I'm under deadline for Institutional Investor, among other things.
Anyway, without further delay, part 15 of "Miracle Boy Grows Up"...
Naughty and Nice
The "Naughty Bits"
By now Joanie and I are considered girlfriend and boyfriend.
At my apartment, in my tiny bedroom, when and where no one else is around, we decide to undress.
For me the most burning question is, how? How to manage it logistically?
Under the pretext of needing a nap, I ask Inez, our housekeeper, to lift me out of my wheelchair and put me in bed. Inez is the only one home besides Joanie and me, but somehow it still feels like we're done.
Once Inez has left the room, Joanie closes the door and I instruct her how to open my jeans. She knows how, of course, but I feel she needs encouragement.
"I can't unbutton them myself," I explain matter-of-factly.
She insists on going first, and begins to lower her jeans and underpants. I try to look but can't—I'm not sure what I see. Then it's my turn. To my surprise she says no. Fearing she's merely being bashful about helping me, I try my usual brand of reassurance. "You can do it. It won't hurt or anything."
I don't think about the implications of her actually touching me. We're just having fun, sharing. She continues to say no and I give up. Inez puts me back in my chair and we play ordinary board games. But it's clear: I'm not going to let my handicap get in the way of my romantic life any more than I let it detour my education or anything else.
It's a lesson I'll carry with me long into adulthood, when it really matters.
In 1968, the Muscular Dystrophy Association of America's Labor Day telethon is broadcast outside the New York metropolitan area for the first time. Launched in the early-50s as an occasional four-hour fundraiser on a few New York television stations, it became a 19-hour star-studded TV event on Labor Day 1966, though still within tight geographical boundaries. In 1969, when I'm seven, I'm invited to be its poster child.
We think highly of the Muscular Dystrophy Association in my household. It tells us about my spinal muscular atrophy, what to do to keep me healthy. Mom and Dad say it helps pay for Dr. Spiro, my neurologist. Someday it might find a cure so I can walk, they say.
On a fall Saturday afternoon Mom takes me to a studio downtown—a large, mostly empty windowless space. At the back, under very bright lights, a quiet girl a few years older than I am stands awkwardly with the aid of crutches. She has short, dark hair and wears a short green pinafore dress that exposes leg braces. Mom says she's the outgoing model. I should speak to her for tips about what it's like to be a poster child.
I watch silently. The girl doesn't do much, just stands there as a camera clicks. Then a man in a suit waves for Mom to bring me over. I'm parked in my wheelchair next to the girl. Mom walks away. A fat man in shirtsleeves starts snapping photos of the two of us. Am I supposed to be doing something? I squint at the bright light. After a while, we're told we're done.
Is that what it means to be a poster child?
The photo appears in a Sunday supplement my family doesn't normally get. I dream of fame.
In December I'm asked back. I'm to be photographed on Santa's lap. I'm beginning to have doubts about Santa—after all, I'm seven now—but I figure it's probably not the real one for the picture, since I'm not sure Santa does that kind of work. Some Jewish kids don't celebrate Christmas, but we do. Every year Dad takes Alec and me to see Santa at Macy's or Gimbels, and Santa always brings us presents. I'm not sure how he gets in since we don't have a chimney, and he couldn't get past the doorman and elevator men without being announced. Probably lands on our tiny terrace and comes in the glass door or a window. That's all Alec and I know about Christmas—what we learn from the TV specials. Nothing religious. We also celebrate Hanukkah and the other Jewish holidays. But a number of things about Santa just aren't adding up. For instance, there was the year I requested a Johnny Lightning racetrack and I got a Hot Wheels set instead.
For the photo shoot, I'm put on Santa's lap and told to smile. Finally some instructions, some direction! I plan to tell Santa one gift request and my parents another, as a test. Yet in all the hubbub of clicking cameras and bright lights I forget to ask Santa for anything. I'm still not sure he's the real Santa, but Mom says this will count as my Santa visit so I'm not taking any chances. I tell Mom I blew it, I forgot to ask Santa for anything, and she says I can tell her what I was going to ask for and she'll pass the word on to Santa. I still want to test if Mom is really Santa. "No, it's a secret," I say.
The friendly man in charge overhears me and offers to be my messenger to Santa. He smells nice as he leans over me, letting me whisper in his ear, and promises not to tell Mom. But later, as we're getting ready to leave, I see them talking.
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Till next time, thanks for reading.)
Till next time, thanks for reading.)