Miracle Boy Grows Up (14 page)

“Aren’t you cold?” she says.

“No, Mom. A little, but I’m fine. Autumn in Massachusetts.”

I called her “Mom” instead of “Mother.”

She wants to hear about what I’m doing. I talk randomly about my classes. I do not complain. The classes are large and difficult and I feel lost in the crowd. It’s not easy getting around such a large campus in a wheelchair. I have to preregister for classes, to make sure the ones I want are held in or moved to accessible locations. One Shakespeare class can’t be moved, so I’m taking it at night, through the extension school but for regular credit. In addition, the ubiquitous bricks and cobblestones of Cambridge are bumpy. I’m using my motorized wheelchair full time now, yet still usually have my new, live-in attendant Michael or a volunteer from the fledgling Disabled Students Office follow along just in case. I miss WNEW-FM, my New York indie rock station. And my old, trusted attendants Kenny and Richard. And the thrum of life in New York, the center of the world. But if any such remark accidentally slips I reflexively follow it with “but I’m coping” or “but it’s getting better” or “but I’ve been through worse.” I’m used to reassuring others about my well being. I’m usually more honest with Mom but here, now, she’s just another person.

After a short time she has to lie down.

***

T
he first time she mentioned her cancer to us was just before my first hospitalization. When I was in ninth grade, Alec in eleventh. I remember how she tried to sound very serious. Alec and I must have looked like we didn’t care, like we had better things to do. Mother often had serious talks with us about things that were on her mind—drugs, birth control—that never actually cropped up as true problems for us. So why take her seriously now? Such was my adolescent logic.

What happened in the three years since then was largely kept in the background. Here’s what we did know: Her hair fell out and she wore wigs. We were not to talk about her “illness” with others, especially not her colleagues at Western Publishing Company. “Why is it a secret?” I wanted to know.

“People might have funny reactions,” she said. “I’ll let them know when I’m ready.”

She did her research, trying to pick the best oncologist in New York. She kept a diary of the ordeal, was going to turn it into a book, she said. I still have the hundred or so pages of manuscript she did manage to complete—along with notes scribbled on scraps of paper and cocktail napkins, and memos from her agent urging her to get the damn thing done. Mother was a procrastinator, but then, how would
you
spend your final months on earth? At the typewriter or out in the world?

There were weekends after her treatments that she spent entirely locked in her bedroom. That’s partly why she hired Richard more. She hired Richard to stay overnight to take care of me. She was not to be disturbed. Once, though, when her door was open a crack, I saw her rushing, stooped over, from her bed for the toilet to throw up.

And another time we invaded her sanctum because it had the only cable TV in the house. She seemed fine about it—it was Sunday evening, and the nausea had mostly passed. Then I heard her on the phone with Bob. “Can’t you do something to help me? Something useful and constructive? Why? You ask me why? Because it hurts. I’m hurting. Do you understand?”

I pretended not to hear.

***

A
few nights after Mother’s visit I wake up and call out to Michael, the live-in attendant. I need to change my position in bed. My legs are stiff and my left knee hurts from pressing on the mattress too long in one position. It’s routine, happens two or three times most nights. We’ve strung an intercom between our two bedrooms, a sort of baby monitor, just in case. But this night I call and holler and shout and he doesn’t respond. I listen to see if I can hear him snoring or anything else that might clue me in. My left knee especially is hurting.

Using my stomach muscles, such as they are, I’m able to shake myself on the bed just enough to temporarily alleviate the painful pressure. But the relief is so short-lived, so ineffectual, I become even more frustrated. The pain grows unbearable—made worse by the knowledge that it could be eliminated so easily. WHERE IS HE? I shout out again and again until I don’t know what else to do. Eventually, begrudgingly, I must fall back to sleep because the next thing I know it’s morning and he’s there.

I wait until he’s gotten me safely dressed and in my chair before broaching the subject. “You certainly slept soundly last night, yeah?” I half-ask, half-accuse.

“Not really.” He chuckles in an aw-shucks manner. “I can’t stop yawning this morning—”

“Because you didn’t hear me last night when I called you.”

He acts completely surprised. “What? No. I—you—when?”

“I couldn’t see the clock but it was my usual leg-turning—I called and called!”

“I’m sorry,” he says, grinning nervously. “Um, I did go out briefly. Had to run to the library for a book. It was only a moment.”

I’m stunned, filled with fear-squelching hostility. He went out? He actually left me alone in the middle of the night? And surely it was longer than a
moment
. Left me in bed where I can’t do anything, can’t even get to the phone. I could be left alone sitting at my table, set up with a book or the electric typewriter. But not in bed. It’s my most vulnerable . . . Who would do something like that? Surely I’ve explained this to him before. Surely it’s . . . it’s unthinkable! Such negligence!

“You can’t disappear when I’m in bed,” I come back confidently. I hope I sound confident. I emphasize how immobile I am in bed. “Can’t even reach the phone,” I say. “Can I rely on you from now on?”

He nods, mumbles an apology. “I didn’t know—”

“This must never happen again.”

I’m tough. But I know there’s nothing I can do to stop him if he does disappear again. And I realize my life is now in the hands of someone I don’t trust.

***

T
o get to the basement office of the
Harvard Independent
, the student newsweekly, I have to get into my old manual wheelchair and be carried down a steep flight of steps. It’s easy enough to recruit muscular young guys eager to show off, but I’m not exactly comfortable being jostled by a wolf pack of strangers. I only visit the office once—on Comp Night, when the rules of the competition to be accepted on staff are explained. This is the way extracurricular activities work at Harvard. Everything is a competition.

There are snacks on a side table—well, bags of Doritos. I love Doritos but I’ve come without my attendant and there’s no table to pull into, no place high enough to put Doritos within my reach. So when offered I say no thanks. I say I had a big lunch. There are limits to how much help I’m willing to ask of strangers.

Actually, I can’t even decide if the problem is in me—my shyness, my physical disability itself—or something external . . . something to do with inadequate access. So I relegate Unscheduled Snacking to the category of Spontaneous Activities From Which I Must Abstain, and soldier on.

My first submission is a long feature about Harvard’s efforts to comply with new accessibility regulations. It’s accepted, published in a big two-page spread. It begins:

In the midst of the academic year and the deadlines that go with it, Harvard students—especially freshmen, who are faced with some new Core regulations—may feel frustrated, picked on, or even downright small. But the University has some new requirements to meet, too. As of September 1980, all school programs must have been made accessible to handicapped persons. With a campus as old as Harvard’s, this is certainly a challenging task, if not an outright impossibility. But a wheel-chair bound student can negotiate Harvard more easily than you might imagine. I know—I’m one, and I’ve been getting along fine.

Typically upbeat and breezy. Call it a puff piece, but I know how to please my audience.

This becomes my first experience as a sort of freelancer—writing stories in my dorm room and having someone else deliver them. My only interaction being by telephone. Not bad but I know I’ll never be a fully integrated member of the staff, never enjoy the heady camaraderie of teamwork, simply because the office is out of bounds for the “wheelchair-bound.” It occurs to me now that this is the kind of frustration I’d never admit in those days, even in an article about campus accessibility.

Still, I like writing—proud to be published on my first try, proud to have strangers stop me in the Yard to say, “Are you the guy who wrote that great article?”—and publish a few more pieces, even one cartoon. Quickly, though, the sense of being unwelcome, of being an outsider, grows burdensome. I tell my editor I’ve simply become too busy to keep up a regular flow of articles. Besides, I discover I’m not cut out to be a roving reporter. The Harvard campus is too big and inaccessible for that. So I quit the paper.

***

T
hree weeks before my eighteenth birthday, Ronald Reagan is elected president (for the first time). I can’t vote, but if I could I probably would’ve voted for him. I say probably because everyone I know seems to think that’s a bad idea. But I like Ronnie. I like the Republican ideal of self-determination. I certainly haven’t survived by whining and feeling sorry for myself, and the last thing I need is government pity. I also kind of relate to Reagan’s movie-soaked vision of the world, his devotion to fantasy to determine the best course of action. It’s always worked for
me
.

Soon, however, the Reagan Administration will seek to revoke equal-access regulations as acts of Big Government that fetter economic expansion by unfairly burdening the private sector and taxpayers. I would feel betrayed if I were paying any attention to politics.

One evening I’m heading to dinner in the Freshman Union, with Michael following behind—to be precise, we’re going through the separate wheelchair-accessible entrance. A passing fellow Canaday resident sees us and blurts, “I’ll see you later. Nine o’clock, right?”

Puzzled, I notice Michael is waving his arms frantically. The other guy suddenly glows red. I roll onto the wheelchair lift, wait for Michael to push the button. I wonder what he’s up to. What’s at nine o’clock?

I no longer trust Michael. But I can’t confront him now. I want my dinner.

Yet as we enter the dining hall, I can no longer control myself. In the safety of the crowd, I ask him about that strange little conversation outside.

“Don’t make me tell you,” he says.

I get angrier and angrier—borderline accusatory—until he finally caves. The truth: he’s throwing me a surprise birthday party. He has conspired with Alec, who doesn’t know about the other night, to host it tonight in Canaday’s Common Room.

I know I should be relieved. Flattered, even. But my attitude toward Michael has soured, so nothing feels right.

“I’ve got work to do,” I say, unconsciously channeling Chief Ironside grumpiness again, like in fifth grade. “And I don’t like surprises!”

He begs me to go along, for the sake of everybody involved. So I do. I do not believe this is why he disappeared the other night—and he doesn’t pretend it is. I’m still angry and scared. And suspicious. Is he trying to appease me, to distract me from his shortcomings?

Still, the party
is
a blast. The entire section of our dorm is there, along with a few other friends I’ve made plus Alec and his new girlfriend. I’m given an old Who album, the new John Lennon record
Double Fantasy
, and a Harvard piggy bank that still sits on my shelf today.

Alec and I haven’t spent any time together since Freshman Parents’ Weekend more than a month ago. I’m glad to see him though I haven’t missed him. He’s got his own, established cadre of brainy Lowell House friends while I’m trying to develop a hipper niche. Hipper in theory, anyway.

It’s not entirely true that our paths haven’t crossed, however. A couple of times we’ve spotted each other across the Yard or tooling down Mount Auburn Street. But we’ve exchanged few words. It usually goes something like this:

“Hey, Asshole!” he bellows at me with a big smile and wave.

“It’s the faggot!” I reply.

Laugh. Smile.

“How’s your ass?”

“Smaller than yours, freak!”

“Suck my dick!”

“Fuck you!”

I can’t yell as loudly as he does. Nevertheless, Alec guffaws at the top of his robust voice, so everyone in a hundred-mile radius can hear.

“Who is that, cursing you out?” asks a concerned passing stranger.

“My brother,” I answer.

The stranger looks confused. And I realize I am, too. Why is this what my relationship with Alec has become?

***

T
hanksgiving weekend, Michael comes home to New York with me. His family is in Colorado, too far to visit. Mother insists on hosting Turkey Day at our place just like she’s always done, only this time Bob has hired a couple of caterers to cook and serve and clean up. Mother is trying to pretend everything is normal.

In December Michael has more absences. Things start disappearing from my room. One evening I accuse him. I’m unrelenting, and he starts to cry. He swears he has not stolen from me, but confesses he has disappeared at night many times when I’m asleep. He goes out to drink, do drug deals, or meet the blonde girl from upstairs to share a few joints and screw on the Canaday Common Room sofa.

“I’m no good,” he says in tearful gasps. “All right? I admit it! I’m a liar and an alcoholic and I like drugs! I probably should be thrown out of Harvard . . . and would have been if I didn’t take this year off. But I don’t steal. I didn’t take your stuff!”

I tell him he’s betrayed my trust and he has to make it up to me. I give him another chance. After all, what are my alternatives? I have the phone numbers of a half-dozen home-care agencies but they’re expensive and it’s impossible to find a good male attendant. I don’t have a better backup plan. God, I wish Kenny could’ve come up here with me!

A few nights later John Lennon is gunned down. The Dakota is just blocks from the Beresford, my childhood home. I have a fantasy that I should have been there. This will be my generation’s Kennedy Moment, an instant frozen in memory forever.