Miracle Boy Grows Up (10 page)

So I’m not worried now. But my nurses are. Very. They pump a sort of football-shaped manual respirator into my trach. They check my pulse repeatedly. They check blood gases, which involves a painful needle into the muscles of my groin. They’re relieved to discover my oxygen level is fine. The hospital has its own power generator, and soon my respirator is on again. It breathes for me and I become lazy. But I insist I’m fine. I’m not lightheaded. I’m not short of breath. At least I think I’m insisting. Mostly I’m smiling.

Soon the ventilator is removed completely, and I breathe on my own. I’m fine. Yes, fine. Always fine. At times I’m even allowed to roll onto my belly, propped on a special wedge-shaped pillow. As long as my spine is kept in alignment, it’s okay. With the pillow wedge, I can place my notebook down on the mattress and do a little writing.

One of my biggest concerns remains: Can I still touch my dick now that my back’s straightened?(With my hand, that is, not my mouth—“reach myself,” as Dad might put it.) Eureka! I can! I can! When the nurses remove the surgical catheter and wrap a soft, loose cloth diaper around my crotch, it enhances the experience!

***

A
fter two months at Special Surgery, I’m transferred to a convalescent facility in Westchester County. I’ve been so cloistered, the glimpses of New York in August passing through the ambulance windows blow my mind. The city looks beautiful . . . absolutely mesmerizing and inspiring. I feel like a tourist in my own town!

A tourist who’s strapped to a gurney, that is.

Sadly, the euphoria is temporary. Soon we’re in the suburbs. By and by we arrive at Happyvale, the institution I’ll call home for the next three months. The very name conjures a shadow-gray sanitarium from an old horror movie. I’m rolled inside and eventually parked in a large room with pale-blue walls and seven other kids. It’s a downgrade from the ICU. Only one TV, for starters.

One of my new roommates, a young boy in pressed blue jeans and a tucked-in button shirt with yellow stripes, greets Dad, who is accompanying me on the trip, with a stagy formal bow. “Hello, my good man!” the boy says. This kid is so animated and
not
post-op-like and, well, on his feet . . . the nettling question for me is, why am I in the same place he is?

It’s soon apparent that the staff here is less well trained than the hospital crew I’ve grown used to; they’re rougher, sloppier. My trach is never cleaned. I’m not bathed as thoroughly, if at all. And the place doesn’t have wedge pillows (unless, I later learn, you place a special order). Plus it’s harder for my parents to visit, being out in the suburbs. Within two days I’m begging for a transfer.

Can’t I stay in the city? Or perhaps be cared for at home? Dad calls Dr. Levine. My request is denied. There’s no extra room at any city hospitals. I need to stay here, to recover slowly and be professionally monitored. I’ll have to make the best of it. I imagine I’ve been captured by the Gamesters of Triskelion . . . Oops—I forgot. No
Star Trek
.

Happyvale has a sort of school I’m rolled to every day in my hospital bed, even though it’s summer. One thing I like about it is it has an extensive tape library. Through headphones, I listen to articles about politics, science, technology. Soon I have a volunteer—a groovy dude dressed in denim, with big dark glasses and a shaggy haircut, who smells of cigarettes, which is a scent I like, and calls me “buddy”—to read to me from
The Pickwick Papers
, my assigned summer reading (it’s not in the audio library).

When Mom visits, she brings food—kosher London broil and baked chicken, personal favorites, which aren’t on the establishment’s menu. I keep a stash of Doritos by my bedside, which, believe it or not,
is
marked kosher. I need someone to feed me, since I’m lying down. I learn it’s easier to swallow when rolled on one side.

I have to be rolled like a log, because the metal halo is now attached to a plaster cast that covers my torso and part of one leg. The leg pins have been removed, but my neck and, to a degree, hips are immobilized.

At one point I’m made to visit the institution’s psychologist. I’m wheeled in my hospital bed to his large, quiet office. He’s a surprisingly nice, young guy—bushy curly hair and beard of a color somewhere between brown and black. The facial hair does not obscure his eager smile. “Do you play chess?” he asks.

Rolled onto my side, propped up on pillows, I can see the chessboard well enough to tell him my moves. It’s a good game and it gets me out of my usual schedule of inane classes. I suspect it gets him out of his usual schedule, too. He seems to enjoy my company. (I’m embarrassed that now I can’t remember his name, or who won the game. Perhaps we played two.)

On a later visit he administers a rudimentary IQ test. After, he tells me I’m well above average. I don’t believe him. I think he’s just being nice. If anybody looked like he needed someone to be nice to him, it was I. He says no, he’s not just being nice. He insists his test doesn’t lie. And I begin to think maybe everyone else isn’t as smart as I assume they are.

***

B
ecause of being so stationary, I take physical therapy three times a week. Which reminds me of the pointless exercises of my early childhood, except this time I’m at an age to enjoy the attentions of my therapist, a really attractive brunette. As she flexes my knees and elbows, and orders me to work my fingers by buttoning and unbuttoning a raggedy old shirt, I only grumble slightly and, I hope, with the utmost charm.

The solitary television set in my room, mounted high, is on pretty much all the time. It’s the summer of the Son of Sam killer. Elvis Presley dies. A new actress will replace Farrah on
Charlie’s Angels
, and I enjoy reading in
People
magazine about her measurements (Cheryl Ladd’s bust is even bigger than Farrah’s!). But the weight of all this, the impact, is the dour realization that the world outside these institutional walls goes on, while I go nowhere.

One of my cellmates, er, roommates, with whom I have a begrudging affinity because he likes the Beatles and covets my tape collection, wonders aloud about the meaning of Elvis’ demise. “Does it mean Elton John is now the king of pop? They always called him the prince, so—”

Try as I might, I can’t block out all of it. One sound in particular will haunt me for years to come. It involves poor Murph, another of my roommates, a young man who is rumored to have lived at Happyvale
most of his seventeen years
!. It’s said he
could
go home but his family doesn’t want him . . . it’s said they visit only on Christmas, Easter, and maybe his birthday. I don’t know if any of this is true, but he never leaves his bed for a wheelchair (then again, neither do I), and his infrequent speech is hopelessly garbled, probably from cerebral palsy or a brain injury. You don’t need to understand his words to hear the urgency, anger, frustration, sorrow.

Yet worst of all is how the nurses tease him, loudly, every few days when they discover wet semen on his sheets, his catheter blocked or popped off. “Hee-ha!” the loudest one laughs. “What you been doin’?! You gotta cut that out! I ain’t cleanin’ up this mess no mo’! You a bad boy!”

(That’s how I remember hearing it anyway, a dialect I normally find comfortingly authentic and down-home suddenly turned sharp and menacing.)

I vow never again to be jealous of the cool, popular boys at school or resent others’ mobility and freedom. I’ve come to realize that I could have a lot less mobility and freedom than I do. I will remember how lucky I am. I’ll put the inimical, tough-guy Ben to rest forever when I return to the land of the living, and always try to appreciate my life just as it is. As long as it’s far away from here or any place like it.

I make this vow privately and never tell anyone. But it’s dead serious. The most religious experience I think I’ll ever have. A promise I make to God. “Let me out of here, and I’ll never forget.”

On Labor Day weekend, Barbara and Dad visit with their new baby, Jeff. Barbara barbecues a chicken in Happyvale’s outdoor area. My bed is rolled outside, too. We all try to pretend it’s pleasant and normal.

***

L
ife, however compromised, settles into a pattern. Back in New York, the school year is starting without me. One afternoon in early-September, Mom brings a manila envelope stuffed with my classmates’ good wishes. I know it was an assignment from Mr. Penis, but I’m moved nevertheless and reread every note. I call it my fan mail, and still have the package today.

In response, lying there like a slab, I ask Mom to take dictation. I want to write a sort of thank-you to my class, or really an explanation of what I’ve been going through—to head off rumors, excess sympathy, and most of all awkward silences upon my return. I want to submit it to the school newspaper. Still figuring humor is the key to improving my social standing, I give it the sarcastic title
What I Did Over My Summer Vacation
, and begin it with, “Have you ever wondered how dirt gets on the ceiling?”—a reference to the boredom of lying supine day after day. I end with, “Try not to be too jealous.”

Toward the end of my stay, I gather sufficient courage to ask one of the volunteer teaching aids if she’d like to go to a movie “when I’m back on the outside.” She’s a pretty, dark-haired high-school girl with a warm smile, and says yeah, sure, but I’m not confident she means it and I wonder how I’d follow through anyway since she lives in Westchester. Still, it’s good practice, I figure, since I didn’t do so well with my
Star Wars
date.

***

W
hen at last I’m returned to Special Surgery, I’m put in a regular room in pediatrics with one other boy and no individual Trinitron, just one big set for the room. One evening he asks me what it’s like to be a teenager. He must be about twelve. I don’t know what to answer.
Me, a teenager?
It’s then I realize my lengthy incarceration has made me older in some indefinable way, or at least
feel
older.

The halo and trach are removed and the cast cut back, though I must continue wearing what’s left, which is most of it, for several more months. Still, the end of my hospitalization is near! After four months that were supposed to have been six.

I’m truly lucky.

You see, the odd assortment of suffering I witnessed, especially at Happyvale, will leave an indelible mark. I’ll never forget Murph, my masturbating Happyvale roommate. After sharing a slice of life with kids like that, I cannot be the same again. I know exactly how the other half lives, and it’s not good. For those of us with severe disabilities, you can never be too safe, too well protected, because the institutional snuffing out of privacy and dignity can never feel so very far away.

I’ve lost a lot of weight, too, despite the Doritos—which feels good, since I was fat—and I’m taller than I was, since my back is straighter. I also now sport several long, downy tufts on my chin and will need to shave as soon as I’m released. A new man, within spitting distance of fifteen.

***

W
hen I return to high school, it’s late-October. The weather has turned chilly and gray. The kids are already settled into a new routine, but there’s little change from last year. It’s the same teacher, Ekkehard Piening; the same kids—there is only one class per grade—and, at Steiner, the routine scarcely varies from year to year or, I suspect, generation to generation.

To my surprise, I’m greeted by an abundance of bonhomie. The essay I dictated to Mom about my hospital experience has appeared in the school paper, and my words worked their magic!

I have to wear the upper-body cast, which protrudes from my shirt, but I have no shame about it and the kids are accepting. At recess I have someone tip my wheelchair back against the wall to ease the pressure on my spine—doctor’s orders—and even that goes smoothly. Plus my terrific attendant, Kenny, decides to stay on, despite the four-month hiatus. He doesn’t stay with me at school but takes me there and back every day and works late when Mom goes out at night. A medical student on leave, he’s smart and we talk about everything. He becomes the
nice
big brother I never had. I begin to see how important the quality of my attendant is to my very quality of life.

Every second weekend I visit Stamford, where Dad’s my attendant. Jeff is growing up, which is fun to see, but I have no friends and nothing to do there and it’s boring. My friends have become very important to me.

With each year of high school my roster of friends increases. More and more, I let them push my wheelchair in Central Park or on the street, which gives me a feeling of autonomy from the parental security blanket. I get a little nervous when they’re pushing my chair over the potholes and bumps, but I never let on.

At school, one of my friends, Nanci, remembers my penchant for cartooning and wants a drawing of a shirtless Robert Plant, based on a magazine picture she cherishes. Flattered, I take special care on the important details, which doesn’t go unnoticed. She squeals in delight when I present her with my penciled masterpiece. “Look—he even got the bulge in his jeans!”

Alec, still the big brain, aces his SAT and will probably go to Harvard, like Dad. I don’t want to go that route or be like that. I’ve learned to stop being a dork, trying to impress others with my intellectual chops, which I’m not sure I have anyway. The new Ben goes with the flow, lets the good times roll, and never forgets that misery and suffering are as close as my shadow.

When time comes for me to take the SAT, Mother—as I’ve taken to calling her, to show my maturity—gets me tutored. She knows I haven’t had Alec’s academic training. Mom has become happier, except for the weekends of chemo- and radiation-induced nausea, during which she hides in her bedroom. She’s become an item with a man named Bob, another writer and Harvard grad, like Dad. She’s also working full-time at a small publishing house. Though she complains that it doesn’t pay much, she insists she enjoys the camaraderie and intellectual stimulation. She’s even trying to write her own book about having cancer. She says when it’s published she’ll take us to Europe.