My Own Jeckyll and Hyde

Preface

February 1976

Zoom photo“We’re gonna Zoom-Zoom-Zooma-Zoom…C’mon and Zooma-Zooma-Zooma-Zoom!” I stared at the kids jumping up and down singing with their arms swaying, wearing red and blue striped shirts. Although I was only seven, we had just returned from living in Israel, Afghanistan and Iran. Within a year I would learn of our forthcoming adventure in Islamabad, Pakistan and then eventually to live in Cairo, Egypt by 7th grade. One of my closest friends named Jen had just told me about a show called ZOOM and spontaneously began to sing its theme song. She continued. “Meg, you’d like it. Everyone is really different. They even speak a secret language called ‘Ubbi Dubbi.’”

Jen and I were playing in her room with her vast Barbie collection. We had been close friends since we were toddlers, and so I didn’t blink when she mentioned the kids on ZOOM were different. It was Jen’s way of describing them as cool. That was the greatest part of having friends I’d known all my life. To Jen, the fact that I had only one finger on each hand, shortened forearms and one toe on each foot was as irrelevant as the fact that Jen had blonde hair and I was a brunette.

In fact, ZOOM reflected the goal of a new generation of television programming in the era, intended to more reflect America’s diversity. However, as I watched my first episode, I couldn’t help but search among the kids singing the catchy tune. Were any of them different like me? I wondered.

 

 

Meg Feb 2017I have a confession. I am not always, 100% of the time, a flaunter. Typically if you catch me out and about either dressed down with my hair up and glasses on, at work or out at a party dressed up, I am not focused on whether anyone notices or even stares at me. And, if I am with our sons Ethan and Charlie, who share my condition, I am utterly unselfconscious around them. The alternative would be disastrous for them.

However (and here comes the admission….) the only time I’ve found myself with the impulse Savanna and Madison 2016 gymnasticsto hide my hands in public now is when I am with our daughter Savanna. Last year Savanna met a girl named Madison who would become a member of her gymnastics team. until this past October I had heard all about how much Savanna adored her new friend, but I had yet to meet Madison.

One evening when I was waiting in the back of the gym for Savanna after practice, she walked over toward me, arm and arm with her friend. As they both approached, although I offered a warm smile, I ridiculously shoved both my hands in my pockets. Had Madison noticed my hands? I couldn’t be sure.

Riding home that evening with Savanna in the back I felt ashamed about my behavior. But although I wasn’t proud of it, I knew full well its cause. As a child with a blatantly physical difference, it was like I was living in two different worlds, depending on whether I was with strangers or not. Upon reflection, with all puns intended, it does not escape me I was like Jekyll and Hyde. Whenever with friends, I was myself. It was a welcome reprieve from a life filled with constant stares and whispers directed at me from other kids. My difference was a non-issue and reflected the flaunter I would eventually become.

Lincoln square bearBut then there was the Hyde in me, i.e., the hider. I hated Hyde. It was an uncontrollable yet inevitable part of me. From the moment I stepped out in public and other kids were around, I felt an instant sense of shame. As my own version of Jekyll, I would happily play with my brothers on a big bear and whale sculpture in Lincoln Square Mall in Urbana, my hometown. Yet, the minute other kids came up to climb, I would retreat. Hyde’s ugliness transforming my very being from a social and playful kid around friends and family, to one that would claim to be “tired” to avoid the reactions to my difference, my embarrassment.

It is no wonder then that as a young girl I longed to see anyone visibly imperfect. But back then there was no Internet; no ability for me to be flooded with Google images of different people like me. My only hope was television. Anytime I heard about a new show, I was nervously excited and secretly hopeful I could see a kid like me—different on the outside but living a “normal” life. Thus far, the only show on TV where I saw a child with a blatant physical difference was on the annual Muscular Dystrophy Telethon, hosted by comedian Jerry Lewis. However, I couldn’t relate to those kids, who were profiled for a short segment in their wheelchairs, highlighting their disability and trying to raise money for the cause.
While I enjoyed shows like Sesame Street and Electric Company, with their ethnically and racially mixed casts, none of the cast members that I saw had a blatant physical difference. It wasn’t until ZOOM’s final season in 1977-78, that I finally saw another child that was blatantly different on television. A girl named Dee Armstrong was featured who had something called Larsen’s Syndrome. Characteristics of the condition include dislocations of joints, skeletal malformations, and distinctive facial and limb features. But instead of the film focusing on Dee’s disabilities, she was portrayed as a talented competitor in wheelchair basketball and as a girl with the confidence to forge her own path. During the piece, Dee proclaimed, “I sometimes do wish that people wouldn’t just sit there with their eyes on my canes. Why can’t they just look at me. I am a person myself!” I was floored.

It’s interesting how things come full circle and the life’s lessons continue no matter how old IGianna-Sv2 am. Instead of seeing kids from the next generation yielding to their inner-Hydes, I see them embracing their own Jekyll potential, on TV or otherwise. For example, Kids Flaunter Gianna Schiavone, who was born with one hand, is now being featured on Sprout TV, happily flaunting her arms, singing and dancing on the show along with the other kids. And then the Jordan Reeveswonderful Jordan Reeves was just on Rachael Ray’s daytime talk show pitching two inventions, including her prosthetic “glitter” arm, to investors from ABC’s “Shark Tank!” Finally, this past Charlie concert 2017week, my heart swelled to capacity watching our son Charlie step to the front of his chorus at his 6th grade Winter concert to sing a solo.

Back to my own shameful ‘Hyder’ behavior when I met Madison. A couple of weeks later I decided to embrace myself unconditionally once again, revealing my hands around Savanna’s friend. Although Madison at first seemed taken aback, to my relief, any surprise dissipated quickly. And then, while attending Savanna’s largest team meet in Atlantic City, NJ, I was reminded that no one enjoys a perfect life.  Madison’s mom Lori and I were chatting and the task of tying shoes came up in casual conversation. In that moment she shared with me that in fact her own mother, Madison’s grandmother, was born missing an arm, and had taught her how to tie her shoes in an adaptive way. We laughed together as she described how that was the only way she knew how to tie shoes, with one hand, and left it up to her husband Matt to teach Madison and her little brother how to tie their own.

It occurs to me now that the children of today are not anything like those in my days.
Whether through television programming, Internet exposure or otherwise, and whether touched personally in their lives or not, difference to them is simply normal. And so, the next time I meet a new friend of Savanna’s, I will reflect on this piece and remind myself there is truly no reason for me to Hyde. Er….Hide.

 

Postscript

The ridiculousness of my hiding my physical difference has recently been further underscored after hearing that Madison’s father has been battling Stage 4 colon cancer. Matt is a loving, devoted husband and father. His treatments are extremely costly, and the family is now struggling with this setback and many difficult decisions. I’m posting a Go Fund Me link to their page to encourage those who are able to consider supporting Madison’s family.

 

 

 

 

 

 

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