MegZucker

Preface

September 2007

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 1^st 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.

And so for me, I think I’ll respectfully disagree with FDR.  The only thing to fear is not fear, but the failure to believe in yourself and to teach your kids the same lesson.

Preface

May 1979

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.

Preface

June 1998

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.

February 1999

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.

“A strenuous effort must be made to train people to think for themselves and take independent charge of their lives.”  -Anne Sullivan

Preface 

March 1980

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.

Preface

October 2012

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 13^th 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.

Postscript

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.  

Preface

February 1974

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.

Preface

Fall, 1981  

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.

Postscript

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.

Preface

November 1989

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.

Dear Elizabeth,

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. 

Postscript

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.”

Preface

October 2012

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.

“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 7^th 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 500^th “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.

Preface

July 1974

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 1^st 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.

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.

Preface

October 1985

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.

December 1986

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.

“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

Preface

October 2007

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 1^st 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 7^th 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 9^th 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.

Postscript

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.

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.

Preface

November 1987

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. 

Jan 2003

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 4^th 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.

Postscript

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.”

Me: “Why?”

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!”

Preface

November 1976

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. 

Preface

May 1972

“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.   

October 1976

“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. 

February 2005

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. 

Postscript

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.”

• 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)

Preface

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 4^th 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.

August 2012

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.”    

Postscript

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. 

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
fleeting moment.

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.

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 4^th 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.

Preface

Spring 1933

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.

September, 1982

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.

Preface

May 1976

“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.

July 2012

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.

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)

December 1999

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 50^th 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.

April 1973

“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.

February 2012

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 1^st 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 1^st 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.

Preface

July 1993

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…).

June 2012

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.

Postscript

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.

Fall 1980

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.

May 2012

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.

Preface

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.

Postscript

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.

Preface

May 1984

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 2^nd 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.

Postscript

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.

Preface

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. 

When could helping others ever be considered a mistake?

Spring 1985

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.

Postscript

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! 

Preface

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.

February 2012

“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.

March 2012

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.

“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!

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 86^th 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 the14^th 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.”

“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 20^th 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. 

Preface

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.

1992

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.

1995

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.

1997

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.

Postscript

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. 

Preface

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.

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 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 1^st 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.

Today, as we close the chapter on 2011, I celebrate these beautiful and courageous people, and look forward to seeing who else may turn up on my list for 2012.

Happy New Year!

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 1^st grade and on the school playground after lunch.  Three  4^th 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 4^th 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

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 12^thanniversary 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!

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:

Dear Ethan,

 “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.”

I wore one of my favorite Halloween costumes in the 2^ndgrade 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.

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.

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.

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:

Dear Meg,

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.

Love, Meg

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 11^th, 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.

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.

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.