Monday, July 5, 2010

Part 1 of "Miracle Boy”: Introduction

I was training my latest personal-care attendant in how to wash me ("first the soap . . . "), dress me ("slide one foot into the jeans leg, then the other . . . ") and lift me into my motorized wheelchair. He was a UCLA student with no medical background, which is just the way I like it. I do not want to be called "the patient."

Nevertheless, while tying my shoes he asked a question that was dangerously close to my tolerance boundary: "How do you stay so positive?"

I feel like I've been called "inspirational" more times than Jesus, Muhammad and Moses combined, but something about his question felt different. My earnest young employee was not commenting about something over which I had no control—the fact that I'd lived all of my then-42 years with a severe neuromuscular condition—but about my attitude, an attitude I had adopted and nurtured, a doggedly honed personality trait, a survival strategy, perhaps. He might have asked the same question if I didn't have a disability.

Usually the word "inspirational" was followed by, "You should write a book about your life. It would be so inspirational for so many people!" No thanks. In fairness, this may be prompted partly by the fact that I write for a living. I'm a contributing editor for Institutional Investor and, until its recent demise, Dealmaker and other magazines for the past 20 years. But please! Let survivors of abuse, cancer or war coax tears from readers' eyes. Not me.

To his credit, my new attendant did not in fact resort to the book spiel. What he did was get me talking, and that's when I realized it. I had reached a level of maturity from where I could look back at my varied experiences and not feel embarrassed. A book about my life would indeed be compelling and gripping. Especially considering the many changes in medicine, technology and disability rights I'd seen.

After all, I was the “miracle” who wasn't supposed to live past 10. Born with a rare form of a rare disease, spinal muscular dystrophy, I grew up in New York City (Dad was editor-in-chief of GQ, Mom a former television producer) and attended regular private schools before there were any laws protecting my right to do so. (Some cities even barred the disabled from appearing in public!) From one of my earliest memories—falling out of my wheelchair into a dark, smelly garage—to learning to use my brain and verbal skills to get what I needed, I always attracted friends and, in contrast to common lore, rarely felt taunted by school bullies. At 10, though, after my parents' divorce, I wrestled with divided loyalties—Dad took better care of me physically, while Mom was more supportive emotionally.

Eight years later I became one of Harvard's first severely disabled wheelchair-using freshmen—if not the first. Then Mom got sick. The next summer she was dead.

After college, I shacked up with my nondisabled, non-Jewish girlfriend and together we headed to L.A., where we got married and, after more than four stressful years in the infertility maze, had two terrific daughters.

It never occurred to me that someone like me wasn't supposed to do all these things. How indeed had I managed? What kept me going?
      [More in two days.]

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