Miracle Boy Grows Up (9 page)

Soon medical imperative blows my cover.

***

M
y curving spine has overpowered the pinching back brace. My weak muscles can’t keep up. My back has nearly folded over itself. I look more like a beach ball than an almost-fifteen-year-old boy. And the orthopedist says the situation has become critical. Without surgery, and soon, breathing will become increasingly problematic as my body closes in against my lungs. I’ll become unable to sit in a chair within five years. My parents have insisted on getting second opinions. Now three of New York’s top orthopedic surgeons agree.

We pick Dr. David Levine of the Hospital for Special Surgery. He seems the most responsive to questions, even from me, and I like his sunny manner. His penchant for bowties is either a plus or a minus—I can’t decide.

To prepare for next summer’s surgery, I spend the better part of spring break in the hospital for tests. I’m given a private room in the pediatric ward. Disney characters are painted on the walls. Come on, I’m nearly fifteen!

Out my window you can see the East River. The hospital is on prime real estate! Mostly I like the small Sony Trinitron color TV on a pivoting gooseneck over the adjustable bed. I can’t change channels myself, but at least I can pick what and when to watch and ask a nurse for help.

For five days I undergo a litany of tests—breathing tests, blood tests, and so forth. I try to find the bright side, look at the nurses as sex objects, because that’s what the cool guys at school would do, but I’m too busy taking it all in and being bored to float any pleasure.

While I’m there, Mom checks into New York Hospital, which is adjacent. She says she can see my room out her window, but I don’t see hers.

She has a tumor removed from her ovaries. She’s forty-three, scared because ovarian cancer is what killed her mother. I’m convinced she’s worrying over nothing. She usually does. Mom calls her operation a “procedure.” What we don’t know is it’ll be the first in a long series of procedures. One afternoon, accompanied by a nurse, Mom drags her IV over the bridge connecting the two buildings and visits me in pediatrics. She’s weak and pale but tries to be cheerful, and I do too.

We’re also unaware that, that same April, disability activists are protesting at federal office buildings in ten major cities. The Rehabilitation Act of 1973 still has not been signed into law, four years after Congress passed it. Specifically, the guidelines necessary to enforce Section 504 of the Act, which bars discrimination against people with disabilities in federally funded programs, haven’t been finalized. Without those guidelines, the nation’s first disability-rights legislation is rendered meaningless.

Protesters believe newly installed President Carter may be sympathetic to their cause, but so far he’s done nothing.

The San Francisco demonstrations are the largest. Scores of activists occupy the local headquarters of the US Department of Health, Education, and Welfare, the body responsible for the guidelines. They camp out for twenty-five straight days and nights, sleeping in their wheelchairs or on the floor. They share urinals, catheters, and personal-care attendants, bathing in front of each other without shame—most are used to being undressed in front of others. I know the feeling.

These activists are inspired by the Black civil-rights movement, of course, but more than that, they have nothing to lose and nothing else to do. They’re unemployed or, in many cases, barred from all but a handful of mainstream schools. Having benefited from the latest medical advances, they’ve survived crippling, once deadly, diseases and accidents to live active lives with the aid of crutches, power wheelchairs, portable ventilators, guide dogs, sign language, and other modern marvels. Many don’t have their own homes or families to tend to. They feel they’ve been patient long enough.

At the end of the month the protesters are victorious! Joseph Califano, Carter’s HEW secretary, finalizes the regulations and the president signs them into law. A modicum of rights, at last! Power to the people! It will prove only the first battle of a long war, of an ongoing revolution, but it’s one from which I’ll personally benefit very soon. For all institutions that receive federal funds are now required to become handicapped accessible by 1980. That’s the year I start college.

***

M
eanwhile, 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 straight
er
, 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 begin wondering what I might actually lose from gaining a straighter back, and experiment in the bathtub with auto-fellatio. Contact! 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.

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.

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 stretched as straight as possible so it’ll be amenable to the Harrington Rods, which will be surgically implanted a couple of weeks later. In this position, 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 zeitgeist, 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 OR 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. The Recovery Room. A tube is inserted in my nose. Maybe it’s been there all day but I’m just now feeling it. It makes it hard to swallow my own saliva. The room is dark and crowded. Lots of people on lots of beds, countless machines beeping and humming. No TVs. I float in and out of sleep. Well, of consciousness. I’m not permitted to see my parents until morning. I’m not sure I’ll make it till morning.

I hear someone in another bed—an old woman, it sounds like—discussing the difference between “mottled” and “modeled.” She’s trying to explain a mark or a feeling on her skin and the nurse isn’t getting it. I want to help. I’m good at explaining. Mom always says words are my strongest tool, and I have learned time and again it is so.
Respect for the word
. . . But I can’t help this poor woman across the Recovery Room. I can’t get up and I can’t speak. This must be what it feels like to be buried alive, I think.

I try to memorize everything that’s going on around me, so I can put it in words later, in my notebook, but without my glasses I can’t see and without my brain fully switched on I have a hard time stringing together pairs of sentences in my head. Forget paragraphs.
Later
, I think.
I will write all this later
. But first I have to stop feeling like I’ve been run over by a Mack truck. Whatever a Mack truck is exactly …

Mack the Knife. Maybe that’s better. Stabbed by Mack the Knife.

When morning comes, I’m thrilled to see light. Whether it’s the fluorescent bulbs outside the Recovery Room or the summer sun shining through the windows, I can’t be certain. Either way it’s bright and new and I’m rolled out of the Recovery Room and I’m okay. Mom and Dad are there—here, coming up to my rolling bed. I’m transferred to another bed, one in the ICU, which is a big room with five or six patients near the nurse’s station. Each bed has its own little Sony Trinitron color TV. Feels almost like being home again.

Dr. Levine visits. He says he was able to do the two parts of the spinal fusion at once, in that one surgery. We’re ahead of schedule. “But your bones are like eggshells,” he cautions. “You need more milk.”

Later I’m given a small plastic plug to close off the trach so I can talk. It doesn’t come to me right away, and I struggle and gasp until at last I can speak in small increments.

Whenever I feel pain, which isn’t often, I’m given a dose of Demerol in my IV. It’s the most wonderful sensation I’ve ever experienced—a luscious, tingly warmth that spreads within until I fall blissfully asleep. Soon I have to cut back on the doses; requests for more receive a “can you wait a bit longer?” or outright denial. That’s okay. I’m comfortable.

After a week I’m still on an IV and a large, noisy ventilator, which I hadn’t noticed before. Tubes everywhere. Machines beeping and buzzing . . . It’s amazing I can sleep at all, and on my back yet! They’re not all my machines, I gradually perceive. Some belong to my neighbors in the ICU. We don’t interact. Maybe the families do, but not me. Mom and Dad might say a word to my roommates’ visitors, but I’m in my own world.

One night the lights go off and on again. Nurses are suddenly swarming all around me. The head nurse is called in, though she’s supposed to be off-duty. It’s a blackout, they say. Indeed, the nursing staff is jabbering about it. I vaguely remember the blackout of ’65. I was not yet three. It seemed Dad would never come home from the office. But he did and all was well.