Miracle Boy Grows Up (19 page)

Alec had moved to Philadelphia, where he was building a career in survey research. And the bubbling-acid rift between Dad and me—ignited over his nagging need to sell my childhood apartment—was smoldering still. So when ML learned LA was desperately hiring teachers, we had no excuse not to go.

***

It’s a warm November evening, around sunset, when we arrive at her family’s comfortable ranch-style house in a Los Angeles suburb. Nervous energy fills the air. After a sumptuous dinner of home-smoked turkey, homemade egg bread, and I forget what else—filled with questions and answers and nostalgia—her mother vanishes and then reappears in the living room . . . dressed like a sprite or wood nymph, or maybe Robin Hood: green tights, blousy beige top with a cinch neck, and cockeyed black cap.

“Well?” she asks.

A hearty round of approval from all. ML’s younger sister is there. Her two older siblings have moved out. I smile and try not to act confused.

It turns out ML’s mom is off to a dress rehearsal at a local theater. I never do learn the name of the show.

In random discussions and over nonstop eating—the kitchen
is
the family center—it’s evident they’re smart and creative and loving and just the right amount of kooky. Much less formal than most families I’ve known. But what they make of me remains to be seen. (I wonder now how I’d feel if my daughter brought home a paraplegic paramour. Wouldn’t I worry whether she knew what she was getting into?)

Like Woody Allen in that scene in
Annie Hall
where, facing Diane Keaton’s WASP family, he imagines he’s turned into a Hasidic Jew in full black-hatted garb and
peyos
, I become acutely self-conscious. They’re rugged Westerners, ML’s clan. Not roughnecks but do-it-yourselfers. Which frankly seems exotic next to my background, yet rattles me because it’s so suffused with basic, hands-on physicality. After a few days, as they’re helping us move to an apartment we’ve found— particularly when her hardy, robust dad, a noted engineer and research physicist, and visiting older brother, an intimidatingly handsome aspiring screenwriter, are hauling a sofa we’d purchased—I’m painfully aware for the first time in my life of being a true cripple.

“I feel so damn useless,” I hear myself mutter.

***

U
nbeknownst to us, the small apartment we’ve found is in what will become the notorious Rampart District (see the Denzel Washington movie
Training Day
). Our new building is actually a converted hotel built in the 1940s; we love its frowsy Art Deco vibe. It’s not entirely wheelchair accessible—I have to enter and exit the building via a steep ramp off the basement, because the front lobby has steps—but the price is right and we’re too young (
read foolish
) to care.

After Bill’s peevishness, we’ve decided against having another live-in attendant, so it’s just a one-bedroom. I’ll find someone for daytime, as I had in high school. ML will take evenings and weekends. Only later, when I’ll need to increase the attendant hours, will this arrangement prove a bad precedent— forcing me to ask Dad for extra money, which will feel akin to an admission of failure.

She lands work almost immediately, never mind that it’s in an overcrowded inner-city school. So I get busy dialing home-health agencies out of the phone book. Monday morning, when the agency man arrives for the first time, I’m lying nude in bed—well, in the sofa bed we’re using for now. It’s ML’s first day at work, and she mustn’t be late; I don’t remember if either of us thought even once about the dangers inherent here, leaving me alone and stark naked with a stranger.

I’m prepared to take charge, to tell the man all about me and what I need. But he is chatty. A short, stocky man in jeans and a T-shirt, he has a slight Southern accent and a scraggly reddish-brown goatee to complete the redneck stereotype. He keeps telling me he used to be a medical doctor back in Tennessee but his license isn’t recognized here.

“Can you imagine—from a medical doctor to
this?”
he says to drive home his disillusionment.

I try to make appropriate, responsive-but-not-encouraging noises.

“And believe me when I tell you, I don’t know how many of my patients used to hit on me. They’d grope me! Truth,” he says. “By the way, I’m gay.”

“Let’s walk down to the grocery store,” I say once I’m safely dressed and in my chair. I feel desperate to get out in the open air, around witnesses. Not that anything he’s revealed is intrinsically scary, though it seems too much information, under the circumstances. Rather, it’s something to do with his delivery that sparks a sense in me that he’s itching for a fight. The timbre of his voice maybe, or a certain squint of his eyes. Something definitely feels unstable.

Walking to the grocery store is an alien concept in LA. But with my cracker ex-doctor oddball beside me, I find one—a sort of oversized bodega down the street, on the edges of Koreatown. Inside, I get flustered—the brands are different. I can’t find what I’m looking for.

That evening, ML and I go out for dinner and I can’t stop shaking.

Nevertheless, dunce that I am on the cusp of twenty-two, I let the frightening attendant come again the next day and for a few days after that … maybe it’s me, I reason. Maybe I’m prejudiced. Maybe I need to find a way to work with him . . . because, really, what choice do I have?

On Friday, finally, I place a classified ad in the LA
Times
. Over the weekend I conduct interviews. ML meets them all—the various unskilled, curious applicants who show up—but mostly stays out of the way, her distaste for these encounters barely suppressed. They are—or can be—rare windows into another slice of life, a set of different socioeconomic backgrounds. Sometimes this is wonderful—a kind of eye-opening multiculturalism—but other times it’s just awkward, grating, even incendiary. I’ve known it to go both ways, frankly. I wish I didn’t sound so hardened about it, but that’s the way it is.

It’s my choice, ML declares, not hers; already she’s gleaned how fragile my authority can be with newcomers, how easily I’m assumed to be the patient to take care of, instead of the one who must be listened to and pleased.

So, I hire a young man—let’s call him Peter. I’m perhaps too quick to overlook Peter’s spotty history. He’s younger than I am and even newer to LA. His only reference is his grandmother in Denver. But I like him and I’m desperate.

Peter and I get along fine despite his constantly tuning my stereo to country music. Afternoons, after I’ve sent out all the résumés I can for the day, I have nothing to do and Peter and I watch old sitcom reruns on TV. It’s boring yet it becomes addictive. I know I should be doing something worthwhile, but what? Every day I scrounge employment ads—publishers, editors, journalists, writers, proofreaders, etc. I network with anyone I know—from Harvard’s career services office to friends of friends. I score several interviews, which go smoothly. Then, nothing.

In fairness, part of the problem is I’m not suited for entry-level work. I can’t be a “copy boy,” jockeying papers here and there. I can’t sort mail or run after burning news stories. I can’t type (enter data, interface with a terminal— whatever the current expression is) quickly enough. I know I can write well, given the opportunity, and believe I can edit others. But such brainy, specialized, nonphysical jobs are reserved for those with basic experience already under their belts.

Nevertheless, I’m gradually forced to consider whether people could be judging me harshly because I’m in a wheelchair. Not just
in a wheelchair
. Let’s be honest. I’m disabled from head to toe. My spine is twisted, and I’m utterly bereft of musculature.

I hesitate to admit this. I still believe I can pass. I’m not up to accusing anyone of unfair treatment, even in the abstract. But intellectually I know that denying the possibility would be foolish.

Practical questions surge up. Do I mention my disability when I apply for a job? Does it belong on my résumé? I mean, what difference should it make? Most of the disability literature I see doesn’t address such real-world conundrums (bedsores and flat-tire repairs galore, however!), but that’s changing, too. Somewhere I read that it’s better to take control of employment questions under your own terms. So, when scheduling interviews—on the phone beforehand, not on my résumé or in my cover letters—I start asking if there are any steps or other obstacles for which I’ll need to plan ahead. But potential employers still seem taken aback when they meet me.

Not until this post-college stage have I ever felt so “handicapped” by my disability.

***

O
ne midday the phone rings. From my new speakerphone emanates the voice of one of my career-networking contacts, who’s heard of an opening at the LA
Business Journal
. The editor wants to meet right away.

I instruct Peter to lie me down, strip off my jeans, pull my gray flannels on me and put me back in the wheelchair. I teach him how to tie my necktie, just as Dad taught me. I say I’ll pay overtime if this meeting runs late.

ML has taken the van to work, but the newspaper’s offices are only a few blocks away. Peter walks with me, then waits in the hallway. In the side of my chair I’ve had him tuck a folder with my résumé and clips from the
Harvard Independent
and IBM. Which proves a good move when Dave, the editor, asks for my writing samples.

“Here,” I say. “Can you reach?”

He doesn’t flinch. After a time he looks up and says, “This reminds me of, like,
Esquire
or the
New Yorker.”
I know he’s just saying that because I’m transplanted from New York, but I’m immensely flattered—until the ax falls. “The opening I have is in research. In our library. Don’t think that’d be a good match for you.”

I can’t honestly disagree. Then Dave comes up with a plan.

“Do you freelance?” he asks.

A few days later, over the phone, we settle on the idea of a diary of a successful ad. To my delight, the story practically writes itself. The ad: the still-famous Super Bowl spot introducing Mac computers (“see why 1984 won’t be like
Nineteen Eighty-Four”
). The then-LA-based agency behind it had even put together video interviews with the creative team. So I just speak to the account exec over the phone, watch the video, and type my article on my new electronic typewriter—an early word processor with miniscule memory.

My article runs on the front page.

***

A
fter four articles of decreasing length and prominence, however, the freelance assignments dry up. Dave says his budget is shot but recommends me to a trade-magazine publisher. For the next few years I’m writing puff pieces for magazines with titles like
Tradeshow Manager
and
Rx Home Care
. (Yes, that includes wheelchair dealerships.) I never let on about my disability. It’s all done by phone, mail, and fax.

Until one day my cover is blown.

The editor says there’s a staff opening. I apply. I’ve been working for her for at least a year, so I show up brimming with self-confidence. She takes a hard look at me across her crowded desk and, after some chit-chat, asks, “How would you make photocopies?”

I smile to cover my surprise. Calmly, I explain how it’s not hard to find someone to push a button for me, if necessary. I explain that I’m especially good at handling myself, that my disability has never held me back. I’m competent and can cope.

“But if we hire you,” she says, “you’d be here to help
us
, not for us to help
you
.”

Needless to say, I don’t score the position. She likes my work enough to keep feeding me freelance assignments; she just doesn’t want me around the office.

I’ve spent my life reassuring people that I’m okay, that I can do things that might surprise them. But all of a sudden this tactic is failing. It seems Mom was wrong. I can’t really be anything I want now that I’ve grown up.

***

O
ne night ML and I come home late to our dinky Rampart apartment. The ramp—around back, off a short dark alley— is covered in cockroaches. It’s pitch black out. While she’s fumbling for her keys I hear a scuffle and a thud. I can’t see what’s going on, but ML is on the ground. She hops up suddenly and is hollering.

“Give me back my purse! Come back here, you bastard!”

She tears off down the street. Her soprano voice is loud, projectile, and apartment windows above us open. I see a woman’s head emerge from one of the windows. “Police,” I say. “Call the police.” But I’m not loud, or she doesn’t speak English or want to get involved.

ML comes back and breathlessly explains she was knocked down and her purse snatched. I have a vivid imagination and a burning fear of her getting raped that’s probably one part love and two parts physical insecurity. The movie in my head of another man being physically aggressive with her taunts me more and more.

But this night ML says she’s fine; she’s not hurt and wasn’t “violated,” just robbed. Later, the police will say that being knocked down does count as an assault. For the moment, though, the guy who took her purse took everything. She’d been holding my wallet as well as hers. From then on, I start carrying a small zippered pouch inside my chair.

The only thing she has left is the set of keys clutched in her hand. We decide it’s unsafe to stay in our apartment. The robber has her driver’s license with the address, and my set of keys. He could be back. So we call ML’s brother in the Valley, and he sets us up at a local motel.

A week later—after less than a year in the Rampart District—we rent a larger, more expensive, safer apartment on LA’s West Side.

***

A
t around this time, in St. Louis, Missouri, Virginia (Gini) Laurie— daughter of a surgeon and sister of a young man who died of polio, but not disabled herself—launches the International Polio Network (later called Post-Polio Health International). One of its key accomplishments will be spreading awareness of Post Polio Syndrome, in which people who’d contracted the condition decades earlier suddenly face new physical limitations—their joints and muscles, in effect, age more rapidly than other people’s.