by Ben Mattlin
At a friend’s party one night, I begin kissing a girl who was always just a good friend before. Or maybe she starts kissing me. It goes on a long, luscious time, but only so far. I don’t notice or understand when something changes. Maybe a neighbor complains about the noise. Whatever the cause, the party is abruptly over. I ask someone to call Richard, tell him to pick me up. The interlude is never mentioned again.
But over spring break, another female school friend visits. We’re supposed to rehearse lines for the class play. Unbelievably, there’s a button missing from her blouse. Soon all her buttons are open and she has no bra. I haven’t liked her in that way before, but hey—tits! I’m in my motorized wheelchair, and drive myself close to where she’s sitting. From that vantage point, I’m able to reach a hand over and feel her breasts. But I don’t really know what to do with my fingers. We kiss with tongues, which feels nicer than I would have thought, but then she winces. “Your fingers are cold,” she says. The phone rings, and Richard—oblivious at the other end of the apartment—says it’s Dad. After the phone call, the lusty mood is broken. Though she is willing to continue, I say no. It just doesn’t feel right.
Soon she’s on her way home, both of us confused. I can’t help noticing that my social life wouldn’t be possible if Dad hadn’t moved out and Mother weren’t engaged in an active social life herself.
That is, when she’s not sick in bed all weekend from radiation and chemo.
***
I get in every college I applied to, with one exception: Yale, my favorite, where I’m wait-listed.
An agony of indecision ensues—until it dawns on me. Like it or not, for better or worse, to have Harvard on my résumé will serve me well. Especially since I’m not naturally gifted with scholarly talents. Or perhaps because a guy in a wheelchair needs all the credibility, the merit badges, he can muster. Not that the same couldn’t be said of any of the other fine schools. But Harvard seems the prototype. The original. Plus I can picture a sort of punk rock cool to being an iconoclast among the ancient bricks and ivy.
Those are the only terms under which I will go. I will not choose Harvard to uphold a family tradition. I’ll go in my own way. If I think about it at all, I suppose it doesn’t hurt that Alec is there in case I ever need help.
So that summer, Dad starts talking to Harvard about my specific access requirements. At fifty-three, Dad still likes solving problems—or rather, he doesn’t accept a degree of blind faith, of unresolved mystery, which is all I’ve got to rely on when it comes to gauging how I’m going to cope at Harvard.
“No idea,” I say, when Dad looks at me for reassurance about how I’ll manage. “But I’ve always coped before somehow, and somehow I’ll do it again.”
Per my parents’ divorce agreement, I spend about half the summer at Dad and Barbara’s. The house they moved to in Stamford to raise Jeff is a big two-story with four bedrooms. Three stories, if you count the finished basement. They installed a small elevator for me.
Also per the divorce agreement, Dad takes over primary custody of me after high school. Which shouldn’t mean anything to me—mostly has to do with financial arrangements between my estranged parents—but it does. It sits heavy in my gut. I’m Dad’s now.
What’s worse, I’m spending extra weekends here while Mother undergoes more radiation treatments. For some time now she’s been wearing weird wigs. She hopes no one notices, and I hope so too, though for different reasons. It seems almost weirder to have a mother who wears a wig than to have one who has cancer!
***
One weekend Dad and I visit Cambridge. We meet Thomas Crooks, the Dean of Harvard College—a tall man with a warm, syrupy voice who looks precisely as you’d expect. Pipe-smoking, dressed all in tweed with elbow patches, even on a warm summer afternoon. He’ll become my main contact point at Harvard for issues involving accessibility, though he’s not actually a user—that is, not disabled—himself.
Crooks introduces us to Will, a graduate student he’s appointed to oversee handicapped undergrads, a new position born of recent federal regulations. He’s not handicapped either.
Still, Will is likable—a blond, curly-haired, energetic camp-counselor-type. As he demonstrates the college’s new lift-equipped van and a modern freshman dorm called Canaday—which has two ground-floor, wheelchair-accessible suites, each with a big living room and either two or three adjacent bedrooms (one of which could be filled by a live-in attendant)—I remain guarded. I’ve always preferred taking my disability in stride, getting by by winging it, not by taking a cold hard look at my limitations or needs. Certainly never explaining them to others. How the hell should I know how many inches wide my big motorized wheelchair is?
Throughout the trip Dad is jovial and proud. Lots of handshaking, pats on the back, and Harvardian camaraderie. Not sure I want to be a member of the order, but my sense is they are damn proud of it and absolutely confident that Harvard will do the right thing. Later, I will write about these first encounters in the student weekly newsmagazine, the Harvard Independent:
People seemed interested and enthusiastic about having a student like me. The place was willing, but the works remained practically untried.
. . . I am not afraid of a school designed for the ambulatory. But I was planning to live on campus; frankly, I was anxious about how a college, especially a Harvard, could effectively accommodate me. Let’s face it: this place is old. It’s full of cracks and bumps and stairs….
[I soon learned] the University was busy planning for my arrival. I was phoned by the Freshman Dean Office [sic.] for the dimensions of my widest and heaviest wheelchair. As the summer progressed, I found myself engaged more than once in conversations with the FDO, particularly with Will…, a senior adviser. We discussed every aspect of my life (and I mean every).
I was forced to consider questions I couldn’t begin to answer. Daily activities I had never thought twice about before were suddenly objects of scrutiny. How big should a bathroom be? Did I really need a tub or would the shower do? Could I open the front door to my suite by myself? The future was nebulous; all I could do was guess at the answers.
When we circle back to Crooks’ office, two disappointments undermine the conviviality. First, we’re told that the extra bedroom in the accessible suite, for my live-in attendant, won’t come free; Dad will have to pay for it, too. Second, I can’t have a roommate, just the attendant.
“I’m confused,” I stammer.
“We don’t want to put any undue burden on other students, whether explicitly or implicitly,” explains Henry Moses, another dean. “Perhaps when you’re a sophomore …”
Never mind any undue burden on me. The burden of isolation.
***
Before Labor Day, Dad puts an ad in the Boston Globe for attendants. We figure one live-in during the week and another on weekends. I’ve never had a live-in attendant before. I wish Kenny could move with me but his wife’s just had a baby.
Again, my mantra: Somehow I’ll manage. I’ve always coped before against unlikely odds.
The first candidate we interview on a subsequent visit to Cambridge is a man in his thirties, an aspiring cellist. Dad likes him and doesn’t understand when I say, afterward, “Yes, but he’d be working for me, not you.”
My favorite candidate shows up later—a Harvard junior planning to take the next year off. His name is Michael. Tall, dark-haired, personable, he smiles a lot and seems to get my jokes. I think we could be buddies. That’s good enough for me. I don’t consider why he’s taking the next year off.
In the final days of summer I get my first new motorized wheelchair in more than seven years. It’s supposed to be tough enough for cobblestones and snow, and I intend to use it all the time, not just indoors. Which is something I think I’ve been wanting a long time but wasn’t technologically practical before. The obvious negatives are, it doesn’t fold up into a car trunk and is too heavy to lift up steps without a team of strong men. There are, I will discov
er, less obvious negatives, too.
When the big day comes, Dad arrives at the Beresford with a U-Haul attached to the lumbering Checker. He loads it while Mother fusses about what not to forget. It’s hot and humid and Dad’s sweating profusely. Mother’s bugging him about carefully stowing my precious possessions, and I can see Dad’s going to lose his temper. What I can’t determine is whose side to take.
Finally Dad gets me and the new electric wheelchair. Mom waves from the corner and I stare out the window. It will be the last time I see her standing.
CHAPTER SIX
MAMAN EST MORTE
1980-1981
“What makes you a writer? You develop an extra sense that partly excludes you from experience.”
—Martin Amis, in The Paris Review, Spring 1998
Before Columbus Day weekend, when freshman parents visit, Alec calls to pass on a message from Bob. Mother isn’t well and might not be able to visit Harvard after all.
“I’m sorry, Ben. But I could visit you.”
I’m listening to him through my new speakerphone. The phone company has supplied me with one just like the one I saw in Berkeley. I have to dial out to make calls, using a regular touch-tone phone, and then transfer the call to speaker, but I can easily tap the remote button to answer when the phone rings. I keep a list of important numbers next to the phone and speaker setup. The list includes several home-health-care agencies with winning names like “Quality Care” that make me never want to call them, ever.
Though he’s only a few streets away, in Lowell House, Alec and I have scarcely seen each other since I’ve been here. And then it was accidental. He’s never had a sense of responsibility for me, and I’ve never wanted to have that kind of relationship with him. Decades later I’ll realize that he’s never helped feed me or taken me to the bathroom.
In the vastness of Harvard, I figure he’s giving me my space as much as he may be preserving his own.
“’S’okay,” I say. “Just wonder why Bob called you, not me.”
“Bob’s a boob.”
“Yes. Bob’s a boob.” Then something occurs to me and I add, “Should we do something? For Mother, I mean.”
Long pause. In my mind I’m going through the possibilities . . . send a get-well card? Call on the phone? Surely not send flowers!
“How the fuck should I know? Boob didn’t say anything like that. He just wanted you to know about Freshman Parents’ Weekend.”
“Why didn’t he just call me, then?”
“Why do you ask stupid questions? I guess he called me because I’m the Big Buzzy!”
That’s our old childhood slang for him. Short for “big brother.” And I was Little Benjie.
Privately, I take it back. He has felt responsible for me. But in a patronizing way, nothing practical or helpful. So I tease, to bring him down a peg. I tease and he curses. Then we both curse and tease. This is the pattern with us. Even now, neither of us talks about Mother’s health. We both know what’s going on, so why talk about it?
The next day Bob calls me. Maybe Alec told him to, or maybe Bob decided he doesn’t like using Alec as messenger. They’ve never gotten along very well. “Your mother wants to visit you,” he says. “She probably shouldn’t, but anyway, I’m going with her, to help out. All right?”
Yes. Of course. But it’s a rhetorical question, right? What’s he really asking me?
“Ben, your mother is having a lot of difficulties. I don’t want you to worry—she doesn’t want you to worry—but you understand? This is from the cancer.”
“Mm-hmm.”
“Just thought you should understand. Before you see her. “
After we hang up I call Alec, but no one answers. I should let him know what Bob said—that Mom is coming up after all but isn’t well. I wonder if I’ll remember to call Alec again later. I wonder why Bob is so worried. Mom has had cancer for three years now. She’s had bad spells before. She always bounces back. We’re pretty used to it.
Nothing to worry about.
***
When they arrive, Mom can scarcely walk by herself and leans on Bob for every step. She smiles wanly when we make eye contact, struggles to bend down to kiss my cheek, and then has to sit down. We go inside my dorm suite.
I don’t think we’ve ever sat across a table from each other like this just to talk. We’ve always been an integral part of each other’s daily lives, ever in the background or foreground, never so separate as to need to catch up. She’s moving like an old lady yet somehow I am unable to see her that way. She still looks well put together, just tired or weak or clumsy. Have days like that myself.
Too long a quiet moment passes. What on earth should we talk about?
Another, more chilling question courses through me. Should I ask about her health? Wouldn’t that be the mature, polite thing to do? Yet that would mean that I noticed. I think she’s trying to pretend things are fine. There’s a line I feel forbidden to cross. Like a big pimple on someone’s face or a piece of spinach stuck between a companion’s teeth—glaringly obvious, rude to call attention to. I let her lead, and it becomes clear that her health is the last thing she wants to talk about. With me anyway.
“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.
***
The 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.”
