Miracle Boy Grows Up (15 page)

At lunch the next day (I never go for breakfast), the Freshman Union is eerily quiet. The student body is in mourning. The radio stations play nothing but John and Beatles music all day, even bootlegs. That night there is a TV special about his life. I want to watch it. Michael has something else scheduled but promises to be back in time to turn on the TV for me. He is not.

***

F
red, one of my weekend attendants, comes with me to New York over Christmas break. He stays in Mother’s bedroom because she’s not there. She’s at Bob’s apartment on Fifth Avenue. Fred walks with me through Central Park to visit her. It’s freezing outside, and Bob’s place feels warm and bright.

In the month since Thanksgiving, Mother has been living in a rented hospital bed in his dining room. Bob has hired a full-time nurse—an efficient older woman with an adorable Irish accent. I’m sorry to have forgotten her name now.

Fred and I settle in Bob’s living room. There’s a breathtaking view of Central Park, the trees bald and stark in the winter light. Mother is escorted in, shaky in a pink and blue nightgown. The nurse leads her to a high-backed soft chair near where I’ve parked. Mother can reach my knee and pats it. A ghostly smile brightens her drawn face. She is at once wan and—to me, at least—luminous. She holds my hand and asks to hear about how I’m doing. I look at her hard, then look down. She’s thin and gray, her skin transparent.

As at her Cambridge visit, I prattle on about all the good things. I talk with intensity, with a sense of wonder at what’s different in my new life. Not the bad stuff, of course—all the while aware that my life is expanding while hers closes in.

I go on too long, though my exact words are meaningless and quickly forgotten. Mother never interrupts or contributes except to nod occasionally or blink her full-moon eyes. After forty-five minutes the nurse reappears.

“Mrs. Mattlin—uh, your mom—needs to rest now.”

I smile. She helps Mother stand. Mother touches me on the head as she shambles past. Fred, who has been quiet throughout, rises like a Marine at attention and abruptly is at my side. He is short, and I can feel his breath on my hair.

At the elevator Fred asks, “What’s wrong? What’s she got?”

“Cancer.” My one-word answer. I don’t want to talk about it.

People have asked versions of the same question about
me
so many times I find that I have no patience for it. Does the precise diagnosis really matter? Besides, doesn’t Fred already know my mother has cancer? It seems like everybody must know by now! In my world it’s a big event.

***

B
y the end of 1980, the United Nations has designated the following year to be the first International Year of Disabled Persons. Already grassroots advocacy campaigns are springing up in far-flung places, such as Singapore’s Disabled Peoples’ International. And in Louisville, Kentucky, a young activist-journalist named Mary Johnson launches a newsletter about the budding disability-rights movement called
The Disability Rag
, which will become an unofficial lodestar. Within a few years the
Rag
will be written up in the
Wall Street Journal
in an article Dad will send me—an article that will open me to a new consciousness about “disability culture.”

The press also alerts the world to atrocious abuse that’s going on in the nation’s nursing homes. In 1980, Congress passes the Civil Rights of Institutionalized Persons Act authorizing the Justice Department to file civil suits on behalf of residents whose rights are being violated. The campaign continues even today.

Make no mistake: The world’s consciousness of the rights of and injustices toward disabled people is being raised in many ways. Yet I stay out of that orbit. I’m too busy coping with my own crises.

***

A
fter New Year’s comes finals. Back in Cambridge, I fire Michael and hire a new weekday attendant on my own, having watched Dad do the interviewing before. (Fred still comes on weekends but can only stay during the week for a short time.) You sort of prompt each applicant to fill in the blanks of their lives, like helping them put together a résumé, in a way, which none of them actually has. You always get two or three references and, as a last step, interview the references over the phone.

The new attendant, Tom, is blond, blue-eyed, and in his early thirties. Recently returned to Boston after a stint in the Army, Tom is a bit of a rough-and-tumble guy who smokes cigarettes, and I like the smell. I’m in a hurry to find someone, and he seems the best candidate because he’s quiet, orderly, responsible. He arrives at his interview on time and has decent references. Admittedly not much to go on.

There’s another school break after finals. Tom comes with me on the train to New York. One evening I go out with old high school friends and when they bring me home I have to wake Tom up. It’s only nine-thirty and he’s fallen asleep in what used to be Mother’s bed. I ask him for a glass of orange juice. He says okay and I wait. I sit at the dinner table and wait and wait and call him again. Alec is there but he doesn’t do anything. Tom finally comes stumbling into the room and says “What?”

“Orange juice, please.”

“All right! All right! I’m not your fuckin’ nigger, you know!”

I say, “Just wake up, man.”

(Tom is White.)

He gets the orange juice and then stumbles to the bathroom. Alec comes in, looks at me with his mouth open. He’s heard the whole thing.

The next day Bob takes the three of us to lunch at his favorite restaurant,
Les Pleiades
, on Seventy-fifth near Madison. When Tom gets up to use the men’s room, Alec tells Bob what happened last night. “Does he look hung-over to you?” Alec asks.

“No. It’s not something you can tell by looking,” says Bob.

“He says he was just sleeping,” I offer optimistically.

Tom returns. After lunch we go back to Bob’s, which is just around the corner, and spend a few minutes with Mother. This time she doesn’t even get out of the hospital bed. She tries to reach me through the side rail but mostly can only touch me with her eyes.

A few weeks later I have to tell Tom to leave. He’s had other drunk episodes. I make sure Fred is with me when I lower the ax, for my own protection.

Tom doesn’t protest much or make excuses. He packs a bag and evaporates.

Desperate, I call a home-health-care agency. It’s really a nurses’ registry but I explain that I’m not sick, I’m not a patient, I don’t need a nurse. The woman on the phone still doesn’t understand or can’t believe I’m calling for myself. “And who are
you
?” she asks me twice, as if I must be the parent or spouse of the person I’m calling about. Of the “patient,” as she says.

She uses words like
CNA
and
LVN
and
aid
. These refer to levels of training, I quickly discern. I explain the tasks and let her determine the appropriate level for me.

Fred is able to stay overnight. In the morning a large cheerful man from the agency appears. His name is Bill, and he’s a bit of a matronly aunt—in manner and speech, I mean . . . perhaps I should say a
“bearded
aunt,” since his face is dominated by a full red beard and glasses. He is in surgical scrubs, but I like him. He’s not cool like Kenny but he’s alert and bright and responsible and understands the job at hand.

In the spare bedroom in my Canaday suite, Bill finds Tom’s leftover chicken bones hiding in the desk drawers, empty beer bottles and cans under the bed, and cigarette butts everywhere. “Oh my, oh my! I
must give
this room a thorough cleaning ova!” he declares in his Bostonian brogue.

After a few days Bill suggests a deal. He’ll stay on as my live-in attendant during the week but not tell the agency. “You’ll save money—or should I say your dad will save money—and I’ll make more,” he explains. “You see? Simple.”

***

T
he summer after my freshman year at Harvard, Bill agrees to stay in New York with me. One day in early June we walk across Central Park to Bob’s place to see Mother. The nurse greets us at the door with a long face. “I’m so sorry,” she says.

I don’t get it. “’S’all right,” I say casually, trying to cheer her up. People have been sorry for me too many times.

Mother turns her head in bed to smile at me but this time says nothing at all. She doesn’t sit up, just keeps lying there looking at me. So I talk at her.

For some reason I tell her I’m still interested in religion and how, just last night, I was reading a passage in the Torah that felt profound. It was the psalm about what is mortal man that God should be mindful of us.

I ramble on to her warm, receptive smile.

“It struck me, that’s all, how fortunate we are, all of us, and how much worse things could be and perhaps should be considering how often people aren’t good to one another,” I say.

I expect my Tiny Tim prattle to be challenged. She doesn’t speak or even change expressions. Her eyes blink, but her lips are locked in a tight smile. That’s okay with me. I believe she is listening. And I mean what I’ve said. For me, reading Torah is going back to my roots—or my grandfathers’ roots, really— something I need to do just now. Not unlike re-reading old comic books or watching
Star Trek
reruns. Comfortingly familiar, stable, unchanging. It’s been rough since September. But I’ve survived my first year at Harvard. I’m duly proud and thankful, and wonder what right I have to express dissatisfaction, to ask for anything more.

When Mother starts to fall asleep Bill takes me home.

Alec and I have the apartment to ourselves, though Bill is in Mother’s old bedroom. Our only cable TV is in there, and Alec and I stay up late watching. We watch Ugly George and
Interludes After Midnight
—local public-access porn on Channel J. Then there’s some soft-core bimbo movie on HBO. When it’s over we go to the kitchen to get a snack and play Crazy Eights, a childhood favorite. It, too, is like comfort food.

The doorbell rings. It must be after one in the morning. Bill gets the door and when he sees who it is he murmurs “Oh” and retires to the bedroom.

Alec and I come toward the door. It’s Dad. What’s he doing here at this hour?

“I’m sorry, boys,” he says quietly.

Alec and I look at each other for a moment, lost, but the moment doesn’t last.

“Bob called me and I came right over.”

“From Stamford?” I ask.

“Yes. Bob thought perhaps I should be the one to tell you it’s over. You mother is gone.”

***

D
ad sits with us in the living room for a long time with only a dim light on. He helps himself to Courvoisier, which he knows where to find, and offers us some. “Ever had it?” he asks. “Fire water!”

I try a sip. He’s right. Fire water. We each take a glass.

“Aujourd’ hui, maman est morte,”
says Alec. “’Today my mother died,’” he translates. “It’s the opening
of Camus’ L’Étranger,”
he explains.

I’m not sure what that contributes to the conversation but I’m impressed. He really is the smart one.

After a time Dad suggests we get some sleep. He sets his tall frame down on the trundle bed in my room. I lie there not wanting to sleep. I want this day to go on. That is, I don’t want to let go of it. This day Mom
was
alive at least. Tomorrow she’ll have no claim on.

***

B
ob makes the funeral arrangements, per Mom’s wishes. Dad decides to go with us to the service and stands behind me the whole time. Somebody says there are those present who don’t approve of Dad’s being there. They feel he who caused my mother so much pain and sorrow should not be among those who mourn her. Dad maybe is the one who tells me this. He’s braced for it. He says he’s there for
us
.

The Frank Campbell Mortuary is packed. People come up to me like they know me but I don’t know them. I don’t have a black suit but wear my navy blazer. Dad, usually a stickler for proper dress, says it’s okay.

Afterward, he lifts me into the black limo that follows the hearse to Mom’s plot in Westchester County. Bob chose the cemetery and pays for it and the funeral, too. He says he asked Mom a while ago about her burial wishes and she said she just could not deal with it. She asked him to decide. She had only one condition: It should be someplace where I can visit whenever I want to. Someplace wheelchair-accessible.

During the long limo ride I feel hyper-alert. Perhaps I don’t know what sorrowful feels like. I believe Mom would understand. “Right behind ya, Ma,” I say inside my head, thinking Mom would appreciate the little joke though I can’t exactly explain it myself. It doesn’t make sense, and I decide to keep it private. It’s the first time I realize I’m thinking of her as “Mom” again, not “Mother.” And I never go back.

It’s a nice cemetery. That’s what Dad and Alec say. Alec notices that Ira Gershwin is buried in a mausoleum near the entrance. Who? I think. Alec is again making it clear that he’s better educated, better read, more sophisticated than I am. But then again, who gives a fuck who else is buried here? At the graveside ceremony I see one of Mom’s oldest, closest friends weeping uncontrollably.

Still I do not weep.

***

T
hrough most of the summer Mom’s friends invite Alec and me to dinner. Alec has a job in the city and I’m trying to write a short story, one that’s as good as a John Updike story Mom showed me in the
New Yorker
sometime ago. Some of her friends are especially concerned about me. I’m younger and was more dependent on Mom, they explain. But I’m not upset or sad, and reassure them I’m fine. Mom and I had a good connection. That last day I spoke with her about Torah. What could have been a finer farewell?

In fact, I’m unable to let sorrow interfere in my life. Sadness is too debilitating; it has been wrung out of me. Mom taught me that self-discipline, not crying or self-pity, will get me through. And I believe it’s true. (Historians in the budding disability-studies discipline might call this the FDR Model of strength not through but
from
adversity.)

Austin, my old camp counselor and first male attendant, who has moved to Israel and renamed himself Avraham, sends me a book about Jewish mourning customs. I try to observe all except for the difficult ones like sitting shivah and saying kaddish at Temple every Friday night. I have no residual issues or guilt. Not like Alec.