“When I’m out walkin,’ I strut my stuff—let me go on…like a blister in the sun. Let me go on…big hands I know you’re the one.” –Blister in the Sun, Violent Femmes.
“Meg, let’s do it!” To me, the proposition was a no-brainer. Nancy and I had met only the week before at Interlochen National Music Camp. She had come from New York to play harp and, although I played the trombone that year in high school, I applied to and was accepted into the camp’s elite Mixed Choir for the summer. Interlochen also offered various extra-curricular activities and one of them was to produce a weekly radio show.
Nancy’s idea was to do the radio show together. We’d get to hang out in the studio together, play our favorite music and broadcast it to the campers in the evening. In those days, I would get excited by music from the Violent Femmes and Depeche Mode, among others. But what I felt most excited about was expressing myself. There was something exhilarating about being able to share my feelings with an audience. Over the summer weeks the show progressed and the two of us developed a common rhythm for our banter. Then one day Nancy commented that this was so much fun, one day, “we should take our show to TV.” I grew quiet at the thought and inserted “Blister in the Sun” into the playlist, hoping Nancy wouldn’t notice my sour reaction. She just didn’t understand. Radio was perfect for me. It meant my disfigured body could be hidden and people could focus on my thoughts and whatever else I wanted them to appreciate about me. Television was out of the question.
I am not sure what was more intriguing to me this week, finally being able to watch the 30-minute TLC show “My Extraordinary Family” that John, the kids and I filmed last November, or experiencing the reactions to it by the public. Rewinding for a minute, in October of last year I received message from a producer in Hollywood who had taken note of my blog and website. What started out as an initial exploratory email quickly transitioned into a Skype interview between our family and the producers, followed by several lengthy telephone conversations with other senior producers.
From the start, we were reluctant to go on camera or allow our family to be profiled on such a big network. I have certainly come far from those days in my youth when I hid my hands in my pockets or behind my back in every photograph and felt self-conscious around anyone who wasn’t family or a good friend. For much of my life you couldn’t have paid me a million dollars to display myself on television.
Yet our reluctance was less about my personal concerns and mostly about the risk we would be taking by giving up the right to edit or review the show or otherwise control how our family would be depicted (that was part of the deal). Up until this point, the writings and stories about us that have made it to a wider audience have been under my control and that of my fabulous senior editor, John. Okay, it is true a few years ago I agreed to a very public interview in front of millions on Today (NBC) about an article I had written in Parents magazine. But this TLC project was without question very different. The night before we signed the contract, I struggled with giving up those rights, practically praying for a sign whether to move forward with filming (or not). And then, I received an unexpected email from a mother I didn’t know and I felt as if my decision to do the show was made for me. She was already a mom to two visibly “perfect” children, yet had always longed to adopt a child with a physical difference. Her husband, however, had refused, questioning why they would move forward with such a selfless act, interrupting their lives and the lives of their children. Feeling desperate, she described her final attempt to change his mind…she asked him to read my blog. According to her message, that next morning after spending much of the night reading, her husband changed his mind. That had actually all happened the prior year, and my eyes moistened when I realized that attached to her email was a photo of her and her family, beaming, with their newly adopted child.
And so to me, taking a leap of faith felt purposeful. It certainly wasn’t for fame, but if my story meant that broader audience could watch my family and know that life is not only manageable with (and parenting) a difference, it is beautiful, then it could be worth it. And so I determined to flaunt on film my shortened forearms and hands, and even summoned the strength and courage to display my bare two-toed small feet. My days of hiding my body were behind me. On the day we filmed me trying on shoes for the episode, I removed my sock on camera in an act that was scary, but ultimately liberating.
Ironically, the night of the premiere of My Extraordinary Family, I was nowhere near my family. Instead, I was alone in a hotel room out of town, preparing to speak at a professional conference the following morning. During the airing, I sat in my room texting with my literary agent, Lisa, while simultaneously exchanging updates on the phone with John and Ethan (okay, admittedly calming my nerves with a glass of wine).
To our delight, the show was fine. Sure, I felt a bit squeamish watching that shoe store scene, but ultimately I was incredibly relieved. To me, ”My Extraordinary Family” accomplished what I had hoped, that the public could appreciate and better understand that we were not only functioning within our own definition of normal, we had accomplished it surrounded by joy and love. And thankfully, our kids completely unselfconsciously, enjoyed seeing how they were portrayed in the episode.
Post airing, I received, as anticipated, numerous messages from strangers who had caught the show. Some described their feelings of admiration and many others simply thanked me for allowing themselves a window into our life. Mostly, they were encouraging. However, I was surprised to receive a message from a woman expressing that what she felt after seeing our show was ‘sadness.’ Her note was beyond complimentary, kind and supportive, but described her belief that, “the world must have been unkind (to me) growing up,” and that it seemed like I still battle with “those self-conscious feelings.” She ended offering to give me ‘a virtual hug.’
At first reading her comment rubbed me wrong. Why would she automatically assume that the world was unkind to me while growing up? Or how can I appear self-conscience if I just went on national TV baring my hands and feet? But, after sipping some coffee and digesting her message further, I grew to appreciate her thoughts. As much as possible, I choose to see the glass-half full and don’t dwell on past cruelties directed to me. But that doesn’t mean they didn’t happen, only that they were rare enough not to leave much scarring. And, while generally I don’t think twice about wearing sleeveless shirts in public any longer, that’s not to say I wake up in a confident, flaunting mood every day. This woman’s comment was just keeping it real for me. In truth, life with a difference can be a mixture of positive and challenging experiences, it’s just how you choose to handle them that matters.
Now looking back almost a week after strutting our stuff on national television, the feedback we’ve received confirms that the effort was not only worthwhile, but actually extraordinary.
Although some people think that the line about hands in the song, “Blister in the Sun” by the Violent Femmes was either referring to G-d or masturbation, according to lead singer Gordon Gano, neither was the intent. Gano says he wrote this song about a girl he had a crush on in high school. He was sensitive about his small hands and then someone at school came up to him, held his hands in the air, and exclaimed, “Look what small hands he has!” So, he wrote the song from the perspective of a girl lusting after a boy with big hands. Telling the story years later confirms that Gano has clearly gotten over what others think.