Monday, January 3, 2011

Part 34 of "Miracle Boy"

Happy New Year! Crushing deadlines safely behind me, I'm ready to re-begin.

But first…

I'm looking for suggestions. Been working on a new piece for NPR about media images of disability--specifically, the way certain soft-news and reality TV programs portray people with disabilities as scientific oddities or "amazing but true" objects of medical curiosity--and I could really use your help.

You see, the examples I originally came up with were all from the Discovery Health channel, which ceased broadcasting at the end of the year. So I need new examples.

If you encounter any, please e-mail me pronto. The best way to reach me is at

One more thought: Is it just me, or has the time finally come to call the year "twenty-" etc. instead of "two-thousand-" etc.? That is, can we call the new year "twenty-eleven," not "two-thousand-eleven"?

It's a lot simpler, at least to my ear.

Actually, this has been a pet peeve of mine for some time now. I've been waiting for the right moment to happen. I've wondered, when would the changeover occur?

At last, a possible answer: Now!

Why now? Let's face it, "eleven" is just too long a word. It has three syllables!. So altogether, "two-thousand-eleven" is six syllables. "Twenty-eleven," on the other hand, has only five. See? Simpler.

One thing, at least, is clear: I've been on vacation too long.


In the months that follow, I feel I'm making a little history myself—or at least approaching a Big Event. The hospital days in April were just preliminary. The Big Event is this summer's surgery.

No one has ever spent a summer in a hospital like I'm going to spend the summer in the hospital. There will be a series of operations culminating in a spinal fusion—which will attach pieces of metal called Harrington Rods to my pretzel-like spine. The rods won't make me completely straight but significantly straighter, which is the best we can hope for. I'll be in the hospital for three or four months, with a two-month interval at a rehabilitation facility. In all, six months under institutional medical care. Summer and fall. Or so goes the plan.

It's enough to make an ordinary teenager crumble, perhaps, but not me. This is my big battle, the travail I must endure to achieve stature, literally. I'm Ben-Hur facing the Roman galley ship. If he can row for three years, I can lie in an institutional bed for six months. In characteristic fashion, macho fantasies come to my rescue.

At Mom's urging, I start scribbling my fears and expectations in a notebook. I will keep a journal before, during and after. At the very least it gives me something to do with my pent-up energies, at once a focus and a distraction.

I began wondering what I might actually lose from gaining a straighter back, and experiment in the bathtub with auto-fellatio.


A dirty little secret of the extremely scoliotic! Yet I come away without a clear understanding of what all the fuss is about blow jobs.

When school's out, in early-June, I have a couple of weeks free and arrange to see Star Wars with a girl from school, my first half-assed attempt at a date. We get our signals crossed, however, and I become impatient waiting for her to call back. I end up seeing it alone and don't enjoy it. My pre-hospital time feels too precious to waste on waiting around for the phone to ring. Sorry, babe.

Finally, I am again admitted to a private room in pediatrics. For the first few days, more tedious tests—X-rays, blood panels, whatever. Every time I pee it's measured, and when I don't a nurse asks me if I want to. They expect you to piss every hour! Then I get a preview of my coming traction, so to speak—a system to stretch my spine mechanically over the course of a week before the rods are actually inserted. It sounds laughably primitive, but Dr. Levine insists it's necessary and he's done it hundreds of times. Or I should say, he's done it to hundreds of other patients. He even produces a past patient as a sort of reference, I suppose, and to cheer me up and reassure me that this is not the end of the world. Thanks, Doc.

I'm awake when Levine drills holes into my skull—the first step of traction. I've been injected with a local anesthetic, and I feel nothing. Then a heavy metal ring is installed on my head—actually screwed into my cranium. They call it a halo. But aren't halos supposed to be light as air, luminous and ethereal? This is about as light as an iron.

A matching set of metal pins is installed near my knees. Again, "pins" is a misnomer. Pins are small and narrow. These are not. These hurt like hell. They are metal dowels that, like the halo, go through the bone; they stick out on either side. I complain for days about my right knee in particular. It throbs so much Dr. Levine decides to redo that portion. He moves the pin a centimeter or two. It's still sensitive to the touch but less painful most of the time.

Cords are tied onto the halo and leg pins, attached to pulleys with a weight at the other end. Yes, I'm being drawn and quartered! I'm lying on my back all the time now. My upper body may be elevated slightly, but the idea is to keep my spine straight. This goes on for about ten days, during which it's impossible to keep my journal. I'm again glad for the Sony Trinitron. I think I learn every episode of the Mary Tyler Moore Show by heart.

I try dictating to a small tape recorder, but it's not the same. I listen to music cassettes through an earphone, mostly Beatles. Which is not in keeping with the zeitgiest, of course, but since I was too young to fully appreciate the Beatles in their time it's not exactly nostalgia either. Besides, sometimes the coolest thing to do is not follow what everybody else is doing. I'm beginning to learn that.

In any case, no one from school will know.

When Mom and Dad visit—usually on alternate days—they bring me more Beatles cassettes and other music I request, such as Aerosmith, which I'm just starting to get into. Alec is in England and France with a high-school tour group. He promises to bring back British versions of Beatles LPs.

The day of the big surgery, Mom and Dad appear together very early in the morning, for pre-op. I'm sedated. It doesn't make me sleepy. It makes me giddy. As I'm being rolled off toward the operating room, I tell my parents, "I have one question. Before he cuts me open, I need to know if he's a kosher butcher!"

They find this hysterically funny. Dad laughs like a seal. He pats my foot, which is under several layers of sheets. He's always patting me. Mom shakes her head and says how very funny I am. Grace under pressure, she says. Not really. It's more a burnished reflex. Make light of a difficult situation. Find the humorous side of it. Put people at ease.

The lights in the O.R. are very bright. I want sunglasses. Instead, I meet the anesthesiologist. A face behind a surgical mask. He asks me to count backward from one-hundred. I get to ninety-six.

When I wake up, I'm being lifted by a gang of a half-dozen or more in surgical outfits. Lifted from one bed to another. There's a pain in my lower back, near my waist. I try to say "My waist! My waist!" but no words come out. I have a tracheostomy. Dr. Levine had explained this. I was likely to come out of surgery with a buildup of fluids in my lungs, and since I'm unable to cough, a tracheostomy will allow the doctors to suction out the gunk from my lungs. So for now I cannot speak.

Dr. Levine sees that I'm trying to talk. He tells the others to stop. He leans over me, and I can make out his rosy-cheeked face, his red curly hair, his clownish bow tie. I don't have my glasses on, but these things are unmistakable. "What is it? What're you trying to say?"

I like Dr. Levine for trying to understand. Yet I'm too dazed to think up an alternate explanation, a suitable vocabulary. I keep mouthing My waist, my waist. Finally he gets it. He feels under me, around my waist, but finds nothing wrong. "See if it gets better. It should go away." (It does, but I don't notice when.)

The next twelve hours are the most horrifying.


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