, it was just not an issue. You were just you. We were just all trying to navigate those crazy years of trying to figure ourselves out. I was too lost in disliking my own life to realize anyone else might have struggles as well.” Kim- Thanks for offering, but I still dedicate this one to you. Lots of love.
“Life is short; therefore, I shall be a crusader in the struggle against ignorance and fear, beginning with myself.” –Dorothy Vickers Shelly
I looked around at all the other 1st grade kids as we faced one another in a circle, holding hands. We were at our elementary school Yankee Ridge, in Urbana, Illinois. Mrs. Shelley, the school’s librarian, was a tall, striking light-skinned black woman, with a short afro and big “70’s” glasses. She had just read us a book, and despite our youth, we all knew the drill. It was time to sing her favorite song, “We Shall Overcome.”
As Mrs. Shelley sang, I noticed that she always closed her eyes, as if deep in thought. I looked around at the other kids in my class. Although no one else had any blatant physical difference like my one finger on each hand, there were several kids that were quite dark skinned, many of whom I had met the previous year in Kindergarten. At six years of age, I was many years away from understanding the concept of integration and thought nothing of the fact that these kids were bused from across town to attend our school.
As I sang the same song week after week, “loudly, with compassion” (as instructed), it never occurred to me that it probably meant something extremely important. One thing was certain. I had no idea how much it would ultimately mean to me.
The day had arrived—it was time to read a book to Savanna’s Kindergarten class. My parents had sent her books the night before—just in time for her 6th birthday. As we entered the room, Savanna and the rest of her classmates were seated on the floor, ready to hear her selected book. Earlier that morning, Savanna turned to both me and John, clearly focused on making sure neither of us felt left out. “Mommy, Daddy—I want you both to be able to do something for my class reading. Daddy, why don’t you hold the book and then Mommy can read. You can even take turns if you want.” I already knew I didn’t “want.” If John held the book and I only read, there was a significant chance the kids would not even focus on my hands. It didn’t hurt that the day was chilly and rainy so I was wearing long sleeves and could hold my jacket. To my relief, John held the book, I read the story, and none of the kids seemed to notice my hands.
As I drove home from work the other day, I reflected on that birthday book-reading for Savanna. What if the day had been warm and sunny and I wore a short sleeve top? Did I really mind that the kids would have noticed me? Well, yes…and no. To start with the “no,” I am quite good at going through my daily routines, even if it means having children stare or (ideally) simply ask their questions so we can move on. But here is the “yes.” As I mentioned in a past post about raising my ten-fingered daughter, “Following Her Lead,” I still find myself caring how other kids will perceive Savanna because of her mom’s blatant physical difference. Since the boys share my condition, this experience really is new territory.
There is no question I have progressed light years from the days of hiding my hands in a photo, or to the general public. But that is when it has to do with me alone. As far as I have come, I have to admit that I am still wrestling with feeling proud of what I look like in front of my kids, and especially Savanna.
As I entered my driveway the same evening, the song from those days with Mrs. Shelley came ringing in my head. I delayed entering the house, choosing to remain in the car– glad to be alone with my thoughts. I think the first time I actually thought about the lyrics to “We Shall Overcome” I was in high school, studying the civil rights movement in History class. At the time, I presumed that the message was meant to counter the persecutions of the majority against the minority.
However, the embedded message of the song is far more powerful than my initial interpretation. So many people have said to me along the way, “Meg, you have overcome so much.” The statement never resonated well, since to me, I was simply born this way, and living my life. But the truth is, they are still right. I have worked to overcome the judgment of others. But the only way to overcome ignorance, fear or even the simple and uncomfortable curiosity of others is through not only accepting your lot in life as it relates to you, but to cherish yourself enough to allow it to impact your loved ones. If I can have the guts to believe that my children will be able to manage the unwanted attention as well as I do, then I will have achieved something real. I am still working on it.
I wrote this post right before the violence that occurred last week in Connecticut. I cannot help but cry every moment I reflect on the horror inflicted on the 1st grade and adult victims of this unimaginable and brutal murder. But my tears are shed also thinking about the people who have survived, but will bear the scars forever. It occurred to me this week that the lyrics to “We Shall Overcome” seem to transcend their original historical meaning and even my own personal interpretation, and find relevance even here.
|“We shall overcome,We shall overcome
We shall overcome some day
Oh, deep in my heart
I do believe
We shall overcome some day”
This post is dedicated to Dorothy Vickers Shelley, who passed away in July 2009 at the age of 74.
The summer camp was called, “Indian Acres.” It was a day-camp located near the University of Illinois campus. The main activity was swimming, which, even at the young age of five, was right up my alley. I loved the freedom of the way the cool water hit my warm body whenever I jumped in for the 1st time. As a girl born with a very blatant physical difference, the water represented a type of “safe-house” to me. From the moment I was submerged, I could easily swim around feeling completely comfortable in my own skin. Not only was my body mainly covered, but whenever all of us campers were in the pool, somehow the other kids became so consumed in their own underwater adventure, they rarely focused on my physical deformity……until it was time to change.
Once out of the pool, all the pre-school and Kindergarten aged kids lined up and were led into a large, almost circular room. The facility had lockers and benches that draped the exterior, which meant that when we changed back into our t-shirts and shorts, we had to face one another. As much as I loved spending time in the water, I loathed the period both before and after, when I would have to reveal my severely misshapen feet. One thing was certain, none of these kids had ever seen a child with one toe on each foot. Every day when we changed, they would stare. Some would whisper to a friend nearby. The first day, many of them gathered round to ask me what had happened to my feet. My stomach tightens even decades later at the memory.
“Mom, when I get to the birthday party, I want to wear my swim shoes.” My heart simultaneously sank and related fully to our seven year old, Charlie. He was born with a similar version of my condition (two fingers on each hand, two toes on each foot), and, between our two boys, Charlie is the more sensitive of the two….in other words, he reminds me of me as a child. Last summer I was thrilled to find rubber pool shoes that they could both wear in and out of the water. As the summer wore on, I noticed that Charlie began to wear his pool shoes at all times around our town pool, even when not swimming. Without asking him or discussing it with John, I made a mental note that he was probably also wearing them while at summer day-camp as well.
I turned to him. “Char—how come?” “You know why, Mom. If I don’t, all the kids will stare at my feet. I am okay with people noticing my hands, but it is different with my feet. I will feel like a freak–like the day I took my boots off in Kindergarten and the entire class gathered round to look at my feet.” I swallowed, having never heard about that particular experience from him. I often say to people that I wear my limitation out in the open, literally on my sleeve. But I see that Charlie is clearly following in his mother’s footsteps when it comes to concealing his feet. You might wonder, “What’s the difference between displaying different-looking hands versus feet?” All I can say is, with the hands, there’s no choice. They’re just on display. But feet are generally hidden, so no one is necessarily expecting them to be different, too. It’s like, you feel the people around you have finally gotten used to your hands, when all of sudden the feet are now going to become a topic of interest and all those feelings of being the object of stares come rushing right back. Who needs that!? It’s just easier to keep the shoes on after all. I always equate it to someone with an invisible difference that finally gains the strength to “come out.” That, to me, is so much harder.
Later that night, I began to think about my days at Indian Acres, and the fact that Charlie used the word, “freak” to describe himself; how he felt when so many of the kids at school were staring at him. It reminded me that as great as “flaunting” is, the ability to do it often comes with age. It is also nearly impossible for persons on the outside to truly relate. I then felt compelled to run an Internet search on Indian Acres, and was quite surprised to find the camp still exists, and was even more shocked that it has retained its original name.
For those who are unaware, up until 2007, a costumed mascot character called Chief Illiniwek made his half-time performances at every University of Illinois football and basketball game. A University student would don authentic garb (Sioux regalia) and perform a tribal dance. Growing up, my dad had often taken Peter, me and Ted to the games where we saw the Chief (er, U of I student) perform the tribal dance around the field or court. We graduated high school in the late ‘80’s and left Illinois, but over the next two decades, Chief Illiniwek was the subject of controversy. Several native groups advocated removing the Chief from his post; that the mascot was not only a misappropriation of indigenous cultural figures and rituals, but also perpetuated stereotypes about native Americans.
Finally, about five years ago, the primary governing board for intercollegiate athletics instituted a ban on schools that use what they call “hostile and abusive American Indian nicknames” from hosting postseason games. What caught my attention this week was that those in favor of retiring the Chief contended that it “perpetuated harmful stereotypes.” All of a sudden—it hit me. While those in support of the Chief claimed that he was a revered symbol representing a proud people, that opinion came from people who were not Native Americans themselves. In fact, when you get right down to it, I believe those that grieved the loss of the Chief as their mascot most likely missed their halftime entertainment and cared little for the Native American culture and history the mascot purported to represent.
Forgive me in advance for yet again writing about the forthcoming AMC show, “Freakshow,” but I have been thinking even more about its likely impact. On the one hand, in response to my blog post “Learning from Lincoln,” last week, one follower offered the following: “It seems to me that people who would want to display themselves in the “Freakshow” environment are merely flaunting their differences proudly. Similar to people who get full body tattoos or body modifications and enjoy drawing attention to themselves in that way. I don’t think it’s necessarily an indication that they feel poorly about themselves.”
I thought about this response for a few days, since at first glance, I agree with her, and hope that the persons who agreed to do the show are simply demonstrating their (public) ability to flaunt. In fact, that may be spot on. But, even if she is right, I am now thinking it is more complicated than all of that. To me, when people put others on display for purposes of entertainment, even if innocently ignorant of the impact to the other’s community, they are cooperating to perpetuate stereotypes. As a person with, and parenting children with, a blatant difference, I don’t chose to allow the term “freak” to become an acceptable adjective. As someone who has been pushed down in a crowded subway while being called a “freak,” and whose own children have had to endure hearing themselves as the subject of the term, with its razor-sharp edge, I reject the notion that the word can be sanitized for general consumption. The freak term is as offensive as the “R” word, or the “N” word. No matter much I have learned to flaunt my difference, I refuse to allow “freak” to become an acceptable word to define myself or another, even if they are willing and able to flaunt.
While researching on the Chief the other day, I learned that the word Illiniwek means “those who speak in the ordinary way.” Maybe that can serve as a reminder that none of us needs to come up with extraordinary labels for one another; that having differences can be the subject of ordinary conversation, without the need to turn personal lives into carnival shows. That most importantly, it is possible to enjoy one another’s company without having to be entertained.
“Hi, how have you been, Bird?” My brother Ted looked at my hands directly, waiting for feedback. I adjusted my voice to a higher and squeakier version of itself. “I am okay,” I responded sounding purposefully sad. “But the Momma birds are not letting me or the other Bird come out and play.” The discussion with my little brother had continued for what felt like hours. In fact, it may have been hours. On that day, for that particular story, the Birds had been in a fight, gotten in trouble, and thanks to their “parents,” the Momma Birds, they had to stay inside rather than build a snowman.
Our imaginary play had first begun using puppets after Teddy and I started watching Fred Rogers in, “Mr. Roger’s Neighborhood” (Public Broadcasting Service). At some point during each segment, the Rogers’ Neighborhood trolley would leave his house through a tunnel into a land of make-believe. At first, we began to use small puppets that our parents had bought for our amusement–our favorites were Hanzel and Gretyl. Although I was fascinated with the creativity puppets allowed, the act of moving their arms required an additional two extra fingers I didn’t have. The best I could manage during our imaginary stories was to use my sole finger on one hand to keep the puppet’s head up, and the other to move the arms where possible. It never worked well.
No, I preferred using my own appendages as the “actors” (each hand, representing a Bird, my feet representing the Momma Birds). If the Birds wanted to “fly,” Ted’s ten fingers would attach themselves to either side of my hand, and spread widely so they created the appearance of wings. In time, I figured out how we could even use other characters with my hands. Drooping either finger downward so my sole finger appeared like a trunk, I would add eyes to the outside of the hand with a pen to create the image of an elephant. To be clear, the Birds and the Elephants weren’t exactly imaginary-friend material; it’s not like I was ever alone in my room talking to them. Rather, they represented freedom and equality to me. Freedom because by using my hands during our version of pretend play, I was not limited by the design of an external puppet. Equality because the minute Ted and I ducked into our version of Rogers’ make-believe world, I no longer felt as if my difference made me “less than.” Just as I always knew deep inside I was like others, when I could rely on my self-made characters I felt as if I was just as good as anyone else.
This past weekend John and I took Ethan and his friend to see the new film, Lincoln. The history buff in me was excited to check-out for two+ hours and just experience an important piece of our history. But what I got out of the movie was much richer than any history lesson. I was simply overwhelmed by the film’s exploration of the real meaning of equality. At one point we learn that Lincoln, played impeccably by Daniel Day Lewis, had been fascinated by the Greek mathematician, Euclid, who lived nearly 2,400 years ago. He internalized one of Euclid’s basic geometrical theorems: “Things that are equal to the same thing are also equal to one another.” Simple. Irrefutable. Truth.
I went home that night and pondered the implications of that statement on my own life, and that of my children. Structurally it sounds so simple, so straightforward, so accurate. But upon further consideration, life is so much more complicated. I began to think about what it is like to be born with any type of blatant difference. How it has played out in my own life, and now for our children? For one, I definitely believe that despite my difference, I am the same as anyone else—that we are essentially equal to others, even if not identically equal to them. But I can think anything I want. The problem arises from life experience. If I allow in external judgment, often I don’t feel equal to others.
This past week a blog follower whose child was born with a limb difference sent me something that I found quite troubling. Apparently, AMC TV plans to air early next year a show called “Freakshow” (http: www.amctv.com/shows/freakshow). As described in her note to me, “It showcases several individuals born with limb differences and exploits them for the purpose of entertainment.” Understandably, she was extremely offended by the promo of the new series. She plans to boycott AMC and the show, hoping others will follow her lead. Mostly, she was concerned people watching the show will then look at her child and think, “freak.” She was just as if not more concerned that this show could lead her own child to regard herself as a freak. I checked out the site, and just as she described, AMC is planning to air “Freakshow” in February because it has “truly unique people, specimens and creatures for spectators to gather and watch.”
I support any effort to remove this show before it ever airs. But, what I think bothered me the most about seeing the AMC show promo was actually the fact that the main characters are willing to put themselves on display for this type of entertainment. To me, their professed decision to wear the “freak” title proudly is just a rationalization for a shot at celebrity, such as it is. Just looking in the camera and telling us that they feel normal doesn’t do anything to blunt the negative impact of the work “freak” or the outdated and hideous spectacle of the Freakshow entertainment concept.
Although I can fully understand how another parent of a child with any type of blatant difference could feel otherwise, I personally am not worried about my own kids seeing a show like this, and then regarding themselves as freaks. I tell all them everyday how awesome they are, how their difference will prove to be the biggest asset, their greatest advantage. It will help them “weed out the jerks,” who won’t want to know them anyway, and like a magnet draw in only the most thoughtful, wonderful people into their lives. To prove my point, I even showed the Freakshow promo just now to our son Ethan. He had the same reaction to it that I did—pity for the people who feel so poorly about themselves that they agreed to do a show that describes them with such a negative connotation.
If you are born looking different, are parenting a child who looks different, or are simply experiencing your own version of it all through an “invisible” difference, remind yourself that inside we are all the same, equal to one another. If I think back to Abraham Lincoln, although his teachings may have been derived from mathematical genius, his wisdom was still grounded in something beyond logic. Lincoln understood and appreciated the human heart, the human spirit. He knew that only we have the power to define ourselves. As he so eloquently put it, “No man is good enough to govern another man without that other’s consent.”
It is your choice.
Definition of Embarrass
To make or become self-conscious; to become or cause somebody to become painfully self-conscious, ill at ease, ashamed, or humiliated.
We were all completely pumped. Not only because the Urbana Tigers had won the homecoming game only hours earlier, but that my close friends and I had been invited to go to an after-party at Bill’s house. Bill was the quarterback of the football team, immensely popular and extremely attractive. Thankfully, one of my friends, who had also been voted Homecoming Queen earlier that day, was dating Bill. Their relationship meant that we could snag an invite to the party.
As I walked around Bill’s house, it was a typical party scene. Some people were drinking, some making out, some smoking, and some were watching music videos on MTV. However, given the day had been mild for October, many were hanging out together on the outside patio. I glanced at my wrist, but realized I had forgotten to wear my watch. So, I pulled open the heavy, sliding glass door and quickly walked through, leaving it open. “Hey, does anyone know what time it is?” “It’s almost 11pm”, a girl I hardly knew replied. I tensed. My curfew was minutes away. Quickly, I turned back to walk inside to find my friends. But I didn’t get far. Suddenly, I felt that thud of the heavy glass against my face. I bounced backwards as the entire glass door shattered from the impact. Unbeknownst to me, someone had innocently closed the door. From the shock of the impact I began to faint…..into the arms of Bill who had been standing nearby and ran to catch me.
“Meg! Meg! Are you okay?” Everyone gathered around Bill holding me, barely conscious. As I began to revive, I looked up at him. “What happened?” Everyone let out a collective sigh of relief. “Geez Meg, you must have the hardest head. We’ve been playing basketball here for years and I cannot tell you how many times the ball has hit that door without breaking it. My friends scooped me up and called my parents so I could be taken immediately to the Emergency Room at the hospital. On the way, my friend Sari turned to me. “Wow, Meg. It looks like you got away with only a few scratches on your face and hands. I would have been so embarrassed, but you seem unfazed!” I laughed with her at the thought of Bill rushing to my rescue. Nope—I was not embarrassed. The thought did not even occur to me.
As I lay flat on my back, I looked around and let out a loud cough. The walls of the doctor’s office were probably clean, yet seemingly old and grey. “Meg, hold still.” Grabbing hold of each side of the furniture with my sole finger on each hand for support, I held tightly so the technician could X-ray my chest. “Breathe deeply.” As I inhaled and exhaled slowly, I reflected on the day’s events.
Having just purchased the most beautiful white sweater I had ever seen using my babysitting money, I couldn’t wait to wear it to school with my favorite pair of wine corduroy pants. I had never seen anything like it. Aside from the fact that somehow the length of the sleeves was shorter than most traditional tops and fit my shortened forearms perfectly, the sweater was covered with the softest and silkiest long angora. I once read that the fibers of angora are so hollow, they give the fabric the feeling of floating to the human touch. As I walked the halls of Urbana High wearing my new sweater, I felt particularly attractive that day. After all, the contrast of my almost black hair against the stark, white fabric was in itself a standout. I scored lots of compliments from both friends and mere acquaintances. I became so caught up in petting my outfit, I did not notice at first that I had begun to cough. First it was faint, but as I sat in my History class, the urge….no, the need to cough became uncontrollable and constant.
My coughing became so alarming to my classmate that, my friend Beth grabbed me by the arm and informed our teacher she was taking me to the school nurse. As I sat in the chair in the nurse’s office, she began to check my vitals. “No temperature. Your blood pressure is fine. Meg, you may simply have a bad cold, but given no other symptoms, I suggest you leave school and go see your doctor.”
And that is how I ended up on my back getting my chest X-rayed. My dad had left the University to bring me there, and as we sat together in the waiting room to hear the results, my constant urge to cough continued. “Meg?” I looked up and followed the doctor back into his office. “It seems you have inhaled a large portion of the angora sweater you are wearing.” That night I called Beth and next my friend, Courtney, to tell each of them what had happened. As soon as I provided the cause for my unexpected yet constant barking, they both laughed and independently had the same reaction. “Oh, my gosh Meg! I am glad you are okay, but how embarrassing!” Nope—I was not embarrassed. The thought did not even occur to me.
I just posted a new “Guest Flaunt” that got me thinking. It is a thoughtful, lovely piece from a woman named Amanda who decided to write a Flaunt for me about learning to embrace the fact that her hair had turned prematurely grey. As she put it, “Societal norms told me that that a thirty-something woman should not have grey hair but instead, should be a blonde, a brunette or a red head. I thoughtlessly aimed to follow that norm.” Now in her early 40’s, Amanda has decided not to fight a battle she couldn’t win, but to embrace her new natural color. In fact, according to her, Amanda’s own mother remained horrified by her resolution to go au naturale. I must admit, I was intrigued by this Flaunt. Mostly, for two reasons. First, it reminded me of the fact that although I walk this earth looking so dramatically different than the majority, that I am actually not as in the minority as one might think. As it turns out, people who I view as seemingly perfect are traveling on their own road to self-acceptance. Another friend was a bit shaken up by his young daughter’s new eye glasses—her seemingly perfect life experience now more complicated. While both these examples I can try and brush off as trivial, to these people the experience is stressful, and the ultimate choice is the same as mine has been…to unconditionally accept yourself (or your children), or spend your life letting other people’s opinions limit your ability to be content.
This leads me to the other reason I was intrigued. It occurred to me that when people born otherwise perfect experience a change that leads to some type of imperfection, the natural reaction is simply embarrassment. We are motivated to conform, because the alternative would be to become self-conscious. But living our lives (or reacting to the experiences of our children) based on how the outside world reacts becomes annoying and, over time, exhausting. Reading Amanda’s Guest Flaunt was extremely refreshing to me. It reminded me that some courageous people who find themselves confronted with difference make the following enlightening discovery: There is nothing to be embarrassed about by claiming your difference rather than resenting it. In Amanda’s words, “After years of being a slave to hair color, I felt liberated and confident in my decision to embrace this natural and genuine physical characteristic of mine.”
It has been more than a year since my “Glass-Half Full” post, where I listed the top ten reasons it is great to have two fingers. It has occurred to me that I may need to post my 2012 version. One item that just might make my list is that I have come to a new realization. I am never embarrassed. Oh sure, I have written about my years of hiding my hands in photos, self-conscious of my hands and feet. But here’s the upside. Because I felt ill-at-ease about my physical appearance, it has never occurred to me that I should ever feel embarrassed about anything else. Once I decided to flaunt the very thing I was most embarrassed about, the weight of the world around me lifted. Even better, I am delighted that others are joining me, no matter the difference, no matter the life experience.
After all, there is something liberating about not pretending.
I am grateful to my teeth for the following:
#1. Opening Chobani yogurt lids
#2. Opening the plastic bag encasing for my cereal
#3. Opening my soccer chair outer cover string-pull when I attend the kids’ games
#4. Opening wrappers of any kind
#5. Peeling a banana
“We gather together to ask the Lord’s blessing; He chastens and hastens His will to make known; The wicked oppressing now cease from distressing; Sing praises to His Name; He forgets not His own…..” Ugh. I sat there and shuddered with embarrassment as my parents once again engaged in their annual ritual at the Thanksgiving table with our dear friends, the Shapiros. Our families had been close for many years and three of their four children were practically the same age as me and my two brothers, Peter and Ted. Many years before, we all had been living in Jerusalem during the Yom Kippur War of October 1973. Their son Daniel and I played together in the bomb shelters, oblivious to the dangers that surrounded us. Because our parents were all displaced New Yorkers, when it was time for holidays like Thanksgiving, we would typically gather together to celebrate.
This particular year, at the prompting of one of our fathers, each adult and child went around the table declaring what we were thankful for. Weighing my options, I tried to come up with something significant, something that demonstrated my appreciation for the greater world around me and not simply my own life. First was my brother Peter’s turn. “I am thankful for our new Atari set!” Everyone laughed. Next was my turn. I chimed in, repeating what I had heard the Miss USA pageant contestant declare on television that Fall. “I am grateful for the fact there is peace on earth.” Awkward silence. And then it was time for my friend Daniel to offer his take on gratitude. “It’s so incredibly nice to be together with the Weinbaums once again for the holiday. Being together reminds me how sometimes certain friendships are more like having family.”
I looked at Daniel, fully absorbing his comment. That was the first time I recall appreciating that you could find meaningful gratitude even in simple things.
I was sick as a dog. Not sure why dogs are associated with sickness in such an expression, but I knew I fit the bill. I had been up all night before, you don’t need the details. Charlie was only a couple of months old, and Ethan almost four. Within months, Savanna would be born, assuming all went according to our adoption plan.
“Joan just arrived. You going to be okay?” John was about to head to work. Joan had been with us since Ethan was practically an infant. “Yes. Please let her know I’ll be down as soon as I get the energy.” But all day I slept, only opening my eyes finally later that afternoon. “Joan?” I called out. No response. She must have taken the boys out, I presumed, so I was home alone. Eyeing the time, I realized…it was just me, myself and….. Oprah.
So I turned on the television, and on the show was an author named Sarah Ban Breathnach. She was discussing with Oprah the importance of keeping a gratitude journal. Oprah herself had been keeping a journal for more than a decade. Every night she would list five things she was grateful for. Someone in the audience then raised her hand and mentioned that as wonderful as a gratitude journal sounded, she wasn’t sure she could ever come up with at least five things every day. Oprah responded. “Well, many times my grateful list is filled with the obvious, everyday things. The list doesn’t necessarily have to be incredibly significant, as long as it represents something that was positive about your day. It could literally be the equivalent of a stranger unexpectedly opening the door for you.”
According to Oprah, for example, she was grateful on October 12, 1996 for the following:
#1. A run around Florida’s Fisher Island with a slight breeze that kept me cool.
#2. Eating cold melon on a bench in the sun.
#3 . A long and hilarious chat with Gayle about her blind date with Mr. Potato Head.
#4. Sorbet in a cone, so sweet that I literally licked my finger.
#5. Maya Angelou calling to read me a new poem.
I rolled over in my bed, noticing for the first time that day I was hungry. It seemed I was on my road to recovery. The sun shone brightly through my window warming me. “Meg, we’re home!” Joan had heard the TV on and knew I was awake. I couldn’t wait to see Ethan and baby Charlie. I already had three for my list for that day.
Now that we’re finally back in our home for a couple of weeks after Hurricane Sandy, I have been thinking a lot about Thanksgiving and what I am thankful for. For us, the unconditional friends and family offering a warm place to stay as the temperature dropped dramatically are certainly among the top of my list. But beyond the obvious, in the spirit of being grateful also for “the little things,” I would like to give thanks for my teeth.
While I am an independent woman, I have acknowledged in blogs past how handy a steak knife can be for me. It’s my go-to opener for every package. But my husband, John, refuses to let me walk around holding a sharp utensil. The nerve…. and so, as I sit down to write in my gratitude journal on this Thanksgiving day, I have decided to dedicate my entry in appreciation to my teeth. It’s almost as if my pearly whites step in where my fingers are lacking. And so, I have come up with five reasons my teeth are stupendous, and not one had anything to do with helping me to eat my food.
Whether about something significant or seemingly minor, sometimes it feels just as good giving a nod of appreciation to something we otherwise simply take for granted. Happy Thanksgiving for those of you who celebrate!
This post is dedicated to my lifelong dear friend Daniel Shapiro, who remains one of the most thoughtful people I have ever known, and who happens to now be the U.S. Ambassador to Israel.
“If you look into the mirror of reality, your reflection will be to face up to your fears and the outcome will be you might find something amazing. I learned that from experience. You might not always benefit, but what you will gain is a little less fear and a little more fun in your life.” Ethan Zucker November 2012
I was relieved. Somehow Ethan must have had enough foot development with his two toes (versus my one toe) on each foot that wearing cleats was within the realm of possibility. I had spent plenty of time exploring my options, even some seemingly outlandish. The prior year, I had even written to the Puma customer service department. They had announced a competition to the public to help inspire the company to create a new, custom-tailored cleat. Using that as my entry-point, I wrote to Puma, explaining that our son was born with ectrodactyly and asked if they would be willing to entertain creating extremely wide and somewhat shortened length to be available for kids who were not born with conventional feet. No response. But after trying a few brands on our kindergartner, somehow I found cleats that fit him….at least well-enough for the time-being. But shoes were the least of our challenges in the context of soccer.
When the season started, I used to joke with my husband, John, that Ethan paid more attention to the butterflies and the bunnies hopping around than the game itself. The coach assured us this was normal for 5 year olds. Many of the kids on his team were from a neighboring town and didn’t know him from school, but they quickly got past the initial need to stare at his one finger on each hand and discovered he was a decent player. We also decided to help Ethan along by signing him up for a soccer clinic at the YMCA so he would understand better the game.
During the final game of the season, the score was tied. In the final five minutes, one of the coaches put Ethan into the forward position. Somehow, Ethan surprised all of us and scored the winning goal. I screamed with delight, cheering “Ethan, Ethan!” Within minutes, the players on each team lined up in opposite directions in the post-game ritual to pass one another and shake hands. Within seconds my heart went from completely inflated to a state of emptiness. It sank as I watched Ethan stick out his one-fingered hand to the players of the opposite team and, one by one, the majority put their hand down, or up, or quite frankly anywhere so they didn’t have to touch his hand.
This past weekend, I sat on the cold bleachers watching Ethan’s soccer team, in 1st place, play in the first playoff-game for the season. After Hurricane Sandy, a nor’easter and first snowfall, it was good just to be able to get the kids on a playing field. I glanced over at Charlie and Savanna, both joyfully playing together in a dirty mound of snow piled-up alongside the field.
“Go Ethan!” I looked up when I heard John. Ethan was charging up the field with the ball, quickly glanced and saw his teammate was marginally open. With a quick pass of the ball, his teammate scored, helped directly by our son’s assist. John and I were elated. Charlie and Savanna meanwhile jumped to another pile of snow. I felt so content, so happy about how far we had come since those days when Ethan first began to play soccer.
As we loaded up into the car, I turned to Ethan. “Nice game, E! You guys played awesome!” “Thanks Mom…..” his voice trailed off. “What is it?” John and Ethan had driven to the game that day separately so he could practice with the team earlier, and rather than responding, Ethan followed his dad to his car. It was only later, when he and I were out of earshot of anyone else, did Ethan speak to me candidly. “Mom, a couple of boys made sure to not shake my hand again.” I was shocked. Had this been happening all along, unbeknownst to me? “Huh?” “C’Mon, Mom. It isn’t everyone, ya know. It’s always two or three kids that don’t want to touch my hand in every game when we are all lined up. If they are my age, why do you think they do that?”
My mind raced to an e-mail I recently received from a mom who follows my blog, asking my advice. In it she described several ninth grade boys teasing a younger 7th grade boy based on his (small) size. In fact, they boldly taunted the kid in front of her and her younger son, his friend. She was understandably upset, even felt guilty about not doing more than telling them to stop. She even considered calling their parents.
My feedback to the mother related back to my theme that you cannot control the behavior or thoughts of others, no matter what they say. By allowing the behavior of some insensitive kids get the best of you—you end up losing your own sense of self, your “power.” But there was more, beyond how to react to the situation. I told her that, in my opinion, for the small boy, this is his life lesson and journey—he will be all the stronger for it. In fact, much stronger than those 9th grade boys no matter how tall or strong they are or become.
And so, it was time for me to once again take my own advice. I turned to Ethan. “Hon, I can try and say anything to make you feel better, but the reality is, even at your age certain kids are uncomfortable with difference. Their reaction is at best one of surprise, and at worst, trying to be mean. The key is appreciating that no matter their intention, whether inspired by curiosity or cruelty, it is a waste of our time to try and change their behavior.” I paused. “And by the way, this is not only a lesson for you, but for me, and all the parents out there that have to sit on the sidelines, watching our children endure whatever may come their way.” If we allow it to penetrate, it can rip us apart inside. I continued. “You know, Baba (my father) has an expression I love: Worry about the things you can do something about.”
I proceeded to tell Ethan that, years ago, I first noticed kids reacting to him at the end of the soccer game, even before he became aware. “Mom, what did you do???” I explained that I responded by signing him up for soccer clinic. I couldn’t necessarily stop kids from staring or reacting strangely, but I could put our energy into helping him become a good player. That’s something I could at least control and expect positive results. Ethan seemed content with my response, and began to get ready to go to his friend’s house to watch the football game. “The Giants are going to win today Mom, I just know it!” To our delight (and relief), just like I have managed in my own life experience, his has made him incredibly resilient, and already by age ten, Ethan has learned to quickly move on from experiences other kids his age could never fathom.
Late that night, I reflected on my final tip to the same mom. My suggestion was to continue to support her son’s friendship with the smaller boy. Now that was something in her hands.
The water was so cold, it practically stung. But I didn’t mind. Even though it was only minutes after 6am, diving into the pool at Windsor Swim Club in Urbana, Illinois, to swim laps was, for me, the equivalent of sheer bliss. Since childhood I loved how my body felt as the gentle waves pushed against me. But beyond the physical activity, I also cherished the almost meditative state while being submerged underwater. For me, however, it was more than that. This was my time. Because no one else was ever crazy enough to get up that early, I had the entire pool to myself. This meant pure freedom– I could take off my shoes in peace, without becoming self-conscious from stares at my very unnatural looking feet; I could dive into the pool feeling completely uninhibited.
But with only my thoughts to distract, any sense of joy was temporary. As I pushed out my arms and pulled them into the water, my mind returned to the prior day and became overwhelmed by sadness. My friend Courtney and I had gone to the nearby Marketplace Mall. “Meg, you should buy this—it is the perfect color red for you!” She was pointing to an adorable short skirt. I admired it, but shook my head. “Nah, I don’t think it will look right on me.” As we passed through The Limited, our favorite store, I found myself rejecting things that I would otherwise have loved to try on. Instead, I attempted to turn the conversation back to my friend. I picked out a blue dress and offered it to Court, pointing out that it matched her eyes. When she went to try it on, I turned to admire some jewelry, thinking that at least the necklaces would fit me.
As I flipped back for another lap, it was my own harsh reality, and not the crash of the water, that slapped my face. Not being able to wear most types of shoes was more limiting than even the best of my friends could possibly imagine. By not being able to ever wear flats or heels or almost any kind of shoe, I could rarely choose the clothing I would otherwise love to wear. My outfits were always selected knowing I had to wear them with boots, ankle boots, or sneakers in mind. In high school this never really seemed to matter, since mostly we wore jeans. However, in this summer after high school I was growing up and appreciating the full extent of my shoe limitations.
But by the time I lifted myself out of the water, I felt refreshed, even positive. With no one in sight, I walked back and forth around the edge of the pool—just because I could. It felt liberating. When I arrived at home, my Dad was the only one up, reading the paper eating his cereal. “How was your swim?” “Fantastic!” I had already moved on.
“Mommy, when you die, will I get all of your jewelry?” Savanna, at the age of six, already realizes I have an inordinate amount of necklaces, in particular. John, in earshot of our daughter’s blunt and pragmatic comment, laughed aloud. I am actually not surprised by John’s reaction. Every time my husband of thirteen years has bought me anything for an occasion, it has been either a necklace or earrings. I suppose my restrictions are not limited to me—they impact those who want to buy me gifts, or I suppose benefit from any inheritance. Although it has been years since my teenage trips to The Limited, my choices in what to wear continue to revolve around the following question: Can it go with boots, ankle boots, or sneakers?
But something happened this past week about which I am cautiously hopeful. Aviva Drescher (Real House Wives of New York) and I were exchanging emails after her recent Guest Flaunt. Having lost her leg on a conveyor belt at the age of six, Aviva spent much of her childhood like I did, hating the stares. At one point in her essay, Aviva even mentioned that she would cover her prosthetic leg, never wearing shirts or dresses, always choosing pants and long skirts. Finally, at the age of twenty-six, Aviva was able to have revisional surgery to fit into a “better-looking” prosthesis. “Finally I could wear heels!” she exclaimed in her Guest Flaunt. Although Aviva mentioned to me later also having to wear “crazy boots” as a child, she seemed to have ended up with more fashion options than I have, despite my having both legs. So, as I thanked her for her beautifully written piece, I mentioned to Aviva that I would always watch her on the show and live vicariously through her fantastic, gorgeous fancy shoes!
Later that day, I received an unexpected email from her. “Meg, why can’t you wear heels?” So I explained that my one toe on each foot, along with its shape never left me with the option. Aviva’s response startled me. “My prosthesist can do almost anything!” For those of you that have read through the majority of my posts, you’ll know that I have loathed special orthopedic shoes and devices, especially the “moon boots,” created for me when I was in my youth. Yet, after listening to Aviva, I thought, “Is it possible that after all these years, I might be able to wear heels?’
Here is my answer. Perhaps. I don’t know. All I can promise is that I will keep you all updated as I (and to the extent I) explore the possibility. But even if my attempt to finally wear heels and have the long-awaited chance to freely pick my wardrobe actually fails, I am actually fine with that result as well. Here is why: As I sit writing this post, it has been over a week since we lost power in our family home due to the recent hurricane that assaulted the East Coast of the U.S.. Despite the inconvenience, we are very aware of the devastation experienced by so many and we feel fortunate that our family is fine and our home ultimately unscathed. The hardest part has been adjusting to life without electricity.
But this post storm experience has been quite valuable. It reminds me how hard it is to adapt to something we enjoy all the time and certainly take for granted. John, the kids and I are struggling without power, but that’s only because we are used to the convenience in the first place. Would a new prosthetic allowing me the full freedom to shop really be that big of a deal? I think not. That is because I have never had the opportunity of wearing heels and all that might follow, anyway. If I can get that chance, well, that would be icing on the cake. Enjoyable, but not essential. Missing something I have come to rely upon, now that becomes the travesty.
For several days post-storm, John and I stayed at a hotel with the kids to at least temporarily escape our cold, dark house. The kids had been swimming together during the day all week, but on the last day of our retreat, I woke up at the crack of dawn practically. By rising first, here was my chance! When I arrived at the pool, hardly anyone but the woman handing out towels was there. I walked around the length of the pool in my suit with my feet fully exposed, just because I could. The minute I felt the cool water temperature, I became instantly energized and grateful for the unexpected post-storm pleasure. As I flipped to begin my second lap, it suddenly occurred to me that I was wearing my new, favorite suit….the one I had chosen this past summer while in Nantucket. There must have been over a hundred swimming suits, and I purchased the one that I loved the most. In this case, shoes were irrelevant! Completely tickled, I practically grinned underwater (not recommended…). When I returned to the room, John looked up. “How was your swim?” I turned to him and grinned. “Fantastic!” I had once again moved on.
I wrote the below post last week just before Hurricane Sandy hit the East Coast. Posting a day early while I have some juice left in my laptop (no power since Monday). I hope all are faring well to the extent impacted by the storm.
We were all in our freshman year and dressed in white, anxiously waiting the unexpected. There were about 20 of us in my pledge class. After several months of the initiation process, we were finally going to be activated as full-fledge members of Kappa Kappa Gamma. At the University of Wisconsin-Madison there were many thousands of undergrads. When I first came to the house during “Rush” the prior August, the girl who came to be my “pledge mom” encouraged me to consider their house. After all, she told me, “Joining a sorority represented a place where, in a gigantic school, you have a place you just know you belong!” Her name was Marta and like many of the Kappa girls, she was a stunning beauty, with blond hair and sparkly almost crystal-looking blue eyes. I was intrigued. Growing up looking so blatantly different from the rest, even though I had several special friends I cared for greatly, I never actually felt like I fully belonged anywhere. In those days, I tried so hard to assimilate so that no one (including me) ever would focus on my physical difference. Fitting in meant ignoring my difference, hoping others would take notice of anything else, but that. I longed for the experience where I could really fit in.
That evening, my pledge sisters and I were told by our pledge master to follow one another downstairs in a single row, one by one holding hands, to the basement of the Kappa House. There, also dressed in white, were all the other sisters, smiling at us. “This is it!” I beamed with pride at the thought of being selected by what appeared to be an elite group of women. No matter most of them were blonde. Already my favorite two girls in my pledge class, Lia and Jessica, were of Italian descent, and dark haired like me. I finally felt like I fit in. “Quiet everyone!” The Kappa President raised her voice. “Before you can be activated, we need you to all learn the secret Kappa handshake!” Both my face and stomach dropped at once.
I stood gazing at our 7 month old son, Ethan, in our kitchen in Westchester Country, New York. The kitchen was so tiny that the seating option was for Ethan’s high chair. The phone rang. “Hi Meg!” It was my friend Diane. “I was thinking about you today,” she remarked warmly. “I just heard about this organization called, “Helping Hands,” in Boston.” She continued. “It is a group of people that get together and as far as I can tell, many of them have the same condition as you and Ethan have.” “Oh, thanks,” I responded, trying not to reveal my agitation. I quickly made up an excuse to get off the phone. In that moment, my husband John walked in. “Who was that?” “Johnny, can you believe Diane? Why would I ever want to be surrounded like people born like me? It’s not like I need any comfort. Ethan doesn’t need that either. He can always look at me and feels like he belongs!” John looked at me with understanding….sort of.
A few months ago I posted about a 4th of July evening in the 1970’s when I was a small child and searched the crowd looking for someone else born like me. I never found one. For many years afterward, I stopped looking and tried my best to shift attention away from my hands and feet. I didn’t succeed much at that either. Still, my friends took my cue and pretty much never discussed my condition unless I brought it up. Not that it was taboo, but as far as I was concerned, the more time off the subject the better. Furthermore, the thought of spending any time with anyone that looked like me made me uneasy. I suppose it was because if I were grouped as “one of them,” then I couldn’t belong into the category of “one of us.”
Years have passed, and clearly I have matured from my prior outlook. In fact, I agreed to speak in Boston this coming January at a conference organized by Helping Hands, the same group my friend, Diane, had tried to tell me about years earlier. To make the experience even sweeter, Tony Memmel and I have worked out that he will join me for the occasion and play live!
But just the other day, as I was presenting to the kids at Ethan and Charlie’s school at their Assembly, it occurred to me not only how far I have grown, but also the positive downstream affect it seems to be having on our boys. During my presentation, we began speaking about what type of things each child had in common with one another, perhaps something difference that was not necessarily obvious at first glance. At my prompting, the kids did a “talk and turn,” where they discussed the topic with interest and, to my relief, even enthusiasm. When it was time for the children to quiet down, the Principal raised the two fingers of her right hand together, like a peace sign. This was the symbol she obviously used to grab everyone’s attention and command silence. I didn’t even have to guess how Ethan and Charlie must have felt every time this symbol was used at school. In that moment the girl in me felt like an outsider. Once again I was down in the Kappa House pretending I didn’t care that I could never learn how to do the secret handshake. However, I had left that same girl behind. I didn’t have to be like everyone to feel like I belonged, and I hoped our sons could learn this lesson much earlier in life than their mom did.
As we came close to the end of my presentation, it was time for me to play Tony Memmel’s new music video, and I needed the room to pay close attention. The Principal began to make her move, but I walked over to her and said, “I’ve got this.” “Hey everyone,” I said aloud. The kids’ eyes were all on me. “I have no idea what to do with that two-fingered peace symbol thing!” They all grew silent, and some laughed. “And so, for at least my presentation, when it’s time to get quiet, like now, can you all do me a favor and simply stick out one finger rather than two? Believe me, one is good enough!” I was thoroughly elated at the site of hundreds of children facing me, holding up one finger in unison. It reminded me yet again that I no longer needed to try and be like others. The only way to be “one of us” was actually to be true to myself.
Later that day when I picked Ethan and Charlie up from school, I wondered what their reaction would be to my presentation. Ethan ran up to me. “Mom, you were really great! All my friends thought so too!” He was clearly proud and my heart almost burst. Charlie said nothing. For the moment, I let it be…… until it was time for bed. I waited for him to mention my talk to the kids, but not a peep, so I couldn’t help myself. “Char—what did you think of my presentation today to the kids in your school?” I waited for what felt like awhile. He was clearly deep in thought. Rather than answering my question, he gave me a better reply. “Mom, when do we get to go to Boston? I can’t wait to see the other kids that are born like us!” I melted.
Of course for those of you that follow me on Facebook, I just had to end this piece with the following exchange:
Savanna: “Mommy, you, Ethan and Charlie are so lucky.”
Savanna: “Because if you want to start a club together, you don’t even need to come up with a secret handshake. All you have to do is stick out your fingers and know you belong!”
I was sifting through my limited clothing options, already late for my summer job in the law library of a mid-sized firm in downtown Chicago. Having just graduated college, within a month I would be off to New York City to attend law school. Nevertheless, I was cherishing this last opportunity to live in Chicago and to spend the summer with my closest friends from UW-Madison who would be staying in the Midwest.
With the little income I had from my few weeks at the job, I had purchased several professional-looking dresses from a discount merchandiser near Michigan Avenue. Standing by myself in my rented one-bedroom studio, I hesitated only for a moment, and then reached for my favorite–a pretty dark purple dress. I placed the dress on my bed, and zippered it down using each finger and my arm for leverage. Given my shortened forearms, the ability to zip a dress while wearing it, was physically impossible. At that moment, I was sorely missing my sorority sisters, who had always helped out when I needed a zip.
And so, I proceeded to put my new outfit on, leaving the back partially unzipped, with my bra exposed. As I finished the final touches on my hair and make-up, I grabbed my purse, preparing for the bus ride along Dearborn Street to my office downtown. “Thank goodness you are here today, Kevin!” I had just emerged from the elevator, elated at the sight of my doorman. “Good morning, sunshine! How are you doing this beautiful day?” I immediately looked around to make certain the coast was clear. Once confirmed, I swung around, exposing my backside to him. Without a word, Kevin knew the drill. He proceeded to zip me up and sent me on my way. “Thanks so much. Alan is here for the late shift tonight when I get home—are you sure, Kevin?” “Positive, Meg. Have a great day.”
The day was scorching and humid, an awful mix in New York City. Down in the subway, it was even hotter. Despite the temperature, I wore an attractive red sweater over my black jumper and wouldn’t dream of taking it off, given it would show my partially exposed back. As I sat on the number 4 train downtown to my job, I began to perspire.
When I arrived, my new work friend Kim was waiting for me. “Hi Daryl!” “Hi Daryl!” I chimed back. We borrowed this joke from an old Bob Newhart television show where one of the characters always introduced himself by saying, “Hi, My name is Daryl. This is my brother Daryl, and this is my other brother Daryl.” This was our code language. And so, following our pre-arranged protocol, Kim followed me into the bathroom and zipped me up. “See you at 6pm Daryl. Let me know if you need to leave earlier or later.” I beamed at my friend. “Thanks Daryl. See you at 6!”
As I packed for my trip to California for work, I hesitated. Could I somehow bring my favorite white, black and grey dress if John wouldn’t be there to zip me up? Thinking through my options, I came up with a plan, and dialed my closest friend from the office who would be joining me on the trip. “Julie, when we are on the West Coast, I know this is a strange request, but would you mind meeting me at my hotel room one morning and then later at night to zip up and down my dress?” “Sure, no problem. Just text me when you want me to come to your room.” To my relief, she seemed totally unfazed.
But when the morning came that I was to wear my dress, Julie was a no-show. I checked my phone, and found her text. “Hi. Can U wait 4 me? I am stuck on a conf. call. Sorry.” But I had to get to the office, and was left with no choice. As I stepped onto the elevator, I began to say a slight prayer to myself that there would be a female working behind the desk downstairs. To my relief, as I stepped into the lobby, I saw Julie from the corner of my eye, on her phone call. Motioning to me, I quickly walked over, turned around, and she closed the deal.
As I sit here writing this blog post on an early morning flight back from that same business trip, I am incredibly parched. After an intense week of work and late final night, I fell asleep on this flight and missed the beverage service. Although I had the foresight to buy a water bottle at the airport, I haven’t been able to twist off the top since for whatever reason, I can only open the Poland Spring type. That alone took me years and built-up strength to accomplish. I think the first time I was finally able to independently open a water bottle was a cold Poland Spring, circa 1998.
Lately, I have been giving the reality of true physical limitations a lot of thought. And, I have a confession. In the mornings, when I pack Ethan and Charlie’s snacks and lunches before they head off to school and I off to work, I must admit I “pre-open” certain items for them. While they can certainly handle sandwich bags, there are other things like water bottles and plastic bags filled with pre-sliced apples that get a little cut, tear or twist from me before they go into the lunch bags. I started doing this a few years ago when, one day in Kindergarten, Charlie had a friend over for a play date who told me that his big sister didn’t want to have to sit next to Ethan because she ended up having to open things for him. At the time, Ethan was in the 3rd grade. I can remember the moment as if it were yesterday. As I heard the story, my heart sank and my stomach tightened. I knew there were simply some items he could not independently manage. My holding back would not change that fact. So, from that day forward, I began intervening….sometimes.
My mother and father raised me by never proactively helping me with anything; the assumption was always that I would figure it out myself. This type of parenting was not only appropriate for me, but arguably is the most ideal way to raise a child born with any type of physical limitation. As I have written in past posts, I cherish what my parents did for me (or actually, didn’t do for me) along the way. I am sure it has made me the fiercely independent woman I am. But I wish it were that simple. For example, is it possible that my parents never zippered me up as a child? As much as I like to say I can practically do everything but play the flute, the reality is, I have my limits. Given the reality of certain physical limitations that are undeniable for me still as an adult, I couldn’t have been that independent. As a parent of children born like me, I struggle with finding the right balance between holding back and intervening. I truly believe that it is in all of our best interests to resist the urge to do things for our kids. They have to be free to navigate their lives, even the hard parts. But by having “given birth to my difference,” as I like to put it, I have such unique insight into what really is possible for them, and what isn’t, at least for now.
In the cases where any physical attempt is essentially pointless, the only option becomes swallowing their pride and asking a teacher or another student to help. I suppose it comes down to this: In this context, my parenting moment is no longer about encouraging independence. Rather, the priority becomes preservation of their dignity. Our sons walk this earth just like their mother, where the assumption by most is that there is a lot we can’t do, regardless of reality. Just the other day Charlie commented to me (with frustration) that on the playground during recess, a kid he didn’t know asked him if he was even able to throw a ball. By my helping them pre-open the tightest of water bottles and impossible wrappers, I allow them to create the illusion of total independence at school, even where they are physically lacking. Maybe, just maybe, seeing they are self-sufficient during mealtime will mean that other kids will not always jump to assume our boys need more help in other circumstances they are freely independent.
Believe me, I know as they grow-up I will not always be there, and inevitably they will have their own version of the unreachable zipper. But for now, this is my way of providing some invisible support. For our sons, I am the doorman in the lobby in Chicago, I am my friend Daryl or Julie from work, where the physically impossible becomes possible….. with a little help.
With one hour of the flight left, I just sucked it up and asked the guy next to me to open my water bottle. He said, “No problem.” Perhaps not for him….
The ride on the bumpy bus was in a word, nauseating. As the vehicle climbed into higher elevations, I looked at the locals surrounding me, my parents and my two brothers Peter and Teddy. There were two people sitting behind us holding live chicken on their laps. The ride was so long I noticed urine I presumed to be from the chickens trickling down the aisle to the front. As I lifted up my feet holding my knees close, I noticed that an older man decided to blow his nose—directly onto the floor of the bus aisle. I almost vomited. However, when we finally arrived to the Swat region of Pakistan from where we were living in Islamabad, I looked at my surroundings and felt newly energized. Years later when I first saw the Swiss Alps, I would be reminded of this moment.
As soon as we took our first few steps, a guide emerged, motioned to my dad and immediately led us toward the nearby water. The clear stream ran next to the rocky footpath. I loved the cold sensation of the water as I leaned down and extended the single finger of my right hand to feel the temperature. We were surrounded by the most beautiful, yet underdeveloped and rugged terrain. Wearing my only pair of dark brown lace-up shoes, my tiny feet betrayed me as I often stumbled crossing the path of rocks. At only four, Teddy, with his fully-formed feet, could already better manage the uneven terrain as compared to his older sister.
Within an hour we would reach the village. There were as many animals as children and as we came closer to our destination, a few children began to follow us. I would turn every few minutes to see if they were still with us. “C’mon Meggie.” It was my father beckoning me as I had fallen slightly behind my brothers and parents. A professor with a concentration in Middle Eastern studies, my father had already spent years studying the region and did not seem fazed whatsoever by our young followers. After all, it wasn’t every day that an American family passed through Swat. Of course our presence would not go unnoticed.
In the village of Mingora, there were hordes of Pakistanis spread up and down the main road, selling various goods. The colorful textiles and shiny gold jewelry and accessories captivated me. Walking through the market as a family, a beautiful coat suddenly caught my eye. The coat was completely embroidered with the colors of the rainbow and yet so petit it seemed designed to fit Barbie, herself. At this point in my young life, I had never heard of Joseph and his “coat of many colors” (or the Broadway “Technicolor Dreamcoat” version), but if I had, this would be the miniature version of the robe. My mother immediately recognized its beauty too, and without saying a word, gave me a single piaster for payment.
I approached the seller and looked up at her almost black eyes, small, tanned and somewhat grimy face. The only thing we shared in common was our raven-colored dark hair. Only a year or two older than I, she was surrounded by several adults and one other child. When I pointed to the coat, she immediately noticed my sole finger. In that moment, we both stared at one another for a long time….with pity. Given my blatant and seemingly unfortunate difference, she looked at me as if my life was destined for suffering. Given her minimal surroundings, I looked at her as if her life was destined for suffering.
I have been invited to speak in the coming week at Ethan and Charlie’s school. The Assembly is called, “Character Counts,” and focuses on themes like respecting difference. Our town Mayor, the school Superintendant and Principal will also be speaking. In hindsight, I was probably a a shoe-in for the key-note. At first, I wasn’t going to even prepare a slide deck. After all, I figured, who needs a power point when I can clearly be the best visual? But then I reconsidered, reminding myself that I would likely lose my grade-school audience with a 20-minute speech where my hands were the only attraction.
And so I have decided to speak about various forms of difference, both obvious and invisible. I will draw on my “Beyond the Moon,” blog post from this past summer, and want to help inspire kids to consider where they might be letting other peoples’ judgments affect them and hold them back. Still, I felt somehow something was missing.
And then the other day I was saddened to hear that Malala Yousafzi, a 14-year old from Swat, had been nearly fatally shot in the head while traveling in a open air vehicle filled with other girls coming home from school. Two other girls were injured, also. Despite her youth, Malala is well-known within Pakistan and the international community from a blog diary she kept for BBC’s Urdu service. Through her writings, that began when she was only eleven years old, Malala earned the admiration of many for her courage in speaking out about life under the brutal rule of Taliban militants. She had become a determined advocate for education for girls, something the Taliban and many conservative forces strongly oppose in Pakistan. In 2011, Malala was nominated for the International Children’s Peace Prize and the same year won the National Peace Prize in Pakistan. After reading several of her diary entries this past week, it suddenly hit me what was missing for my discussion.
Malala represents difference not based on what she looks like, but her willingness to stand-up for what she believes in, no matter the judgment, no matter the danger. Malala’s amazing courage made me think about how sometimes the hardest thing to do as children grow-up and navigate their way, inside and outside school, is to go against the grain of what the other kids are doing, saying, or perhaps even wearing. Those who stand out rightly fear being categorized as different, and not in a good way. Difference becomes ugly, rather than beautiful. The pressure to conform is enormous.
Appreciating difference will be an important part of my message. Living your life to its maximum potential, despite external pressures, is key. But the willingness to stand-up for something or even someone you believe in, despite the potential backlash, is the epitome of courage and the true acceptance of difference. So many of us hide behind the opinions of the majority, our true feelings cloaked. Yet not everyone holds back, hiding who they are and what they like or believe in. It’s amazing to be in their presence. They are as beautiful as Joseph’s amazing dream coat must have looked thousands of years ago; as beautiful as Malala Yousafzi herself.
There must have been 50,000 people surrounding us at Camp Randall Stadium. I looked from the center of the 50 yard line up at the large crowd. Like the eleven others standing in a perfect row next to me, I was wearing a red and white outfit provided by our University. One by one we were introduced to the vast audience. When it was my turn, the announcer boomed, “Next on our UW-Madison Homecoming Court is …Meg Weinbaum from Urbana, Illinois!” I waved my single finger on my right hand high in the air and then turned around and waved to the other side as the crowd cheered.
It all began the month before. Through my officer position in my sorority, Kappa Kappa Gamma, I had become eligible for the University’s Homecoming Court. After many grueling interviews by UW-Madison Alums and Faculty, I was selected. Although it at first sounded a bit silly, the month of service proved rewarding. We volunteered visiting the elderly and spent time with children in the University of Wisconsin Hospital, among other memorable events. The day before the game we also had the privilege of visiting Governor Tommy Thompson at his office in the Capital and having dinner with the school’s Chancelor, Donna Shalala at her home.
At the time, I was so incredibly proud to have been selected to Court, viewing it as one of my more boast-worthy achievements. In high school, although I definitely had friends, I was never a candidate for prom queen or anything like that. This was a new and welcome experience. However, in those days, I was still far from flaunting my difference. For example, when we paraded through town riding in a convertible, I would barely raise my hand to wave, feeling awkward. Although I had waved to the crowd at the stadium, the people were so far away that I couldn’t really feel their scrutiny. After a while, however, I began to have mixed feelings about being selected. After all, I wasn’t chosen by my fellow students, but by adults, which is far less gratifying. At that age, we just want to be liked by our peers. It is an insecurity that can stay with us for years, unless we’re fortunate enough to grow out of it.
I have to admit to something, and you may very well disagree with me. I have struggled with Whitney Kropp’s decision to attend her Homecoming ceremony. Kropp, a Michigan high school student who had been bullied in the past, was chosen surprisingly by her classmates to be on her school’s homecoming court as a prank. Initially surprised to learn she had been nominated, she soon felt humiliated and betrayed when she found out it was all a joke. “People had bullied on me, I guess, for my looks, how I did my hair, how I dress, my height, so I guess they thought, you know, maybe someone that is different is someone that’s an easy target,” Kropp said in an interview late last month.
When word spread throughout her community, the adults came out in full force. As Kropp’s mom put it, “You want to protect your kids, and you feel angry and mad at what has happened, but at the same time the outpouring to help her has been beyond what was expected.” A salon owner donated services to cut, color and style Kropp’s hair, and other local businesses paid for her dinner, gown, shoes and tiara for the dance. Rather than staying home wallowing in self pity, Kropp chose to attend the ceremony. Afterwards, Kropp told reporters she was glad to remain on the court.
On the one hand, I am happy for Whitney Kropp—that she had her day in the sun and felt special. Thanks to significant adult and media intervention, Kropp was able to feel the love from the community. In fact, it all sounds sort of clichéd —like in those bad movies from the eighties where a girl who was picked-on in high school, has a make-over and then suddenly everyone likes her. Initially, this all sounded like a sweet story– until I read another quote from Kropp after the ceremony. “I am so overwhelmed,” she said. “I am so happy…the school is fantastic, they treated me so well.” Kropp’s appearance was met with thunderous applause and camera flashes from her fellow students. She continued, “Stand up for what you believe in, and go with your heart and your gut. That’s what I did and look at me now. I’m just as happy as can be.”
It is hard for me to swallow that the same students that voted for Knopp out of mockery all of a sudden had a change of heart. What those fellow high school peers did was cruel, plain and simple. It is the epitome of what someone, especially someone young, with a difference fears the most—being made fun of. But when you are a teen, unless you are part of the “in-crowd,” you invariably feel different, whatever your exterior. A quick media bonanza and a new fancy dress aside, did Knopp’s new style change the way any of those kids that voted for her now view her? Did she really prove anything? While she certainly had the support of her community and those that tuned in nationwide, I personally don’t think so.
Here is why: The fairytale ending to Knopp’s story doesn’t ring true to me. Although the headlines read things like, “The Joke’s on Them,” it simply does not make sense that these nasty peers would suddenly now have a change of heart. Granted, in deciding to go ahead and attend the ceremony, Knopp copped an “I’ll show them” attitude that is to be commended. But let’s be real about this. None of those teens that voted for her cared for her before the ceremony, and as lovely as she very well may be, none truly care about her now. My gut tells me that if this story did not draw national attention, the same people in Knopp’s class would have continued to play out the joke. I suspect by next Spring she might be on the short list to be voted for Prom Queen.
Knopp is still young and perhaps I’m a bit jaded, but I believe that our time is better spent appreciating the people who care about us and not chasing attention or approval from those who don’t. So I ask myself, what if, instead of showing up to the Homecoming ceremony, Knopp found the courage to spend that evening surrounded by her loving family or anyone that truly cared for her? What if she had concluded that her happiness was not dependent on whether she proved something to people that are not worthy of her time? What if she learned to experience life on what I call “the other side,” where confidence and happiness comes from within? In that case, she would not have needed the community’s support or the free makeover. It wouldn’t be a Hollywood ending, but it would be far more satisfying.
“Baby! baby!” It was one of my earliest memories, if not the first. Petey and I were sitting on the steps with our grandma, waiting for our parents to return with our new baby brother from Mercy hospital in Urbana. Theodore (“Teddy”) Laurence had just arrived to our delight. As Petey and I jumped up and down on our front lawn to take a peek, we began to run around, again screaming, “baby! baby!” Excitement aside, the depth of what my parents had just willfully undertaken never occurred to me. Back then, there were no sonograms, no genetic tests weeks into pregnancy to reveal any abnormalities. Rather, by choosing to get pregnant again after having a daughter born with ectrodactyly, this was probably the most significant symbol of my parents’ complete acceptance of me.
“Daddy, why does Meg have only one finger on each hand?” Teddy was not even four-and-a-half. The two of us and my older brother Peter were getting out of our family’s Plymouth Volare station wagon to eat at “The Red Wheel,” my favorite local restaurant in Champaign, IL. I didn’t love the Red Wheel for its food. In fact, according to my mom, it was so unappealing that my parents felt badly for the owners and never used the coupons that came in the mail.
No, I loved the place because in the front entrance was a big wooden wheel loaded with red lollipops for the taking. As we arrived, I was shaken by Teddy’s new realization that his older sister looked different. Not even grabbing a lolli did the trick. I immediately wailed. “Daddy, even Teddy is talking about my fingers. It’s just not fair.” But, by the time our food arrived, Ted, Peter and I were eating our fried chicken and giggling about nothing important.
I was already huge. Nearly six months pregnant, my every step across the grocery store was slowed by the weight of the baby who would become Charlie, our second son. I had just gotten off the phone with my brother’s wife, and felt a jolt of excitement. I simply knew what I needed to do. Oh yes, and I needed to inform my husband….didn’t want to forget that. My heart began to race at such a wild pace, I couldn’t stand it anymore. “John, John!” I practically yelled from my cell phone in the middle of the pasta aisle as soon as he picked up. “What is wrong?” Given my condition, I could hear my husband’s voice rise with a detectable tension. “Nothing! Guess what honey?” “What?” “We’re going to have another baby!!!” It was at that moment, I believe John became less concerned about my physical state, and more concerned about my mental status. “Of course we are having a baby. What are you talking about?” I began to laugh, and noticed a few people staring. In hindsight, perhaps they were staring already at my hands and not disturbed by my merriment, but now I actually noticed. “Oh, not this one in my belly. We are going to adopt a baby! Babe, are you there?” Silence.
When people learned that John and I adopted Savanna from birth, sometimes I wish I could read the thought- bubble over their heads. Okay. Some might very well have had a sincere bubble filled with nothing other than, “That is so great, good for you John and Meg!” But realistically, other bubbles probably read, “Oh, I guess she wanted the girl,” while other bubbles might have read, “I bet they wanted a child that had no physical limitations.” My father-in-law’s bubble almost certainly read, “I did ask you at your wedding for grandchildren, but so many so soon? You already have a three-year-old and a newborn! Are you both nuts?”
There were actually a lot of factors that went into our decision. We always figured we’d want three children, just like the families we had each grown up in. But I was afraid. An ectopic pregnancy years earlier had led to emergency surgery to save my life. And sure, I also wanted a girl, if possible. Oh, and I probably had raging hormones, let’s be honest. But there was another factor that also influenced my thinking and it came to me as I stood in that grocery store speaking with my sister-in-law, who was herself adopted. I realized that one of the reasons that I feel so comfortable in my own skin today is because I grew up with siblings that did not have my condition. By having to face their reactions early on and also seeing how soon they could get past my physical difference and just treat me as me (their annoying sister), I knew that I could be a part of that norm.
And so, our beautiful Savanna was born in the Fall of 2006. As I held tightly on to her birthmother’s hand, I felt an overwhelming sense of peace. Just like I had my brothers, Ethan and Charlie now had their baby sister–a kid born with all fingers and toes intact, who would embrace them unconditionally. As much as John and I have been grateful they have had one another, her questions would both prepare and even empower them for the world that waited.
One surprising thing about raising Savanna has been that as her mother raising her, I am newly offered the perspective of the 10-fingered sibling, something I never fully considered with regard to my own brothers. Last season, she confided in me that a boy at soccer had noticed me, Ethan and Charlie and began to make fun of us in her school. “Mommy, he was so mean about the fact that you and Ethan and Charlie were born with different hands. He said you looked weird!” I paused and gave her a hug. “Hon, what did you say to him?” I told him he is not my friend anymore.” I wondered later with John how many times my brothers must have defended me behind my back or endured thoughtless comments and certainly countless stares from people. I always hoped that our kids would love one another. Through Savanna’s eyes I am seeing how she not only adores her brothers, but honors them. Happily, I see that the benefits flow both ways.
The Greek origin of the name “Theodore” is “Gift of God,” and “Peter” is “rock” or “strength.” My two brothers were and have remained one of my greatest gifts, people who I have leaned on, providing me a lifetime of unconditional support.
And by the way, the origins of the names “Ethan” and “Charlie” both mean “strong.”
“There’s a lot I don’t have that other people have, but there’s a lot I have that other people don’t have.” Aimee Copeland, September 2012
I looked around the small, dark apartment on 14th street near Avenue A. This had been my third or fourth visit to see Reese at her home. The first time had been inadvertent. I was with a friend at a restaurant in the Village in New York City. We noticed a sign on a door, “Tarot Card Reading: $20.00.” Figuring it sounded like a fun way to amuse ourselves, we each took a turn to see the small woman with black hair and equally dark eyes waiting to inform us of our future.
My friend went first. “Meg! Reese told me I am going to move to the West Coast within 5 years and I will meet my husband there!” she reported excitedly. I got up, and grew nervous, yet anxious to meet Reese. Would she be able to diminish, possibly even remove my fears about whether I would ever marry? Have children? Would they be born with my condition? I got up to hear my destiny. The room was more the size of a broom closet adapted for this purpose. Reese was seated next to a small wood table. She pointed to the empty chair across from her. “Sit here,” she beckoned to me. Reese appeared to be in her fifties, and was quite beautiful, but almost hauntingly. Her dark eyes focused on me, and I could see the reflection of the candles on the table in her pupils.
Without saying a word, Reese began to shuffle cards and then lay them out neatly on the table. I was completely unfamiliar with the Tarot cards, other than having heard about them. Nonetheless, I was intrigued. There were many cards, each with an individual picture, representing something I did not readily understand. None of them had any meaning to me, but when Reese had me select cards from the deck, and examined each, she seemed to be in some type of trance. In truth, deep inside I was uncertain whether I truly believed that the cards held any fortuitous value, but the possibility had me locked in, clinging with hope. At that time, I had been dating someone for several years, and wanted to hear her say aloud the answer to my greatest fears. I waited, until finally Reese addressed me. “Meg, you will marry your current boyfriend.” I inhaled. Her words entered me like an opiate and I felt calm. Although I was already a lawyer in Manhattan, what I wanted the most was to be loved unconditionally by someone other than my family. She looked at me, as almost looking through me. “You will have two children, a boy and a girl. They will not be born like you. They will have all their fingers and toes.” Immediately, I exhaled, with tears now streaming down my face.
But my visits to Reese did not end that night. Reese’s initial forecast about my future led me to wanting to hear more. I began to understand what it meant to become addicted to something, or in this case, someone. I began to visit Reese at her home, and paid her for each reading. But I was extremely vulnerable, and Reese was no dummy. As time went on, and as the readings continued, Reese would come up with reasons I needed to “help her family out.” Her son needed a new coat. She needed money for a special treatment for her face. One day I even met her at Century 21, a discount clothing store, so she could buy her son some more clothes. At that time, I didn’t care what I needed to do for her, as long as I could receive my “drug,” the knowledge that everything in my life would ultimately be okay. I had enough sense to know what she expected of me was wrong, but I was too weak to close the door on Reese. I hated her, but needed her.
Katie Couric has a new talk show in the U.S. that I must admit, I have never seen given my work schedule. But if I had the time I would watch. I love Katie’s vibe and decided to watch a taping of her first guest. The interview was with Aimee Copeland, the Georgia student who is now a quadruple amputee after battling a life-threatening, flesh-eating bacteria over the summer. She came on stage and, at first glance, appeared to be a tragic victim of life’s cruelty and randomness.
But in fact, Copeland practically beamed as she carefully walked, with the aid of a new walker, across the stage to join Katie. When Couric asked Copeland if she “ever felt like just dying” her response was practically inconceivable, given her recent ordeal. She gazed at Couric with complete sincerity. “I love life. It’s a beautiful thing…even more so now. Senses are so deepened, everything smells better. Everything is more vibrant, more beautiful.” As Couric described it, “She is one of the most inspiring people I have ever met. Her spirit and determination are just completely overwhelming.”
I was mesmerized. To me, as she spoke, Aimee Copeland’s inner beauty shone colorfully and brilliantly. As someone who was born with and has been living with a blatantly physical difference, it took me years to flaunt. It was not just a struggle; there were times that my insecurities left me, in a word, pathetic. Self-acceptance did not come naturally to me. Instead, it had been a long and winding road, filled often with difficult turns and even negative influences. Although I was always a naturally positive person, that did not automatically translate into an immediate ability to accept my lot in life. Rather, for years it haunted me, leaving me fearful and vulnerable to people like the fortune teller who would soothe me with lies.
This post is written to celebrate Aimee Copeland, a true vision. Her now weakened and imperfect body is actually only an illusion. To me, she is one of the strongest people I have seen in years.
- Sitting on someone else’s pee unexpectedly in a public bathroom
- Nails on a chalkboard
- Being cornered by a “close talker”
- Being cornered by a “close talker” who spits while they speak
- Driving behind a slow vehicle on a one-lane road
- Driving behind a tractor on a one lane road (worse)
July 4, 1976
It was another hot, sticky summer in Urbana, the town where I grew up in Central Illinois. Within a month we would be leaving to live in Islamabad, Pakistan. But for now, celebrating the 4th of July in the year of the Bicentennial was in our immediate focus.
When my parents and brothers, Peter and Ted, and I arrived that evening in the field near the University of Illinois Stadium, I became somewhat overcome by my surroundings. There were hundreds, if not thousands of people, spreading their blankets, preparing for the dazzling show in the sky. Peter and Ted began running around and my parents were distracted trying to keep their eyes on them amid the crowd. I thought this was my chance. Maybe, just maybe, in this massive crowd, I would finally see another kid born like me, with one finger on each hand, one toe on each foot. As we passed through the throngs, I looked at every person’s hands. Even as the fireworks drew everyone else’s attention skyward , I continued my search from our blanket.
Only seven years of age, I longed to know that I was not the only one in this world, different like me. Although too young to articulate, I loathed how I felt when others kids stared at me in public. My brothers were always there for me, but even they could never fully appreciate my experience.
Recently, I had to go to the Midwest on a business trip. As much as I am grateful for my job, I never like to leave my family, so I left quite late in the evening. When I got to the airport, to my dismay, I was at the wrong terminal, and had to make a mad dash across the airport. This served to increase my stress and darken my mood. Upon finally reaching the gate, the agent took one look at me and offered to move me to a seat at “the front of the plane,” which I readily accepted. I had thought she meant to upgrade me to First Class, but I was to be disappointed. The plane was so small there was no First Class – just a seat next to another unoccupied seat, which gave me room to move around. But it didn’t matter. Easy come, easy go, I thought.
What did bother me, actually, was that a few minutes earlier, when she was ready to board the plane’s passengers, she motioned me to come. “Yes?” “Ma’am, go ahead.” She motioned me to walk aboard. So consumed in my book, at that moment, I hadn’t noticed that no one else had entered the plane, at least not yet. Over the loudspeaker behind me, I heard, “If there is anyone else that needs extra assistance, please come up for early boarding.” There it was. You hear people use the expression, “it made my skin crawl,” which doesn’t really make literal sense to me, but at that moment the concept applied.
Often friends will tell me they don’t even notice my physical difference. I appreciate that, given I typically forget about it myself, unless reminded by the world of strangers. I also know people who have issues, or their kids have issues, that don’t show on the surface. They, too, frequently forget my difference and as a result don’t see the big deal in missing a few fingers. As nice as this sounds, it also teaches me that there are very few physically “perfect” people who can actually relate to those of us who are not. I get that. And once you have someone with a physical difference in your life, you certainly can forget all about it. But we don’t. Believe me, we would love to, but we can’t. Being reminded of your difference when it is otherwise a non-issue….how best can I explain?
The other evening I was at “Back to School” night. At the end of the evening, I ran into another mother, and realized I had not put in any money for class dues. As I reached for my wallet to grab the cash, the mother, with (I am certain), the BEST of intentions began to physically try and help me take the money out of my wallet, as she said aloud, “Oh, can I help you?” I smiled and said politely, “No, thanks, I got it.” Reflecting that evening as I sat listening to some favorite music (which always makes me feel good), it hit me. I think I can help people with no physical difference relate to how it feels when someone else makes you feel inadequate. Here we go: Imagine how you feel when you are experiencing your worst possible pet peeve. It’s like fingernails on a chalkboard, or inadvertently sitting on someone else’s pee….really.
As I wrote some of this blog while on the plane coming home, something happened—all of a sudden, without warning. Lightning struck our plane. We heard a thud, saw a flash of light. It was, for at least a short moment, frightening. Fortunately, all was okay and we landed safely with no other disturbance. But I realized something by it. Again it served as a descriptive tool. Just as lightening can strike out of nowhere, even when the day is otherwise sunny, every time someone calls out my difference, even with the very best of intentions, I feel the jolt. It’s typically unexpected, and, keeping it real— depending on my mood that day, it can even feel more harsh than your worst pet peeve.
So why give all these analogies? Even though only some of us look or feel different, all of us can identify with a pet peeve. My hope is to help a reader to understand what it might feel like to live in my skin. Once you can truly relate, then as I stated in my promo video, “Unless you remind them of their difference, people are functioning simply in their own definition of normal, capable of doing everything, within their means.”
This weekend “Finding Nemo” is being released again, this time in 3-D. I have always loved that movie, and the fact that Nemo had an undeveloped “little fin” and he felt like no one ever understood him clearly resonates. When I was seven, I never had any organization around like, The Lucky Fin Project, created by Molly Stapelman. The Lucky Fin Project is designed to not only embrace difference, but brilliantly exposes kids that look different, to other kids that are similar. Not that it really matters how everyone looks. But the Project lets kids who may never meet each other see and relate to how each other feels—the epitome of celebration of difference.
(In my Mother’s words from a journal)
It is clear, even at this early stage that Meggie will always want to have five fingers on each hand. She knows now that she can’t have them, but beautifully accepts the fact. However, there were all kind of questions in the beginning. She first became aware ofher physical difference at age 2 ½ , and even more so at age 3, when she entered a fairly verbal nursery school class. The kids questioned her and she questioned us. We told her that she had one finger because she was born with one finger. Meg seemed to accept it. But then there was the day she started whining in frustration that she wanted five fingers. I told her that people can’t always get what they want, and she stopped.
There were repeated questions on her part and just as many assurances on ours. But from the beginning, whatever inner questions she had herself, she handled the other children’s marvelously. Sometimes the kids acted hostilely, for there is fear for their own possible loss upon seeing hers. However, hostility she transformed into friendship.
One of her techniques was to simply drown out their questions. She always had a big mouth. I recall once being annoyed at the many “whys?” on every subject and decided to subject her to the same line of questioning. She answered all of my incessant whys. It was I who had to stop, fatigued. And she was just three.
“Mommy, you are so lucky. You don’t have to trim yours all the time.” Savanna and I were sitting on the bathroom floor in the house we were staying for the week in Nantucket. We had just finished a long bike ride together. John and the boys were downstairs in the basement, playing ping pong. One by one, I was trimming each of her finger and toe nails. I turned to our daughter and smiled, was once again overcome with Savanna’s spirit– so sweet and gentle. Often I note her efforts in somehow trying to comfort me in my difference, to explain to me all the benefits. For example, just this past summer she had mentioned that I was so lucky to have a small wrist since that meant I could wear her bracelet, if I wanted to.
I have been thinking a lot about the fact that Savanna has just entered Kindergarten. Even with her older two brothers already in grade school, this period will be new for both of us. By contrast, when Ethan and Charlie arrived at Kindergarten and children noticed their hands and then later saw their mom, my difference somehow made sense, even to a five year old. Not that it stopped the stares or the curiosity, but once a child encountered me, there seemed to be less of a surprise after spending time with our sons. Before they started school I reminded our boys that people stare at strangers, not friends; how crucial it was for them to make the effort for kids to appreciate there was more to them than their difference.
But that advice worked for our sons. Savanna’s own difference is invisible. She is adopted, and even though it is an open subject in our household, whether and when she chooses to mention this to her classmates will be up to her. Given her age, it will most likely not happen this year anyway. Even so, she will be confronted with my difference more immediately than her own. Therefore, I must admit, I have been quite nervous about how things will go with Savanna’s classmates upon seeing me. Savanna’s birthday is at the end of September, and I will soon come to the class to read a book. Although there will be at least a couple of kids from her nursery who know me, I am anticipating the rest will be confused, and in the worst case scenario, may even tease our daughter afterwards given the way her Mommy looks. Even if they don’t, one thing is certain–it and I will be a subject of conversation for her to grapple with on her own.
So my stomach tightens. How will Savanna handle their reaction? Can she handle the unwelcome scrutiny of her family, of her own Mother? The thought that she is not ready for this has been like an unwelcome intruder.
And so recently I decided I needed to prepare her, at least on some level, that the inevitable questions were forthcoming. While still on vacation, I decided to broach the subject directly. “Honey, when some of the kids in your new school meet me, they might ask you a lot of questions. After all, my hands look very different than anything they have ever seen before.” I waited with apprehension, and our daughter grabbed my small hand. At only five, hers is now bigger than mine. “Mommy, I will simply tell them you were born that way. And I will also explain to them if they want to be my friend, how your fingers look is not important.”
Savanna looked at me, her inner beauty shining brightly in my direction. “Besides Mommy, there are much more important things for us to talk about.” My eyes teared and I laughed as we embraced. In that moment I reflected back to the time when I was a small child, discovering my own difference. It occurred to me that just as my parents did with me, it was time for me to do the same. It was the best option. I will simply follow my daughter’s lead.
It has been our experience that having a physical handicap has nothing to do with emotional insecurity. If anything, it may further emotional development by teaching the child very early that no one can have everything they want. It would be wrong to say that it has taught her that life is not a fairy tale, for her precious little life contains as much magic for her as any child I’ve seen. When I remarked to Meg once that the trouble with her was that she was just too pretty, she replied, obviously annoyed, “No, I am just right.”
Neil Armstrong took those first extraordinary steps on the moon the year I was born. “One small step for man, one giant leap for mankind.” In the context of the Vietnam War and the assassinations of Martin Luther King and John F. Kennedy, Americans were ready for something to, once again, give them hope. Mr. Armstrong and his crew, through their landmark achievement, accomplished that tenfold. To the millions watching him accomplish the unimaginable, it was as if anything was now possible, at least for that
For one family, at least, the activities on the moon were less captivating than the immediate questions and challenges presented by my birth. I was the first of my family born with a rare condition called ectrodactyly, leaving with me with only one finger on each hand, one toe on each club-shaped foot. Given my physical deformities, an astronaut walking on the moon seemed more realistic than the possibility than their own daughter would ever walk. But within fifteen months I did. My first small step was a giant leap for our family.
I was fortunate to be raised in an environment with supportive parents who never pitied me and certainly didn’t overprotect me. Because of their attitude I grew to be a fiercely independent child. Not only did I walk, but I learned to play tennis, bike, tie my shoes, play basketball, write, and, with the help of an extension device on the slide for my short arms, even play the trombone.
But my condition did not end with me. I share it now with two of our three children. Our eldest son Ethan was also born with only one finger on each hand, and our second son Charlie has two fingers. Unlike me, their feet are somewhat more developed with two toes on each foot, but still small and unusual. Despite their physical difference, we have been raising them and our daughter Savanna with a ‘can do’ attitude, assuring them that the world is their oyster.
Or so I thought.
In truth, as a child, while trombone seemed cool to me, the instrument that I cherished the most was the French horn. However, I never contemplated even trying to play it, given the horn’s multiple valves and my lack of fingers. And so, I held myself back, choosing trombone by default. When our oldest told me he wanted to play an instrument, I assumed the trombone was inevitable for him, too. Likely, so did his teachers in school. So when he came home announcing that his musical instrument “of choice” was the trombone, I simply gave him a hug, and felt relief that he had at least one option.
Since then I’ve changed my mind. Recently, I learned about a man named Tony Memmel, an accomplished guitarist who has played to audiences in the thousands. Tony was born missing his left forearm and hand (a candidate for my modified trombone, if ever there was one). I invited him to contribute a piece to my own website (www.donthideitflauntit.com) and he offered the following inspiration:“Learning to play the guitar was a serious challenge for me and required a lot of time and patience. It ended up taking me eight years to come up with my current method of playing which is to re-create a cast out of duct tape that secures a guitar pick to the end of my arm each time I play….” I was stunned when I read this. Tony, never gave up his quest to play the instrument he loved the most. I tried to think of something comparable in my own life and recalled spending an entire day teaching myself how to tie my shoes. Yet the persistence I employed in that small accomplishment paled in comparison to the years Tony committed to figuring out his own way to play guitar. I was in awe.
All of this got me thinking back to Mr. Armstrong and his defiance of that greatest restraint on our collective imagination, the Earth’s gravity. Inevitably, everyone’s life is filled with obstacles, both externally and internally imposed. Even though Armstrong made it and a small handful of others have followed, his space travels offer the rest of us at best a metaphorical example for overcoming great odds. The barriers most humans face are usually more of the self-imposed variety. We create our own limits.
When I chose the trombone, I believed there was no other physical option. I accepted everyone’s perception that I was just limited. Could I have mastered the French horn or something else? Now I think so. And for our son? I intend to use Tony’s example to inspire Ethan in the future to try something new, something he assumes is out of reach.
Each day presents new opportunities to ask ourselves if the difficulties we perceive are insurmountable, or merely mental. The more amazing people I encounter, however, the more convinced I become that reaching for stars isn’t as out this world as we might think.
I was riding by myself on the ferry to Nantucket, an island in the Atlantic Ocean off the coast of Massachusetts. It was actually the second time in one day I was sailing there. The morning got off without a hitch. John, the kids and my parents woke up in our hotel in Cape Cod near the ferry and had an early breakfast. To our delight, the sun shined brightly, which meant for easy sailing. John had the kids ready to go downstairs, and I was charged with checking the room to make sure we had everything.
This was our eighth summer on the Island, and there is no question it had become a home away from home. After we arrived and began to unpack, I realized I forgot to pack Savanna’s underwear. Ugh. But that was nothing. I then noticed my phone was barely charged, so I began to look for my briefcase, that contained the charger, in addition to my laptop and my husband John’s. All of a sudden it hit me. “John! John!” I yelled from across the house. Where is my briefcase? Did you put it in the car when we loaded up this morning?” My heart sank as soon as I saw his face. He didn’t even need to reply. In an instant, John was on the phone with the Hyannis hotel, where we had just stayed. Motioning me as if to say with his hands, “calm down,” John reassured me from across the room the hotel had my bag with all of its contents.
Although John was willing to go back, I knew I had to take the trip. It was completely my fault we left my briefcase, and I needed to take the trip, if only to detox from the stress of having left both of our computers behind. As I got off the ferry, fortunately, taxis were waiting and I hopped into the first. The driver was a large, even obese man. I directed the driver to the hotel we had stayed the night before. Thankfully, the bag and both computers were there, unharmed. I checked my watch and noted the next ferry back wasn’t due to depart for another hour. “Do you mind taking me to TJ Max?” I need to get new underwear for my daughter.” Not that the driver cared. This is how they came up with the expression, “TMI,” or “Too Much Information,” I thought to myself.
When it was finally time to drop me back at the ferry for my return trip, I handed the driver a huge tip. He had been so nice driving me all over Hyannis, and I figured, why not. And then, as I pulled back my wallet into my purse, the double take. “Oh, I didn’t notice your hands.” “That’s okay, you didn’t have to notice,” I attempted to respond pleasantly.
Inquisitive children aside, I am fascinated by the number of people that approach me and feel the need to comment on my physical difference. You know that “filter” people are supposed to have where they hold back from saying everything that cross their mind? For some reason, when certain people come across blatant difference in another, their filter is dissolved, and they feel like it must be completely fine to discuss that person’s difference. But is it?
For example, sometimes when people notice my hands an unexpected “oh,” comes out. But like in the case of the taxi driver, some people actually comment aloud. I really don’t mind though. It’s as if they are speaking more from a place of innocent surprise at seeing something totally new. It reminds me of the first time I saw the Jungfrau mountain range in Switzerland, and exclaimed aloud, “Oh, my!” But sometimes the behavior is not verbal. I have had, on multiple occasions, people physically jumping back away from me when I reach out to shake their hand for the first time. Admittedly, that is when the reaction stings.
Sometimes I wonder, if the tables were turned, how people would handle the unfiltered comments. For example, what if I had an unexpected, “Oh, I didn’t realize you were so fat!” to the cab driver. Of course, I would never do that. My filter is there, keeping me in check. So then, why is it that, when outside of their comfort range, certain people seem to be well, unfiltered? Something Megan Scanlon wrote in her recent Guest Flaunt resonated with me. “I think it has something to do with people’s need to make sense of the world. If something seems different or a little confusing, people can get anxious…..” Once, I read that we have literally thousands of ideas running through our brains in just one minute. However, those thoughts must all originate from a place of something familiar. Within that context, our filter works.
And for some, that filter even works when unexpectedly confronted by blatant difference. But not always, and not everyone. And I realized something. Just like the person that jumps back after shaking my hand, no matter how much I write and no matter how many people I reach, this unfiltered reaction will inevitably appear again and again. Years ago Walter Cronkite, the CBS new anchor, used to end his program with the saying, “And that’s the way it is….” That message resonates with me in this context. While I hope that my blog and the Guest Flaunts not only help those that are different embrace themselves, but also enlighten those that are not, I believe part of the journey is learning to expect an unfiltered world….and still being okay.
I could have reacted very poorly to the driver, making him feel badly for his outburst. Telling him he should know better. And believe me, if in a foul mood, I have in the past had some extreme reactions to some poorly filtered comments. But perhaps the best thing is to meet the unfiltered reaction with calm, even a sense of normalcy. With that approach the blatant difference that so surprised the observer may become just another one of the thousands of competing thoughts running through his or her mind, no more worthy of specific comment than anything else. And just maybe the next time that taxi driver picks up a fare like me, he’ll simply say, “Thanks for the tip.”
There must have been more than one hundred families in the crowded gym. I was alone, having rushed in from work. Because I arrived a few minutes late for the awards ceremony at Ethan’s basketball camp, the bleachers reserved for families was packed. So, I sat with my back up against wall, on the hard floor.
It was the last day of camp, and Ethan was seated with at least two hundred kids. As much as he loved to play basketball, this was the first time I had sent him to any type of sports-only camp. In my heart I knew, by spending five hours per day not only playing ball but learning technique, I was pushing our eldest son outside of his comfort zone, both physically and, with all the new kids, most likely socially. At the end of the first day, I had called home from work. “How was it, hon?” “Mom, it’s okay, but I don’t think I love it.” “How come?” “I don’t know, just because.” I didn’t press. I could only imagine the volume of stares he endured on his first day; his first hour; his first minutes. But by the second day, when I called again, Ethan’s voice brightened, and he seemed to be enjoying his time at camp much more. Again, I decided not to ask details unless volunteered. I often say that if I were a stay-at-home mom I would be a wreck, worrying about how my kids were getting on with others. As usual, and fortunately for the both of us, I was incredibly busy at work that week; too busy to let myself get consumed with anxiety about how Ethan was getting on there.
“And now, take a look at what our top performing kids can do.” My mind returned to the present at the sound of the Head Coach’s voice booming through a microphone. Immediately, about ten kids raced up to the front of the hot gym and began to twirl a ball on each of their single fingers. Everyone applauded and my stomach tightened. Although Ethan had the sole finger needed for the trick, I also figured it would take a palm and five fingers on the other hand to support the ball and spin. If the coaches were teaching this during the week, had Ethan tried it? Had he been humiliated by the attempt? I felt anxious. And then, the coaches began handing out different awards for varying talent.
For example, I hadn’t even known there was a basketball technique called, “the Spider,” but there was an award for it. Just the day before Ethan boasted that he had figured out how he could do the maneuver, even with his small palm and one finger.
And then, all of the sudden, the Head Coach began to tell a story of a girl named, Cindy. Apparently, he had been coaching her 4th grade team years ago and was extremely upset over a narrow loss. “Excuse me coach, Cindy said to him. “I thought it wasn’t whether we win or lose, but how we play the game?” Apparently, the comment impacted the coach, and it helped him put the game in perspective. But, the story did not end there. Cindy went on to become a great basketball player in High School, but then by the age of 22, she became ill and eventually died from cancer.”
He continued. “And so, in honor of Cindy, we have a “Most Inspirational Player,” award. My heart sank. “Here it comes,” I thought. “And the Most Inspirational Player Award goes to…..Ethan Zucker!” Loud applause followed. And there, among the hundreds of people gathered, our ten-year-old son walked up from his bleacher seat to receive his plaque and smiled for the camera. Meanwhile, I couldn’t help but feel annoyed. “Of course the two-fingered kid has to win this,” I thought to myself. I had just written the blog post last week on Olympian Joanna Roswell, who is bald due to alopecia, and reflected on my hope that one day, people would simply appreciate us for our talents, rather than our difference.
And so, when Ethan approached me and said, “Hey, Mom. I won an award, did you see?” The phrase, “grin and bear it,” rang in my head. I did what any mother would do, I gave Ethan a wide grin, and a huge hug. However, after we went home, out of earshot to Ethan, I called John to vent. “I know they meant well of course, but why can’t people for once not have to give praise to the overtly different kid for something like this? If he didn’t have one finger on each hand, I am positive he wouldn’t have won this. On the court he is just like everyone else!”
That evening I was reminded why I am so fortunate to have my husband by my side, and Ethan is so incredibly lucky to have the Dad that he does. John came home that night and told me I was way overreacting and being a dope over this. That, unlike Joanna Roswell, who could have cycled the same with or without hair and earn her gold medal, that this was different. “Meg, you know handling a basketball is not something easy for a kid with only one finger. It’s very hard to control the ball and dribble with one hand like he does. And he’s a more consistent shooter than I ever was. Whether you like it or not, the fact that Ethan plays the sport, loves it, and is even relatively good at it, is inspirational. He is NOT just like everyone else. You need to swallow that pill and move past it.”
I went to bed that night but did not go to sleep for a long time. My husband’s words rang in my ears. I needed to swallow my pride and somehow allow others to treat us differently, and accept it favorably. In fact, there was clearly an upside. Ethan is recognized and feels accomplished at something many would not otherwise expect him to even try. And, more importantly, his winning the award might just push some kids harder, beyond their own assumed limitations. The short kid might just try to jump all the higher. The slower kid might just try to run faster. The star athlete might even be more open to passing the ball to a kid seemingly not perfect.
And so, I am now sold on that clichéd expression. It’s not whether you win or lose. It’s not even whether you win an award or not. It really is how you play the game. And hopefully others will notice.
“I am not my hair, I am not this skin, I am not your expectations, I am the soul that lives within.” India Arie
“That’s my older brother John. He lives in D.C.” My friend Beth and I were in New Jersey, at Mat’s family home. I glanced at John’s photo, reflected that I thought he was attractive, but moved on. My mind was not on the photo, but instead, consumed by the experience minutes before. When we had decided to swing by Mat’s house, we had entered from the garage and passed through the “mud room,” with its coats and boots before reaching the kitchen.
The instant I walked through the mud room, I felt as if I was suffocating. Surrounding me on every inch of the walls were traced and decorated handprints of family and friends dating back to 1974. Not several, not many, but probably hundreds.
It was clear that this Hall of Hands had been a work in progress for many years. Mat had observed my fascination and commented, “Everyone that visits leaves their handprint on the wall. Do you want to?” He had made no assumptions about my hands, but still I replied, “No, thanks.”
In fact, I was light years from flaunting, and certainly not ready to leave my mark by tracing my one finger and small hand on the wall of someone’s family home to gawk at after I left. The mud room was the smallest room in the house, but it represented an important history to this family to which I could never relate. I was ready to leave that house. Despite my affection for Mat, I was readily judging his family based on the appearance of a single room! Regardless, I felt sure I didn’t belong there.
I have been writing a lot about my admiration for Oscar Pistorious, the “Blade Runner,” for all he accomplished even before entering his first Olympic race. This week, another Olympic athlete caught my attention. Joanna Rowsell, 23, who won a gold medal in cycling, along with her British teammates. There is no doubt I am in awe of anyone who is able to make an Olympic team, never mind win a gold medal. While Rowsell stood smiling with her team for an official photo, she physically stood out.
Rowsell has alopecia areata, in which her hair follicles attack themselves and cause baldness. I watched Rowsell stand before the world, just being herself, not disguising her difference, and I felt a little bit of understanding of what it must have taken her to get to that point. A few years ago, for a time, our friend’s daughter was diagnosed with alopecia as well, and I saw through her young eyes the significant emotional challenges the condition brought to a young teenage girl, as well as the considerable strength she developed as a result of it. It wasn’t easy, but she learned to stand proudly and accept how she appeared to others. She also learned to move beyond it. Rowsell also moved beyond it. She became an Olympic athlete. She doesn’t think of herself as alopecia-afflicted Olympic athlete. Rowsell looks in the mirror and sees the Olympian she is.
The thing I noticed about the Rowsell story was not so much the coverage of her performance, but the other ways several journalists wrote about her. Even in a complimentary article, she was described as “suffering from alopecia.” Roswell was lauded for her “bravery”, presumably for being a girl standing bald before the world.
It got me thinking. Why is it that when people that are not overtly different describe others who are, it is often assumed that we are “suffering” from our condition, our difference? If we don’t appear to be suffering in public, then are we putting on a “brave” face? To me, this feels counter-intuitive. From her own words, I think Rowsell might agree: “On one level it was a case of ‘this is just me.’ I get off my bike, take my helmet off and that’s who I am. I did know it would be making a statement—I just didn’t anticipate the size of the reaction.”
I don’t think Rowsell suffers from her condition. Rather, I think she lives with it and doesn’t think about it constantly. If Rowsell is valiant, to me it is not from taking off her helmet, but because she had the guts to follow her dream to the Olympics, and endure all the hard work that entails. Hair or no hair.
My dream? That people (including journalists) learn to skip over the superficial or irrelevant differences we all have and focus on what does matter. Can we imagine an article about a female Olympian with alopecia that doesn’t need to mention the reason for her baldness, but focuses on her athleticism? That’s not say that her back story or that of Oscar Pistorius are not interesting or meaningful, but only that at some point it would be cool for our society to move beyond its fascination with “oddities” and just start taking people for who they are. After all, it’s not about who has the most hair, but about who is the fastest on the track.
I wound up meeting Mat’s brother, from that photo on the wall, four years later. After John and I were dating about a year, I confided to his parents (with a smile) that I thought of the mud room as “the intimidating room.” One day soon after we were engaged we visited their house and Mat joined us. By this time, I already felt like a part of the Zucker family, and I knew I there was something that I needed to do. Grabbing a green marker, I whispered in John’s ear. “Sure, go ahead, he replied.” With his permission, I drew my name with a heart and the date on the mud room wall, inside the tracing of John’s hand from 1974. When Mat saw what I had done, he stood there completely shocked. “Oh my gosh! You just desecrated Johnny’s hand. Now you HAVE to marry him!”
Clearly, the room had its value. I had misjudged it and the family.
The anticipation had been as excruciating as the reality. My Grandfather, Ozzie, sat on his bed in New York City at the Hebrew Orphan Asylum and wept. That morning, at the age of eighteen, he had been accepted and won a tuition scholarship to The Julliard School, the pre-eminent performing arts conservatory. It was like a dream come true, given his goal was to become a professional trombonist and join the New York Philharmonic or its equivalent. Ozzie had take up the trombone years before at the orphanage when a wealthy benefactor donated instruments and an auditorium to the “Home,” as it was often referred. From the moment Ozzie picked up the shiny brass horn and felt the almost tickling sensation as his lips buzzed into the mouthpiece, he felt sheer joy and utter peace. It was as if the only thing he had was his music. He would recall that his orchestra at the Home was so good that it attracted visiting professional musicians as guest conductors, including the famous John Philip Sousa. But when Ozzie was not playing, the reality of his life stung as if a bee was a lifelong guest attached.
At the age of 4 ½, Ozzie’s mother had died from the great influenza of 1918- 1919. His suffering over the loss of his mother was further exacerbated by the guilt he felt from having been the first in the family to come down with the flu. He survived, she did not. That pandemic coincided with the First World War, but actually killed more people globally than the war itself. With little money and three children, Ozzie’s father brought them to the Home, where he began to work as a tailor.
Ozzie had taken his Julliard acceptance letter to his father, but was crushed by his father’s response. His father did not view music as a sustainable profession and, regardless, he could not afford to support his son’s living expenses while at school. The administrators at the Home similarly refused to help. Ozzie remained confined to the Home and to the narrow boundaries of his father’s expectations.
Although he had already met his wife Ruth through friends at the Home, and one day she would carry their only child (my mother), Ozzie was devastated by the loss. His dream faded as his one big chance slipped away.
I knew I had no choice, on multiple levels. My decision to play the trombone, like my brother Peter before me, was, at least in part, intended to honor our grandfather. The year Ozzie learned of my new commitment, he came to Urbana with my grandmother and gave me his Holton trombone; his treasure from years long past.
In truth, while trombone seemed cool to me, the instrument that I cherished the most was the French horn. However, I never contemplated even trying to play it, given the horn’s multiple valves and my finger challenges. Not that the trombone was readily made for the likes of me either. The slide was too long for my shortened forearms so I needed an extra steel attachment. It provided me the extension I needed where my arm length failed me.
When Peter played, the tone from his instrument was melodic. When I played, as I have written previously, I sounded like a sick cow. Yet seeing my grandfather’s pride in both Peter and me encouraged me to stick with it. Looking back, my musician’s heart was always with French horn and my choice to abandon it without even trying it seems like nothing more than a failure of imagination and courage.
This past summer something occurred to me. Rather than my blog simply being a mechanism for me to educate others and perhaps in my wildest dreams inspire some, there was something more I could do with my site. To my delight, I have discovered that my being so direct and candid about my own life experience, both living with and parenting children with a genetic condition, has prompted countless others to share their stories. I decided to branch out beyond comments to my site or notes on its Facebook page. And so, the “Guest Flaunt” was born.
Recently, a talented musician named Tony Memmel wrote a special Flaunt for my site. Tony was born missing his left forearm and hand. I knew he had just performed at the Superdome the weekend before, so I was thrilled that he had taken the time to write. What I expected was an interesting post, but what I actually received was so much more. In the beginning Tony wrote, “Learning to play the guitar was a serious challenge for me and required a lot of time and patience. It ended up taking me eight years to come up with my current method of playing which is to re-create a cast out of duct tape that secures a guitar pick to the end of my arm each time I play….” I was stunned when I read this, and realized something instantly. Tony, with his “never say never” attitude figured out how to play the instrument he loved the most. His drive and determination reminded me of when I spent hours teaching myself how to tie my shoes, but that accomplishment took me the better part of a day. It did not escape me that learning to functionally play the guitar, given his difference, took Tony many years. Yet he persevered.
Inevitably, everyone’s life is filled with obstacles; some are imposed from the outside, like my grandfather not being able to attend Julliard, but some are self-imposed. When I chose the trombone, I believed there was no other physical option. I accepted the common perception that I was just limited. But I was mistaken. Could the French horn, or even another instrument been a possibility for me to play? Now I think so.
Just last year Ethan came home and announced that he was going to play the trombone. At that time I presumed that his choice was as inevitable for him as it was for me. And of course, I quickly shared the story of Julliard and my grandfather to increase his pride level. One day I will even give Ethan the antique Holton, which awaits him in my office closet at home. Or perhaps, with encouragement, he will try something new; something he assumes is out of reach. Even if it takes him years to learn, even if he fails, it is certainly worth a shot.
I glanced over at Ethan. Our two fingers joined together, tightly- his left, my right. John stood next to us, and like his son, was fixated on an old superhero movie playing on the television perched in the top corner of the wall. It was 11pm, too late for our son to be awake. But this was not a typical night. As Ethan lay next to me on the hospital bed waiting for the Emergency Room doctor to arrive, I reflected on the past 16 hours. The day had started out early. We were “up with the chickens,” as my Dad used to say. John, Charlie, Savanna and I practically stumbled out of bed, and rushed into our mini-van. “Finally, we get to pick up Ethan!” Charlie announced as we rolled out of our driveway to begin the journey to retrieve our son from sleep-away camp.
After almost three hours in the car, we arrived, and I quickly surveyed the cabins and playing fields, looking for our son. “Mom! Mom!” I heard Ethan shouting out to us, and then saw him walking across a grassy field, waving with his two fingers in the air. The smile on Ethan’s face was worth a thousand words. As we loaded up his things in our car, he rushed back to say good-bye to his fellow campers and counselors. To our delight, they were clearly as enamored with our son as he was with all of them. In that moment I knew I wouldn’t even have to ask Ethan later whether, in hindsight, he felt comfortable with so many new kids, despite his blatant physical difference. We loaded his belongings into the car and I stopped to gaze at our ten-year-old son, wearing a completely stained shirt and a grimy face. To me, Ethan never looked more beautiful.
Recently, I received a flattering invitation to be profiled by Today.com (http://today.msnbc.msn.com/id/48421495/ns/today-style/). The purpose of the piece was for me to provide my insight into, “What Beauty Means to Me.” When I was interviewed several days later for the piece, I was directly asked, “What do you notice about beauty in others?” Well, as a self-proclaimed lover of fashion, I certainly could have taken the easy route and discussed material items that catch my attention. But there was more, and I suspected they knew that I would take this question to a deeper level. My answer was rooted in a recent exchange with a stranger. It all started with a comment to a blog I received the morning we were headed up to pick up Ethan.
I’m living in India. I’ve been following your blog ‘don’t hide it, flaunt it’ since the dawn of 2012. Your writings are highly motivational and inspiring.
I’m also a different person in the sense that I have no children (which is considered not only as a disability but also a sin in our society.) After a lot of waiting and disappointments we have decided to adopt (which is another sin according to the standards of our society. But I have got a wonderful husband who has been instrumental in taking the decision. My husband and myself have to prepare ourselves for a great ordeal awaiting us when we get the child. ) It was in this context that I came across your blog (rather accidentally. I’m interested health topics and usually spend a lot of time in medical sites. When I was searching in google for ectrodactyly, I found your photos. Your children are really so cute that I forgot my search and entered your blog. Ethan and Charlie are soooooooooooo loveable, cute and smart. You are really fortunate to be blessed with such lovely children.)
After that I started reading your posts now and then. I was extremely surprised that you have an adopted child also–Savanna. Then I became more personally involved in your writings. Your posts surprised me at first because I was of the opinion that in your country, people are decent enough to be indifferent about differences. But , it is a blessing in a way because we would not have got “‘don’t hide it, flaunt it” if you had not faced those stares or questions.
After reading your blog posts there is a lot of change in me. I have begun to accept the fact that I haven’t got a child. Though I have received a lot of spiritual education from my childhood I could not accept the fact till recently. Now I can face any question with courage. I can say ‘No, I Don’t have a child’ with the least pain. I think this is very important to adjust myself to the problems which are awaiting us in the next stage of the issue, that is bringing up an adopted child. I’m sharing your ideas with my husband and he is also inspired to know about your blog. Now we hope we can face any silly question about that new addition into our family, apart from making him/ her accepting the fact, (as you have written in your post ‘It is all in the genes ‘) giving him/ her the most comfortable atmosphere and the best possible parentage by God’s grace.
I think I have found a sisterly counselor in you for any doubts or questions regarding acceptance of difference. Pardon me for being lengthy (since it is the first letter ) and also for my English. (I’m not sure if it is up to your standards since I have studied it as a second language only.)
With love, Vidya
Reading Vidya’s note, I was both humbled and overjoyed. Humbled by her gracious words about my blog and my family, but overjoyed that my “Don’t Hide It Flaunt It” site had become a tool for people, no matter the challenge. As much as I love all of you finger and limb-challenged people out there, this message from Vidya felt like pure, “mission accomplished” to me. It radiated what I believe to be beauty in its purest form: When a person is inspired to be courageous, despite the often stinging judgment from others, even from those that we care about and care for us. Vidya has been able to embrace who she is, and accept herself, despite her difference. While I have never met her, and she lives across the globe from me, I am completely overcome by her beauty.
“Excuse me,” the attending physician called for me and John to come outside the hospital room. At that point, we had been waiting at the hospital for over an hour. After we had gotten home from camp later that day, the kids went to ride their bikes. A sharp, metal object sticking out of a bush had gashed into Ethan as he rode past it, right above the ankle. “The cut on your son’s leg –it is quite deep. We want it to heal so his leg can once again look perfect. I don’t really have the skill for this. I hope you don’t mind, but I called in an excellent plastic surgeon to handle this for you.” The irony in her comment did not escape me, given that with his socks off, Ethan’s foot had never been described to us as perfect. When the plastic surgeon arrived, we were thankful to find he was not only skilled, but also charming. “Let’s make sure to do this right, since crutches will bring too much attention!” he said with a wink.
During the hour-long procedure, we chatted with the surgeon about everything, including the subject matter of my site. During a particularly long stretch, I even read Vidya’s letter to him (not kidding). He was genuninely interested and then confided to us that when he got this call, he was told by the doctor it was especially important that the family had a good cosmetic result. We all chuckled at the thought that someone would think a scar would be a problem for us. But it reminded us that beauty obviously means different things to different people.
“On your mark, get set, GO!” With that shout from a man I did not know nor could see, we all began to run as fast as we could around the Urbana High School track. At the time I was only seven years old, so to me, it was the first and only track I knew. I was racing with my brother, Peter, and a bunch of other kids. It was a beautiful Spring day in Illinois, and our parents were close by with our younger brother, Teddy. From the bleachers I could hear them cheering us both on. “Go, Meggie, Go Peter!” Wearing my only option (brown laced shoes), I began to run with all my might. Immediately, Peter, wearing his new white sneakers, took the lead. In fact, Peter ran so fast that he did not notice that his younger sister, within seconds of take-off, had tripped with a hard fall to the ground.
Never willing to give up on anything, I hesitated for only a second, and then quickly picked myself up and chased after my brother and the other kids. We were to run the entire quarter-mile length of the track. As I made my way around the turns, I noticed the crowd seemed to be supporting me with particular encouragement. When I finally completed my lap, I had come in dead last, but I really wasn’t disappointed. It was the first time I had ever completed a run that long, and I felt particularly proud of my achievement. I wore a huge grin, and ran to find Peter.
Only 15 months older than me and with Teddy just barely older than a toddler, Peter was the most important kid in my life at the time. On a daily basis, we would both love each other and fight with one another, as might be expected. “Are you ok?” I heard Peter’s voice and didn’t know what he was talking about until I looked down. My legs were scraped up, with blood trickling down both. There was still gravel stuck to my knees. I stared at my little shoes, wishing my oddly-shaped feet fit into regular sneakers like the other kids. In the ‘70’s, modern technology had not yet reached the running shoe industry, certainly not for someone like me. Then, my parents arrived and were joined with a crowd of strangers all asking if I was okay? My moment of glory from the race had vanished. I instantly reacted to their concern and began to cry uncontrollably.
The first time I watched the Blade Runner was when it premiered in June 1982. The film was set about 40 years into the future when mankind had made genetically engineered, human-like robots called Replicants. They were only programmed to live a certain number of years. The protagonist, a cop named Deckard, was supposed to “retire” four of these Replicants. The thing is, the Replicants were self-aware and didn’t want to die. Some fought back. I left the movie confused, too young to appreciate its meaning.
I hadn’t thought about Blade Runner again until I heard that reference in relation to Oscar Pistorius this past year. Pistorius is the well-known athlete who, due to congenital absence of the fibula, had his lower legs surgically removed at 11 months. Pistorius has been donned the “Blade Runner” because he runs on artificial “J-shaped” lobes that look like long blades. Recently, I heard that Pistorius qualified to join the South African Olympic team to run the 400 meter dash as well as grip a baton in the 4X4 400 meter relay. Upon that news, I searched for articles about the story. I was expecting near universal applause about Pistorius’ inclusion in the races. But, instead I read his participation has created controversy. Apparently, dating back years, the International Association of Athletics (IAAF) put a verbal memo out to South Africa to strongly reconsider sending Pistorius to international competition. Although everyone admires Pistorius, many believe he belongs in only the Paralympics; that his technology-enhanced legs have an edge over other runners. However, the South African Olympic Committee chief has continued to back Pistorius, stating bluntly, “We are not taking passengers to London.”
Without trying to wade too deeply into this debate, I thought I would offer simply my own view. The groundbreaking technology that gave Pistorius “legs” to learn to walk as a toddler, has now provided him the opportunity to participate in the Olympics. It’s a dream that few people born with physical differences would ever even dare to entertain. I have recently noted commercials celebrating injured or maimed war veterans now using the same technology, but Pistorius is unique in his Olympic aspirations. To me, the question of whether or not he has an unfair advantage is ironic and beside the point. It’s ironic because for most of his life, it would have been hard to find anyone who thought he lived with any unfair advantages. But it is beside the point because of the inspirational downstream impact from Pistorius’s very participation in the Games that cannot be mimicked. He stands for the principle of inclusion. He defies expectations by competing not in the Paralympics, but against “normal” athletes, and in doing so, forces us to reconsider the boundaries and definition of normal.
After seeing Blade Runner more recently, now through an adult lense, I get it. While still dark, it made me think about how we use technology to give us what we otherwise can’t have. In the movie, Replicants did everything from daily chores to providing sex (not that they should ever be confused). At some point, though, technology temps us to go too far, to reach too high and change too much. Maybe that’s what motivates Oscar Pistorius’ critics. But Pistorius is a very different blade runner. His blades give him an ability he otherwise would never have. In this case, though, they aren’t science fiction jet packs, they’re just legs made for running.
Pistorius reminds me of the old Army slogan: “Be All You Can Be.” I thank him for not only living up to that idea, but for demonstrating how it can work for all of us, and even produce greatness for those not born with seemingly perfect bodies.
Godspeed in London, Blade Runner.
With Ethan still away at sleep-away camp, I glanced over at my other two kids. Savanna was with John across the pool. Repeatedly, she would jump from the edge into her daddy’s arms, and tirelessly swim back for another round. Meanwhile, Charlie was off in the distance with a friend happily vaulting off the diving board. As for me, I hung out on a chair near the side of the pool watching them all.
As pleasant as the above sounds, it was one of “those” days, and I was in no mood to flaunt. Perhaps I was simply missing Ethan, perhaps still tired from a friend’s dinner party from the prior evening, or perhaps for no specific reason, which is often the case.
And then, when it was almost time to go, I noticed a girl about the age of eight or nine pointing at me and whispering to her friend rather loudly. She then began to fold down her other fingers so that just one was sticking up on each hand, in order to demonstrate my physical appearance to her friend. It was clear she hadn’t noticed Charlie, who was still far from immediate sight. All of a sudden, I simply could not take her pattern of pointing, whispering, pointing etc… “Excuse me!” I said to her as she looked up. I was as surprised as she was by my outburst, but I rolled with it. “Where is your mom? I would like to speak with her.” Apparently nervous as if I was some type of two-fingered psychopath, she got out of the pool to either find her mom or, more likely, run away from me as far as her legs could take her. As she got up, I thought, “Oh crap, now what should I do?”
This poor girl clearly was just being curious and wanting to discuss what she had seen with her friend. However, she caught me in a moment of self consciousness, and on a bad day. There are just some days when the strength to be proud of my difference eludes me and I retreat back to that vulnerable little girl who would hide her hands when other kids stared. In that moment (of sanity), I decided that if the girl brought her mother to me, I would simply introduce myself with a smile and tell her that I noticed her daughter was focused on my hands, and perhaps she might be interested in reading last October’s issue of Storyworks (Scholastic) Magazine’s, “The Awesome Powers of Ethan Z.”
“Meg, let’s go!” John was already in the process of rounding up the kids, covering them with our colorful towels. At that moment, I was no longer embarrassed of my hands and feet, but simply of my behavior. She did not return, at least not before I left. I was so embarrassed I couldn’t even bring myself to share the experience with John. That night as I washed my face and brushed my teeth before bed, I reflected on the day. For all of my “Don’t Hide It Flaunt It” efforts, there is the still the reality that this philosophy sounds great, but it is hard, even still for me. I took a mental note to blog about this so anyone following knows that as far as I have come, I still experience these moments. I also thought to make sure that my kids grow up knowing that we all struggle with our own reality, even their mom.
About a month ago, a friend of mine passed me a CNN article written by LZ Granderson. The article was called, “Kid, you are not special,” and the premise involves how parents do their children a disservice by constantly sugarcoating their shortcomings to protect their feelings. The article resonated with me on various levels, including the fact that it began with the author recalling attending his son’s middle school band performance and that, in his words, at times it sounded as if half the band was playing one song and the other half was playing something totally different. After the performance, his son asked, “How was it?” “It was pretty bad,” Mr. Granderson replied. The boy, clearly accustomed to his father’s candor, agreed and smiled.
To me, LZ Granderson made his strongest point in the middle of his well-written article: “There is a middle ground where, ‘how things are’ and ‘how things can be’ meets. It is at this middle point where growth happens. But if parents, teachers and other adults in a child’s life never acknowledge, ‘how things are,’ no matter how good the intention may be then they are denying that child an opportunity to mature, to develop a strong sense of self-confidence that can only be earned by recognizing shortcomings and dealing with disappointments and failures.”
I fully agree with Granderson’s take on this, yet I admittedly haven’t always complied. For one, I am certainly guilty of praising one of my kid’s band’s performances more enthusiastically than was deserved. But to me, that feels innocuous. From my vantage, I would like to take the writer’s concept to the next level. As much as I agree that it is important to ensure your kids “face the music” of their own lives, I don’t believe the conversation should end there. Rather, why not also add a new category, ‘How things were,’ and offer your children a more honest window into your own imperfect world and experiences?
The same evening of the pool incident, we went out for dinner, and Charlie sat next to me while we were in the restaurant. “Mom, when you were a kid, what did you do when other children asked to see your hands up close? Did it bother you? Did you let them? I don’t want to let them.” In this moment, I thought about Granderson’s article. If I took the, ‘How things can be’ approach, then I should simply tell Charlie how beautiful he is, and that the kids find his hands fascinating, even neat. While that may be true for some kids, I was certain that was not the case in every instance and it was my duty to my son to shine the light on that reality. So instead, I took the unfiltered, ‘How things were.’ “Charlie, when I was a kid, other girls or boys would ask to see my hands too.” He listened intently. “Sometimes I think they were simply curious, and sometimes they thought they were even okay with them, but other times they were afraid, and even said they looked weird.” I watched his face fall, but I continued. “At first I was sad and hated that they were so focused. I even tried to hide my hands from them.” I paused as he sipped his chocolate milk. “The reality was, I didn’t know how to handle myself perfectly. But I noticed something. When I would show them my hands if they asked, the kid would move on to something else and stopped caring. If I didn’t, then they would continue to want the chance to see them the next time we were together.” Charlie digested both his meal and our conversation. “Ok, but I still don’t like when they ask, Mom.” I thought about his reaction and offered the best answer I could come up with in the moment. “Honey, you don’t have to like it. You simply have to accept that life isn’t fair, and that if you only expect people to behave the way you want them to, you will be constantly disappointed. Also, not everyone is going to like you, or like the way you look.”
And then, I looked at my son, and reflected back to the final nugget of LZ Granderson’s wisdom, “Charlie, everyone is special to someone, but no one is special to all. What matters is that you are special to us.”
Top three dumb things I have done in my lifetime:
- Walking into a glass door and shattering it with
my face (accident)
- Putting my car in reverse on the highway soon
after getting my license (accident)
- Wasting my money at a nail salon (purposeful)
There was a huge variety of color options. Should I make a statement today and go for something red, or perhaps be subtle with a pale pink? But, the decision was not that simple…. There must have been 50 different shades of red and pink alone! While waiting my turn at the New York nail salon on 50th and Broadway after work, I looked down at my engagement ring and reflected on the past.
Whether I would even wear a ring or not had been a subject of anxiety. Years prior, my college boyfriend had asked me if I planned to wear a ring when I got married. I was perplexed by his question. While reasonable, it simply had never crossed my mind. The truth was, I was in such great fear of never finding someone willing to marry me, a physically imperfect girl, that whether I would wear a diamond on my hand was the least of my concerns.
But that was history. Given John’s unconditional love for me, and despite the fact he had never seen me wear any ring on my finger, it never even occurred to him that he should ask me whether I would want a ring. Rather, when I knew we were close to getting engaged, I brought it up. “Are you sure it makes sense for me to wear?” My question fell on deaf ears. “Why on earth would you not want to show off something beautiful on your hand?”
So, when John popped the question in Central Park that summer with a sparkling round diamond encased in four prongs with an accompanying platinum band, I was quite pleased that this life hurdle had been successfully jumped. And so, wearing the engagement ring represented yet another step in the direction of my journey toward self-acceptance….yet, I still had a long way to go.
I felt that I needed somehow to improve the ring’s appearance on my hand. To me, if my nails looked beautifully groomed, somehow people would not focus on the shape of my hands and the absence of fingers. During my first visit to the salon, believing longer nails might even look better, I requested special tips to be glued on. To be clear, the tips, once colored, were pretty enough, but the practicality of wearing them made no sense. Due to their length, they actually impaired my ability to do things like button my clothes and zip my pants.
When I got home that night, I showed John my upgraded nails and told him that the most awkward part of the experience was the clumsy hot towel massage of my hands, and the funniest part was the confusion over how much to charge me! John was amused and (wisely) kept his mouth otherwise shut.
My nail enhancement efforts lasted until I gave birth to Ethan. The practicality of changing the diapers of our newborn easily left me with no choice but to retreat back to a life with non-fabulous nails. But there was a clear upside. Beyond being free to handle the physical activities of raising our son, I could now (once again) button my own buttons and zipper up my pants with ease. It finally dawned upon me that this effort to make my hands look more attractive simply was silly and a waste of money (okay, not much money, they hardly charged me given the circumstances).
As time has passed, other than declining invitations from close friends to get our nails done (spending so much time with me, they simply forget about my hands looking different), the only reason I walked into a nail salon was to get my eyebrows waxed. Now that made sense! But then, my ten-fingered daughter arrived and like most little girls, has found showing her friends her painted nails the equivalent of my showing off a great handbag. When Savanna turned five last September, I promised to take her to the local nail salon before her birthday party. Not thinking through her request, she added, “Mommy, you need to get yours done, too!” I hesitated, but then thought, “What the heck?” I proceeded to join her and even had tips added to my nails with a glorious dark shade of pink. As I began to pay, I struggled with my new additional nail length, and quickly remembered why this was such a ridiculous idea. Later that night, this time after almost thirteen years of marriage, John took one look at my pink nails and laughed. “That looks pretty dumb.” Indeed it did.
These days when I take Savanna to get her nails polished on special occasions, I sit back and leave the polish to her. Like her mommy before her, she typically chooses an awesome shade of pink. As for me, I’d rather spend the time waiting for her writing.
As I sipped my Dr. Brown’s Cel-Ray soda, I looked around. The place looked so familiar, yet I knew I had never been. When we had entered, my law school friend Todd, grabbed a ticket at the door to mark our place in line. Meanwhile, I both gazed at, and inhaled in, my surroundings. The deli looked quite old, like it had been around for at least a hundred years. Yet, the atmosphere was far from dead. It was as if the next to the words ‘hustle and bustle’ in the dictionary were pictures of this restaurant.
Todd ordered two pastrami sandwiches, letting me know it was a “must have.” As I bit into the most awesome sandwich that was clearly too large for me to consume in just one meal, I looked over, “Where are we, anyway?” “C’mon. You don’t know?” At that moment, despite the fact that both my parents were raised in New York City, I felt like a little Midwestern school girl. “No, should I?” “We are at Katz’ Delicatessen! Didn’t you see the movie, “When Harry Met Sally?” I smiled, and instantly tried to find the spot where Sally so famously broke the news (following up with a demonstration) to Harry that some women fake it. I couldn’t find the location until I realized we appeared to be seated at the very spot.
Recently, I had one of “those” weeks. I discovered that from sitting awkwardly on the train for hours while balancing my laptop on my legs, I provoked a bout of sciatica. And then, within days, the tooth I had recently had refilled began to ache terribly. A rash broke out on my bottom and legs, which may have been related to the sciatica or the result of a brush with my husband’s poison ivy-infected clothes from yard work. And then, I got my period. The entire experience left me feeling intensely uncomfortable on practically every physical level, and feeling sorry for myself. When people would ask, “Meg, how do you feel?” I would soak in the concern and let them know I was miserable. John says when I am not feeling well I am the worst patient. He’s right—I am not good at faking it.
And then, I opened the paper to read that Nora Ephron had died. As with many, I have been a huge fan. Not simply because of her amazing talents as a writer, essayist, humorist, wonderful wife, and mother to two boys. No, even when diagnosed with a fatal illness, Ms. Ephron also had the keen ability to always laugh at herself. Last October, channeling Ellen DeGeneres, I wrote a post called, “You Never Know What Funny Can Do.” There I stated, “The truth of that simple sentence struck me deeply. The ability to laugh at yourself is the key to helping others feel comfortable with you, no matter your difference.” As the week progressed, the eulogies for Ms. Ephron poured in and often had a common theme: Nora Ephron will be remembered because she made as much fun of herself as anyone else.
With respect to my two fingers and two toes, there is no question I have continued to poke fun at myself where possible. Just this week I mentioned on a conference call that I could get a memo out asap since I was the fastest two fingered typist this side of the Appalachians. Awkward silence often follows, but I don’t care. I readily laugh at myself when it comes to my condition. However, it occurs to me that I need to carry that humor to other life experiences that feel challenging. And so, in honor of Nora Ephron, I’ll update my prior theme: “The ability to laugh at yourself is the key to helping others feel comfortable with you, no matter your experience!”
What also caught my eye was that in Ms. Ephron’s final book, “I Remember Nothing: And Other Reflections,” she had a “What I Won’t Miss/What I Will Miss” list about things she would or would not miss on Earth. Here’s my variation on the theme:
Hiding my Difference: What I Will Miss
Flaunting My Difference: What I Will Miss
- Not caring if people stare
- Writing…with honesty and candor
- Being a role model for my kids
- All the unexpected and probably undeserved discounts and then being able to pay the savings forward
- Having people I regard as role models think of me as a role model
- Having the ability to laugh at myself…and mean it
- Having the ability to laugh at myself…and watch people visibly relax about my difference
- Trying new things without worrying how others are judging me
- Teaching people the message, “What You Think of Me is None of My Business!”
- Inspiring others to flaunt it, simply by being myself
“I do it myselfie!” I was barely four years old, but my strong desire to be independent was as much a part of me, as my ectrodactyly, the condition that left me with a single digit on each hand and on each foot. I had been on the playground at “Kiddie Country” in Urbana, Illinois. My outburst was in response to my friend Jamie who had tried to help me on the monkey bars. As for any young child, life was so simple back then. The big news of the week was that Jamie had just stepped in fresh dog poop on the playground, and my other friend Maia had stepped on a thumbtack the prior day.
At Kiddie Country, all of us were buzzing with excitement; we were putting on a Spring play for our parents. I was to play a donkey. It was to be my first public performance, and I was playing the role of an ass. No matter, I was tickled at the thought of being on stage, and my friend Maia was assigned the same animal. With no budget for costumes, I had already planned my outfit: my favorite red dress, and grey paper machete long ears I had made at school the prior week with a matching tail. My role was uncomplicated: I was to move around on my hands and knees across the stage and bray. At that age, my greatest concern was not whether anyone would notice and subsequently stare at my fingers and shortened forearms. Rather, as I made my way across the floor, I worried my underwear would show.
As we gathered backstage watching our families file in, my teacher took (only me) aside. “Meggie, you may not be able to put pressure on your hands for the extended period of the play. Don’t worry, you can always stand up if you need to.” Her comments left me confused. Why would she assume I couldn’t fulfill the physical obligations of my role like Maia? I looked down at my fingers, and for the first time realized that despite my desire to be fiercely independent, the way I regarded my capabilities and what the rest of the world perceived did not match.
It was only 3:00 PM but it had already been a long day at work, and I was looking forward to that favorite second cup of coffee. But before I could dash to the office pantry, my phone rang. It was the nurse at Ethan and Charlie’s grade school. “Hi Meg, don’t worry, everything is fine.” This was the line teachers and other faculty members always provided so when an unexpected call came, you could breathe a sigh of relief. Savanna was not yet in grammar school, so I breathed my sigh, and wondered which of my two boys we would be discussing. “Hi. What’s up?” The nurse responded gently, “It’s Charlie. He had an incident on the playground that I wanted you to know about.” My stomach tensed, recalling the memory of Ethan bullied on the playground at the same age in 1st grade at the same school. Bracing myself, I asked, “What happened?” “Apparently, one of Charlie’s close friends told him he couldn’t do the monkey bars because of his hands and he got very upset. After I gave him a drink, Charlie told me he was particularly sad because this happened to be his ‘best friend’ and he couldn’t believe even his best friend would tell him he couldn’t do things.” She continued, “Even after they returned to class, Charlie continued to cry hysterically, so his teacher brought him to me to calm down.” She waited for me to respond, not knowing the direction the conversation would take. But then the nurse quickly added, “Oh, one more thing. Charlie’s friend felt so badly that they both ended up crying. Just so you know, we have already contacted the boy’s mother too.” “Thank you so much for letting me know,” I replied warmly, making a mental note to make sure to call the other mother later. “At the end of the day, Charlie is going to learn that just because someone has an opinion about you, it doesn’t necessarily make it true and more importantly, it shouldn’t matter.” My mind drifted to my favorite saying, “What you think of me is none of my business” from my dear friend Judy who had passed a couple of years ago. We got off the phone, and I reflected on the conversation and Charlie’s ironic outburst. Last I checked, unlike his younger sister Savanna, Charlie had not yet tried to swing on the monkey bars, but I knew that wasn’t the point.
Later that evening, in the privacy of Charlie’s room, we discussed the day’s events. “Charlie honey, if someone, even a friend, thinks you can’t do something, either prove them wrong, or show them something you can do really well, so they focus on your other talents.” Charlie had the earned reputation of having the neatest handwriting in the 1st grade. I was already prepared to add to the list if he needed examples to use in the future. Instead of responding with a smile, he instead dove into one heck of a pity-party, crying uncontrollably. We spoke for a long time, until he fell asleep.
As I left to find John, I reflected that we had more work to do with Charlie on the subject. I also realized that while my six-year-old may look like me, he wasn’t me. I had spent much of my childhood trying to prove to everyone else I was capable of anything I put my mind to doing—that was my natural disposition. Charlie tended to be more sensitive, and with all my insights, I still needed the reality check that every child is different, and my own son deserved for me to understand that my own approach to resolving similar challenges might not necessarily work perfectly for him. At least at this age, I could be there to help Charlie explore how best to navigate through these types of experiences in a way suited best for him. Most importantly, I was committed to helping him embrace and ultimately embody Judy’s powerful message. He might not travel my identical road to get there, but the goal needed to be the same.
That evening, I called Charlie’s friend’s mom. As soon as she picked up, she began to apologize profusely, telling me that her son was still extremely upset at the thought of hurting Charlie’s feelings, and asked what she could do to make him feel better. I quickly let her know that Charlie was fine, and this type of experience was simply something he would need to work through since it would not be his last. I could practically hear her relax over the phone. Before we got off, I did offer one nugget. “You asked me if there was anything you could do. If you are willing, perhaps tell your son that the next time he sees someone that looks different, rather than making assumptions about his or her capabilities, simply take a breath and wait and see.” She thanked me for the thoughts, and we got off the phone in good spirits. After all, just because the “just take a breath” message I’ve been trying to convey in my recent writings has been aimed at adults, doesn’t mean it can’t work for kids, too. I think it’s worth a try.
I couldn’t believe my good fortune. The law firm of my choice had hired me (and Anne, the only other law student) to become a summer associate beginning in a few weeks.
The summer job interview process was grueling and actually started the prior autumn. During what was called, “Early Interview Week,” scores of prestigious law firms came to NYU Law to meet us for a potential internship for the following summer break. Wearing what became our interview uniform (a white shirt with either a conservative navy or black suit) to every interview, I met countless potential legal employers. Being quite gregarious, interviewing came quite easily to me. I always had something to talk about. However, it was the post-interview waiting period that made me nervous. In the first few days I had bitten down my two nails until they were raw. As my friends began to receive both call-backs (and rejections), I received only rejection letters. On one particular afternoon, I returned from class and found a welcome message on my answering machine. “Hello, this is Mandy from Lord and so and so. Please call us when you receive this message.” “Oh my gosh! I got a call-back from Lord Bissell!” I shouted to my roommate. Elated, I called back immediately, only to hear, “Hi, thanks for calling. This is Mandy from Lord & Taylor. We wanted you to hear about our special private sale for our favorite customers…” Uggh! But in the end, I received the offer I wanted from a selective entertainment law firm, and anxiously anticipated the experience.
That particular May afternoon I was sitting in the kitchen of my Mercer Street apartment with my friend, Marc, reviewing the offer and a pamphlet provided to students that detailed the diversity breakdown (i.e., by gender, race, disability) of each of the law firms that visited campus. Each firm had provided the statistics to the school so that students working for the summer had an idea of its overall make-up. As I turned the page to my new firm, next to the summer intern slot were two “X’s,” indicating both associates were female. But then my mouth dropped as wide as was physically possible. An additional “X” was placed next to one of the females, marked for the disabled category. I was visibly shaken. “Marc, that X must be for me, but how is that possible?” Tears began to stream down my face uncontrollably. “This means that the only reason they wanted to hire me was to get “credit” for hiring a disabled person. It makes them look good statistically.” I became infuriated. “When they asked if I needed any accommodations during the interview, I told them I didn’t need anything special. I even joked with them that in fact, I was the fastest two-fingered typist on the East Coast!”
Marc turned to me, “What are you going to do?” “Nothing yet, but I am certain I cannot work there if they insist on labeling me disabled.” Sounding awfully like the infamous Seinfeld “Outing” episode before its time, I added, “Not that there is anything wrong with that!” Yet, despite my anger, I held my tongue and began work at the firm. The truth was I didn’t want to blow this opportunity. The summer progressed and, other than the train conductor incident described in my prior blog post (Pay It Forward), nothing relating to my physical condition came up…until my mid-summer review. As I sat with the hiring partner to hear about my performance (“Meg, it’s been a good summer. You are well-liked and hard working….”) I waited for him to finish. And then, it was time. I looked at the partner directly in the eyes. “Thank you. Overall, it has been a good experience, and I have appreciated the opportunity. But, I have one matter I need to raise.” At that moment, I proceeded to advise the partner that I resented the fact that I was labeled as disabled in their pamphlet, and that while I looked different due to my one finger on each hand, that I was not limited functionally, as I have shown throughout the summer. “And so,” I continued. “Should I receive an offer, this label would need to be removed from any similar document associated with the Firm describing me. I insist.” An awkward silence immediately followed the conversation. The partner looked at me with extreme annoyance. “Okay, Meg. Thank you.”
Only Anne received a full-time offer to work at the law Firm at the end of the summer. I can only presume that my aggressive attitude during the review and presumptions about the firm’s pamphlet did not exactly help my odds of getting an offer. In fact, as I reflect on the experience, I am actually quite mortified. Not that standing up for myself was actually a bad thing, but that my self-esteem was at such a low. It mattered so much to me in those days what people thought of me. My anger at the firm and its pamphlet was just another example of my own insecurity.
Those that have read my other posts know how much credit I always give my parents for raising me to be independent and strong. They didn’t pamper me and encouraged me to “Let go, and let live.” In those law school years, though, it seems that even their inspiration had its limits.
It is hard to believe Ethan will be heading off to sleep-away camp next week for the first time. Not surprisingly, Ethan is thrilled, John is fine, Charlie and Savanna are excited that they can go into his room and mess with his stuff for a month, and I am a wreck. While he is an incredibly social and independent boy, the thought of Ethan not being home in his bed every night with us makes me miss him before he has even departed. It reminds me of when we were trying to get pregnant for the first time, and I wanted so much to be a mom that somehow I felt I missed the baby I had not yet ever met.
The camp forms had asked about any unique issues and I had chosen to disclose that Ethan has ectrodactyly. The camp director then called to see if there was anything special Ethan would need for purposes of accommodation. Just as with any of Ethan’s teachers that have asked, I advised that he should be treated like anyone else.
Then, the other night before bed, I asked Ethan whether he was nervous about attending a camp where the majority were strangers. My mind raced back to a birthday party years ago when he rode his first kid-friendly “zip-line” and everyone in the room stared. “No, not really mom. I’m actually really excited.” Treading carefully, I reminded him that kids might probably stare when they first meet him. “Of course, E, hopefully they will simply ask why you were born with one finger on each hand, and then you can respond and move on. Reflecting on my “Blessing in Disguise” post from this past Fall, I reminded him that the fact that he looked different was merely a blessing in disguise. “You won’t have to worry about what people think of you. You will attract only the most wonderful kids; they will be the ones that want to know you.”
I paused and waited for him to digest the information and process it as best a ten-year-old could. Ethan responded, “Mom, this is not a blessing in disguise!” “It’s not?” I replied. I felt disappointment and even anxiety began to run through my body. “Nope, it’s simply a blessing. Why would I care what other people think? You don’t.” And with that, I realized that the only thing that was lacking in my own upbringing was that my parents both had five fingers on each hand, and there was no one like me to show me the ropes.
I looked around hoping to find an open seat. The Metro North train was overcrowded, and I was utterly wiped out. After spending the day outside the city at an outing for the Manhattan law firm where I was an intern, it was time to take the train home to New York City from Westchester. The day had been filled with a lot of eating, drinking, and some of the firm’s partners even played tennis.
Although I had learned to play with my dad and brothers as a child in Urbana, I felt uncomfortable bringing my racquet. As I expected, no one even questioned if I wanted to play, and I suppose they assumed I probably couldn’t, given my physical condition. Instead, I spent the day mingling with other interns, especially Anne, who was happy to hang with me when she wasn’t playing tennis with her boyfriend, Ted. Anne was extremely pretty, with blonde hair, and a beautiful physique. Although I was dating my boyfriend, Randy, at the time, he didn’t come for the firm’s outing. “Meg, you look exhausted. Come sit here near us!” It was Anne. She and Ted were also on their way back to Manhattan and hooked me up with a seat across from them. I told them all of those hours in the sun had gotten to me. I was grateful we were sitting near one another.
“Tickets!” The train conductor’s booming voice startled me. We had been on for less than 15 minutes, but I must have dozed off. As I reached for my wallet, the conductor looked at me, then at my hands. “Half-price, Miss.” Still a bit dazed, I was confused. “How come?” I asked
calmly. “The disabled don’t have to pay full price.” Perhaps it was the heat from the day, maybe the embarrassment in front of Anne and Ted, but mostly, I was stunned at that description of me. I had been raised to believe that although I looked different, I could do most everything anyone with ten fingers could accomplish. The label “disabled” felt like a sharp punch in the stomach with no warning. Tears began to stream from my eyes. “No, I insist! I am not disabled! I have to pay full price!” I practically shouted. The conductor looked at me like I had a screw loose. “Ok, suit yourself.” After he was gone, I continued to cry. I looked up and saw Anne and Ted, and felt a stinging sense of embarrassment. While Anne tried to console me, it didn’t help. After all, we were simply work colleagues, and in that moment I needed a good friend.
After I got home, I called my close friend from college, Lia, and once again cried my eyes out. Here I was, a law student, living independently in New York City, but none of it mattered. Regardless of how much I had accomplished in my life, the way the world saw me and how I saw myself just didn’t match, and I hated it. However, I still had much to learn, and was nowhere near flaunting my difference (notice my hands hidden in the photo with Lia…).
My friend Stacey and I were hustling through Penn Station, trying to make the subway. Because of the rain, everything had been backed-up that morning, and I would be lucky if I made it in to the office anywhere near my typical arrival time. As we approached the turnstile, Stacey swiped her card first and waited for me to come. I could already hear the subway approaching, and knew there would be only moments before it arrived. I swiped my card. “Insufficient Fare” read the turnstile meter. “Oh crap!” I cursed aloud. “Meg, here, borrow my card.” “No thanks Stacey, you go ahead. I think this is the second time in a month this has happened to us together! I need to load my card anyway. Talk to you later.” “Ma’am, go ahead.” I looked up, and there was a gorgeous NYC police officer who had already taken it upon himself to swipe a card so I could enter for free. In that moment, I felt conflicted. “Yet another person taking pity on me,” I thought silently. But the reality was, if I didn’t go through the turnstile, someone else would anyway. As I moved swiftly through to make the train with my friend, I turned back. “Hey, thanks a lot.” “My pleasure,” he said with a sweet and sincere grin. While hanging onto the pole inside the subway car, I turned to my friend Stacey and laughed. “Well, besides making the train, at least this was good for my blog!”
Later that evening, I went home and posted the incident on my “Don’t Hide It Flaunt It” Facebook page. Inviting all comments, I posed the following, “Was this a wonderful experience or, alternatively, one that should leave me feeling inadequate?” Unanimously, the comments were positive toward the officer. “Meg, accept the gesture regardless of the reason.” “Say thanks and be appreciative.” “[There is] nothing wrong with accepting the kindness of a stranger.” There were also a few that advised that perhaps the cop was noticing me and thought I was attractive, rather than my hands. “He did it because you are a beautiful woman and that’s how men work.” That one made me laugh. Then there was my brother-in-law Mat who reminded me of the “Pay it Forward” concept. I learned the notion from the movie by the same name. “Meg, sometimes, one just does nice things for other people to make the world go smoothly. That’s not charity or pity. That’s efficiency and warmth.”
I will already tell you all, that when the cop paid my fare, regardless of his intention, I felt inadequate, even flawed. I can’t help it. Never believing myself to be in need, I never think of myself as deserving any special treatment. And let’s face it, I didn’t see the officer swiping his card for anyone before me or afterward. Also, as much as I would like to think that some cops are out giving free-bees to people simply inspired by their beauty, that is a stretch for me.
However, I now have the ability, fortunately, to move past my initial gut reactions on these occasions. One comment from a woman named Megan actually summed it up for me the most. “Meg, inadequate is the knee-jerk response, but resist. You will never know for certain whether he noticed your hands, your beauty, or your gentle spirit. But it doesn’t matter. He gave you a small gift….” At the end of the day, the easy thing has always been for me to feel instantly hurt inside when someone makes a gesture, regardless of intention, that makes me feel like less of a person. My friend Ayala’s comment was also spot-on. “Meg, don’t look a gift horse in the mouth. Enough said.” I get it. Rather than resent these well-intentioned overtures, appreciate them, embrace them, and most importantly, pay them forward. I hope we all get that, regardless of what we look like.
These days when a NJ transit conductor takes one glance at me and charges me a reduced fair, I gratefully accept….and with the difference in savings, give it to someone in need. But “paying it forward” doesn’t always have to happen as a result of someone’s actions or attitude about difference. One day this week I took the train and due to overcrowding, the conductor never got to my seat to collect. Walking out of the station, I passed someone advocating for the homeless. He was asking for “even a penny.” To his surprise, I dropped the equivalent of my fare, $10, into his clear container. “Enough said,” indeed.
I could feel the warm glow of the sun as it shone on my face and body. Wearing only my red swimsuit, I was lying flat on my silver tanning blanket on our front lawn in Urbana. Given its color and shiny texture, the blanket reminded me of aluminum foil, purposely developed to reflect the sun. As I flared my nostrils to get an extra whiff of the freshly cut grass that was practically tickling the bottom of my feet, I daydreamed about my forthcoming move to Madison, Wisconsin for college.
Earlier in the summer, my friend Andrea and I had visited Madison for new student orientation. The day we arrived we met two guys on campus at “Der Rathskellar,”a German beer Hall in the Student Union. To my amazement, one of them, an attractive boy named Tom with brown hair and beautiful blue green eyes, seemed instantly drawn to me. “Do you want to take a walk out by Lake Mendota?” I nodded, and wondered if this would lead to a kiss. Already eighteen, I had only kissed three boys, well under the average of my friends. It wasn’t until we began to stroll together toward the water did I notice that Tom had a limp. “Have fun, Meg!” I turned around to see Andrea waving at me with a mischievous grin. She began to hold hands with Tom’s friend. In hindsight, I think Tom may have had an artificial leg. However, in that moment, I instantly grew embarrassed of being with someone with any type of visible difference, and began to look around.
The ridiculousness of this only hits me in hindsight. There I was, in a new environment where I knew no one, and I was worrying about what others were thinking when they saw me with Tom, given his physical challenges. To be seen with someone imperfect would only draw attention to my own imperfections. Notwithstanding the fact that Tom was clearly willing to look past my two fingers, I was nowhere near this level of maturity. As we sat together, he made his move. I enjoyed the kiss, and reveled that now I had kissed FOUR boys in my life, yet I felt uncomfortable. I knew this would be the last time I would see Tom. After all, the last thing I wanted was to start my freshman year associated with anyone that looked physically disabled. Back then, I believed that the more I could associate with people that were “normal,” the more I could assimilate and feel normal. “Meg, get off the lawn! You have been out in the sun too long!” I was instantly brought back to reality by my father, who hated when I sunbathed. Neither my Mom nor Dad could ever understand the tanning thing. Whenever I was tan, especially in my face, I felt pretty. Unbeknownst to my parents, I spent hours in the sun that summer, hoping that as I arrived for school, a great tan might deflect attention away from my physical deformities.
Pumpkin Face. That is the first reference to Patricia Krentcil, the “Tan Mom of New Jersey”, that I had ever heard. I was in our kitchen and Today (NBC) was on. The bronze colored 44-year-old mother was in hot water for allegedly taking her then 5-year-old daughter into a tanning booth. The story was in itself shocking, and the jokes swiftly followed. “She’s so tan she smoking.” “She looks like a Halloween Pumpkin that’s been sitting around for months.” And of course Saturday Night Live followed as expected with comedienne Kristen Wiig playing Krentcil and saying, “Now I have the look every woman dreams of: Wile E. Coyote, right after something blows up on his face.” As the public mocking continued, Krentcil even inspired a “tanarexic doll.”
Like most, I was appalled at the thought that anyone would bring a child into a tanning salon. But I was admittedly intrigued by the story; perhaps for different reasons than most. First, I was fascinated by Krentcil’s reaction to the attention she ultimately invited by granting so many interviews: anger. To me, she was ill-prepared for the negative public attention. “There’s somebody out there on my whole life that doesn’t like me because they’re jealous, they’re fat and they’re ugly,” she shouted to the cameras. Not sure the sentence made sense, but she got her point across. But reacting angrily when others are judging you is the easy, even natural response. In interview after interview, I waited to see if Krentcil could find true strength and even inner peace, despite all the judgments. Although she claimed to not care what others thought of her, even describing them as envious, I never felt that even she herself believed it.
Second, somehow (strangely), I relate to her. Being extremely tan seems to make Krenticil feel good about herself, even beautiful. Based on personal experience, I get that. Even these days, while I won’t expose myself to the sun or tanning beds, every so often for a special occasion I’ll get a spray tan. Being a bronzer version of myself can make me feel attractive, and allows me to wear colors in which I otherwise look putrid. But, the comparison stops there. Krenticil’s tanning is extreme. What is it about her natural appearance that is not good enough, that makes her feel that she must significantly alter it? I am always captivated by people who are born with no overt physical difference, but who nevertheless feel the need to “fix” themselves. Despite her otherwise normal physique, Krentcil was now experiencing what it is like to feel different:
People judge. People mock. It’s never fun when you are the target.
Okay, admittedly I have taken spray tanning, at least on one occasion, to the max. A couple of years ago, I showed up at my nephew Sam’s bar mitzvah looking completely over-baked. The truth is, I’ll never shake the desire to look good and thereby feel good about myself.
But I have to laugh now at the change over time. I’ve gone from not wanting to be seen with someone physically imperfect, to embracing children born like me and learning to walk proudly and unselfconsciously with them. And now all I want to do is encourage others to flaunt that which makes them different.
It is 7:00 am and I am sitting on my bed in my house in Urbana. It is time to get up for school, but I can’t get dressed, at least not yet. No, I need to wait for one of my parents to come in to take my pajamas off, and then to help me get dressed, and to tie my shoes. As I wait for someone to come, I hear my older and younger brothers, already having dressed themselves, eating their cereal downstairs. Today will be no different than any other. It will be another
day at school where kids will stare, and, rather than feeling tormented, I will stay in at recess. Each day I stare out the window, watching them play sports and activities that I cannot play. I think of the teachers as my friends since they are the only people that seem to have any interest in me while at school. With only one finger on each hand, it was assumed I could not write, so the teachers and my parents have figured out a way that I could perform my elementary school assignments using “PLATO,” a University of Illinois project that was the first generalized computer instruction system. Dinner is no better. We are having my mom’s Jujeh kebab. Although it is my favorite of her Iranian meals, I’ll have to wait for my mom or dad to cut up my meat. Before bed, I love watching M*A*S*H on TV at night with my brothers. I sit on the couch with them and for once feel accepted and normal. It’s time to go to sleep. My mom follows me up to help undress me and put my pajamas back on. I hate myself.
The above is not a real depiction of my life. None of it ever happened. But it very easily could have been.
Recently, over the Memorial Day weekend I was taken by an article called, “From Tragedy to Triumph,” written by Nicholas Kristof in the New York Times. The story was about Memuna Manaray McShane. At only two years of age, Memuna watched as her grandmother and mother were attacked and killed in war-torn Sierra Leone. Some of the bullets that killed her grandmother shattered Memuna’s arm, grazing her side. Memuna’s injuries caused her to lose her arm just below the shoulder.
At the age of six, Memuna was adopted by Kevin and Kelly McShane, who were already the biological parents of two children around Memuna’s age. Up until that moment, Memuna was spoiled, having become accustomed to adults catering to her demands and assuming she always needed physical assistance due to her amputation. Rather than being overprotective and fearful for their new daughter, the McShanes took the opposite approach and treated her just like their other two children. “We just wanted her to be a normal little girl,” Kelly explained. The result? Today Memuna functions independently, doing everything from the dishes to rock-climbing. In fact, she is a 15-year-old basketball star at her high school in Washington, DC.
This story resonated so strongly with me because the McShanes were just like my family. They reminded me why I need to continually praise my own parents, and emulate their method of parenting. Had Memuna’s adoptive parents been overprotective, she would have suffered even more. She would have grown up a creature of dependency, with all the sadness that carries.
My husband John and I continue to carry these lessons forward, in particular with our sons, Ethan and Charlie, who share my condition. Just the other day I had to hold back from cutting their chicken at dinner. Ethan, in particular, was frustrated with us. “Mom, please will you cut this? It’s on the bone so it’s impossible for me to get the meat off by myself!” Fighting the urge to help your child, especially when they are seeking your physical assistance to eat, is mentally exhausting. However, we are committed to continuing to holding back, just as my parents did for me; just as the McShanes did for Memuna.
The alternative? Read the first paragraph of this post.
It is no wonder that growing up, one of my favorite stories was, “The Little Engine That Could.” In the tale, a long train must be pulled over a high mountain. Larger engines, are asked to pull the train, but for various reasons they refuse. The request is sent to a small engine, who agrees to try. The engine slowly advances over the mountain while repeating: “I-think-I-can”. The little train eventually succeeds, overcoming a seemingly impossible task.
I had been at it in my room in Urbana for hours with only marginal success. Yet, I was determined. Earlier, my parents had taken me and my two brothers, Peter and Ted, to Windsor Swim Club, our town pool. As we began to get dressed after our swim, I looked around to see if anyone was coming. “Mom, can you please tie my shoes?” Believing all clear, I sat on the wood bench and lifted both my feet and pressed them against my mom’s thighs. And then they came. From around the corner, four girls about my age walked into the room to change. To my mother’s surprise and frustration, I struggled to wriggle my shoes from her grasp so they wouldn’t see her helping me, but it was too late. As the girls stared, my cheeks flushed with embarrassment.
Up in my room later that afternoon, I was determined to tie my shoes independently. By this point, my desire now became a present ‘need,’ not simply a ‘want’ for someday in the future. I knew I was only one summer away from being old enough to ride my bike with Peter to the pool, and for that I would need to be able to manage my shoelaces without help. As the only person in my family missing digits, I had no role model to show me how to overcome my physical challenges. And when it came to tying shoes, there were few options. After all, the idea for Velcro on sneakers was still years away.
Suddenly, I heard my mom’s voice calling out from the kitchen. “Meg, come downstairs! It’s time for dinner.” I knew I would not come down, at least not yet. I needed to figure out how to create leverage to pull the laces, without the assistance of multiple fingers. Once accomplished, the next step would be to unravel the lace just at the time I would need to make one loop pull through the other. Time and again, I would try. And fail. Eventually, I heard the clinking of silverware against plates and chatter downstairs by my family. I was hungry, but refused to abandon my challenge. So many people already wondered aloud about my ability to write or use scissors. For those tasks, I could never understand why they were seemingly so in awe. Learning to tie my shoes….now that would be a real accomplishment!
I was closely surrounded by about thirty eight-year-old girls, deliberately watching me write. Actually, I had invited them to stare. I knew exactly what was going on in their minds. How in the world can someone with only one finger on each hand possibly write anything?
Right before I spoke to the group of inquisitive and precious “Brownies,” (young Girl Scouts) the librarian at the school I was speaking at reminded me that they would be curious about even the “little things.” She gave me an example of a time she once taught children and brought in a blind man to speak to them. She paused before saying, “He told them that no question was too personal. So, they proceeded to ask him how he could go to the bathroom without being able to see the toilet or his own body parts.” Once I heard this I was ready for anything these girls would ask. They entered the room and at that very moment it occurred to me that with all my blogging, parenting of children born with my condition, and public speaking experience, I had never actually spoken directly to other children about my condition.
Among other topics, I focused on the word, “courage” with the girls. Courage, I told them, was “the ability to face difficulty, uncertainty or pain without being overcome by fear.” Borrowing from one of my recent blog posts, we discussed the topic in the context of the YouTube videos of young girls posing the question “Am I Pretty?” and inviting public comment. Using the video postings as an example of fear, we discussed the importance of their having the confidence and moxie to believe in themselves, rather than being swallowed by the opinions of others. I challenged them to become their own heroes.
It wasn’t until the very end of our discussion did one of the girls raise her hand to ask me if I could write. “Sure!” I responded, relieved I was not asked how I wipe myself or something similarly awkward. “In fact, thank goodness I can write, since law school would have been much harder if I couldn’t.” That went over all of their heads, so I moved right to the demonstration.
As the girls crowded around me to see my special talent, I wrote one word: M-E-G, and then followed it with a picture of a heart. From their focused stares, they appeared to find it fascinating to watch. But to me, writing my name was something I had always taken for granted. My choice of what to write for the girls was simple, yet purposeful. At the end of the day, I get through it all by loving myself, and having the determination to try and ultimately manage not only what may come more easily, but also the seemingly impossible.
Long after my family finished their dinner, I finally figured out the right action plan. Without the additional fingers on each hand to help me hold a strong grip, I realized my own shoe laces were not sufficient. I ran into my dad’s closet and found some old, long laces and inserted them into the lace holes of my shoes. Success! As I suspected, the only way to tie my shoes independently was to wrap the longer laces around each finger in order to create leverage and tension. That night, even if it was almost time for bed, my mom’s spaghetti and meat sauce never tasted so good. By the following summer, Peter and I would be riding our bikes together to Windsor. One day in the distant future I would be helping my own kids tie their shoes, even their soccer cleats.
I woke up a week or so ago and discovered that I had a new follower on my @MegZucker Twitter account. It was, “@StephanopoulosG.” My heart raced. “John! John.” I belted out as I ran down the stairs to let him in on my news. I found my husband sitting in our family room with Savanna. “You’ll never guess who is following me on Twitter?” Not being a Twitter account holder, my husband barely lifted an eyebrow. “Who?” “George Stephanopoulos, the co-host of Good Morning America and host of ABC’s This Week, THAT is who! Isn’t it great? I’m not sure how he learned of my blog, but it would be awesome if he is reading it!”
Always the skeptic, John looked at me with obvious doubt. “Are you sure it’s really him?” “Well, I see what appears to be George’s photo next to his Twitter account address, and the tweets are all about ABC news and things he is up to, so I presume it is!” John did not respond with the enthusiasm I had hoped for, so I left. As I climbed the staircase in our home, I could hear Savanna saying to John, “Daddy, do we know George Snuffleopogous?”
The next day, I was so elated about my new celebrity follower and the exposure and opportunities it might bring, I even mentioned it at Charlie’s soccer game to my friend Stacey. “Meg, that is so great!” I smiled with pride. I even considered calling my literary agent. Thankfully, I did not. Later that evening, I decided to see what good old George was tweeting, even hoping by now he had sent me a personal message. But then I started to examine his Twitter account more closely and for the first time noticed his bio. It read: This account is not affiliated with George Stephanopoulos. Location: San Francisco. My heart sank. In fact, if I had a tail, it would be hiding between my legs.
What a loser I am, I thought to myself. Not only did I have the big head to think the real George S might be interested in my site and blog, I had the audacity to share it with others. Now I had to tell John and Stacey. She of course would understand. My loving husband of twelve+ years, however, would enjoy rubbing it in. The real question was the following: If the real George S is not interested, why would the fake George be following me on Twitter? I pondered, even daydreamed. Maybe the fake had a special “in” with the real, and this could still turn out beneficial? Maybe even having the fake George S was a good thing, even if indirectly? Later, I reflected on how strange it is that we can get caught up valuing ourselves based simply on how others view us, even people we have never met.
As I have continued to write my blog, I have noted a pattern. Whether by private e-mail, or online post, several people who have been following have told me they think of me as “brave.” While I know it is intended to be a compliment, the comment always takes me aback, since that has never been a description I would attach to myself. After all, my being born with ectrodactyly is simply something I place within my own definition of ‘normal,’ (whatever that means). In fact, just like many, its all I have ever known.
But, then I started to speculate that perhaps I deserved the valiant description. I even began to convince myself that my willingness to put my stories and photos out there for all to read, even to gawk, was courageous. After all, in the opinion of others, look at all I have overcome, and I have the courage to flaunt it.
But am I brave? Nah, not really. Recently, my friend Dave sent me an article in the NY Daily News about a nine-year-old girl named Clara Beatty. Even before Clara was born, tests determined that Clara would be born with an unusually rare condition called “Treacher Collins” syndrome. This meant severe facial deformities—droopy eyes, under-developed cheekbones and a tiny jaw. Once born, Clara would require a tube in her neck to assist her breathing. Further, the lack of an outer ear with restricted ear canals would mean she would need hearing aids within 6 months.
Much of the article was on the fact that her parents opted to see the pregnancy through and have Clara, despite having information that might lead many would-be parents to terminate the pregnancy, at least according to the report. I, however, focused on the fact that although Clara was still too young for cosmetic surgery, her parents have discovered that, “Clara was quite able to cope, sometimes better than they.” While inevitably Clara finds all the questions about her appearance, “annoying,” her classmates at school describe her as “awesome.” It seems that even with her significant facial deformities, Clara has led the charge, teaching the world and even her parents, a thing or two. “We’re all learning that we’re just going to do what we’re going to do, and we’re not going to pay attention to what other people think.” Janet Beatty said to the reporter.
Every time someone new looks at Clara’s face she is judged, even pitied. But yet, she still endures, even inspires. Now that, to me, is brave. Reading about Clara reminded me once again how easily we can get consumed with ourselves, and how important it is to put our own lives into perspective. Even Clara can read about another little five-year-old girl named Brooke Hester, afflicted with cancer, who started a floral headband business called, “Brooke’s Blossoms,” to help other little girls with hair loss feel pretty, despite their life experience. Fortunately, there is no shortage of truly brave and admirable people out there.
A week later I went to see what the good ol’ fake George S. had recently tweeted. To my disappointment (and amusement), he had dropped me as a follower.
A few days later was Mother’s Day. My son Ethan’s card read,“To an awesome Mom, who is not afraid to admit it!” Perhaps this is all a sign I need to keep my ego in check, or at least keep it in perspective.
The air was brisk for this early in the Fall. My family was in New York for a visit from the Midwest. Grateful for some rare time alone, I volunteered to go pick up some milk and dessert with my maternal grandfather, Ozzie. Despite the fact that his jet-black hair had long gone gray, his blue eyes still had their twinkle and he remained strikingly handsome. “I’ll take that!” My grandfather’s voice almost sounded irritated, as I attempted to grab the heavy bag from the store clerk’s hands. “No, that’s okay Grandpa, really.” As we walked outside, a powerful wind blew against us, making the temperature feel even colder. Again I tried to take the bag, but my grandfather refused. “Meg, I said I have it!” I was frustrated. Didn’t he understand that I could carry the bag myself? After all, he was my grandfather! While I loved him unconditionally, in that moment, his actions burned me inside. To think that because of my sole finger on each hand, that even he believed I was incapable of carrying the load to the car. After we returned, I shared my frustration with my brother Peter. My dad overheard, and turned to me. “Meg, Grandpa knows you can handle things and that you are strong. This has nothing to do with the way you were born. How do you think he thinks it makes him look if someone sees him, a grown man, having an eight-year-old carry a heavy grocery bag for him? He has his pride, too.”
As hard as I tried, my dark curly hair would simply not be contained in the white hair net. With my uniform that consisted of a plain white shirt and black pants, along with the net, I knew I looked hideous. However, I never complained. From my training at the retirement home, I knew that the senior citizens at Clarke Lindsay needed everything extremely sanitary for health reasons. Every morning, each resident would select their meal preferences on a paper menu that was delivered to the Café, where I waitressed. Not the first of my friends to work there, I heard the job was not too difficult: Serve meals with a smile. However, I didn’t think in advance about what was really involved. Balancing several plates and glasses in my hands (and arms) all at once while swiftly moving from table to table was no breeze for me. Despite the physical challenge, I was determined to succeed.
My favorite two residents were Mr. Cook and Mr. Birdall, who always sat together. Before I ever had the chance to flash my pearly whites, Mr. Cook would beam at me as I served his meal. Mr. Cook was in his late eighties, and was extremely bow-legged, causing him to walk somewhat imbalanced. Like my father, Clarence Birdall was a Professor at the University of Illinois. He had taught Political Science in my dad’s department, and still maintained an office there. After my first day at work, I went home and asked my father why Mr. Birdall continued to go to the U of I every day. After all, he was already into his nineties. “Meg, the office gives him a sense of purpose. It allows him to maintain his dignity. It’s important.”
The following day, Mr. Cook ordered Jello with whipped cream, a favorite among the residents. (The alternative was prunes with whipped cream—also a favorite). As I attempted to balance Mr. Cook’s dessert as well as his water in my hands, I mistakenly set the plate down too fast. To my utter dismay, the wobbly Jello slid off his plate and directly onto Mr. Cook’s pants. I was completely mortified, begging his forgiveness for being so clumsy. I can still hear his voice. “Heh, heh. Better you than me!” I reported the accident to our supervisor. “Don’t worry about it,” she told me. “By your causing the spill, he gets to preserve his self-esteem.”
We drove up to the senior citizens’ home in my town, my grandfather’s new residence. I looked over at his wrinkled face. He was now ninety-two, and understandably miserable. My grandmother had just passed two months before, after sixty-seven years of marriage to him. “Here, Meg. This door is a bit heavy.” As I walked in with him, despite his age, I held back, allowing him to open the door for me. “Thanks Grandpa.” His face lit up and his bright blue eyes twinkled at me. By August, he would be gone.
Earlier this Spring, I posted a blog titled, “In an Instant”: How anyone might be just one step away from an unexpected event, where they are changed forever. For most however, change occurs slowly over time. It sneaks up on us. Then one day, we find we’re the objects of someone else’s pity. From the moment I worked at Clarke-Lindsay, I generally felt a special connection to the residents. I finally realized why. They experience what I experience….being judged solely on physical appearance. Insults to their egos, even from those who are well-meaning, occur often. And they are usually powerless to change other peoples’ minds. In truth, whether our physical abilities are limited by birth, accident or age, our need to assert and preserve our dignity never diminishes.
It’s worth remembering, since one day, we’re all likely to share in this experience.
Despite the long ride ahead of us, we were all elated. It was the first time my confirmation class was going on a field trip. The plan was to take a bus from Sinai Temple, our Synagogue in Champaign, IL to a White Sox game that afternoon in Chicago. There was about ten of us, in addition to our class supervisor. As we piled on the bus, I sat with my childhood friend, Josh. Next to us, our friends Daniel and David sat together and excitedly talked about the game. A deep lover of music, Josh closed his eyes and listened to his Walkman, while I pressed my nose against the window to stare at the cornfields; well, at really nothing in particular. Already lifelong friends, Josh and I didn’t need to talk for the sake of it. Even as teenagers, we already enjoyed one another on a level where just sitting together was as good as anything.
The trip had been planned for months, and so far, everything had worked without a hitch. However, after almost two-and-a-half hours, as we approached the outskirts of Chi-Town, I was the first to notice the spoiler: rain. Not the type that makes your hair frizzy. Rather, it began to pour buckets. Think, ‘cats and dogs’ rain. Although we waited in the bus for an hour outside the stadium hoping for the clouds to break, the weather was not on our side. Eventually, it became clear that our plans to see the game were washed out. As the bus turned around to head South, we all felt deflated. Josh put his headphones back on, and I once again stared out the window. Daniel and David fell silent.
Our parents were not expecting our return to the temple for hours, so upon arrival, no one was waiting for us. Back then, there were no cell phones—and no one thought to stop the bus on the road to call our folks and report our failed adventure. Finally back at Temple Sinai, some went inside to call their parents to pick them up. I hesitated, knowing my dad was teaching a class at the U of I and my mom was at work. “Hey, Meg!” I turned around to see Josh grinning at me. It was the first I had noticed that he was wearing red sweats seemingly two sizes too big. As always, he had a smile that was contagious-something that in its own right always made me happy; like noticing an unexpected rainbow after a storm. Josh said, “My dad is teaching today too. I think everyone has already left. It’s just 5 or 6 miles down Windsor Road, what do you think? We have been sitting on this bus for hours.” I hesitated. Could I possibly walk that far? I wondered. “C’mon, Meg! The rain has stopped. Let’s try something we have never done before. It’ll be an adventure!” In that moment, I knew this would be a step out of my comfort zone, but with Josh’s encouragement, I knew my answer. With a quick jolt of excitement, I agreed.
This coming month, among some other events I am looking forward to, I am scheduled to speak to a Girl Scout Troop. I have been thinking a lot about what to cover. I was a Brownie back in 2nd grade in Islamabad, Pakistan, and so the opportunity to speak to these girls resonated well with me. Perhaps I should discuss my “Heroes” blog post from earlier this year, and focus with the girls on what a hero means to each of them. It’ll be interesting to see if any of them can include someone they actually know.
But I want to leave them with something more significant. Something that gives them an understanding of how a two-fingered girl can wind up overcoming what might otherwise seem to be a life-sentence of insurmountable challenges. The other day I was flipping channels and came across the old Kevin Costner film, “Field of Dreams” (1989). Recalling how much I had loved the film, I sat back to watch. The movie was about a farmer, Ray Kinsella (Costner), who hears a voice that whispers, “If you build it, he will come,” and creates a baseball diamond for the ghosts of baseball greats from the distant past. Beyond the plot though, the film conveyed an important message. It postulated that if you set your heart to something, you can do anything. Ah ha! And then it came to me. Although the girls probably never saw the old film, I want to share it with them, at least thematically. Let’s face it. I am who I am because my parents raised me to believe anything was possible. They allowed me to take risks, even to fail. With that type of upbringing, I explored life outside of my comfort zone. The reward for this type of attitudinal risk-taking was freedom–the freedom to try new things, and experience success within my own definition, for my own life.
There is nothing sweeter.
As Josh and I walked down the road together, we began to laugh (at ourselves) recalling that as kids, we would run out of temple services in the evening and go outside to sing Frank Sinatra’s “Stranger in the Night” together. After only a mile or so of walking toward Urbana, a white station wagon pulled up. It was Daniel’s father. “Meg, Josh—get in. I’ll give you a lift!” We took the ride. After all, it began to rain again, and sometimes even if you make the decision to take a risk, you also realize that other people might be there to support you along the way.
This post is dedicated to my dear friend, Josh Gottheil, who died of lymphoma in 1989, at the age of 19.
Although only late Spring, it was an incredibly hot day for those of us living in Central Illinois. I was in the 6th grade at Yankee Ridge, my elementary school in Urbana. At the time, I probably didn’t know what the word “perspire” meant, but it didn’t matter. I felt my hair begin to stick to the back of my neck as I ran around the bases during recess. I crossed the mound with yet another home-run and my team cheered, “Way to go, Meg!” And then I overheard someone from the other team remark, “How many homeruns does she have now, three in a row?” During school, our favorite playground activity was to play “kick ball” with a rubber ball. Although many other kids (especially the boys) played baseball or soccer outside of school, my physical challenges put those sports literally out of my league. My feet could never fit into cleats and trying on a glove would only prove to be an exercise in futility. However, where I was lacking in some areas, I made it up in kick ball. Yes, I was quite good, but I had a secret weapon. Little did anyone know that my home
runs were not exactly the result of talent.
Sports. I am well aware of how important it is these days to have your kid involved in at least SOME sport, even multiple sports, particularly in the community where I live. For my family, and in particular our boys who were similarly born with my condition, ectrodactyly, the question is not which sport are they interested in playing in, but rather, which sports are they able to play. For years I waited, okay, dreaded, for Ethan, now almost age ten, to ask me if he could play on a baseball team. If you read my “Let Go and Let Live” post from a few weeks ago, you know what I would have done. Had he asked, I would have (hopefully) followed my own advice and allowed Ethan to explore on his own what was possible. Sure, he can bat a ball, and he can certainly run around the bases. But even I cannot imagine how, with only one finger on his hand, he could successfully wear a baseball glove and play the game. Somehow (okay, thankfully), I haven’t had to Let Go and Let Live for baseball, since neither Ethan nor Charlie have asked either John or me whether they could play on a team. My gut tells me that deep inside they both already realized that wearing a glove would be a significantly challenging impediment. Fortunately for us, there have been other viable options.
Although I never had any delusional expectations of athletic grandeur for our sons, I rejoiced (inwardly) in the fact that since each turned five, sports like basketball, golf, swimming and soccer have been attainable. For soccer, cleats are necessary. Fortunately, unlike their mother, both boys have more of a fully-formed foot, with two toes on each foot, rather than one. From day one, we knew finding well-fitting shoes would be a challenge for the boys, but figured we’d find a way to deal. When I’d see cleats, I’d just buy them and hope they’d be good…or at least good enough.
This Spring, the soccer season kicked-off on a beautiful, warm and sunny day for Charlie. He was extremely excited to play on his new team, which included many of his 1st grade friends. Believing that his feet don’t grow very quickly, I had put on his cleats from the Fall season, grabbed some blue Gatorade for him, and we departed to the game. When we arrived, I quickly realized that I had forgotten my soccer chair in our car. As Charlie began to practice with the coach and other kids, I ran back to retrieve it. When I returned, I caught a glimpse of Charlie’s face. Typically full of smiles, he was on the field frowning, almost seemingly in pain.
Every mother knows “that look” right before their child is about to cry. There it was on my son’s face, and I felt my stomach tighten. Not knowing the cause, I considered the possibilities. Perhaps there was a new kid on his team who was asking Charlie about his fingers, I considered. The more sensitive of my two boys, at least at this age, I figured this was the likely cause for Charlie’s unhappiness. I began to prepare to move him swiftly past this pity party. However, as Charlie left the field and approached me only twenty minutes into the game, he appeared to limp. My mind began to race for an explanation. Maybe it wasn’t just a curious new kid. How did he get hurt? Who might have injured him? I braced for anything. “Mom, my right cleat hurts so much. I can hardly walk—I can’t play.” Immediately relieved (and inwardly ashamed of my jumping to conclusions), I checked in. “Charlie, do you want to first finish the game?” He shook his head, begging me to leave. I was wrong about Charlie’s feet. They can indeed grow quickly…at least in width.
In that instant, I felt at a minimum guilty and mostly like I had failed my son. How could I have been so ignorant? Why had I never tried to get him custom cleats? Was a plaster mold of his or Ethan’s feet really that bad? How would they look? The following day, I called Charlie’s doctor who was wonderful, and even found a “plaster guy” for me. However, as it turned out, the exorbitant price of making custom shoes, even after the plaster mold is completed, didn’t make economic sense, at least for us. Charlie’s foot would grow again within months requiring yet another mold. He was too young for us to try such a shoe experiment. I brainstormed that night, trying to figure out how I could possibly help Charlie, as well as Ethan, who plans to play soccer again in the Fall. If this was an activity they enjoyed, then I needed to help them, but how? And then it hit me. It was 2:00 am, but I raced anyway to my laptop and typed in the search bar something I had never tried in the past: “Extra-wide cleats.”
The handsome black, cleats came in the mail two days later. As Charlie tried them on, his smile returned and my heart melted. I realized that I now have my own 21st century version of a secret weapon: the Internet. This coming season, I am hoping that with his new, wider cleats that Charlie will have the opportunity to kick the ball very far too, just like his mom.
My parents had recently taken me across the border to Vincenz, Indiana. Always struggling to find shoes to that fit me, my mom and dad decided to try to have a custom pair made. As I sat on a chair with first my right foot, then left, placed into the mixture, I couldn’t help but feel blue. The plaster had a clammy texture, and coupled with a cold sensation, this was no joy. A month later, my new shoes arrived, and I was anxious. While the other girls daydreamed about cute boys and scented lip gloss, (although I already liked boys and Bonne Belle gloss too), I fantasized about wearing attractive and comfortable shoes. When I opened the box, there were two pair, one in brown (for “every-day” use, according to my parents), and the other in wine (for special occasions, like my cousin’s forthcoming wedding in California and my batmitzvah).
Other than color, the two pairs looked identical. Most significantly, rather than appearing like shoes purchased off-the-shelf, they were mostly round in shape, faithful to the form of my foot. In a word, I despised them. Despite the fact that they were more comfortable than anything I had ever experienced, the young fashion-maven in me knew they were ugly, and I loathed wearing what would eventually be referred to as my “moon-boots.” As I tried them on for the first time, I turned to my father to object. Ever the realist and optimist, he turned to me and said, “Meg, look at the bright side. These shoes are made with a special type of steel at the toe. It’s like having your own secret weapon. You’ll probably be able to kick a ball really far.”
Imagine. You are at a shoe store. You see the most beautiful pair of shoes. They are open-toed, spectacular and also well-made. Despite the price, you even have the money to buy them. However, you don’t bother trying them on, there is no point. And so, on to the next pair. These are nice and sturdy, and because they are ankle boots in the smallest size available, you know it might be worth a shot. The sales clerk notices you, offering to help. You smile, but refuse. Again, there is no point. She can’t give you what you need. You casually look around to see whether anyone is watching, then grab some extra white paper from the box, stuffing the top of the shoe. Never sure of how much to place inside, you do your best. As you slide your small foot into the first shoe, you note there is too much “stuffing.” You wait until no one is around to notice, and then swiftly remove 1/3 of the paper. Success! You move on to the next shoe, stuffing in hand, as long as no one is looking, and repeat your routine. With both pair on your feet, you stand-up to walk. They seem to hold your feet in, enough. The sales clerk returns. “Hi, how do they fit?” You smile again and lie. “Great, thanks. I’ll take them.” Imagine. Every time you purchase shoes, they never fit. Ever.
This past week John and I went with Ethan, Charlie and Savanna and some close family friends to the Cayman Islands for a vacation. The decision to go was quite decadent, at least for us. I can remember past breaks where the kids longed to “getaway.” Some of my past responses have included suggestions such as, “Okay, let’s go stay at a hotel in Princeton, NJ!” However, this particular break we decided to really go away.
With its crystal clear turquoise water, balmy weather and endless activities for all of us, Cayman did not disappoint. However, on this trip I disappointed myself. I have described how far I’ve come, urging all to flaunt, rather than hide or be embarrassed of their own difference, or simply what makes someone unique. However, the minute I entered the beach at Cayman, I felt self-conscious about baring my feet. On the first day I even kept my “pool” shoes on. Although as time progressed I began to I relax a bit, I remained reluctant to walk freely at the pool or beach in front of anyone without my shoes.
Let’s face it. To walk in my shoes, every step is one of discomfort. There is little I can do to change that fact, and even if I tried to make it better, there is no ideal solution; I would fail. However, when it comes to publically displaying my bare feet, I have control. I know it is up to me to overcome my emotional discomfort. There is no perfect formula to finding the strength, the courage, to flaunt something you otherwise feel ashamed about.
At one moment I took a break from reading at the pool, and reflected on a conversation that I had recently had with a stranger named Ashley on a train. She was blonde and attractive with no observable difference. Her husband sat next to her and remarked that he thought I looked like Talia Shire, the actress who played Rocky Balboa’s wife. I chuckled. We ended up chatting and at some point I mentioned my Don’t Hide It, Flaunt it blog. Ashley then confessed to me that she had scars on her body and that she had been extremely embarrassed to wear a swimming suit in public. “You sound like you are speaking in past tense,” I responded to her. So she explained. “I was in Las Vegas with my husband having a drink at our hotel pool and was wearing a robe over my suit, fully covered. The next thing I knew, I turned around and saw a young woman with one leg making her way around the hotel in a bikini. She was confidant and energetic.” Ashley paused. “Watching her, I felt foolish about being ashamed about my scars. She gave me the confidence to remove my robe, scars and all!”
With that memory jarred, I went on a long morning walk on the beach, with my feet totally bare. I was fascinated with how small my footprint looked in the sand compared with others. Sure, some people may have stared at me, but in that moment I was not deterred. I found the strength to not hide my difference. It wasn’t based on my own self-inspired confidence, but rather at the thought that my act might encourage others to “flaunt.” Maybe it’s not the perfect reason, but perhaps it is good enough.
On the flight home I watched a 2011 movie called, “New Year’s Day.” Although mostly forgettable, (at least to me), the film had one line that instantly made me reflect. Josh Duhamel, playing the character “Sam,” posed the following question: “What would you do today if you knew you would not fail? Now go out and do it.” Given the fact that fitting into a dazzling designer shoe is only a pipe dream, flaunting my difference is actually something I can control, even achieve success in. I will continue to try to go out and do it, whenever and wherever possible, with the hope that there are others like Ashley out there who might benefit.
My husband, John, and I have always read stories to our kids before bed. Many of them are traditional or updated versions of fairy tales. Though often cliché’d by today’s standards, the tales were always used to teach a moral or a life lesson. Given my shared condition with our boys and that Savanna’s “difference” is the fact that we adopted her, it occurred to me that I could try my hand at the telling of the tale…
Once Upon a Time, there was a girl born in the middle of winter named Meg. From the moment she arrived into her parent’s arms, she did not cry. Instead, she gazed with big brown eyes at her surroundings, soaking in everything a newborn could possibly absorb. To the surprise of everyone in the hospital, including her parents, Meg only had one finger on each hand, and one toe on each foot. Never having been exposed to the condition called “ectrodactyly” that affected Meg, her parents were naturally alarmed. Yet despite Meg’s physical abnormalities, they loved their daughter unconditionally, as only parents could.
Meg grew into a toddler, fun-loving and adventurous, yet unaware of her own “misfortune.” Although slightly delayed, Meg learned to walk. She could hold a ball or doll like other kids, but had to learn to do so in her own way. She played with other kids unselfconsciously. The young girl was oblivious to her condition and did not hesitate to show off her hands and feet in front of a camera, just like everyone else.
And then one day, when Meg was around the age of four, another young child questioned her about her hands and feet. Not having an easy answer, Meg in turn questioned her parents. She was told that she was “born this way,” and to go out and play. Her parents wisely decided to treat her like any other kid. Yet despite her parent’s support and efforts, Meg began to notice that people were staring at her. She started to absorb every stare. In front of a camera, Meg began to hide her hands, preferring to appear in photographs only with her hands concealed.
As Meg grew into a young woman, her disposition was naturally positive, and as a result, she made friends easily. Inside, however, she still did not fully embrace herself, two fingers, two toes and all. She continued to hide her hands, especially when photographed. She felt grateful that her feet were always covered by shoes.
And then one day, at the age of 27, Meg met John, who loved her unconditionally. Within 9 months he proposed marriage. Thrilled and elated, Meg accepted the marriage proposal, even before she had fully accepted herself. She continued to hide her hands, even when choosing a wedding dress.
A few years later, Meg and John began to have children. First Ethan, then Charlie and finally, Savanna. Like their mother, both boys were also born with ectrodactyly. But now something was different for Meg. She loved her children unconditionally, as her parents did her, and in doing so found she finally able to accept herself. Meg did not hide her children’s hands in pictures, and this helped her to have the courage, after years of hiding her own hands, to place them naturally at her side when being photographed. After all, she realized her children would look to her as an example.
And so Meg learned that what she was thought was a misfortune was in fact a blessing. She had a choice: to hide or to flaunt. With the birth of her children, Meg could no longer be ashamed of what made her different.
The time to hide had past.
She was ready to flaunt.
When could helping others ever be considered a mistake?
The Church was beautiful, yet, purposefully simple. I was in high school and had been dating my boyfriend (coincidentally, also named) John for six months, and he had brought me with him to mass. As row after row of parishioner’s lined up to receive the Communion wafer, I did what I believed any loyal girlfriend would do: (unbeknownst to him), I followed John up to the altar. When it was my turn, John turned back in surprise, but it was too late; the wafer was placed by the priest directly on my tongue. It was totally plain, essentially tasteless. When I returned to my seat, John’s sister Donna giggled and said, “You are so funny. The wafer is only for Catholics that receive Communion!” I felt foolish and felt my face flush with embarrassment.
When I later recounted this story to my older brother, Peter, he was a bit confused and challenged me. “Why the heck would you have been in church eating a Communion wafer?” I replied matter-of-factly. “What’s the difference? Don’t you remember? Big grandma took us to visit Santa when we were kids.” I viewed this as similarly innocuous. (“Big Grandma” was the name we called my mom’s mother since she cleared 5’5 feet, a giant compared to our father’s mother, my little grandma). “Meg, that is ridiculous!” Peter then proceeded to let me know what the wafer represented. Oops.
Even without my wafer error, the very fact of my being Jewish made me feel like a fish out of water at that service. However, when I noted the baskets passed around for donations, I was reminded instantly of the Jewish concept of “tzedakah.” In its simplest terms, giving tzedakah or charity is simply an act of righteousness and a commandment to help the needy. The passing of the basket at the mass taught me that no matter one’s religious affiliation, the duty to help people in need was a shared priority. One question that often arises, however, at least in my life, is how to decide when “trying to help” crosses the line.
In March of this year, the Hometown Quarterly printed
an article I wrote (“Let Them Stare!”). In the piece, I recalled an experience with a sales clerk at H&M in Manhattan who persisted in her well-meaning but clueless attempt to help me sign my own credit card slip. Since Let Them Stare was published, several readers have approached me with the same reaction. “Meg, I cannot believe that that type of thing happens to you!” All the time. At its most basic level, even I get it. After all, who ever heard of being able to write with only one finger? Surely I must need an opposing finger to balance a pen! There is also no surprise that the offer to help me, regardless of my capabilities, goes beyond penmanship. For example, I was recently in Washington, D.C. and a taxi driver insisted on not only helping me with my luggage, but even tried to hold my purse to assist. When I said no thanks, he persisted, still wanting to try to help me.
Recently, I couldn’t resist reading the news story of “Clueless” star Alicia Silverstone pre-chewing food for her 10-month-old son, Bear Blu, and then feeding him out of her own mouth like a bird. Hmmm…. I’m pretty sure that if there’s a line to cross from being helpful on the one hand, to being over-the-top nurturing on the other, that may have been it. My own parents could have had their “Silverstone” moment when I was born because no one else in the family had even been born with ectrodactyly and they had no idea if I would be able to do otherwise expected things like walk and write. Instead of trying to do everything for me, my parents allowed me to explore independently how not to bite more than I could chew. I do believe that if they had intervened all the time and tried to proactively help me, I would have emerged as a dependent, overly cautious woman who might actually have believed I needed all the help being offered from strangers!
This week’s blog post is intended to have us all stop and think, even take a breath, before we offer help to another we assume is physically needy or merely looks different from anyone we have ever seen. In fact, if you hold back and observe, you might just be surprised to learn that at times, the greatest way to be supportive or “helpful,” is actually to not help.
I must admit, sometimes I welcome help. For instance, it would have been great if John had noticed me in line behind him at Church and stopped me from accepting the Communion wafer!
It had been an extremely hot summer day. Because the windows were open, I could hear the noisy sounds of taxis and cars racing by. I was with my family in my grandmother’s apartment on 54th street and 3rd Avenue in Manhattan. Although her name was Dorothy, we called my dad’s mother “little grandma.” After all, on a good day, she barely cleared 5 feet. My dad turned to us. “Meg, Peter, Ted, we’re leaving soon.” We were headed to Bloomingdales. My brothers and I had been sitting on my grandmother’s fancy gold-colored sofa. As usual, the plastic that encased the couch remained attached to my legs. As I attempted to stand up, a peeling sensation gripped me as I slowly separated my now marked and sweaty legs from the sofa. Cursing myself for not wearing pants despite the heat, I hoisted myself fully up. While I knew the plastic was put there to protect the couch from dust and spills, I didn’t understand why the little grandma believed that the protective casing was worth it—how could anyone’s fear of a little stain possibly result in their guests having to sit this uncomfortably on their furniture? Although I was now across the room, the imprint of the plastic on the back of my thighs still lingered. Before leaving the apartment, my little grandma grabbed me by my one finger and led me to her room. “Meg, I want to give you money for some underwear.” To her, there was no better expenditure. Forever worried about my being robbed during the five-block excursion to Bloomies, she proceeded to roll a ten-dollar bill into her handkerchief, fastening the cloth with a safety pin. “Here, now put this inside your bra so if you are mugged, no one can steal this money.”
Fear. It rears its ugly head in so many ways. Some fears are harmless yet neurotic, like my little grandma’s. Some fears are innocuous, but personal like constantly looking in a mirror to confirm nothing yellow is hanging out of your nose. Some fears are more substantive but self-contained, like when I am at a beach and I fear people’s reactions when showing my oddly-shaped feet. But then there is the ugliest version of fear: when your anxiety is transferred to another. I find it intriguing that as a mother, my biggest accomplishment will be not helping my children overcome any visible difference or physical challenge. Rather, it will be resisting the temptation to transfer my fears to my offspring.
Although growing up I never fully appreciated it, when it came to raising me, my parents were in a word, fearless. Let’s face it, having the unexpected surprise of having a daughter with only one finger on each hand and one toe on each foot, must have been alarming. Once my mom and dad got past the shock of having me, in raising me they had a choice. Overprotect me or let go and let live.
For example, when she was growing up, my mother was a graceful and talented ballerina. Knowing that dance had given her confidence, she strongly desired that I similarly experience this form of art and expression. But it is easy to imagine any natural reluctance on her part. I didn’t have a chance of fitting into a pair of ballet slippers, and the thought of deliberately putting me on stage meant drawing public attention to my condition.
However, rather than holding me back, my mom not only included me in her 2nd grade dance class, but she also found a way to have a local Pakistani shoe peddler make me special slippers. I loved the class so much that she found small dance bells to wrap around my ankles, and then encouraged me to try bell dancing lessons. By her acts she and my father were setting the tone for my life: Assume you can do anything, despite your fears or anxieties.
And so, I continue to apply these lessons while parenting my own children. Last year, Ethan came home informing me that all the third graders could sign up to play a musical instrument. “Mom, I get to tell the school my top three instrument choices, and then the music teacher will help me choose the best for me.” I like to say that the reason I played trombone was family tradition: my grandfather (“Pappy”) and older brother played it. The reality is that it was the only instrument suited for a one-fingered kid. I began to open my mouth to express my doubts about what Ethan could play other than trombone, but then refrained. Instead, I asked him his choices and he said, “I have already figured it out: Violin, trumpet, and of course trombone, since you, Uncle Peter and Pappy used to play that too!” “Perfect,” I responded. It suddenly occurred to me that it was important I let him explore what might be possible, without my interference.
The following week, Ethan came home practically jumping with excitement. “Mom, guess what? I chose the trombone! Although it was fun trying out the other two instruments, I liked playing the trombone the best, and the music teacher agreed it seemed best suited for me!” There was no discussion between us of any finger-related challenges. “Congratulations honey! If Pappy was still alive, he would be so proud!” We embraced.
Before heading to Bloomies, I snuck into my little grandma’s bathroom, removed the wad of money, and shoved the bills into my pocket. After all, the thought of reaching inside my shirt and bra to pay for my new underwear in public outweighed my little grandma’s fear of my getting robbed. Nevertheless, I looked forward to growing up and hoped to not carry my grandmother’s fears with me.
Although the show, “To Tell the Truth” (CBS) predates me, I remember seeing it when it ran in syndication in the ‘70’s. The show featured a panel of celebrities attempting to correctly identify a person, sworn “to tell the truth”, who had an unusual occupation or experience. The celebrities questioned that person along with two imposters, but they were allowed to lie. The show concluded when the votes were cast, and the host would ask, “Will the real [person] please stand up?” For some reason, I loved this show, and always found its premise both amusing and intriguing. After all, it was the first time I watched someone purposefully lie….with no harm done.
“Please don’t pull it out. PLEASE!” Ethan, Charlie, Savanna and I were recently at their bi-annual check-up at the pediatric dentist. Charlie had already lost several teeth, including one in the front. The other tooth was now quite sharp and hanging by a thread in the center of his mouth. It had even cut his lip overnight. The thought of having anyone unnaturally pull out his tooth provoked sheer terror in our six-year-old son. Charlie’s dentist had already mentioned aloud the possibility of removing the tooth. After seeing his alarmed reaction, he gave me a look that read, “Shall I do it?” I paused, reflecting my own childhood experience. It was around 1976, and I was sitting with my two brothers in the back seat of our brown Chrysler station wagon. “Dad, Mom—look! My front tooth is loose!” I shouted. The next thing I knew, my older brother Peter took one quick glance at my funky grin and said, “I’ll help you out, Meg.” At that, he punched out my tooth with his bare hand. To this day, I am certain that Peter was actually proud of himself for “helping me out.”
“Go ahead,” I told the dentist. Charlie shrieked. “No, Mommy, no!” He began to wriggle in his chair so persistently that it was impossible for the dentist to carry out my instructions. And then it occurred to me. Just a little fib won’t hurt. “Charlie, there is a piece of meat stuck behind your front tooth. Let the dentist take it. That’s probably why your tooth has been stuck in your mouth–the meat got caught in its way.” Charlie sat back in his chair. “Okay,” he said, bracing himself. The dentist proceeded to take the “meat” out and wouldn’t you know it, the tooth came out too. Mission accomplished.
That night, Charlie asked me if there really was a Tooth Fairy. I paused. The day had been rough for him, why start telling him the truth about that now? “Of course there is a Tooth Fairy,” I said outwardly grinning, yet inwardly dreading the day he would learn the truth and resent me for my deception.
Later, I reflected on the morning’s events. Before John and I had any babies, I used to fantasize about how I would dress my kids, but not how I would parent them. Even after we had Charlie, almost three years after Ethan, I never stopped to ponder what kind of fibs I might be tempted to tell them one day. Then we decided to adopt Savanna, and I had to ask myself, when is withholding the truth innocuous, and when is it not? How would we discuss Savanna’s place in our family?
I can count on John’s ten fingers how many times people asked us if we were going to tell her about the fact that she was adopted. In this instance, unlike the Tooth Fairy, I didn’t even consider it a choice. As I wrote in my prior blog post, In the Genes, “Before John and I adopted Savanna in Southern California, we made a conscious decision to ensure that her adoption story from inception would be completely transparent to her; the adoption would be simply part of her greater life story. Having heard horror stories in my time, I was adamant that there would be no surprise waiting for her whenever she reached the right age to hear that news. To do so would be the equivalent of hiding Ethan and Charlie’s hands post birth with mittens until they were at the perfect age to handle hearing about their reduced digits.”
Now that she’s five and a half, John and I continue to discuss Savanna’s special story with her, and with her brothers. I like to tell Savanna that she and I were both so lucky when she was being made in her biological mother’s belly. “Why Mommy?” I turn to her, “Because sweetheart, you were born in beautiful, sunny California, and I didn’t have to gain 35 pounds with you like I did with the boys!” I often thank her for that and she responds proudly,“You’re welcome Mommy!” I am convinced that while John and I could have held off, this particular story was worth letting her know about from the beginning. The best lesson I took from this experience is that while lots of white lies can get you through the day and around awkward topics, the one conversation that always deserves the truth, is the one about who we are.
Charlie arrived home last week, announcing that he was excited for St. Patrick’s Day to arrive. “Why, Charlie? We are not Irish.” “Mom, it doesn’t matter. The Leprechaun will come anyway and bring me a chocolate treat if I write him a letter!” He was visibly excited. Bracing myself, I thought it was time to set the record straight, given we are neither Irish nor Catholic. Recalling an embarrassing moment several years ago when Ethan decided to tell his good friend at school that there was no Santa Claus, I treaded carefully. “Charlie, honey. The Leprechaun is not real. But even if it is, we are not Irish, so it won’t come to visit our house anyway.” “Okay Mom, but I think he is real. I am going to leave my letter for him to come, just in case.” Later that night, John and I chuckled together over the the passionate and friendly letter Charlie had drafted, and I realized something. Just because you choose to tell your kid the truth, doesn’t mean that he or she is willing to accept it. Nevertheless, it was time for Charlie to taste reality and not chocolate. When he woke up on St. Patty’s Day, although the letter was left outside his door, the Leprechaun had skipped the Zucker house.
Eventually, we’ll get to the Tooth Fairy….no harm done.
“Your life can change in an instant. That instant can last forever.”
I was crouched next to my two brothers and our parents in the little room under the stairwell in our house in Urbana, Illinois. The wind was howling loudly but, with no windows, it was impossible to know how much damage and destruction might be occurring from the spinning, funnel-shaped cloud hovering over our neighborhood. That crawl space was typically home to our vacuum cleaner, mops and cleaning supplies. However, the minute the sirens rang, it became my family’s refuge.
Sometimes, if there was adequate warning, we would flee to our neighbors’ basement. On this occasion the storm came too quickly, and time was not on our side. To make it worse, it had been an extremely wet spring, which invariably brought bugs into the crevices of our house. “Argh, Daddy—I think I just felt a cockroach crawl across my foot! I think there’s more than one!” “Meg, shush—I am trying to listen!” He had been relying on his transistor radio for storm updates.
Only minutes prior, my brothers and I had been playing outside in our front-yard. All of a sudden, the wind picked up and the sky turned an eerie shade of green. I have heard that the sky turns that color due to the hail in the thunderstorm that allows more of the green spectrum to get through the clouds. I once asked my friend’s grandfather why the sky changed to such a strange hue. He answered matter-of-factly, “That’s easy. The sky turns green because a twister sucks frogs and grasshoppers into the sky.” Hmmm…..Although this was not our first, nor would it be our last tornado while living in that house, we thankfully never experienced any extensive damage, injury or loss. Other than a lingering fear and disgust of cockroaches, the storm left me unscathed and my body unchanged.
Stephanie Decker, 36, was at home with her two children when her husband texted that a tornado was heading towards their home in Henryville, Indiana. Swiftly, Decker placed blankets over her kids in an effort to protect them. When the brunt of the storm arrived, massive debris began to hit Decker’s back. Instinctively, Decker lay on top of her children to shield them. When the tornado stopped, Decker realized that her legs had been gashed and nearly severed. In the process of saving the lives of both her children, Decker lost both her legs.
And so, Stephanie Decker, who only the day before was presumably consumed with her typical daily mommy routine, now found her life irrevocably altered, changed forever. When interviewed by Matt Lauer on Today just days after the storm, Decker said she was not a hero. Rather, she told Matt, “I was simply a Mother Bear acting on instinct, and the simple title of Mom fits [me] just fine.”
Hero or not, after the press has departed and reality sinks in, Stephanie will begin a very different life. People will inevitably stare when she enters a room. Nearly every day she will be forced to decide how much or how little she wants to deal with people’s questions. Her experience is an important reminder that we all could just as easily be one step away from a life changing experience that makes us different.
In my article, “It’s Okay to Stare” (Parents, December 2011), I encouraged natural curiosity to govern–to let your child embarrass you at the sight of someone that looks different, rather than whisking them away, sending even the unintentional message that difference should be feared. Although I still stand by my advice, Decker’s experience reminds me that when you meet the Meg Zuckers or the Stephanie Deckers of the world, though our unique difference is readily apparent, our individual tales are not. More importantly, I appreciate that not everyone might have had years of experience dealing with public scrutiny, as I have. Not everyone is comfortable or ready to share their story. That said, legs or no legs, beyond the initial national attention, I think Stephanie Decker will welcome natural curiosity and prefer the continued opportunity to tell her story; to be regarded as a “someone,” and not a “something.” I’m confident she will manage perfectly well in her new reality and with her different body. If she doesn’t feel like a hero now, she soon will.
“Am I pretty?” Had I had access to YouTube when I was a young teen, given my insecurities about my physical appearance, I might have been tempted to post my own video asking the same question. In fact, as concerning as it may sound that pre-teen girls are purposely inviting public comment asking this question, I don’t think this type of self-sabotage is anything new. It’s just a different generation, same question.
When I was growing up in Urbana in the ‘80s, aside from my two fingers and two toes, I had another blatant difference—I was a dark brunette while the majority of my friends were blonde. Notwithstanding the fact I had no thumbs, I still managed to stand out like a sore thumb. That was the decade during which “pretty” meant looking like Cheryl Tiegs or Christie Brinkley. As an outsider, I was convinced that being pretty was the key to my happiness; I actually believed having fair hair might help. At one point I even asked my mom if I could die my hair blonde(she refused). To my mother’s dismay, I convinced a friend to put “Sun-In” in my hair, anyway, temporarily turning it a strange shade of orange. That was NOT pretty. In truth, hair color was not my real issue, but it was something I could at least try to control or correct. I wished my self-image issues could have been cured with a few inspirational lessons from tales like Hans Christian Andersen’s “The Ugly Duckling”, but I was a teenage girl with much to learn. I felt like that little homely bird, and could only daydream of growing up into my own version of a beautiful swan.
With no future as a blonde, I searched for other ways to invite compliments. After shedding some pounds during my summer at Interlochen National Music Camp, I discovered there was another option—losing weight. While never heavy, I had been somewhat chubby, especially in my face. As I arrived for Autumn classes at Urbana High School, I basked in the glow of the welcome praise. “Wow, Meg! You look great,” and “Meg, you look so pretty, did you lose weight at camp?” It became a vicious cycle. The more weight I lost, the more approval I received. I continued to diet often, hoping to hear the ultimate compliment: You. Look. Pretty. Those words, whether from friends or strangers, became music to my ears.
One night I was out to dinner with friends on the University of Illinois campus. There, in the restroom, I fainted from weakness. My friends brought me home and despite my strong objection, raised their concerns about my eating habits to my father. That experience was a turning point–definitely another “sliding door” moment in my life. While my weight continued to fluctuate as I matured, my family was now involved and I, fortunately, never developed a serious eating disorder. However, the experience didn’t lead me to abandon my quest to be attractive— which was still the key to deflecting attention from my physical abnormality. That desire followed me for years, until I met my husband, John, who fell in love with me unconditionally.
Fast forward to the present. When I first learned of the “Am I pretty” postings on YouTube, I couldn’t help think of Savanna, our five-year-old daughter. If “pretty” remains the goal, it is up to me to help her define it beyond the boundaries of what a supermodel looks like. Most importantly, somehow I need to make sure she does not learn to define her self-worth by relying on external validation of her appearance.
Just recently, Savanna watched the Red Carpet before the Oscars with me. Pointing at Gwyneth Paltrow, Savanna said, “Mommy, look at how pretty she is!” I nodded, but pointed out Melissa McCarthy to her. “Savanna, isn’t she beautiful?” “Oh yes, Mommy!” I smiled with satisfaction. McCarthy had been nominated for an Academy Award for her portrayal of Megan, the hilarious scene-stealing sister of the groom in “Bridesmaids.” Despite her increasing popularity, McCarthy is a plus-size actress and has had to endure repeated snarky comments about her size. Recently, remarking about her own two daughters, McCarthy told the press, “I want them to be confident, strong, healthy, happy women and I want them to define themselves by their actions and what they do and how they treat other people.” Her words moved me. “You know Savanna, just because someone is pretty, does not mean they are beautiful.” She grinned. Of course, we are just beginning this road together, and I know I already have my work cut out for me. After all, Savanna is growing up a blonde on the East Coast where she’s surrounded by brunettes!
“The most important thing to remember is that you can wear all the greatest clothes and all the greatest shoes, but you’ve got to have a good spirit on the inside. That’s what’s really going to make you look like you’re ready to rock the world.” — Alicia Keys
For those of you who watched me on the Today (NBC) in January and noted my declared love for fashion, it is now time for me to confess something. While there is no question I love a great designer and admittedly ran to my phone last Sunday night to text my best friend Lia about Penelope Cruz’s stunning custom Armani gown, there is a bit more to the story. In truth, I think my love for fashion stems from a place of serious insecurity. Wearing something gorgeous means I have a chance to focus attention on my attire and not my two fingers and small feet. Growing up I truly only remember one special period, one lucky break, where I was intentionally judged solely from the inside out.
1985 Interlochen, Michigan
Carrots with peanut butter. Sounds pretty gross, but with nothing else really appealing, I ate them together often at Interlochen National Music Camp. We weren’t at Interlochen, however, for the dining. Rather, anyone who attended the camp did so for its superior performing arts program. Nestled between two beautiful freshwater lakes in Northwest lower Michigan, my brothers and I attended several wonderful summers in a row. The camp was located in the Midwest, but many kids came from all around the country and from varied backgrounds. Some, like Rain Pryor, had a celebrity parent. Some would later hit it big on Broadway like Anthony Rapp (star of Rent). Kids like Norah Jones and Jewel also passed through Interlochen. But of course, not all of us were the children of celebrities. There were those that were from middle-class families and some that could only come on scholarship, otherwise unable to afford the steep summer tuition.
Although my older brother, Peter, and I had both played trombone in junior high and high school, he had the talent for it and I often sounded like a sick cow. My real talent was voice, honed for years with the assistance of my father who accompanied me on the piano. Although I was admitted to Interlochen on the basis of an audition tape of my singing, I knew I’d have to audition again live upon arrival. I sang for Interlochen’s senior choir director, Melvin Larimer. After hearing me, Larimer smiled, “Why Meg, you have perfect pitch!” I beamed with pride, and was elated when accepted into Interlochen’s “Mixed Choir.”
Each summer at the camp we were treated regularly to visiting performances by famous musicians. My favorite was always Itzhak Perlman, the world’s reining violin virtuoso. The sound from Perlman’s violin on Kresge’s open-air amphitheater was as pure and perfect as anything I had ever heard. In fact, his playing was so inspiring that he motivated me to become a better performer and get the most out of my camp experience.
Recognizing that every camper’s background varied and that fancy clothes and exceptionally groomed appearances might give unfair advantage, Interlochen had a mandatory uniform requirement. Every camper had to wear light blue or white button-down shirts and corduroy bottoms (in the summer). To make it worse, every girl had to wear corduroy knickers instead of pants like the boys. If the uniform sounded hideous, it was!
One day after choir practice, before heading back to my cabin, I asked Director Larimer why the camp forced all of us to wear the same uniform. Looking at me with his warm smile and gentle demeanor, Larimer put his hand on mine and replied, “Meg, we want to judge your performance—what talents you have on the inside, rather than being influenced by anything external.” I was taken aback. Until this moment, I had always experienced life with people invariably focusing on my appearance, at least initially. In response, it had been my mission to have people get past my physical appearance and get to know me. Although I had not yet thought to articulate it, I wanted so desperately to be that “someone,” and not a “something” to strangers. And so, through its mandatory uniform requirement and critique of my vocal ability, Interlochen represented to me a fleeting departure from the world of external judgment.
Clearly the camp and its magic had worked for Itzhak Perlman too. Although he was stricken with polio as a child leaving him partially crippled, when Perlman entered the Kresge stage often using a crutch, the only thing the audience focused on was his music. Not surprisingly, virtually all of my memories of summer at Interlochen are warm and heartfelt. It is also no wonder that one of my favorite snacks is baby carrots dipped in peanut butter!
Years later, I had the privilege of submitting some of my prose to Mr. Perlman. I am pleased to announce that in support of my “Don’t Hide It, Flaunt It” message, he has agreed to write the foreword to the book I am writing.
This post is dedicated in memory of Director Larimer, who passed away in 2008.
When I heard the news that Whitney Houston had died in a bathtub on February 11, 2012, I couldn’t help thinking, “What if she had decided not to take that bath but had just gone to bed instead? Would she still be alive? Pointless speculation, of course. Whitney and her soulful, spiritual, and majestic voice have left us for good. However, as I kept running through all of my “what if’s,” regarding Whitney’s sudden death, I was instantly reminded of an old 1998 film starring Gwyneth Paltrow (as “Helen”) called, “Sliding Doors.” In the film, the plot splits into two parallel universes, based on the two paths Helen’s life could take, depending on whether or not she catches a London underground train. Although the details are irrelevant, the outcome of Helen’s life is dramatically different by having caught the train. The film captured an appealing concept: When do seemingly innocuous occurrences in our lives lead to momentous events?
When I was in my twenties in the ’90’s, right after my long relationship with Randy had ended, I was an absolute mess. Although I had a good job and lived in a great studio apartment on East 86th street in New York City, the happy, carefree me was replaced with a depressed, gloomy young woman. When I was not at work, I cried much of the night, wondering if Randy would ever call. I was desperate to hear from him and for some encouragement that we might to still wind up together. In truth, Randy was, without question, the wrong man for me to spend my life with. However, given my physical abnormality, I did not really believe any other man would be willing to marry me. For all of the many years we were dating, I had refused to acknowledge the flaws in the relationship because I really thought he was my only hope.
I have mentioned in past blog posts that when I am feeling blue I become much more sensitive about my physical difference. Not surprisingly, at this point in time, I was at my lowest. When strangers inevitably stared at me and my two fingers, I absorbed every gaze. This was far beyond any pity-party from my childhood. The feeling of panic that was setting in as I had to contemplate living my life solo was leading me to a breakdown.
And so this was who I was as I ran down the stairs to catch the #6 subway train after work one hot summer day in 1997. Flying down the gray concrete stairs, I could hear the subway doors beginning to slide shut. “Wait!” I shouted. At that moment, a middle-aged man held open the door and I raced in just as the doors slammed behind me. The train was packed and all the seats taken. With my sole finger never securing a strong grip, I wrapped my right arm around the pole to secure my ground. In my depressed state, I did not notice the two teenage girls standing next to me, but they definitely noticed me. Pointing at me, one turned to her friend and then came close to my face. “Look, that girl has no hands. Look how weird she looks.” “Yes I do!” I shouted in anger. “I do have hands!” “No you don’t, you freak.” She began to laugh with her friend, and then pushed me to the ground. Someone kicked me at that point, but in my effort to gather my things, I couldn’t tell who it was. No one in the subway car attempted to help. They all seemed to turn away, hoping not to get involved. At this point, I knew I had to get away. Fortunately, the next subway stop was approaching. Although I was still miles from home, I got off at the14th Street station.
Rather than getting on the next train, I decided to walk home. And then, a gift. With my face by this point covered in a mixture of tears, foundation and mascara, I passed a homeless person. Looking up at me, he asked for change. At that moment, I felt a strong desire to help him. As I dropped $20 into his hands, he stared not at my fingers, but at me. “You are a beautiful angel. May you be blessed and have a wonderful day.” In his eyes, I could tell that he believed that I was clearly a fortunate person, regardless of my outer shell. I walked away feeling humbled. The experience took me back to memories of living in Cairo, Egypt. There I would walk to school with my brothers, and nearby was a garbage dump locals called, “Garbage City.” Garbage City was where families lived when they had nowhere else to go. The alternative was another place I had never seen but heard about called, “City of the Dead,” where some families lived in a cemetery.
It was at this very moment that I decided to not only face, but for the first time, really move past my fears of not finding a man who would want to commit. Somehow, I needed to learn to love myself. After all, I had been blessed with so much, how selfish of me to walk this earth feeling sorry for myself? Even even with my physical difference, I had so much to be grateful for. Being single had to be okay, if that was my destiny. And more importantly, I did not have to let myself be drowned in the judgments and perceptions of others. That was my choice, no matter the experience.
Within three months time I would meet John, and for the first time in my life, I was truly ready. After all, how could I expect anyone else to love me unconditionally, if I had not yet begun to accept myself? I was not fully there yet, but I was finally on track. Thank goodness I made the #6 train–that was instrumental in changing my outlook on my life. For years I tried my best to not question “what if” I had not. I suppose Whitney captured it best: “Learning to love yourself is the greatest love of all.”
John and I met in October 1997. By the time Valentine’s Day rolled around in 1998, we had been dating less than six months. Even though our relationship was still in its infancy, we had a very strong connection and attraction, and I knew that we were already light-years ahead of any prior relationship I had been in. As much as John was falling for me, we often joke that what sealed the deal for him was my lack of expectation of chocolate, flowers or gifts on Valentine’s Day. Don’t get me wrong…I LOVE all those things! But having grown up many years in the Middle East where the holiday was not celebrated, back in the States I always found it forced. Instead, I preferred the unexpected attention, at a moment that was naturally inspired.
To celebrate my relationship with my husband, I thought I would share something written by John awhile back in support of my book project. It is a reflection on the period we met, and provides depth and insight into what kind of man is willing to take a chance on, and even fully commit to an imperfect girl.
In October of ’97, I found myself in perhaps the most unusual circumstance of my life. At 31, I had earned a law degree, traveled widely, taught English in a newly liberated eastern European country, served nearly four years in the office of a U.S. Congressman and dated a variety of women during those experiences, but never had I met anyone like Meg.
I had moved to New York City from Washington, D.C. that summer in anticipation of starting a new job at a non-profit, civil rights organization. I was thrilled to finally live in New York City, a place that I visited millions of times from my home state of New Jersey, but had never been my own. It seemed as if everyone I knew, and certainly everyone my parents knew, was giving me phone numbers of eligible women in the city. I had a full social schedule almost from the moment I arrived. Nevertheless, something was different about this latest chapter in my life. I was turning a page and choosing to be less casual and reckless about dating. Dating was still fun, but a new seriousness of purpose seemed to enter my consciousness.
After only a few months of dating in New York, I learned that my childhood friend, Beth, wanted to set me up with a woman named Meg. They would both be at my family’s synagogue in New Jersey over the High Holy Days celebrations in October. My brother Mat had known Meg and her previous boyfriend, Randy, and he really liked her. We were introduced in the synagogue just as people were filing into the sanctuary before services began. I remember being struck by her raven hair, dark eyes and wide smile on a square jaw. She was one of the prettiest women I had ever seen. Then I noticed her forearms were shortened and she had basically a single finger where a palm and five fingers would have been. She wasn’t the first person I had seen with abnormal limbs, but still I found myself confused. I knew I found her attractive and appealing, especially her outgoing nature. But I didn’t know if I wanted to put aside her physical differences and try to get to know her. Why should I? Wouldn’t this relationship be more difficult than the typical story? It’s not like I wasn’t meeting as many women as I wanted. I sat through services that night trying to focus on the Yom Kippur theme of repentance, but my mind, and eyes, kept drifting up a few rows to Meg. Later I told a friend that I was supposed to repent for my sins that night, but I met Meg and started dreaming up new ones.
At the end of the holiday, we found ourselves at my aunt’s house, chatting together undisturbed in the kitchen. I remember finding myself deeply interested in our easy conversation, trying to be funny and impress her even as I fell into her eyes. Then I would notice her arms and hands and feel confused again about whether to pursue this.
Meg likes to remind me that after the holiday, I would call her and we’d have long talks, but I wouldn’t ask her out. After a few of these calls she basically stopped me and asked me if I was going to ask her out because, if not, she had enough friends. I was impressed by her self-confidence even though I didn’t like having a mirror shown to my face forcing me to think about my preconceptions and shallowness. I realized then that because of her strength, confidence, personality and beauty, as well as our common backgrounds, she was someone I really wanted to date.
After our first couple of dates, Meg invited me to her apartment on the East side. As I rode the elevator, I wondered about how she lived on her own. Everything about her screamed independent, professional woman. Yet, I was an exceptionally practical, pragmatic person who couldn’t help but think about the mechanical nature of most things. When I ride an elevator, I think about how it was designed. When I’m in a kitchen, I notice the layout and the plumbing. And when something breaks or malfunctions, I pride myself on being able to fix it. With Meg, I wondered how she functioned on her own? In essence, what does someone do with the routine problems of everyday life when they aren’t as mechanically capable as, say, I am? I entered the apartment and found it to be stylish and appealing. There was nothing different about how she lived. I felt dumb for thinking it could be otherwise. In Meg’s life, if something broke you called the superintendent. The same was true for about four million other New Yorkers who rented their apartments. Duh. Meg treated me to a home cooked meal. She was a talented and creative cook. I soon understood that she had figured out how to do everything she needed to do. Her solutions were always uniquely suited to her two-fingered abilities, but they got the job done. It wasn’t long before I stopped noticing how she did things and just accepted that she knew what she was doing.
The thing about dating Meg was, well, it just felt so easy. I really wasn’t experienced in long relationships, but I had dated enough to have learned that if it’s difficult in the beginning, it won’t be getting any easier. While dating Meg, I kept the three-month rule in my head that I had learned from a friend and my own experience. It says, basically, during the first three months of any new relationship, both parties wear rose-colored glasses and see each other as they want and hope the other to be. After three months, routines start to set in, the parties try less hard to hide their flaws, and each person can see the other more clearly. At that point, the relationship either turns rocky and starts to dive, or it builds on its strengths and just gets better and better. In the former case, cut your losses and get out. In the latter case, you may have found your spouse. It’s not a hard and fast rule, I suppose, but with Meg, I found that we just got better and better together.
We laughed easily and settled on restaurant choices and getaway plans as if we had been planning together for years. Our attraction to each other was powerful. I couldn’t find the flaws and I stopped looking. I decided then that “easy,” if it included passion and attraction, was really what a good relationship was supposed to be. I knew I had lucked out.
One might think I gave some thought to how my friends or colleagues would perceive my choice of companion, but I honestly don’t think I ever dwelt on it. Inevitably, when it was time to introduce Meg to someone important in my life whom she had never met, a slight worry would enter my mind that my friend might react surprised or, worse, awkwardly, to seeing Meg for the first time. The thing is, I don’t think I ever discussed Meg’s appearance ahead of time with anyone. If I tried to alert someone in advance, it would seem like I have a problem with it or that I didn’t trust them enough to be mature. Frankly, I couldn’t be bothered. My approach turned out to be correct because all of my friends quickly moved past their surprise and engaged Meg as they would any woman foolish enough to date me. In fact, after spending an evening with Meg and me, one of my oldest and dearest friends, Karen, pulled me aside and whispered to me a command that only she had the authority to issue, “Don’t screw this one up.” I took her words to heart.
Although today we look back together and laugh (sometimes I grimace), one of the reasons I thought my relationship with Meg was so easy was due to my own naiveté. At some point in the first weeks of dating, Meg and I were sitting on her couch talking a bit about how she lived her life looking so differently and she decided to enlighten me with one of her life lessons. She explained with complete seriousness that she was truly different than other women of her age and situation because, she said, “I’ve had to deal with everything you can imagine and now, finally, I have no more issues.” Had I heard correctly? Was I dating a woman with no issues? Clearly, she wasn’t a needy girlfriend. In fact, not only had she nearly blown me off for my delays in making the first date, but when I had told her I wanted us to date each other exclusively, she had balked. She had just come off a five-plus year relationship and wanted some time to play the field. I was really the more desperate of the two. So here I was, dating a woman who I really liked, who had a great career, who wasn’t pushing me to get more serious, and who had dealt with so much already in her life that she had no issues. The concept was so awesome to my 31-year old mind that I figured it had to be worth at least eight other fingers, maybe more!
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Christopher Reeve
When I was a child living in Illinois, my older brother, Peter, and I always eagerly awaited Saturday mornings. We’d be up at 6am, while it was still dark outside, and race in our “footie” pajamas to the family room. Our baby brother, Ted, would be in his crib and the rest of the house silent. I’d climb under a blanket on our comfy couch while Peter would adjust the antennae attached to the TV and shift the knob to find the morning’s cartoon line up. With only four channels to choose from back in the 20th century, it wasn’t hard to find our favorite show “The Super Friends.”
Based on the “Justice League of America” and associated comic book characters, Peter and I were mesmerized by episode after episode of animated shorts featuring our preferred heroes. Not surprisingly, mine was “Wonder Woman” and Peter’s was “Superman.” Each episode began with heroes responding to an emergency (think natural disaster or aliens) and the Super Friends would come to the rescue. This experience represented my first introduction to the concept of a hero.
This past weekend John, the kids and I watched the Giants v Patriots Superbowl game with many friends. Coming from the New York area, the majority of boys (and some dads) were decked out in Giants attire. Ethan proudly sported his own blue and white “Manning” jersey. I noted that he clearly regarded Eli Manning, who was named Most Valuable Player, as a hero.
What qualifies someone to be considered a hero? Beyond a six-year-old’s love for Batman, Wonder Woman or Aquaman, and winning the Superbowl, how can we identify the heroes among us? Webster’s dictionary defines a hero as:
(i) “A mythological figure or warrior endowed with great strength or ability.” Super Friends clearly are covered;
(ii) a man admired for his achievements and noble qualities. Manning is clearly covered.
But fortunately, given the impractical aspect of becoming a mythological figure and the remote possibility of becoming MVP of a Superbowl, Webster’s came through with one final alternative:
(iii) One that shows great courage.
Last week I came across a family that “liked” my “Don’t Hide It, Flaunt It” page on Facebook. Zach Hamm was born in Texas in 2003 with a condition known as ectodermal dysplasia. As a result of his condition, Zach was born with one toe on his right foot, two on his left, in addition to some other finger, rib, teeth and sweat gland abnormalities. Despite his condition and having had to undergo multiple corrective surgeries, as described on his own site(www.dontsweatitgolf.com), Zach is an excellent student and loves to play baseball and golf. In fact, Zach has played in over 30 golf tournaments winning 8 times. He’s an amazing kid in his own right and proves it again and again with an annual golf event he initiated: the “Don’t Sweat It Gold Classic” to help other kids affected by his condition. At the bottom of the Zach’s website, he lists his own heroes. They included everyone from his Dad, to athletes and his doctors. One thing that caught my attention was that beneath the list of Zach’s heroes, it states, “These are all people that I know and respect.”
There is no doubt that Zach meets the true definition of a hero, and in my opinion, can give even the greatest sports greats a run for their money. But Zach’s site got me thinking. While it is fun and fine for Ethan, Charlie and Savanna to have heroes they have never met and only admire based on ability or accomplishment, it is important for them to acknowledge people who not only are brave and courageous, but are also people that they actually know.
As for me, who are my own personal heroes? I definitely have a cherished list of people I have known personally and admired from afar. But the first ones who will always come to my mind are two in particular who have stood by my side despite the years of stares and judgment directed at their sister–the little boy running down the stairs in his PJ’s to watch the Super Friends and the other little boy who slept in his crib.
Just to set the record straight, I haven’t always embodied my mantra, “Don’t Hide It, Flaunt It.” Rather, it took me years to get here. Although I was generally a happy kid, I always aimed to blend in so that my two fingers and two toes never defined me. It would have worked better if I had lived in a bubble. But I didn’t, of course. As I mentioned in my December 2011 article in Parents magazine, I didn’t mind people’s questions when they emanated from natural curiosity. “Why do your fingers look like that?” “Why do you have two fingers?” “Why are your shoes so small?” As a young child I even heard, “Meg, will you grow more fingers when you are older?” That one actually prompted me to check-in with my father, just in case. Given my experience, my standard and simple reply was invariably, “I was born this way.” Then I’d try to change the topic. “Oh, I was just born like that, but more importantly, I love your [hair, outfit, smile, or just fill in the blank with anything...]. However, on what I considered a bad day, when the stares or whispered comments just seemed too much, I would feel the pain physically, not just emotionally. A look of pity or awkward pointing in my direction would produce a stabbing feeling. Not deep enough to do major damage, but painful nevertheless.
On the worst days, which were mercifully rare, I would go in my room, plant my face into my pillow, and cry my eyes out. I remember on one occasion my parents following me into my room as I shouted, “It’s just not fair! It’s not fair that I am the only one whose hands and feet look different from everyone else. Even Peter and Ted have ten fingers and ten toes!” While he was always supportive and sympathetic, my dad used to refer to these outbursts as my “pity parties.” On that occasion, my mom rubbed my back and offered her thoughts which stayed with me. “Meggie, life isn’t fair. That’s the truth for all of us, no matter what we look like. Someday you will understand that. Your brothers will need too as well. Believe it or not, I see kids that are really shy and who clearly envy how naturally social you are. I bet they believe it’s unfair that they cannot interact with others as easily as you can. Expecting total fairness for yourself in this world can only lead to unrealistic disappointment. You’re going to have to accept your lot in life and make the most of it. It’s not a punishment. Quite the opposite, you’ll learn to thrive because of it. My darling Meggie—we all eventually need to learn this lesson. Not just you.” Although I heard my mom, I was not yet mature enough to absorb her words.
Years later I’m still wondering, if life is unfair, what can we do? It’s always easy to take the path of the pity party, – anger, resentment, embarrassment, and in its simplest form —the notion of “why me?” But thankfully that isn’t our only option. Consider Samantha Garvey, an eighteen-year-old from Long Island, New York. Samantha is an aspiring marine biologist. Unexpectedly last year, both of Samantha’s parents were seriously injured in a car accident. As a result, her parents could no longer work and the Garvey family fell behind in their rent and became homeless. Talk about unfair. Samantha didn’t opt for a pity party. Rather, she gained national attention last month competing for a $100,000 national science prize while attending school and simultaneously living in a shelter with her family. As part of an outpouring of support in response to Samantha’s story, she was invited to Washington, D.C. to watch President Obama’s State of the Union address and people donated money so she and her family could secure a home.
These days I wonder whether or when my children will be tempted to indulge in their own pity parties. Admittedly, I am surprised that there have been few to date, but I am waiting. In fact, I thought Charlie was about to crack last week. As I was putting him to bed, he said, Mom, “It’s not fair!” Here it comes I thought. “What honey, what’s not fair?” “It’s not fair that you got to be on the Chit Chat Live radio show this week, and we only got to be on the TV show!” I smiled and said, “Charlie, life is unfair.” I got off easy that time, but I know all three of them will come back with their own versions of “life isn’t fair” and it may not have anything to do with fingers or adoption. But I am confident they’ll get through it, just like I have.
After all, if life is unfair to everyone, doesn’t that seem fair?
For those of you familiar with the 1970’s sitcom, “All in the Family,” you can’t forget watching the bigoted Archie Bunker repeatedly mock his son-in law, Mike Stivik, (aka “Meathead”) for everything from his Polish ethnicity to his long-haired hippie appearance. Archie was relentless. The day I can’t forget, though, is when I was watching one of Archie’s hurtful rants and felt my stomach churn. It suddenly dawned on me that even if I was ever lucky enough to find a life-partner, I could still be rejected by his family.
I was sitting in a Chinese restaurant with Julian (name changed to protect the innocent), on the Upper East Side of Manhattan. Julian and I had been dating for six months or so, and he thought it was time that I met his parents. I wasn’t necessarily “in love,” but we clicked pretty well. As we waited for his parents to arrive, I munched nervously on the fried crunchy noodles. When Julian’s parents approached us, I smiled at his father, and offered his mom a hug. Initially, the conversation seemed to go smoothly, and I relaxed. Then Julian got up to go to the bathroom. Left alone with his parents, I leveraged an old trick from my childhood: I began to ask them many questions about themselves, hoping to focus attention on them and in the process make them even more comfortable with me. Julian’s mom had something else in mind. She turned to me, looking directly in my eyes with a serious stare. “Meg, I am not sure where things are going with you and Julian, but as you know, his brother was born with mental challenges. [pause] And, given your own genetic mishap, a combination of gene pools is probably best not explored, if you know what I mean.” Fighting back tears I said, “Yes, I know what you mean.” When Julian returned, it was clear I was troubled, but I kept quiet for the rest of the meal. Still shaken, I raised the conversation later that night. Julian handled the topic awkwardly, clearly trying to not prolong it. Our relationship lasted only a week after that dinner.
I was sitting in my boyfriend Randy’s (another name change for the somewhat innocent) parents’ house down South. It was my first visit to meet them. Unlike Julian, Randy and I had been dating for a long time, and I was in love. To me, Randy was “the one.” We had flown down the night before. Always an early riser, I came into the kitchen to see if I could help Randy’s mom with breakfast. Randy was still sleeping, and his father and sister were out together getting bagels for all of us. As we began to set the table, she turned to me. I recognized the serious gaze. “Meg, you do realize that men in our family don’t get married young. There is no use waiting around for Randy. He won’t be available to you for a very long time, if ever. Do you know what I mean?” “Yes,” I replied weakly. “I know what you mean.” When Randy emerged from his bedroom, I felt sick to my stomach and excused myself from breakfast. Unlike Julian, Randy tried to console me when I recanted my conversation with his mom. “Don’t worry Meg. You know I love you. My mom is right that I am not trying to rush into marriage, but that has nothing to do with the way you were born.” We dated for another year, but eventually he broke up with me.
I met John in October. I had known his brother, Mat, through mutual friends and had even met his parents before. But that was another time, and back when I was dating Randy. This time was different. After eight months of dating, attending family events with me, and inviting me to meet everyone in his life, John discreetly approached his parents to let them know he wanted to give me the engagement ring that had been his grandmother’s. What were they thinking at that moment? Who knows? Who cares. What matters is what they said and did afterward. They stood and embraced him and shared their love and joy at his decision. A short time later, after John proposed, his parents could finally tell me that they knew it was coming and had been dying to finally begin the conversation about wedding dates, locations, and, as is most important to John’s father, the menu! His mom said, “Meg, I cannot wait to see what dress you select. You are going to be a beautiful bride! We are so happy to welcome you into our family!” I knew what she meant.
There will be a lot more from my dating years in the book I am writing. However, this post is dedicated to my husband John’s family. From the minute I entered their lives as John’s girlfriend, his fiancée, and eventually his wife, John’s parents, Lenny and Leslie Zucker, his brother Mat Zucker and sister Liz Zucker Barnett, as well as all their immediate relatives, have treated me as a someone, rather than a something. My gratitude for their love and unconditional support of our relationship, and of me personally, goes deeper than anything I could possibly articulate. A few months ago I wrote a post titled, “Homage to my Parents.” To be clear—that homage extends also to my in-laws, and to Mat and Liz. Meeting them, being unconditionally embraced by a second family when some others would not give me a chance, has been like winning the lottery, at least from my vantage. After meeting John and his family, I just smile to myself and think, now “THOSE were the days.” Archie and his wife Edith couldn’t have sung it any sweeter.
Now that I’ve confessed my fashion obsession on national TV, it won’t surprise you to learn I watched the Golden Globes this past weekend as much for the red carpet couture as for the winners and losers. And I was looking forward to an untamed Ricky Gervais. While not everyone is a fan or is ready to embrace his style as an equal opportunity offender, I like the guy. Those who are the objects of his jokes and protest with hurt feelings might even do well to drink from my “What You Think of Me is None of My Business” Kool-Aid.
More recently, Gervais and a partner developed a new sitcom, “Life’s Too Short” starring the diminutive actor, Warwick Davis. Once again, Gervais has been put on the defensive, this time explaining why the sitcom is not offensive despite its humorous take on the life of a showbiz dwarf. According to a recent interview with Gervais, “People are already saying ‘Controversial new comedy,’ or, ‘Cruel comedy,’ why do they say that? Is it because there’s a dwarf involved, in which case the prejudice is theirs, they’re thinking it has to be cruel because there’s a dwarf, so we have to be making jokes about dwarves? It couldn’t be further from the truth.”
I suspect that the people that are truly offended by the idea of this new sitcom are the same people that are simply uncomfortable with the idea of difference. They think anytime anyone laughs at a joke about a person with any type of difference or even disability the joke must be on them, rather than with them. As anyone knows who has been reading this blog, I strongly believe that the ability to laugh at oneself is an important key toward total self-acceptance. The reality is that once one has achieved the ability to laugh at oneself, it’s absolutely fantastic when people laugh with us.
Now, I recognize that Hollywood being what it is, my fantasy acting career would not exactly have found many roles for the two–fingered likes of me. But what if I had gone to L.A. to seek my fortune on the silver screen? Here’s my pitch:
- If I had been cast as the clown fish Marlon, Nemo’s dad, in “Finding Nemo,” (2003) I would have not been as overprotective, and Nemo would never would have run away
- If I had been cast as the prima ballerina in the “Red Shoes” (1948), what would happen when a demonic shoemaker offered me red ballet point shoes which once on, would force me to keep dancing until death? I would have not have been tempted; the red shoes simply could never have fit my feet
- If I had been cast as the abominable snowman in “Rudolph the Red Nosed Reindeer,” (1964) then rather than fearing me, Rudolph and Hermie would have welcomed me to the Island of Misfits
- If I had been cast as Roy Neary’s (Richard Dreyfus) wife in “Close Encounters of the Third Kind (1977), he would not have been so undeniably drawn to the wilderness to find something spectacular in his marriage. Rather, he would have been consumed with the ride being married to me, and we would have saved money on mashed potatoes at the grocery store
- If I had been cast as Sandy in Grease (1977), I would not have had to transform myself to try and please Danny. Rather, as the man that wanted to date me, he would have liked me unconditionally from the start
And so, as I watched Gervais poke fun at his gorgeous and talented audience this past Sunday, today as I celebrate my birthday, I am once again more than happy to poke fun at myself. More importantly, as the show drew to a close, I was delighted to see Peter Dinklage, a dwarf, win a Golden Globe for best supporting actor in his role in HBO’s “The Game of Thrones.” With the Golden Globes behind us, we can turn our attention to what’s next in the world of showbiz. Will someone be adorned with an item that will knock my socks off at this year’s Oscar’s? Will Gervais be invited back again in 2013 to host the Golden Globes? Even more important, how might Dinklage’s accomplishment and Gervais’ new sitcom impact the entertainment industry long term? Looking forward to finding out. Perhaps there might even be a role for the likes of me…..
What does it take to prepare oneself to speak in front of millions of people? I realize many people never face such a prospect and most decline to speak before even a small audience. I learned recently that the notion of such a presentation must be extremely intimidating to many because the most common question I received after my appearance on Today was, “You seem so relaxed Meg. Weren’t you nervous speaking in front of so many people?”
What a difference a week can make. Last week I was on Today. This week? Jury duty. All lawyers (including this one) share a secret fantasy about jury duty. We imagine that the minute we arrive to the courthouse, we would announce that we are practicing attorneys and the court clerk would respond with apologetic surprise, “Well, why didn’t you let us know that before making the effort to come? We will be happy to excuse you immediately.” Alas, the reality is somewhat different.
And so, as I sat with a crowd of similarly summoned people listening to the Assignment Judge welcome us all to our civic duty, something in her speech got me thinking: “I know that receiving a juror request notice is only slightly better than receiving a bill after the holidays, and that unlike your typical routine, the obligation to be here is out of your control, so you might as well make the most of it….”
There was that word: CONTROL. I had always thought that the notion of having control was the equivalent of having freedom: I could choose what friends I wanted, the schools I wanted to apply to, the profession I wished to have, and the town in which I wished to live. Having control meant also that I could hide my hands in my pockets or shove them behind my back before taking a photo.
But somewhere along the way, I realized when it came to how others viewed me, I didn’t feel free. I couldn’t control others. I couldn’t make someone date me who wasn’t interested, couldn’t deflect the stares, and certainly couldn’t stop others from taking one look and pitying me. Sometimes I used to believe that if I stared back at someone intensely, I could somehow force them to turn their attention away from me. How ridiculously naïve! One thing was certain. I realized that the more I cared what others thought of me, the more miserable I became. During this period I was asked to run some live training sessions at work for the first time. Not surprisingly, I crumbled, painfully consumed with how I was being perceived by the very co-workers I was supposed to be instructing.
And then one hot and humid summer day, a few years before I met my husband John, I was walking to work in New York City. Two young men were walking together in the other direction, seemingly friends. As they passed me, the taller of the two said in a booming voice, “Hey, Mike. Did you see that girl’s hands? What a freak!” At this point, his friend said, just as loudly, “Yeah, but who cares. She’s really pretty.” I had to duck into a coffee shop nearby and sit down to catch my breath. It was an important, revealing moment for me. I reflected on the exchange, and became newly enlightened. Worrying about what others thought of me was pointless. I am who I am, and no matter what I look like, people will make their own impressions. Without any input from me, even two friends could have polar opposite opinions of me. There was nothing I could do about that; it was out of my control.
From that point on, I changed. I was able to travel the country for work and speak to any group, large or small. I stopped worrying if someone I was meeting was overly focused on my condition. I found my freedom not through control, but by letting go. And when given the incredible opportunity to appear on Today, I could accept because I had long ago let go of being concerned with what others thought of me, two fingers, two toes and all.
The day of the Today interview, as I walked from the Green Room to the studio with Lauren, the NBC producer, at my side, she turned to me and asked, “Meg, how are your nerves, are they in check?” “I am looking forward to this!” I replied with a smile. After all, I knew that the only person I could control once I arrived on that couch was me. “And we are live….” I heard someone say. “Bring it on!” I thought.
Okay, I know that anyone reading this post is probably already aware of my spot on Today (NBC) this past week. While, yes, the title of this blog, “I did it” does reflect my relief and satisfaction at the experience, in fact, I reached a different kind of milestone that day.
What you don’t know is that a week or so prior to the interview, Lauren Sugrue, the fabulous producer at Today requested that I send her a photo of me as a teen. Of course, thinking about my hairstyles in the 1980’s, I cringed at the thought. As John and I began to comb through old photo albums, each teen photo was worse than the next. Finally, John found a picture that he believed to be the best of the bunch. However, with this one, there was something unique. I was wearing a white lacy dress, and the photo captured my entire body, head to toe, without shoes. I initially refused. “John, that one shows my feet. I don’t know if I am ready for that type of exposure to them.” He looked at me and responded softly, “Meg, what does your Don’t Hide It, Flaunt It message mean anyway if you are still embarrassed about your feet?” That was the real “it.” There I was, having to confront it unwillingly.
All my life my shoes have acted as a barrier, shielding me from public eye and judgment. Not that my shoes ever fit so well, but regardless, I have only revealed my very unusual feet to people, even close friends, as a necessity. This insecurity was a long time in the making. I recall hanging out in my college boyfriend’s apartment, never ever removing my socks. Let’s face it, I feared that he would be repulsed at the sight of my feet, and break-up with me instantly. Even after I had my kids, I dreaded the prospect of taking them to the town pool. I have memories of walking in my swimsuit with a long towel draped over my legs, with the hope it would cover my feet as I walked. I am pretty sure I tripped a couple of times for the effort. The beach was only marginally better, where at least I could dig my feet in the sand to avoid attention.
As much as I have been able to overcome my insecurities over the “finger thing,” I have still remained quite self-conscious about the way my feet look, two toes and all. It is not that I necessarily believe that my hands appear more “normal” than my feet. However, given the fact that my feet are typically hidden in shoes, I have been allowed to shelter this aspect of my difference in a way I could never do with my hands. In some respects, I equate it more to those folks whose difference is subtle or not so overt to provoke instant attention from strangers. I’m referring to people who wrestle silently with shyness or anxiety, or who can conceal their dyslexia and don’t wear their difference on their sleeve. Another example came from Rachelle Karls who posted about her son’s attention issues during my recent live Facebook chat on the Today.com Moms Blog. As Rachelle indicated, even if not visible, everyone has “something.” For me, my hidden difference has always been my feet.
So, the day of the Today segment, as I sat on the couch with Dr. Jennifer Hartstein being interviewed by Natalie Morales, I braced myself for the teen photo to flash, feet and all. “I did it!” I thought silently. However, to my surprise in the final video clip, for no special reason other than the editor’s choice of cut, only the top portion of my body was revealed in the photo. My feet were nowhere to be seen! It had taken so much courage and strength to send the photo and let go of my fear of people judging my feet, that at this point, I actually felt a fleeting sense of disappointment right before we went live.
Whether our differences are masked or blatant, I recognize that the road to celebration of one’s own unique traits is not a cake-walk. In fact, progress often comes in baby steps. But the good news is, once you have truly crossed the line and are prepared to embrace your difference, you discover a new sense of freedom. You may not even want to turn back.
Then we grow up and we begin to absorb rather than deflect how others see us. If we are fortunate, we learn how to cope and just maybe grow stronger, but it’s not easy.
As we close out the year, I choose to highlight some individuals who have learned not to hide, but rather flaunt whatever difference may cause others to judge them (or their children):
- Oscar Pistorius: “You are not disabled by the disabilities you have. You are abled by the abilities you have.” In 2011, Pistorius became the new face (and body) of A* Men fragrance by Thierry Mugler, and was named GQ’s 2011 “Best Dressed Man.” Pistorius lost his legs at eleven months old, and ultimately learned a different way of mastering balance through competition. He not only won several medals at the 2004 Paralympic Games in Athens, he has since become a triple world record holder and triple Paralympic Champion in the 100, 200 and 400 meter races.
- Andrea Gormley: “Acceptance is a very big issue for me. I try to teach my children that no matter what color someone is or how they look, we are all people and have feelings. My daughter once asked my hubby & I why she was tan and Daddy & Mommy were different colors. I told her everyone is like a different flavor of ice-cream. Some have nuts or jimmies, and sometimes you get an unexpected chocolate chip in the plain, but that’s what makes it awesome! When she sees someone different from her and has questions, I encourage her to talk to them and remind her of the ice cream scenario. ” Via Parents Magazine’s Facebook page in response to my article, “It’s Okay to Stare” in Parents, when giving advice to her own daughter when people stared at her different skin color.
- Megyn Kelly: Kelly is part of a new generation of TV anchors that have juggled their careers and family life in a way that their female predecessors did not. As recognized in a recent NY Times article: “Rather than hide their pregnancies, they flaunt them; rather than cover up their off-hours role as mothers, they turn it into part of their on-air persona.” Kelly is a Fox news anchor who was told in the past, “You’re going to need to choose: you can either have a family or you can be a major anchor.”
- Matthew Sapolin: Sapolin was the captain of his high school wrestling team in Islip, N.Y., the town where he was born. He went on to be co-captain of the wrestling team at New York University and was profiled in Sports Illustrated when he had the Division III nationals within reach, competing against sighted wrestlers. Sapolin went on to become New York City’s inaugural Commissioner of the Mayor’s Office for People With Disabilities. An early bout with cancer at age five left Sapolin blind for the remainder of his life, but it did not hinder him. Many who knew him explain that Sapolin’s blindness did not narrow his life — “He was informed by it.” I had the privilege of meeting Matthew Sapolin recently, and he was a great supporter of my Don’t Hide it, Flaunt It message. Matthew passed away from cancer on Tuesday, November 29, 2011 at the age of 41.
- Nick Newell: “It’s more of a message I’d like to send, that if you have a goal, go out and do it. Try it, whether it’s fighting or something else. Whether you want to be the best at your job, or at sports, just do your best. Give it everything you have. Winning is very important to me, but at the end of the day, even if I lose, as long as I know I gave it everything I had, there’s no shame in that.” Nick is a professional American mixed martial artist. He is well known for being an one-armed fighter, with his left arm ending just after the elbow. Nick describes his early MMA career as a struggle, not because he could not win (he is currently undefeated), but because other fighters did not want to fight a one armed fighter.
- Jyoti Amge: An eighteen-year-old Indian student measuring just 62.8 centimeters (less than 2ft, one inch), Amge was confirmed in 2011 as the world’s shortest living woman, according to the Guinness Book of World Records. Amge’s goal in life? She has expressed hopes of becoming a Bollywood actress and loves that her height will set her apart from the other hopeful actors. Amge, who has a form of dwarfism called achondroplasia, is a high school student and just finished her final exams.
- JR Martinez: Iraqi War veteran turned actor who won 1st place in ABC’s “Dancing with the Stars” in the Fall of 2011. “What really made me sign-on to the show was the fact that I wanted to step outside of my comfort zone. That’s how we grow and continue learning; that’s how we create those memories that we’ll never forget.” In 2003, JR was badly injured when his truck ran over a landmine leaving him with burns on over 40 percent of his body. In addition, due to the explosion JR lost most of the hair on his head and one of his ears.
Happy New Year!
Remember the first time you watched A Christmas Carol, by Charles Dickens? I was particularly taken with The Ghost of Christmas Past, who was the first of three spirits that haunted Ebenezer Scrooge. In the story, the Ghost of Christmas Past took Scrooge around in a robe, showing him scenes from his past that occurred on or around Christmas. Her goal? To help him repent for behavior he should now regret, and hopefully change his ways.
There is nothing more exhilarating than running downstairs Christmas morning as a child, anxious to find mounds of presents at the foot of an illuminated Christmas tree. It’s a powerful image–all the silver and gold strewn around the tree, ornaments that have their own sentimental meaning, all the shiny wrapping paper with glossy colored bows, and of course the brilliant gold star perched at the top of the tree. Like many, I have had this experience…..although for me, only once.
Islamabad, Pakistan 1976 (Christmas Morning)
It was approximately 5:00am. My younger brother Teddy (at the time, age 4) tapped me on the shoulder. “Meggie, is it time? Is it time yet to open our presents?” He was literally jumping up and down. We were in our house in Islamabad, staying with family friends Spiro and Carol, while my parents were off on a trip for a few days to India with our older brother Peter. Not knowing the time, but too excited for words, I reached for the only ones that came to mind, “Let’s go!” We raced downstairs to the glowing tree. With the exception of Ted and me, the house was quiet. Looking up at me hopefully, Teddy asked, “Meggie, can we open them?” Born and raised Jewish, we had no experience with the holiday, other than seeing kids happily running down the stairs in the movies. “I don’t see why not?” I responded eagerly.
At that point we both tore into every present, plowing through them indiscriminately. Admittedly, it was a blast, at least until Spiro came down the stairs, rubbing his eyes. “What in the world is going on down here?” he asked. As he put on his glasses and saw the picture of the Christmas they hoped to share with us demolished, he sat down and did not say anything. Rather, looking very solemn, Spiro explained that opening Christmas presents is typically a wonderful moment shared all together. Unbeknownst to us, we had ruined that moment for both Spiro and wife. This memory captures the first time I recall feeling remorse.
Today, I sometimes still think about the Ghost of Christmas Past. What if she showed up in the middle of the night now to show me scenes from my own life; behavior that I regret? She surely would bring me to that morning in Pakistan. But I know there would be other scenes, like the time at around age ten that I refused to open the door on a boy that wanted to play with my brother Peter and me because I thought he was too nerdy; the day that I saw my first dwarf and, to her discomfort, couldn’t stop staring; and the period when I intentionally covered my infant son’s entire body with his blanket so that I could avoid strangers’ awkward reactions to seeing his hands. Believe me, back then, I was not ready to flaunt anything.
This Holiday season, it might be worth reflecting on what scenes that Ghost might take each of us to revisit in our own lives. And most importantly, consider how we have (or have not) grown since those days. Just like Scrooge, we have the power to change what is yet to come.
Happy Holidays from my family to yours.
When I was pregnant with Ethan I often stressed about every aspect of what could possibly go wrong before delivery. At the time, I even remember cursing the person that wrote, “What To Expect When You are Expecting.” One day near the end of my pregnancy, my sister-in-law, Liz, (who already had two children) said to me, “Meg, you think this period is stressful? Just you wait! The real fun happens AFTER they are born and you have to parent them through all the ups and downs!”
September 11, 2008
“Let me leave! I want to play with my friends!” Ethan was in 1st grade and on the school playground after lunch. Three 4th graders had surrounded him. Earlier in the cafeteria, they had first noticed him and made loud remarks about his only having two fingers so that all could hear. Apparently, by the time Ethan was on the playground, the boys had their plan. As soon as he walked away from his own friends to get a drink from the fountain, they cornered him. Ethan was surprised and afraid. At that moment, however, his close friend Javier noticed the exchange and intervened, insisting that Ethan come with him. But before they left, ever the loyal friend, Javi turned to the 4th graders and threatened to tell the teacher’s aide. The group disbursed.
Fortunately for us, I can probably count on my own two fingers the number of times Ethan has actually been bullied due to his difference. The day of that event, however, I had been at work and John and I only heard about it after-the-fact from our nanny. I thought to myself silently, “What could I say to my beautiful six-year-old boy?” Although the news had left me deflated, I was thankful for the commute home that day; I needed the time to gather my thoughts. What in the world could I draw upon? I struggled to remember experiencing anything similar from my past. As I sat on the bus, I stared out my window and turned on my iPod. Michael Jackson’s, “Man in the Mirror” began to play. Listening to the chorus, I was charged with a new sense of energy.
Arriving home I entered the house and, as soon as Ethan saw me, the tears started streaming down his pale freckled cheeks like a broken faucet. I brought him into his room, and as we sat on his bed I quietly listened to his description of what happened on the playground. The more he spoke, the harder he cried. After he had taken a few deep breaths, I turned to him. “Ethan, I am so glad Javi helped you out. No one should ever put you in a position that you cannot walk away if you need to. If it happens again, of course you should immediately tell your teacher.”
But I knew I could not leave it simply like that. Here it was—a significant parenting moment. Not simply the daily, “brush your teeth,” or “eat your broccoli.” This felt real to the core. Although inside I still felt a bit queasy at the thought of the kids surrounding him, I gave him a firm smile. “Ethan, take a look in the mirror. What do you see?” Although the tears were still present, he turned to me, then to the mirror hanging on the inside of his closet door. “I see myself and you behind me.” “Do you know what I’m thinking ?” I asked. “No,” he answered. “Can you change what I’m thinking?” I persisted. “No.” He repeated.
“Right now I’m looking at myself and thinking about how proud I am of you and how good I look in this outfit! I know I’m right on both counts. And neither you nor anyone else can change my mind.” He gave me his impatient look that said he knew there was a lesson coming. “While some kids will be naturally curious, other kids may make fun of the fact that you look different than they do, and might even be mean about it like what happened today at school. Kids are going to think what they think and there is nothing you can do about it. Just like you cannot control me and stop me from what I do and think, you are the only person you can actually control. Here’s another fact. Kids that are happy with themselves never bother being mean to other kids. Your goal is to stop trying to make others accept you. I paused. “Ethan, you are the master of your mind and your thoughts—no one else is. Not even daddy or me. Now look in the mirror again and tell me what you see.” Our beautiful son smiled, and for that moment, that was enough for me.
This wouldn’t be our last conversation on the topic, but I knew we were off to a great start. We hugged for a long time at first, and then I turned on our stereo. After all, great music always lifts a mood.
Man in the Mirror
I’m starting with the
man in the mirror
I’m asking him to
change his ways
And no message could
have been any clearer
If you wanna make the
world a better place
Take a look at yourself and make that change
My mother turned to me. “You must not be my little girl because my little girl has the most beautiful brown eyes.” I turned to her with a wide grin. “I have big brown eyes Mommy! “Well, MY little girl has gorgeous long dark brown hair!” Grabbing my hair with both fingers, “Look Mommy, I have long pretty brown hair!” She took a breath. Well, MY little girl is very smart and always smiles a lot!” “I smile a lot Mommy!” Finally, after a long pause she said, “But how can you be my little girl? My little girl has two fingers, one on each hand.” “Me! Me! Me! I have two fingers,” waving each of them high in the air, almost frantically, in her face. “Oh! Then you must be my darling daughter Meggie!” We embraced.
I would ask my mother to play that “game” with me again and again. I never tired of it (although I am certain I often wore my mother out). This was my first experience in feeling pride about my two fingers, my difference.
Last week I was once again given the wonderful opportunity of speaking for the Babybites organization in a telecast to mothers of young children. Heather Ouida, one of the Babybites co-founders, was interviewing me, offering thoughtful questions. At one point, Heather began to ask me about the way my own parents raised me. “Meg, tell us what it was about the way they raised you that resulted in your becoming so confident and positive.” Drawing from my memories and even my recent “Homage to My Parents” blog entry, I advised that, despite all the uncertainty, my parents had both embodied and embraced what I called the Golden Rule for Parenting: “They took a deep breath, gathered their courage, and let me simply be me.”
However, as I rode home from work the other evening, I reflected further. In fact, the support my parents gave to me actually went well beyond that Golden Rule. In playing games like “My Little Girl,” my parents gave me at an early age a feeling of pure self-satisfaction. There is nothing better. It is amazing how these lessons come full circle and I can now try to share those insightful teachings with my own children. I have mentioned in a past blog post that we adopted Savanna, our five-year-old daughter, from birth.
I turned to Savanna. ”You must not be my little girl because my little girl has the most beautiful blue eyes.” I turned to her with a wide grin. “But I have big blue eyes Mommy!” “Well, MY little girl has gorgeous long curly
blond hair!” Grabbing a handful of her golden strands tightly with pride, “Look Mommy, I have pretty blond hair with curls!” I took a breath. “Well, MY little girl is very smart and always smiles a lot!” “I smile a lot Mommy!” Finally, after a long pause I said, “But how can you be my little girl? My little girl grew in Nicki’s belly, was born in California and was adopted.” “Me! Me! Me! I was adopted!” proudly pointing to herself. “Oh! Then you must be my darling daughter Savanna!”
We embraced, and I was asked to play her favorite game again. And again. And again.
A couple of years ago for our anniversary, John and I decided to spend the day in Manhattan together by ourselves. Since having our three children, as close as we live to NYC, it is rare such an outing actually occurs. We even had no blue-print for the day, a true anomaly in our over-planned lives.
As we strolled together after having lunch on the West-Side, we passed by someone in their twenties asking us if we wanted to see David Letterman’s live show. With nothing else to do except figure out what we wanted to do, we happily took the tickets and headed to the studios on Broadway near Times Square.
The day turned out to be more an activity in waiting on lines until the show began. Of course, as with any experience standing in line amid a crowd of strangers, I was not oblivious to a few stares in my direction. Also, to my disappointment, during the show the surprise “big star” for the day was Teri Hatcher (no offense to Ms. Hatcher, but I was hoping for a more memorable interview). Perhaps I was tired from standing for hours, but Letterman’s jokes overall seemed canned and stale. Notwithstanding this, we enjoyed the big moment of the show: Letterman’s “Top 10.”
In honor of our 12thanniversary which we recently celebrated, I have decided to write my own Top 10 list. Come to think of it, what if we all decided to celebrate what makes us special– our own unique “difference” with a personal Top 10? Might we all be one step closer to happiness? Perhaps, perhaps not……but for me, let’s face it. How I see myself and how the world sees me are often at odds. Rather than allow that fact to unravel me, my choice is to continue to have the ability to laugh at myself and ultimately approach life “glass half-full.”
Top Ten Reasons it is Awesome to have Two Fingers
10. People never forget meeting you, ever
9. Airport security will bring you to the front of the security line when you
deserved to miss your flight just like the rest of the schmucks
8. You will be offered ½ price discounted NJ transit fares without even asking
7. People will be unusually impressed with every normal thing you do (“Wow, you can play tennis? Ride a bike? Write? Drive? That is so great Meg!”)
6. There will be a significant savings in manicures
5. The shallow people and jerks will not want to know you
4. You can avoid the Draft
3. You will always be picked last for the heavy lifting
2. You will never be the one chosen in a line-up
And—the #1 reason it is awesome to have two fingers is…….
1. You can flip someone “the bird” without them knowing!
Thanksgiving is known for its celebration of the harvest, but the first Thanksgiving was celebrated to give thanks for safe guidance to the “New World.” In Canada, Thanksgiving is a celebration for surviving a particularly long journey through perils of storms and icebergs. Notwithstanding the historical element, Thanksgiving has often been a special time of the year for me and my family. I got my 1st period (blindsided and completely unprepared at a family friend’s house), I announced that I passed the NY Bar Exam to my family on Turkey Day, and it’s the day that John and I informed our loved ones of our secret that I was pregnant (with Ethan). Thanksgiving has also been a day of sorrow; when I was 24 my grandmother passed away.
This year, the release of my article, “It’s Okay to Stare: What to Do When Someone is Different,” was published by Parents Magazine just in time for the November Holiday. With an understandably long lead time at the magazine, the article was long in coming–in fact I believe I signed the contract last Spring! For months I have been incredibly excited for the piece to be published. The topic of how to help parents deal with their naturally curious kids is important to me both as a parent of extremely inquisitive children, and as the recipient of countless stares directed at me and my children. Overall, through my experience of having two fingers and shoes that never quite fit, I was thrilled to be able to offer people a useful way to approach this very important subject.
However, what I was not anticipating was that I would learn so much this past week from the Facebook blog posts submitted by Parents readers in response to my article. These were real people, with real-life experiences that appeared to share my views, but approached the subject with their own twist, their own insights. For example, I was floored when I read about a woman who wrote that three of her children are biracial, the fourth adopted and that she learned that people have assumed she cheated on her husband with the first three “because he is different.” “Please do not assume, just ask!” she advised about her own story. Then there was the reader whose heart would break every time someone just stared at her son, a four-year-old with Down’s Syndrome. Although her Mama Bear protective nature would attempt to emerge, she realized that by allowing others to naturally engage, her son Oliver’s smile would win them over every time. Another reader chimed in (whose father lost his legs due to a swimming pool accident), “I remember a few moms and dads were embarrassed about their kids asking, but my dad would have [preferred] that they ask him than be scared or stare. The adults were usually worse than the kids usually.” These were all insights from people touched either directly or indirectly, by difference.
One woman, after reading many other posts, advised that she believes people don’t stare because they are afraid, but merely are curious and have a heavy heart for the person. From my life experience, although curiosity is often a factor, I continue to believe that many simply are afraid to have to confront those that are different or feel terribly uncomfortable around those that are. Of course, many who may not fear the confrontation nevertheless still cringe at the thought of their children embarrassing them. This is of course what prompted me to write my piece for Parents.
Despite the fact that this life adventure has been at times rocky for me, this Thanksgiving I give thanks to all the people who have taught me along the way as much, if not more, than I have been able to guide them.
When I was a kid, one of my favorite TV movies was “Rudolph, the Red Nosed Reindeer.” I suppose I identified strongly with Rudolph back then. After all, he wasted a lot of time trying to hide his glowing red nose only to eventually figure out that it was something he would want to flaunt. He even found he could use it to help others. I was just as taken with the relationship between Rudolph and his elf friend, Hermey. Although outwardly Hermey was cute as a button, his “difference,” as he explained to Rudolph, was his strong desire to become a dentist, rather than make toys. In hindsight, Hermey felt tremendous pressure to hide his true self and feared how people would react to him. Initially, both Rudolph and Hermey were bullied into conformity. The two related to each other because of, not despite, their differences. Fortunately, they eventually learned to embrace what set them apart from the rest. Watching the movie was probably one of the first times it occurred to me that someone else seemingly “perfect,” could also consider themselves different, like me.
Since the Scholastic Storyworks magazine article, “The Awesome Powers of Ethan Z,” came out last month, Ethan has been receiving loads of letters from grade school children across the country. I was particularly startled by the kids’ willingness to share their own differences with Ethan, wanting him to know that his message, “I Don’t Care What You Think About Me,” was helping them manage their insecurities. Here are some snippets:
“I really liked your story and I am also different because when I am bullied I do not stand up for myself….in my class there is someone who hates my guts and calls me stupid. Next time she bothers me I would like to try your method……”
”I am different too because I am very sensitive to other people’s feelings and even cry when they cry. When people are rude to me I am going to try not caring what other people think of me. Since it worked for you I am sure it will work for me….”
”I will tell my friends about your method. There is a big bully in our school and we think it will work. Thanks for helping me…”
”I enjoyed reading about you in class. It is amazing the way you act. I hope you understand how great you really are. I am different because people teased me when I was new at camp. I cried. I will now try to be like you and say, “I don’t care what you think about me!” You taught me to be the bigger person.”
“About one week ago someone was hitting, kicking and tackling me, and then threw a football hard in my face. The person said I messed up the game. Later that day we read your Storyworks article and I remembered what you said and later that day I said “I don’t care what you think about me” to the kid and walked away…”
“I am different because I am scared of all fish—even the dead ones! Even though nobody knows it is nothing to tease me about and that should be the same with you…”
“I am different because 3 people in my family have celiac and two have autism. As for me, I have HUGE birthmark on my lip. I like how you can just say, “I don’t care what you think about me,” and mean it….I’ll always remember to practice like you did with your mom so I’ll have awesome powers just like you…”
“I am different because I like different books and music than my friends…I will try your method when the bullies bother me…”
“I am different because I don’t care much about rock stars or looking good or being in fashion. At camp I hung up an Angry Birds poster instead of a Bieber poster and was teased. I will try your method next summer…”
“I am different because my arms are very hairy. I have never seen someone like you, it’s really special. You can do anything, and you make me feel like everyone is different, not just me. I think you are the coolest person I have ever seen…”
“I am different because I have curly, poofy hair and I have celiac disease. Last year someone called me unlucky and made me sad. I cannot wait to use your methods when people bother me about my food.”
“I am different because I am very tall for my age. Some people call me names or try to climb on me. I did what you said and they went away!”
What I loved most of all from our efforts with Scholastic was that the article has prompted kids to not only identify what their difference is, but also begin to appreciate that they cannot control what others think of them. Rather, the kids are concluding, as Ethan advised in the article, “If a person can’t accept you, then they are not a friend. And if that person isn’t a friend, then you shouldn’t care about what that person thinks of you.”
“He was more responsible than anyone else for creating the modern world.”
You may be thinking I am quoting someone describing Steve Jobs. After all, he changed so much about the way we function as a society. In fact, though, one hundred years before Steve was building his first computer in his garage, Thomas Edison gave us the first system for central lighting and heating using electric power. However, did you know that Edison was considered technically deaf? It is true. His hearing loss was attributed to a bout of scarlet fever during his childhood.
Recently, an unexpected snowstorm at the end of October left much of the tri-state area without electricity and heat, something that our post-Edison world takes for granted. There is no question that the ordeal was quite stressful for those impacted. Schools were canceled for an entire week. Some hunkered down in their dark, cold houses, despite the frosty temperatures. Others booked hotel rooms. Still others stayed with friends and family. It was a really rough week.
John and I and the kids managed to camp out at my in-laws and felt fortunate to be able to bask in the glow of their uninterrupted power. Surfing through messages on Facebook, I was able to read how my friends were fairing. As could be expected, those who got their electricity back within a day or two returned to their daily routine. However, for those literally stuck in the dark all week, there was something unexpected. I saw photos and read messages about family sight-seeing trips to museums and to the Statue of Liberty. (For those of you that live outside of the New York area, the locals never visit Lady Liberty unless on a class trip or prompted by an out-of-town visitor). Also, neighbors and friends skipped the weeks of advance planning usually necessary to schedule meals and social events, and opened their homes to each other. Those who actually had the foresight to own a generator invited others to eat or even to sleepover—for days. Churches and synagogues with power opened their doors to anyone needing food and a warm place to stay (or at least a place to charge their iPhones), regardless of faith. And on a simpler note, our neighbor let my husband run a cable from his generator to power our tank filter and save our fish. Although there is no question that the power outage was upsetting at times, and certainly the clean-up from the storm costly, countless people still remarked to me afterwards how grateful they were to have the unexpected quality time with their family and friends, and even strangers.
I thought about how the old phrase, “Necessity is the Mother of Invention,” might have applied to Edison. If, in fact, difficult situations inspire ingenious solutions, perhaps Edison’s hearing loss served to motivate his innovation. After all, his early motion pictures told stories without sound (just subtitles and a piano accompanist). His phonograph allowed you to get up close to the horn to hear the prerecorded music or voices. It’s easy to imagine his hearing loss was the very thing that pushed him to his greatest creative successes.
Edison once said, “Your worth consists in what you are and not in what you have.” Lots of us living on the East Coast learned that lesson unexpectedly last week, but as a result, embraced the chance to try out new things. What if we all approached any loss as a gift, rather than a curse? After all, we all have the power to turn adversity into opportunity.
I wore one of my favorite Halloween costumes in the 2ndgrade in Islamabad, Pakistan. Since so many American children attended the International School of Islamabad, the school allowed us to dress up and celebrate the holiday. Of course, purchasing a costume was out of the realm of possibility there. There were no shops selling plastic superhero masks or anything like that. My best friend at the time was Kirsten, a blond-haired girl from Arizona whose father’s job, like mine, brought her to Islamabad. Back in the States, Kirsten’s favorite TV show was “Little House on the Prairie,” and so her mom dutifully made a Laura Ingalls costume. Not knowing what to do for me, my mom decided to be creative and tried one of her knee-length lingerie white nightgowns. On me, the gown fell past my ankles, draping the ground. Not knowing where she was going with this, I watched my mom as she folded up some aluminum foil and made me a halo (of sorts) and matching foil wings. “There you go, Meg. My little angel!”
I instantly loved the costume; the nightgown was lighter and silkier than anything I had ever felt against my body. Indeed, the material was rather see-through, yet instead of feeling shy about that, I felt sheer joy. But the thing I adored most was that its wide, willowy sleeves almost entirely covered my arms and hands. As Kirsten and I walked together in the Halloween parade together at school, I felt an inner thrill. I was able to march through the hallways of the International School with a sense of freedom I had never experienced. “What an adorable little angel,” one mother remarked with a wide grin pointing at me. If only for that short period, I could pretend I did not have only one finger on each hand, and walk freely past strangers in the
halls without attracting those sudden double-takes and side glances. Those not-so-subtle points and whispers.
The fact is, for much of my life, my dislike of my own appearance was intricately linked to how I felt others perceived me. The previous Halloween I had worn a costume where I was a cat, wearing my tight black leotard and a matching tail affixed to my bottom. My hands were clearly exposed. I could feel and sense the awkwardness in how people would look at me or attempt a smile. I could feel the pity through their stares. So young at the time, I couldn’t tell if I hated them more for staring, or simply hated how their gawking made me feel–like less of a human being.
Many years have passed since that parade in Pakistan. Beyond Halloween, it is no secret that many adults continue to want to disguise themselves—only in a different way. Perhaps they have a large, elongated or misshapen nose they want to fix, or a large blemish on their face they would like removed. The purpose? An attempt to get closer to physical perfection. That goal, in my opinion, comes with a hidden price-tag. While I cannot begrudge those that have made the personal decision to “upgrade” their appearance, allow me to share the benefit I discovered from not having the ability to “fix” my “problem.”
After my mom took back her nightgown and my costume fantasy evaporated, I returned to a life where I couldn’t just wear extra long sleeves to hide my arms and hands. But it was just as well. By not having the ability to hide my physical imperfection, I have only attracted the most wonderful people. I have succeeded in “weeding out the jerks” without even trying! In essence, those that have wanted to know me, befriend me, date me and marry me (only John!), are not shallow. Rather, they are the same people that are willing to not only appreciate, but embrace difference. They are the people in this world that have a heart and soul so evolved that they are immediately attracted to the person inside, not enthralled merely by what they see on the outside. I am convinced that if I could walk this earth with my hands hidden, and a body seemingly “perfect,” I would have the new and daunting challenge of figuring out which people are truly worth knowing. With my shortened forearms, my shoes that never fit perfectly, and my differently-shaped hands so visible, I only attract the most genuine, loving, and authentic people.
What a gift! This is my life’s blessing.
What is your first memory? It is probably from when you were around four years old, maybe three. One of my earliest memories was when I was sitting with my parents and a doctor at the Rusk Institute of Rehabilitation and Medicine in Chicago trying to fit a prosthetic forearm and attached hand onto my upper arm. I remember looking around at the other kids.
As far as I could see, nobody else had only one finger on each hand, like me. Rather, they seemed to mainly be missing an entire arm on one side, with a finger or two literally hanging from a shoulder or elbow. Those kids were there because of their mother taking Thalidomide. Thalidomide was a drug widely prescribed to women during that decade to treat severe morning sickness during pregnancy. Many women who took the drug in early pregnancy, unaware of the risks, gave birth to children with severe birth defects such as missing or severely shortened limbs. When it was my turn, I tensed. No wonder it was my first memory–it was the first time I recall really physically hating anything. The device was made out of materials that were both rubbery and hard. At first I was holding both of my parent’s hands and the next thing I knew I was being placed into an object that looked incredibly fake. To me, the device, and not me, looked abnormal. Appearance aside, I could not stand how it felt. Even at such a young age I had a strong spirit. I began to shake my arm hard enough that, to the surprise of my parents and the doctor, I somehow wriggled my way out of the darn thing. When the doctor tried to convince me to try it on again, I refused. Although I was extremely young, I knew I had disappointed my parents. They had driven more than two hours from Urbana with me to try on the device. At the time, they were at best uncertain regarding what I would be able to do physically. Wanting only the best for me, they believed that without a thumb for purposes of opposition, my life and my ability to do simple things like writing with a pencil or cutting with scissors would be significantly challenged.
Have you ever seen anything in person or perhaps on film where the visual shocks you back into your first memory? That happened to me last Sunday when I took our daughter Savanna to see the movie, “Dolphin Tale.” In the film, Sawyer, an eleven year old boy finds and then untangles a hurt dolphin (“Winter”) that was caught in a crab trap. Although Winter survives, to save his life his tail is removed. The movie is touching and Savanna, a great lover of all animals, was clearly moved. To assist Winter in swimming in a way that would not injure his spine, he was given a prosthetic tail. However, Winter hated the device so much that as soon as it was attached, he thrashed his body until it became loose and sank. Ultimately, the doctor developed a new gel-type solution so that the device was a comfortable fit for the dolphin, but regardless, my memory had been jogged.
So at this point of my blog, I have actually compared myself to an injured dolphin. You are probably wondering where this can possibly be going? So…here it is: What if my mom and dad had forced me to wear the prosthetic device because they assumed it was my only hope to living a somewhat normal and functional life? What if they were simply too afraid to walk away and face the unknown? Although I may have had some advantages had I worn the device, I am positive that my life and my determined spirit would have been forever altered. As a parent, I can now appreciate how frightening it must have been for them, given that any other option for me to live a somewhat “normal” life was at best, a question mark. Despite the fact that I was the first in my family to be born with ectrodactyly, and uncertainty was the only certainty they could count on, somehow my parents figured out the “golden rule” for parenting: They took a deep breath, gathered their courage, and let me simply be me.
I am forever grateful.
The other day, Charlie turned to me matter of factly and said, “Mom, I know what the “S” word is. I found out during my playdate today.” “Crap,” I thought to myself. Were six year olds already discussing bad words with one another? My mind drifted to the first time I remember hearing my own first bad word.
“Oh, that’s Billy’s brother, he is retarded.” I had just asked a neighborhood kid about the boy who spent more time in his driveway playing with pebbles by himself than playing with other kids. It was around 1977 and my family and I had just returned to Illinois from living abroad in Islamabad, Pakistan. At that time, the “R” word was not considered bad by any stretch. Rather, it was used freely, rarely raising an eyebrow.
In subsequent years, the word “retarded” has become politically incorrect, yet its casual and offensive use persists. However, two years ago 14-year-old Nick Marcellino, whose sister, Rosa, has Down’s Syndrome, decided to do something. Nick had grown fed up with other people’s comments about his sister. ”That’s so retarded,” or “You’re such a retard” he would hear from both friends and strangers. According to Nick, “Even good kids use the word, not realizing that they’re talking about people like my sister.” Nick decided to campaign on behalf of Rosa and this ultimately led to his state legislature changing its laws to remove the term “mental retardation” and replace it with “individual with an intellectual disability.” This same effort generated national support and led to Congress passing “Rosa’s Law” which removed the term “mental retardation” from federal law. In essence, Nick and the Marcellino family had succeeded in changing the law to encourage people to stop using the hurtful term “retard.” Their efforts were clearly admirable. However, I couldn’t help wondering whether removing the term mental retardation from the law was realistically going to prevent other people from calling their sister retarded? Even if that term could be stripped miraculously from the language entirely, isn’t it possible and even likely that a new slang term would appear to describe Rosa and others like her? The Marcellino family’s effort may have been the understandable response, but can it ultimately achieve their goal? Was it the perfect response?
During a recent sermon, Rabbi Avi Friedman told a story about a girl who has a brother with special needs. In her presence, someone had called him retarded. She was deeply hurt. In response, the rabbi described how the girl made a YouTube video about her brother and how the word “retarded” impacts people. To date, more than 40,000 people have now viewed her video. The outcome? Those who have viewed the video will likely refrain from ever using the “R” word. While the girl did not get President Obama to sign a new law, her effort has the potential to achieve something even more transformative. Her video directly influenced people and touched them in a way no legislation could. As Rabbi Friedman advised, sometimes out of imperfection, comes the perfect response.
I love the idea that before we act in response to a problem, we take a moment to distinguish what would be the “understandable” versus the “perfect” response. Thinking back to my earlier blog, “Thoughts Beyond the Pom,” I consider the different possible responses cheerleading Coach Linda Fox and her squad could have made when they learned about Julia, a teen born with incomplete arms and no legs. Julia wanted to cheer with her Nebraska high school squad but was refused three times. Coach Fox and her squad could have given the understandable response and simply written Julia a letter of encouragement. But instead, they created a modified uniform for her and brought her to cheer with them over 800 miles away in Michigan. They made the perfect response.
Of course, not every situation demands a perfect response. Later in the day, when I was putting Charlie to bed, I asked him if he knew what the “S” word really meant. “Of course I do, Mom! It means “stupid!” Phew.
“These things are good: ice cream and cake, a ride on a Harley, seeing monkeys in the trees, the rain on my tongue, and the sun shining on my face. These things are a drag: dust in my hair, holes in my shoes, no money in my pocket, and the sun shining on my face.” Rocky Dennis, “Mask” (1985).
As a child, to stop other kids from staring, my secret weapon was to run over to them and talk incessantly about nothing necessarily of importance. My theory was that if I hid in a corner by myself, I would become no more than an object to them; something they could easily taunt. Rather, I directly engaged them, streaming endless questions in their direction. Invariably, they would get caught up in our conversation. Suddenly I was just like them, only different. My secret trick worked for years as a child, but as I began to grow up, I saw that it instead became awkward. If a teenage boy or girl stared at me, my running up to him or her to chat incessantly about nothing just made me strange in a way that had nothing to do with my hands or feet!
In the movie Mask, Rocky Dennis (played by Eric Stolz), suffered from a severe skull deformity. The film took place when Rocky was in junior high school. He looked like a cross between the Elephant Man and a Lion, with his long red hair. Rusty, Rocky’s mother, was played by Cher. While Rocky was lovingly embraced by his mom and fully accepted by her close friends, he was initially treated by fellow students at his school with pity, fear and awkwardness. However, Rusty was committed to having Rocky experience a normal life. Yet despite his mom’s support, Rocky needed to develop enough self-confidence to overcome the stares.
Along the way, Rocky discovered that having a sense of humor was what made him relatable to his peers. In one scene at school, Rocky used an unexpected play on words and earned laughs from his classmates. It was at that moment in the film that you could see the class transforming their impression of Rocky from a “something” into a “someone.”
For years after seeing Mask, its lessons have still resonated with me. For instance, I have been known to be so excited about one thing or another that I will exclaim aloud, even to people I do not know well, “That is fantastic! If I had a thumb it would be up!” Most that don’t know me appear wary of acknowledging my finger-humor and don’t know how to respond. When I start smiling, they are immediately put at ease. The other evening I was walking toward Port Authority and noticed a sign with a picture of Ellen DeGeneres. The caption read, “You never know what funny can do.” I caught my breath and even began to shiver. The truth of that simple sentence struck me deeply. The ability to laugh at yourself is the key to helping others feel comfortable with you, no matter your difference.
These things are a drag: When my shoes don’t fit, when I cannot open a water bottle, when someone asks if they can help me do what I know I can do by myself, when people stare at me because I’m different. These things are good: Chocolate late at night, goodnight kisses from my three kids, my husband John’s sharp wit, the way the water brushes my face when I am swimming laps, and when people admire me because I’m different.
Meg Zucker, October 2011.
Have you ever held yourself back from doing something simply because you don’t think you can do it? Or how about (even worse), holding back because you believe others won’t be accepting of you? Or, (the worst), people pass so much judgment that you lose the motivation to even try or are prevented from achieving something meaningful to you, even a dream?
When I was a sophomore at Urbana High School in central Illinois years ago, my friend Courtney wanted to try out for the “Wrestlettes,” the wrestling team’s cheerleaders. “Meg, please try out with me! I don’t want to have to go there by myself!” she begged. I was social and loquacious, Courtney tended to be quieter, at least as compared with me. However, I was beyond reluctant. How could I pull this off? Already at sixteen years old, it is hard to believe, but I had never even worn a pair of sneakers! This was mainly because in those days all “tennis shoes” (the term for sneaker used in the Midwest) were made extremely narrowly, with low sides, and no ankle support. In fact, I had never even bothered trying a pair on; my foot would presumably pop out. The thought of wearing a tennis shoe for cheering? Not a chance. I was close enough to Courtney to explain my rationale for not wanting to try out with her.
As any great friend in my life, she would hear nothing of it. The next thing I knew we were on a bus together to Marketplace Mall in Champaign. After a search, Courtney spotted a new kind of Candies tennis shoe. It actually was the first high-top girl’s tennis shoe I had ever seen! Not knowing my size, I asked the sales clerk for the smallest. “5 ½” she responded. “Great, thanks.” As I slipped my foot into the bright white pair of Candies, I couldn’t help but smile. Admittedly, even the smallest size was a bit too long for my foot, but laced up, I could ensure they remained on my feet, even to jump. I was elated!
That night, I joined Courtney at the high school where we cheered in front of the Wrestlette coach and the two co-captains. In retrospect, shoes aside, I must have really taken them aback. After all, besides looking so physically different, my ability to clap loudly with my two fingers was faint at best. Nonetheless, what I lacked in hand percussion, I more than made up with my loud vocals and positive energy. The next day we learned that Courtney had made the squad, and somehow I was also selected as an alternate. As I walked home from school that day, I couldn’t stop smiling. It took another person’s confidence in me to help me find my own. As the season kicked off, while being on the Wrestlettes was by no means a dream of mine, I immensely enjoyed the experience. I even eventually became a full-blown member of the squad.
This week, I was surfing the internet and quickly became intrigued by the story of Julia Sullivan, age 16. Julia is from Nebraska and was born with incomplete arms and no legs. In the past, despite being bound to a wheelchair, Julia’s strongest desire has been to be a cheerleader. She tried out for her high school’s squad in Nebraska three times, without success. “I love to get the crowd going!” she exclaimed in the story. Despite Julia’s enthusiasm and efforts, her high school squad was unwilling to take a chance on her. But somehow, Julia’s fairy god mother showed up, 800 miles away in Portland, Michigan. Cheerleading coach Linda Fox read about Julia online and became inspired. She later brought Julia’s story to her own squad, who challenged her to “do something.” This past week, chaperoned by her parents to Michigan, Julia, wearing a modified Portland cheerleading uniform, cheered on the sidelines from her chair, and also participated in the final stunt with the rest of the squad.
Julia’s story reminds me that I was lucky to have a good friend like Courtney who would not consider allowing me to hold myself back. I was also incredibly fortunate that the Wrestlettes were willing to embrace me as a human being, rather than simply as a physical being. Mostly, it reminds me that the improbable can still be possible.
Just don’t hold back.
“That’s Meg’s daughter, she was adopted!” exclaimed a mother I hardly knew, speaking loudly. The scene took place over the summer at a pool, as I was being introduced by the mother to her two friends.
Savanna, our five-year-old blond (in a family of brunettes) daughter, was running around out of earshot. “What?” I remarked, a bit taken aback. Reacting to my reaction, the mother exclaimed loudly, “Oh, I am sorry Meg. Isn’t Savanna adopted? Was that a secret? Or, is it that Savanna does not know she was adopted?” Differences appear in many shapes and sizes. One of Savanna’s differences is that she was indeed adopted at birth. However, I never could have predicted that the difference that would draw real attention would be her light blond hair.
Savanna’s adoption is not a secret, by any stretch. Before John and I adopted her in Southern California, we made a conscious decision to ensure that her adoption story from inception would be completely transparent to her; the adoption would be simply part of her greater life story. Having heard horror stories in my time, I was adamant that there would be no surprise waiting for her whenever she reached the “right age” to hear that news. To do so would be the equivalent of hiding Ethan and Charlie’s hands post birth with mittens until they were at the perfect age to handle hearing about their digits.
As I reflect further, the mother’s remark struck me mostly because it reminded me how very uncomfortable so many people can behave when exposed to any type of overt difference. This is nothing new. My own mother-in-law, who shares my dark hair color, tells me that when John was a baby she was approached constantly with the question, “Where did he get that red hair?” For her, John was her biological son so she could just offer a joke about the red-haired mailman visiting a lot back then.
At the pool, the mother was probably trying to explain to her friends how Savanna could possibly be my daughter since Savanna is so blond. To me, even with the best of intentions, the remark was made so that Savanna’s difference could be explained to help the others figure out the visual inconsistency. But what a shame it would be if everyone always felt the need to explain away differences because they made others uncomfortable. Can you imagine? What if we lived in a world where a woman introduces her friend Jack (a small man with a limp) to another friend. “This is my old friend Jack,” and then suddenly volunteers, “He was conceived in a petri dish and arrived prematurely.”
When Savanna was a baby, I struggled with how best to respond to continuous questions about her fair hair. Most importantly, I did not want my response to seem as I was trying to hide an important part of who she was from others. However, as Savanna has begun to grow into an extremely precocious kid, one day recently it struck me. My response should be no different than when someone asks me, “Why are your boys born like that?”
I can simply respond, “It’s in the genes!”
I just heard that Jane Lynch who plays Sue Sylvester in the hit show “Glee” wrote a fabulous new memoir. To kick off her prose, she wrote a letter to her 20-year-old self. What a phenomenal concept! What if we all could choose a point in time of our lives when we were our most ignorant and vulnerable selves, and offer some words of wisdom, with hindsight on our side? I plan to explore this idea further in the book I am writing. In the meantime, here are some teasers that may or may not make the cut:
Right about now, you are living in Egypt with your family, are boy-crazed, and are wondering what Junior High will be like when you move back to the States next year. I am now 42, married with three kids, and I’ve got some good news and some bad news to share with you:
The good news
- You will be thrilled because the days of going to a shoe store in vain will be behind you. There will finally be a trend away from tennis shoes, flats, and pumps in the early 1990′s. Ankle boots that can support your unique feet will actually become fashionable!
- You will receive a lot of great necklaces for your Bat Mitzvah.
- You are incredibly fortunate to have been blessed with clear skin.
- No more waiting for letters to come from friends and loved ones. You will be able to communicate within seconds. Keyboards will still be relevant and necessary. You will become the fastest two-fingered typist… ever.
- Your good metabolism will allow you to fit well into your Jordache jeans in High School.
- Just like your childhood friends, your adult friends will continue to treat you like everyone else, never focusing on your physical difference.
The bad news
- Strappy sandals are still in and don’t expect that Jimmy Choo or Christian Louboutin will follow the shoe-boot trend.
- Jewelry clasps will stay small.
- Your clear skin will lead you to a lifetime obsession with expensive facials and face creams.
- After e-mail comes thumb-centered texting.
- In college, the “freshman 10” is a myth. It is actually the freshman 15.
- Strangers will to continue to judge you and assume you can’t do things, no matter how old you get.
Before I conclude, let me offer a few final nuggets: Be sure to develop the ability to laugh at yourself, no matter the situation. Also, don’t forget that the man that will want to marry you will be the guy you never chased. Finally, remember the following expression, “What You Think of Me is None of My Business.” It will serve you well.
“It just isn’t fair!” I shouted to my parents. It was 1982, and we were living in Cairo, Egypt due to my father’s job. Peter, my older brother by 15 months, had just been invited to go with our school’s “Jazz Rock” band to Athens, Greece to play for a local school there. Although we both played trombone, he was by far the better player. “Meg, he’s older than you are,” my mom responded matter-of-factly. “When you get bigger you will be able to do that too.” It was true. Only the eighth and ninth graders were eligible, regardless of talent. Still in the 7th grade, I moped around the house as he left, wishing that I was sitting on the plane with him and the rest of the band. It’s been thirty years since then. My relationships with Peter and with my younger brother, Ted, are so close that I easily forget about those adolescent jealousies.
This past weekend the Scholastic Storyworks article, “The Awesome Powers of Ethan Z” written by Lauren Tarshis (and an accompanying video) were published in print and on the Web. Although our son Ethan had seen an earlier draft of the article and initial version of the video, I brought him into my office at home to see the final product. We were both pretty excited, and all of a sudden it occurred to me that Charlie and Savanna might like to see the completed materials as well.
As I proudly played the video to my three children, I focused mostly on Ethan’s reaction. While he seemed a bit embarrassed by all the attention, he also appeared pleased that the product turned out well. There he was on video and in print offering constructive advice for dealing with how others viewed him and his difference. With Charlie and Savanna sitting on my lap and Ethan beside us, I then began to read the article aloud. About half way through the material, Charlie turned to me and said, “You know mom, kids at school are pointing at my fingers, too.” Since Charlie entered first grade at a new school this month, it was the first I had heard from him about the subject. Given he’d be exposed to many new kids in a new environment, I knew these moments were coming. I turned to him cautiously. “Charlie, you hadn’t mentioned anything to me before. What happened? Are you alright?” I began to brace myself, unsure of what would come. Would he break down and cry? Would he feel confused? Hurt? Angry? Charlie hopped off my lap and looked at me directly. “Mom, it’s not fair. How come I can’t get my own video like Ethan?”
A rare occurrence for me, I was speechless, and of course also amused. Not knowing exactly how to respond, I channeled my own mother. “Charlie, he’s older than you are,” I responded matter-of-factly. “When you get bigger you will be able to do that too.”
As we approach the 10 year anniversary of our nation’s worst terrorist attack and recall with so much emotion the tragic events of that day, I balance my grief at the event with the gratitude that so many of my co-workers and my boss escaped from the World Trade Center that day. Tomorrow I am preparing to take a flight for business reasons to the west coast. I am sure many would not even consider stepping on a plane on 9/11. I, however, am willing. Beyond the attacks themselves, the goal of a terrorist clearly goes beyond the killing and destruction, but also includes the intention to deprive us of our freedom; our ability to live normally. So many of us still remain personally impacted. For example, many New Yorkers will refuse to take a great new job if the office space is on a high floor. Others never leave their office building without their cell phone and wallet in tow…just in case.
Another ripple effect of September 11th, personal to me, was that I could no longer carry scissors on a plane. For years I had brought a small scissor in my carry-on bag to help me open my complimentary snack bag on the flight. To understand my dependency one need only watch my husband, John, steer clear from me daily as I navigate through our kitchen wielding a steak knife. I carry it not as a weapon, but as my default tool to open things. Think about the items that people use their fingers to pull apart: cereal bags, snack bags for the kids, hard plastic saran wrap, the wrapper that seals a new bottle of dressing, or perhaps the plastic on the lid of a can of bread crumbs. These are not easy for me. Beyond the kitchen, one uses one’s many fingers to open everything from new toy boxes to make-up packages or bottles. That hard plastic surrounding a cap is the worst!!!
The constant struggle to open things using only my two fingers reminds me of why I never use chopsticks. Can I do it? Yes, with extra effort and some frustration, I can indeed. However, why would I when I can use a fork? Years ago, even before I met John, I grabbed a steak knife or scissor to aid me in these common chores and effectively never let go. I suppose relying on a knife or scissor has become my primary adaptation for living in a ten-fingered world where packages and wrappings were never intended to be opened by the likes of me. Of course, there are real options to assist those physically lacking. For example, there are prosthetic devices. But for me? No thanks, not necessary. A steak knife or scissor? Yes, much appreciated. Just yesterday I snuck a small pair of scissors in my purse in case I needed the extra boost to open my son Charlie’s popsicle stick wrapper after school (although Charlie was totally oblivious, I used it….).
The days of free warm meals on flights have been over for some time. And so, post 9/11 and forbidden to bring my sharp tools on board to open the lame wrapper-encased airline snack offerings, I often went hungry. Admittedly, my pride would get the best of me and I would refuse to ask the person sitting next to me or the flight attendant for help.
However, a few years ago, while stuck on a runway for a length of time, starved for food with nothing available but a bag of nuts, I decided to try to open the bag on my own. Despite several initial failed attempts, I realized that by holding the bag tightly with both hands and carefully ripping the bag downward with my teeth, it would rip apart! Sure, several of the peanuts spilled onto my lap, but I nevertheless rejoiced! As I reflect, had I not been prevented from bringing the scissor on the plane, I would never have made the extra push to try to open the bag on my own. I am pleased to report that despite the fact that scissors are still a prohibited carry-on item, on this Sunday’s flight I go forth confident that a small legacy of 9/11 has been overcome. This time though, I think I’ll ask for the pretzels.
I remember watching Woody Allen’s 2009 film, “Whatever Works” and thinking to myself, “What an interesting phrase.” Written in the context of love and relationships, it never occurred to me at the time that the phrase could also sum up a personal shopping experience.
During our annual trip to Nantucket this year, while browsing in one of my favorite local stores on Main Street, Vis-à-Vis, I noticed sitting in a small basket a really adorable and seemingly fashionable bracelet. It was all black with a flexible band, with three small rows of (fake) stones, also black. Despite their dark hue, the stones still reflected the light and sparkled. It seemed small enough for my tiny wrist-but was that possible? I wanted to try it on but hesitated.
The reason? I can count on my two fingers how many bracelets I actually own and have sported publicly. Both received as gifts, I can manage to wear them only if I am wearing the bracelet above, and secured by my watch. This prevents the bracelet from sliding right passed my hand to the floor. Yet I gave in to the urge and tried it on. To my exuberant surprise it fit snugly on my otherwise naked wrist and stayed put even when I tried to shake it loose. It was only a $14 trinket, but to me it was rare and priceless. To boot, later at home Savanna made a point of admiring it. I think her interest was not just about the jewelry but the fact that she had never seen her mommy wear any bracelet.
Later in the week, while John, Ethan and Charlie went fishing, I took Savanna for a special “girls’ morning.” It had occurred to me that there were similar bracelets at that shop and one might also be perfect for my nearly five year old daughter.
At Vis-à-Vis, Savanna picked out an almost identical bracelet to mine, except hers had rows of sparkly white stones. As I suspected, the size fit her small wrist perfectly as well. As we strolled together hand in hand through the cobble stone streets of Nantucket’s beautifully quaint downtown, we stopped by Pinwheels, one of our favorite children’s boutiques on the island. Proud of her new bracelet, Savanna showed it to the saleslady. “How beautiful!” she remarked to my smiling daughter, not noticing my own bracelet. “Did you know that is actually a tie for your hair but of course it also looks beautiful on your wrist.” The comment went over Savanna’s head. I gasped. The woman was right—my perfect bracelet was intended for hair!
We met the boys at the pier returning from their fishing expedition, but my attention was on my own catch of the day. I looked at the black band, stones still glittering in the sunshine. “Malesh!” I thought to myself. Malesh had been my favorite Arabic expression from when I was a child living in Cairo, Egypt. Translated into English it means: “Forget about it; move on.”
Woody had been right- whatever works indeed.
Ethan and I experienced a few firsts today. He rode a subway (the “R”) for the first time; I learned how to organize my iPad apps by topic; and, while being interviewed on video by Rosa Jurjevics at the Scholastic office in Manhattan, we together experienced the 5.8 scale earthquake that impacted the East Coast. It was quite surreal—as Rosa was interviewing us for the video Storyworks magazine is creating to accompany the article on Ethan, the room around us began to shake. Not having ever experienced an earthquake, I was taken aback. The feeling reminded me of being on a cruise ship the first night out to sea, when you have yet to find your sea legs. “Am I that nervous about this interview?” I thought to myself. “Does the subway run under this building?” As Rosa and the videographer interrupted the taping to see what was going on, I realized this wasn’t just my nerves. Rather, we all felt the room and its contents shake.
No one said aloud what every grown New Yorker was thinking: Was this a result of a terrorist attack nearby? Fortunately we soon learned that we had experienced our first tremor and that although the epicenter was in Richmond, Virginia, no significant damage had occurred and no one was harmed.
Meanwhile, like any other nine-year old, Ethan thought the experience was “really cool,” and wondered whether the folks from Scholastic had caught us experiencing the tremor on film. Overall, the earthquake aside, the taping went off without a hitch. Rosa had a natural ability to interview without making the conversation feel artificial. In response, Ethan and I were put at ease. We readily provided insights into how we’ve learned to cope and thrive, despite the sometimes harsh judgments of others. We focused much of the conversation with Rosa on the strategies we use when we’re met with everything from curiosity to fear to cruelty. The experience also left us with a deep appreciation for Lauren Tarshis, the editor of Scholastic’s Storworks magazine, who really wanted to get our story and who truly believes that how we have managed through our life experiences will have a meaningful impact on students and teachers.
And, naturally, I spent the next hour engrossed in my iPad “news” file to see what was going on post quake.
Today, Rosa Jurjevics, who works for Scholastic came to our hometown to film Ethan, our older son who (along with his brother Charlie) was born with my genetic condition. The purpose for the shoot was to capture Ethan playing soccer, basketball and baseball with his close friends, just like any other nine-year old.
Ethan is being featured in an article in Scholastic’s Storyworks Magazine in October. The Scholastics team is also developing an accompanying video. Targeted to 3-6 graders, the piece is intended to help kids understand that being different like Ethan is not that significant after all, and that he can do just about everything any other kid can, even with only two fingers. In fact, as the article advises, being different makes him just like everyone else. The article and video will be available to subscribers of the Storyworks magazine.
In addition to being the subject of the article and video, Ethan has also written a children’s book about self-acceptance. In the initial writing stages, the protagonist was a fictitious child named Aiden who had two fingers. Something was missing, however. Thanks to the great advice of Lauren Tarshis, editor of Storyworks, now the main character is Ethan himself. The story is now illustrated with actual photos from Ethan’s life to captivate the reader visually.
Under a bright sun this afternoon the kids played and laughed and soon forgot they were being filmed. Rosa was a natural. Somehow she was able to tape the kids non-stop while remaining in the background.
Later this month, Ethan and I will visit the Scholastic headquarters in downtown NYC to complete the video recording. There, they will interview both of us. Not sure exactly what to expect. To keep my nerves in check, I am currently concentrating more on what I should wear for the segment! More to come after the taping in New York.
This is me in January 1999 at The House of Botticelli in Bronxville, NY. I had recently become engaged to my husband John, and it was time for me to go look at wedding gowns with my family. As I walked downstairs, I looked down to see hundreds of magnificent dresses. Every girl who hopes to get married imagines this day with extremely high expectations, not truly knowing what to expect. For me, Botticelli’s did not disappoint. While not all were necessarily my taste, the gowns were breathtaking. In fact, the appearance of their silky texture was so enticing I found myself slowly walking past each one, running my finger down the row of dresses, feeling a new sense of textile pleasure.
As I selected a few to try on, I became very self-conscious. After all, not only did I not like seeing the vision of my one finger alongside any dress, my forearms are slightly bowed and also shorter than the norm. To me, reflecting at that moment on my girlish fantasy of what someone is supposed to look like in her wedding gown, I thought I looked quite hideous with my arms and hands so visible. The only temporary relief was to hide my arms behind my back as I gazed in the three-way mirror. If only for that moment could I feel beautiful, even picture perfect. Soon after my grandmother snapped this photo from behind, I asked the attendant whether she had any dresses with long sleeves. I explained to her that our wedding was planned for the end of October, and I anticipated being chilly. “Not many, but I’ll check,” she replied. I didn’t even bother asking her about dresses with “3/4 sleeve” because they always hit my arm in the wrong place, somewhere around my wrist, resting awkwardly on my arm.
With maturity and hindsight, I regret not choosing the wedding gown I loved the most, a sleek, strapless beauty. Instead, I selected the one that would cover my arms the most. It was certainly pretty, with embroidery stitched all over white silk, but it was not my top pick. Despite the unconditional support from my husband-to-be, as I prepared to take the biggest step in my adult life, I still had a long way to go toward my personal road of self-acceptance.
I’m Meg Zucker. By day I’m a seasoned attorney specializing in anti-money laundering and anti-terrorism, but in my parallel universe I’ve begun a campaign to help people embrace their differences. To that end I’m writing a book, posting this blog, publishing articles and speaking in public forums to teach what I’ve learned. My vantage is unique and, I’m frequently told, pretty remarkable. You see, I was born with ectrodactyly, a condition that left me with shortened forearms and one finger on each hand, and one toe on each foot. I am married and the first two of our three children also have my condition. The fact is, I feel my life’s work would be incomplete if I didn’t make my best effort to share what I’ve learned by not only looking so different from the “norm,” but also by having given birth to my difference.
A few years ago I watched an episode of Good Morning America (GMA). The GMA host Robin Roberts was attempting a different profession, suitable to her interests and personality traits. Robin wanted to try to become a lyricist. Inspired by singer and songwriter Inda Arie, she first reflected on her favorite of Arie’s songs called, “I am Not My Hair.” During the show, Robin described how, after her own breast cancer treatment, she had lost her hair and how difficult the loss of her hair was for her on top of dealing with her bout of cancer. The chorus read, “I am not my hair. I am not this skin. I am not your expectations. I am not my hair I am not this skin. I am a soul that lives within.”
In my opinion, the power of these lyrics need not be contained to the specific message: I am not my hair. I am not my weight. I am not my wheelchair. I am not my scars. I am not my color. I am not my height. I am not my gender. I am not my sexual orientation. I am not my accent. I am not my wrinkles. I am not my leg severed by circumstances of war. So many of us, from either birth, a very early age or at an unexpected moment during life, define our own self-worth based on our physical being or how we believe we are being perceived by the rest. Unfortunately, if we are not prepared to fully embrace ourselves, we are led by the judgment of others and conclude that any difference must equate to a limitation, even a devaluation. I have been saying all along that I “wear my limitation on my sleeve.” Perhaps the only thing I have been wearing is the perceived notion of others about who and what I am, and what I am capable of in my life.
I like to think my overall message is not earth shattering, but rather simple and pure. We have a lot to learn from one another. If we find ourselves making assumptions and judgments about others, is it because we are having a harder time looking in the mirror, the one that reveals our true selves? While we prefer to dwell in our comfort zones spending time with people of like mind and physical being and judging those that are not, it is only when we reach beyond the borders of our familiar space that we discover our own ability to see the truth that has always been in front of us. If we are fortunate, that truth reveals a clear understanding, allowing for no false perceptions of others, and ultimately a total acceptance of self.