Listen for the piece during Morning Edition on July 26.
Meanwhile, here's the next installment of "Miracle Boy." It's short, so I'm posting it early...
FDR: a model for so many of us
To be sure, Mom and Dad don't exactly realize they're subscribing to the FDR model. They want me to remember I have nothing to fear but fear itself. Yet that afternoon, as Mom lectures me about speaking up and taking care of myself, in my mind I'm still falling down the garage ramp and smacking up against a stark reality: I'm undeniably, unavoidably vulnerable, no matter how much spunk I may possess. My new green wheelchair—a badge of growing up, of going to kindergarten, of greater independence—brings a host of unforeseen risks and burdens. Everything is double-edged! There can be nothing good without something bad! I'm not yet four, but I might as well be 40.
It's not right to call this premature self-awareness a kind of wisdom, though, because it's simply practical knowledge learned the hard way, an attitude derived from struggle. It's nothing to be proud of. The wisdom, if there is any, would come from knowing when to use this knowledge of vulnerability and when not to be dragged down by it. And that I have yet to learn.
Once iced, my purple finger continues to throb. It throbs for an eternity. I shy away from using my right hand to draw with. I blame myself a little for the accident. I could have remembered the seat belt.
For a month afterward Mom asks me to check my seat belt, but then she too begins to forget. She does not wallow. I want to get past it even more than she does.
So I learn to bury, or re-bury, my frustrations and fears. I will not let bumps and barriers make me fearful or reticent. Rather, I remind myself that hardships build character. They make me a stronger person.
It's a guise I can maintain for only so long.
Perhaps even then I do have an inkling about my life ahead: I can already sense it will be split along two divergent paths—the normal expectations of a son of New York Jewish liberal educated intelligent parents to go out in the world, advance, and take charge of his own actions and fate, and the dangerous, ineluctable fragility of the hopelessly, severely disabled.
To live with this dichotomy between upwardly mobile overachiever and delicate flower with what today is foolishly called "special needs"—to live with myself—I'll have to learn to navigate between or, better yet, balance, redefine and integrate these two discrepant identities and potential destinies.
It's a struggle that continues for the rest of my life.