“One’s dignity may be assaulted, vandalized and cruelly mocked, but it can never be taken away unless it is surrendered.” Michael J. Fox Lucky Man
I slumped back munching on popcorn in the chair at the Thunderbird Theater in Urbana my hometown. At my urging, my entire family had decided to see the premier of a new popular summer flick, “Back to the Future,” starring Michael J. Fox as ‘Marty McFly.’ I had been a huge fan of Fox since first seeing him in 1982 as ‘Alex P. Keaton,’ the precocious straight-A student in the television series, “Family Ties.”
The movie plot was quirky and fun. With the help of a wacky scientist (Christopher Lloyd), Marty McFly traveled back to 1955 in a DeLorean turned time-machine. Once there, he met his parents, still teenagers, but his presence interferes with their connection. Realizing that if he doesn’t fix things he might never exist, McFly spends much of the film ensuring they fall in love and get married.
As I watched, I couldn’t help to daydream a bit, thinking about my own parents when they first met. They each (separately) went with a close friend one Labor Day weekend to a resort in upstate New York. The morning after they arrived, they were the only ones that showed up early for breakfast, and so the staff seated them together. Despite the fact that my father had just taken a position to teach at the University of Illinois at Urbana-Champaign, within six weeks they were engaged. As they say, after more than 47 years of marriage and counting, the rest is history. I stared at the screen, absorbed in thought. “What could happen if I could go back into the future?” At the time (okay, this will sound extremely naïve and pathetic), I still believed that I was born with my condition, (at the time I didn’t even know its name, ectrodactyly), because someone inadvertently served my mom some bad fish while pregnant with me, which caused her to be sick for a brief period. My mind began to wander further. What if I could go back in time and help my mom to skip that meal or somehow prevent her from being sick while pregnant? Of course, I knew this line of thinking was impossible.
“If you could turn back time and I could be born with all my fingers and toes intact, I would emphatically say, no thanks.” I have said this on several occasions to a few people directly, and even in the context of a DHIFI public speaking event. In those moments, I could understand if those who heard me say it chose not to believe me. After all, watching me struggle to open a jar or ignore blatant stares doesn’t seem like something most people would want to endure. Certainly in my early years if a genie had offered me three wishes, there’s no question my first one would have been to be born looking like everyone else. Yet, even as I grew up wearing my difference literally on my sleeve, I learned to deal pretty well with the physical, emotional and social challenges. However, it took me years and giving birth to my difference (twice) to finally be able to embrace the two-fingered life. To my delight, however, I discovered that the achievement can come must faster, even in my own family. Just the other day when I was describing the topic of this particular blog post to our oldest son, Ethan, he immediately began to list all the reasons he wouldn’t change a thing. #tears
It is in this context that I happened to come across a YouTube video of a girl who appears in her late teens, named Rebekah. Rebekah was born with a deformity to her arms, along with several other internal physical issues. In fact, her situation was so severe she was considered “unadoptable.” Fortunately for Rebekah, she was adopted by a wonderful woman who disregarded warnings from the agency. As Rebekah describes, “My Mom never treated me differently….she is always cheering me on.” Like me at her age, Rebekah doesn’t seem to even know the medical term of what caused her physical difference. However, unlike me at that age, Rebekah has already achieved an outlook on life that can only be described as phenomenal. When asked, “How do your physical differences affect your life?” Her response was as follows: “My flaws have shaped every aspect of my life. Everyone of us has a burden. I have taken mine and turned it around to make me a stronger person. You have a choice. Let your burden define you or define you in a beautiful way. What may be viewed as a flaw to some people is a treasure to me. It has made me more determined, and I actually have no limits.” After pausing for a moment, then came her most beautiful statement of all, “My only limit is my mind.” And then came the line that was jaw-dropping for me. Rebekah added (with absolute sincerity in her voice), “Once when I was younger my Mom asked me if I could have normal arms like everyone else, would I want that. My answer was absolutely no—because I would be a completely different person.” I stared at the video, overjoyed for Rebekah and proud that Ethan already feels similarly to her about not changing his lot in life. It is no wonder Rebekah already knows she wants to be a motivational speaker. She was born to do the job.
The same week I saw Rebekah’s video, I also learned that Michael J. Fox was to appear in a new, self-titled show on NBC in the U.S. In 1991, Fox had been diagnosed with Parkinson’s disease. However, he did not disclose it publically until 1999. During the third season of Spin City, he made the announcement to the cast and crew. He had been hiding his disease while still trying to act. By the fourth season Fox retired from Spin City, aside from a few cameos, spent much time, effort and money on Parkinson’s research.
With a new show coming out, Fox was the feature subject in the latest Rolling Stone. In the article he claimed his condition actually makes him a more confident actor. “It’s part of the human experience,” Fox said. “You can’t cower from it, you can’t hide from it. You have to accept it, incorporate it into your life. If you have a loving, full life, it’ll just be part of it, just one of the colors of the palette.”
Last week I watched the first episode of The Michael J. Fox Show. In it, Fox played a character, Mike Henry, who has Parkinson’s. The show invites the viewer to gain direct insight into what it is like to experience life with Parkinson’s, or belong to a family with someone who has it. I was so taken with Fox’s ability to flaunt his difference, I can’t in this moment describe whether the show was actually bad or good (although I am sure others have opinions). What I do know is that by doing this show, Fox appreciates the value of being ‘less-than,’ and yet still demonstrate that life can go on, only differently.
By doing this show, Fox appreciates the value and insight he can bring to others.
By doing this show, he can offer humor, still able to make fun of himself, but this time with greater impact.
By doing this show, Fox appreciates that there is no point to trying to go back. His work going forward will be immensely more impactful than anything he had accomplished in the years prior to his diagnosis.
At the end of the day, those of us that experience life with seemingly difficult challenges have a choice. We can face those challenges with resentment, even viewing the experience as a form of punishment, or we can adapt and progress. If we are lucky, as Fox stated in his memoir, Lucky Man, we realize the following: “When life takes away, something of greater value is always given in return.”
With all of this in mind, I cannot agree more with both Rebekah and with Michael J. Fox. My difference (and my boys’) has not only shaped me, it has defined me, and has given me the courage to appreciate its inherent value to me, my family, and those we come across.