Friday, July 23, 2010

Part 8 of “Miracle Boy”

The video clip is going strong, with 65 viewers over the past three days. And only about half of them are me!

Joking. I think. Not sure how YouTube counts these things.

If you haven't seen it, you don't know what you're missing. (How's that for an obvious statement?!) So click here already and take a look...

Here is the next little installment of my project, and it's a fun one. Then, on Monday, comes my newest NPR Commentary. I'll post a transcript here just as soon as it's legal to do so.

Gardez la foi!


I can't stand or raise my arms up high, but at this point I can use my hands pretty well. I can't cut my food but I do feed myself. I brush my teeth by mostly holding the toothbrush still and moving my mouth side to side. I have very weak muscles, that's all. I have full sensation. My arms and legs are skeletally thin, I have scoliosis which makes my left shoulder lower than my right, and my belly bulges because I have no abdominal muscles to hold it in. Alec sometimes calls me the Pillsbury Doughboy, poking me in my fattest ripples. It doesn't hurt much and I laugh. I have complete control over my bathroom functions. I'll be able to father children, I'm told. There's nothing wrong with my head, as Mom and Dad frequently point out. Dad went to Harvard, and brain ability is important to him. But when I get sick, it's very hard for me to cough effectively, and since asthma runs in the family there's always a lot of concern about my breathing. Normally it's fine.

I vaguely remember when Mom and I went to Johns Hopkins Hospital for my muscle biopsy, which confirmed the original diagnosis of amyotonia. I was three, and we took the train from New York. Mostly I remember being returned to Mom's arms after the surgery. I remember shivering and crying. I remember Mom's blue dress—a welcome contrast to the sickly yellows and pale greens all around—and being enwrapped in its folds. I remember confusion and fear. I remember returning home to Dad and Alec with souvenirs—a bright-colored pinwheel and my hospital ID bracelet. Alec promptly grabbed the pinwheel from my small hand. Mom and Dad scolded him, and he dropped it onto the floor and marched around the apartment in his pajamas singing silly songs in a loud warble. Besides the pinwheel, what he stole from me was the attention. I was powerless to stop him or to retaliate.

Alec is high energy and prone to what Mom calls temper tantrums. Mom says it's because I get so much attention from her and Dad. In turn, I get Alec's attention by doing funny voices and resorting to creative name-calling. I make him laugh.

"Why are you such a freak?" I say with stealthy calm.

"Am I fr-r-r-r-eaky? Freaky! Freaky! Freaky!"


"At least I'm not a Stu-ball, like you."

"I'm not stupid!"

But my heart isn't in it. Maybe I am stupid.

"I didn't say 'stupid,' Retard. But I'll bet you don't know how much sixteen times sixteen is?"

He seems so impossibly strange. So different from me. So aggressive. And probably smarter. Alec is eight and goes to a good school where he learns French and reads big books. I'm still five and can't read. I would be going to Alec's school, L'École Française, on the Upper East Side, but this elite institution refuses to take a kid in a wheelchair. Architectural obstacles abound, and who can predict what effect my presence may have on the other kids? It's 1968, and it's still legal to discriminate against the handicapped.


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