Miracle Boy Grows Up (18 page)

But I suspect I would’ve been a stubborn cuss anyway, just by virtue of having to be—in order to survive. For me, sometimes the very act of breathing itself is a game of wills.

By August I’m spending a lot of time in Stamford, at Dad and Barbara’s. I left an internship in the city, at a famous rehab clinic on the East Side, when I realized it was one of those do-goodery keep-a-cripple-busy programs. I should’ve been clued in when the woman who interviewed me asked where I was in school and then said, “Harvard? Where’s that?”

“Cambridge, Massachusetts. Near Boston. You know, Harvard University—”

She nearly fell over backwards. “Oh,
that
Harvard! Hmmm—”

Not to knock the value of these occupational-rehab programs. Young men and women with all manner (and combinations) of disabilities, few educational or professional prospects, and even less in the way of financial resources, learn to answer telephones and direct calls or dish out cafeteria trays and other essential skills, earn a few bucks and feel good about themselves. But after two weeks I was certain I didn’t belong. Ostensibly, I was helping put together a newsletter for participants. But there was no adaptive technology available to help me figure out how to become more employable. I was just marking time, filling a space. Besides, there were at least three guys in the program named Rocko! It was a different world.

At Dad and Barbara’s, I soak up rays shirtless in their front yard and listen to WNEW. I’d developed a bad rash on my back anyway, which needed time to air, I reasoned. A few days of this and I grow restless. My younger half-brother Jeff is now five and off at day camp all day. His summertime nanny is a recent college grad from California.

No, she’s not blonde and leggy and doesn’t sashay around in a bikini. Her dark brown hair is cut short, and she wears glasses over her wide brown eyes. She’s come every summer for the past two years, so we’re used to each other. Most importantly, she’s used to
me
—the way I eat, the way I get lifted into and out of the Checker car, the way I rely on Dad or other help to get up in the morning and to bed at night, and the way I look with no shirt on.

I’d never paid her much mind before, other than noticing her large chest. But this summer she’s developed a delightful insouciance—doesn’t fly off the handle with rash, pretentious opinions as I’d at least imagined she did on our previous encounters. She’s more sure of herself, or rather more comfortable in her own skin, notwithstanding the occasional self-effacing giggle. Her wide-ranging intelligence and creative competence are evident in the way she challenges Jeff’s mind—telling stories with plenty of questions for him to ponder—whips up inventive art projects and challenging recipes in the kitchen (all part of her nanny duties), and in the evenings—after sharing a bottle of wine with Barbara—quotes Keats, Milton, and PG Wodehouse all while cracking shockingly naughty jokes.

Mary Lois is my logical next victim.

***

A
fter dinner one night, I suggest we take a walk. She agrees. In a clearing, she sits on a low stone wall while we chat. I tell her about things I like to do in New York. She tells me about her graduate school plans. We agree that Stamford is tiresome.

By moving my motorized wheelchair in close, I’m able to walk my left hand onto her blue-jeaned right thigh. She doesn’t push it off. Mentally, I search through my store of role models from TV and movies. Clark Gable might just grab her and plant a kiss. Not an option for me. For me, it has to be verbal. I have to get her participation, her complicity. But how?

Captain Kirk. There’s an episode of
Star Trek
that ends with him kissing a blonde (okay, there are dozens of those) on the
Enterprise
bridge. First he says something about having to remain in command; then she asks if a kiss would pose too great a disruption.

Mary Lois is a bit in the Captain Kirk role, it occurs to me. She has far-ranging responsibilities as a nanny and feels she must maintain a degree of decorum. Plus, she admits, she likes to be right, in control.

So I say, “Would it cause too much of a disturbance if I were to ask for a kiss?”

Later, she’ll tell me she was tempted to slap my face and walk away, but decided a better way to knock my smirk off was to go ahead and kiss me—hard, voraciously—then declare it’s time to go home.

I arrange to meet her later that night, after Dad has gotten me ready for bed and gone to bed himself. Or maybe I just decide that on my own.

Near midnight, I’m in my room, in pajamas, waiting for her. She doesn’t come, so I wheel down the hall to her room, tap the door ajar with my footrest, and softly say, “Knock knock” (because I can’t actually raise my arm to do it).

She sits in bed in her white and pink cotton nightgown and I park my chair beside. She has a small TV and we watch—honest!—a
Star Trek
rerun. After a while, I suggest we pick up where we left off outside. It’s always verbal with me.

After we’ve kissed a while, I urge her to undress. She shakes her head. “You’ll have to do that yourself,” she says.

“I would if I could.”

“Not tonight, it won’t happen. I have to get Jeff to camp in the morning.”

Regardless, I deliver the spiel I’ve worked out in my head. “You should know that I have weak muscles but full sensation. Everything works. I can’t climb on top, but don’t worry about hurting me. I’m not delicate. And it’s not contagious.”

She nods but doesn’t budge. Before I leave her room—before I go down the hall and wake Dad to lift me into bed—she kisses me on the top of the head. Disappointed, I nevertheless take this as encouragement.

A few days later she meets me at my apartment in the city—in its final days; we agree to go to a free outdoor Elvis Costello concert. Buses and taxis aren’t yet wheelchair accessible, so we “walk” the thirty blocks to the West Side pier. She’s in heels and a slinky pink cocktail dress, and men on the streets whistle and growl. On the return trek, I offer to ride her on my lap but she refuses. We stop for a drink. I buy her a flower. Though my intentions are carnal, I know my only chance of winning her is with cornball romance.

Back at the apartment—glad it’s still mine, for a little while longer at least—I ask if she’d prefer to sleep alone. I’m trying to be polite, but she almost seems insulted. I let her know I’m happy that she expects us to sleep together. I suggest she change in Mom’s old bathroom and not come out till I call.

My temporary attendant changes me in the other room and then politely sets me down in Mom’s old king-size bed. Once he’s left the room, I tell her the coast is clear.

More overnight dates follow. At the end of the summer we decide we don’t want this to end. I don’t know exactly what she sees in me, but I believe she’s eager to escape her small-town upbringing. In addition, she’s at a bit of a loose end work- and school-wise. I imagine she needs a calling, a sense of direction. Perhaps my complex life feels to her like something akin to a force of nature.

What she tells me is that, as a woman of just five-foot-two, she feels safe knowing I won’t dominate or hurt her physically. So ML stays on at Dad and Barbara’s and visits me in Cambridge every weekend. By the following June, though the Beresford is sold, I propose we live together. I am twenty.

Having aced the GRE but failed to get into a graduate program she likes, ML is amenable to just about anything. And I can’t take any more wrenching Sunday night departures. Every time, I cry uncontrollable torrents—only dimly aware that I’ve been saving up tears for nearly two years. Ever since Mom died.

1984-1990

“For me, everything’s too much and nothing’s enough.”

—Mary Karr,
Lit: A Memoir

S
omewhere in Oklahoma, it’s raining big, loud drops on the echoey raised roof of my shit-brown Ford Econoline 150 cargo van. The van, which I’d bought near Boston with Mom’s life insurance money, isn’t pretty but it does the job. That is, it’s big enough to fit me in my motorized wheelchair, and pretty much all my worldly possessions.
Our
worldly possessions, I should say.

ML—who’s driving—and I are en route to Los Angeles. Her family is there. We’re switching coasts, switching family-roots, welding a new life together.

On the van’s intermittent radio we hear about Ronald Reagan’s reelection. The first presidential race in which I’m old enough to vote, and it’s a disappointment. We’d both cast absentee ballots for Mondale, back in Connecticut before our big departure. Somehow being a college-graduate-slash-adult means registering as a Democrat.

(The election also happens to be the first under a new Voting Accessibility for the Elderly and Handicapped law, the provisions of which I innocently circumvent by voting absentee.)

Our new life includes a wheelchair lift on the van, thanks to Connecticut’s fickle vocational rehab department, which had evaluated me as unable to drive, even with hand controls. That’s okay. A born and bred New Yorker, I don’t exactly yearn to take the wheel.

In my wheelchair, I’m strapped in behind the driver’s seat. We’ve attached a tray table to my chair to hold snacks and a book. I try reading aloud to help ML stay awake and keep us connected, but the monster van has terrible acoustics and I’m not loud enough.

It takes five days to reach her childhood home—during which she’s my only attendant. This in itself is a bold development, a turning point. I’d been resisting having her do anything custodial for me, but the payoff in privacy— from parents and from paid outsiders—tips the scales. Plus ML really wanted to. She wanted to contribute to my well-being.

During my senior year at Harvard—while she earned a master’s in education and a teaching credential—we’d shared a two-bedroom apartment in Cambridge. Bill occupied the second bedroom on weeknights, Jay on weekends. So other than occasionally turning me at night in the bed we shared, ML did none of my caretaking. (Even at that, I tried not to wake her too often.)

The problem was, the paid attendants never took as good care of me as she could. Over time she wore me down with small kindnesses that grew bigger, more personal. Such as re-shaving my sideburns to even them out. Or plucking my most egregious nose hairs. Years later I’d become suspicious, even resentful, of how, for her—to steal an apt phrase I’d glom on to from an article about someone else—the validation of serving others could become a substitute for self-directed wisdom. But at the time I came to like, then depend on, her attentions.

One day, we drove in her car to visit a friend. When it was time to go home, there was no one to help lift me back into the car. So ML tried it herself. The discovery that she could lift me was revelatory! For a woman of five-foot-two, she has surprising upper-body strength!

Accelerating our itch to fly free was the odd way Bill had grown resentful . . . territorial as a mountain lion. “Now that you’re sharing a bigger bed,” he’d announced shortly after we moved to the sunny, thin-walled Cambridge apartment, “let’s say we alternate days making the bed, hmm? I’ll do Monday-Wednesday-Friday, and you, Mary Lois, can take Tuesdays and Thursdays— type thing.”

Yet soon she lost track of the schedule she hadn’t ever really agreed to in the first place. So Bill unilaterally took to making
half
‘the bed each morning. (I kid you not!) I wonder now how miffed he must’ve been to discover neither she nor I cared much whether or how the bed was made. Most days it stayed just as he left it, half-made.

ML’s haphazard housekeeping wasn’t Bill’s only target. He’d complain about Jay after the weekend shift—the way he’d parked my commode chair (a bare-bones wheelchair with a hole in the seat, which rolls over the toilet), for example. “It should be
here
, not there,” he’d holler, though no one but myself was around. “Tell him to cut it out!”

Bill’s idiosyncratic tantrums aside, I was learning a key skill: how to juggle multiple attendants—maximizing each one’s strengths, trading off tasks, constructing flexible boundaries, soothing egos.

Still, Bill was becoming scary. Yet the more prickly he became, the more snugly ML and I bonded. More and more it felt like us against the world.

After graduation, there wasn’t much keeping us in the Northeast Corridor. We spent the summer in Connecticut, at Dad and Barbara’s (with a new part-time helper, who didn’t last long). ML completed leftover course work and I found a temporary job at IBM. I wrote short articles for employee newsletters— one of a team of student interns at a corporation eager to flaunt its progressive hiring policies. Suit and tie every day. Somehow managed to feed myself small cheese sandwiches at lunch, with minimal help from coworkers. Hand-wrote my articles (there were plenty of secretaries to type them). Mostly I watched the clock.

That was the summer of IBM’s ubiquitous ads introducing the PC as a device so simple even Charlie Chaplin’s tramp could use it. Only I couldn’t. At least not for a few years.

Knowing the internship would end in September, I took a lot of time off to interview at magazine and book publishers in New York. But even graduating cum laude from Harvard didn’t guarantee a young man in a wheelchair so much as an entry-level proofreading job!