by Ben Mattlin
“You don’t know?”
“I think I came. Right? I’m pretty sure. But I’m not certain I’m feeling accurately.”
This time ML does pay attention. She starts patting me down. “Can you feel this? And this?”
I can feel them—all her pats and pokes—but as if through a gauzy shield.
The next day the tingling has moved into my arms. I can no longer hold a pen or work the TV remote. I phone my doctor, who says I’ve probably pinched a nerve in my neck. My neck is weak and my head does flop about freely, given a push or jolt. And it’s true that Jorge—a soft-hearted jock from Peru—is rough with me sometimes. Every morning he lifts me from bed to my wheelchair with a forceful herky-jerkiness and a grunt, as if I weighed two tons instead of just over a hundred-twenty pounds. It’s a roughness I’ve encouraged. I’ve urged my attendants not to be too gentle, not to think of me as a delicate flower. “You’re not going to hurt me,” I’d reassure the first time they handle me, to keep them from babying me and ensure they move me about as needed. There is a degree of necessary roughness. But perhaps Jorge had taken my macho promptings too much to heart.
At the end of our morning routine I often feel winded and shaken, needing to collect myself at my desk before getting down to work. Yet I never say “ouch” or “stop—that’s too rough,” locked into some sort of masculine game of virility where I’m afraid to come out the wimp. I’d always told myself that the aftereffect, the necessity of realigning my wits, was like recovering from a jostling morning commute, nothing more. I wonder now if it’s actually a sort of attendant-cripple version of Stockholm syndrome.
At my doctor’s referral, I meet the next morning with a new neurologist—a nebbishy academic type with a harried, impatient manner. “Can you feel this?” he asks, holding a tuning fork to my right knee.
“Yes.”
“Tell me when the vibrations stop.”
I do, and he gives little indication of how well or poorly I’ve done but I suspect the gizmo is still vibrating after I can no longer feel it. He runs a few more tests and continues to seem dismissive. Or baffled. (I guess he’d go in Category One of doctors I’ve known: one of the under-whelmed.) “There are a number of viruses that can cause this sort of neuropathology. Let’s check for actual damage,” he says and orders an MRI.
I expect his reaction might’ve been bigger if I actually used my legs. I mean, there’s no big loss here. In truth, it’s the loss of use of my hands that scares me.
So the next weekend—the first appointment I can get—I’m slid bodily into the giant MRI tunnel. As instructed, I lie still (not that I have much choice) to the sounds of banging microwaves or whatever they are. It occurs to me that the metal rods in my spine—the ones put in during that high school surgery—might skew this device’s readings . . . since it’s Magnetic Resonance Imaging. (I’ve written about modern imaging technologies for one of my med-equipment trade magazines.)
I also think of a joke while in there, which I hold onto until the ordeal is over. “Sounds like the bombing of Beirut in there,” I say, back in my chair. I also mention my metal rods.
The technician doesn’t laugh, and maybe makes a note about the rods. Mostly he’s trying to diagnose me. “I’ll bet it’s Guillain-Barré!” he announces with a flourish of his arms, stumbling a moment over the French words. “What’s your doctor say? Ask him if it’s Guillain-Barré syndrome.”
It’s as if he thinks he’ll win a gold star for finding someone with this diagnosis.
Isn’t it what Joseph Heller recently recovered from? is what I’m thinking.
I never do get an official diagnosis. By the time I manage to get a hold of the neurologist, the tingling has already begun receding from my legs. Limb by limb the sensation fades. After two months, it vanishes completely, in the same manner in which it appeared.
Still, the neurologist sticks with the virus explanation—though he doesn’t specify Guillain-Barré. Ultimately, it doesn’t matter. It’s gone.
But it’s left behind a great deal of damage. I never regain the ability to hold a pencil or work the TV remote.
***
Two hours. Two and a quarter. First in a bland waiting room full of families with small, thin-limbed children, then in a claustrophobic examination room.
I’m here to see Dr. Engel. Or should I say the Great and Powerful Dr. Engel? Whose name I got from Barbara, my disability connection. She says he’s famous in the SMA world, a leading spinal muscular atrophy expert. I’m here to find out why I’m weaker.
Before Dr. Engel will see me, though, I’m pre-examined by his associate, whose name I forget now. Nearly two and a half hours to see his lieutenant! On the other hand, the starter doctor is kind of cool—a tall, elegant man with a copper-colored complexion. Towering over me, he is kind and unrushed.
I tell him I’m concerned because for the first time in memory I’m losing strength. He nods, unimpressed. For me, this is a big deal to admit, to lower the Brave Face, stop pretending everything is normal—and yet I feel nothing but relief at his calm reaction. I didn’t come here for sympathy, after all. I came for knowledge.
“When was your last EMG?” he asks.
I stutter a moment, then mutter something about having an EKG with my annual physical—
“No,” he corrects, a smile softening his granite physiognomy. “I’m referring to an electromyogram. Never, I’m guessing?”
Never even heard of it. Perceptive, he is.
After asking a few more questions, he leads me to another examination room and gently administers the EMG. I say “gently” because it’s a savage procedure, involving small needles stuck up and down my arm—and zapping them one by one with a bolt of electricity. This somehow tests nerve reactions. I can remain in my chair and keep my clothes on, at least—so I’ve let Jorge stay in the waiting room. He gets claustrophobic and uncomfortable around doctors anyway.
Mine announces evidence of progression. Progression of the atrophy, that is. In other words, the opposite of progression. Worsening. “You have some degeneration here,” he observes after a particularly strong set of shocks.
I ask how that’s possible, protest that I thought my condition had stabilized when I was about six. “Are we even sure I have spinal muscular atrophy?” I ask as an arctic cloud wafts over and settles on my body.
“The atrophy can start up again with age, particularly with prolonged inactivity,” the doctor explains, his tone steady, neutral. “It can stop and start anytime, honestly.”
“I didn’t know that. Is this a new discovery?”
“Not really.”
So this is what it feels like to receive information that makes you reevaluate your entire life. Hit the rewind button and watch it all over again, looking for signs, for clues.
“Do you think it’ll continue, this new round of weakening?” I soldier on, after a hard swallow. “How far will it go?”
“Can’t say. But no, not necessarily. It can stop and start intermittently. In any case, it’s gradual. Almost always the progression occurs gradually.”
After a moment of taking this in, I’m reminded of those families in the waiting room—the scared ones with kids who are just being diagnosed, kids who might not live to their tenth birthdays. The chill cloud is theirs, not mine.
Anyway, didn’t I already know I was growing weaker? Not really news, then, is it? “What about the tingling?” I ask. I describe my recent numbness, how it came suddenly, lingered for two months, and then disappeared just as suddenly.
“That’s not spinal muscular atrophy, of course. Spinal muscular atrophy doesn’t affect sensory nerves—”
“Yes. I know.”
“—And your sensory nerves seem fine, by the way. So I don’t know what the tingling you describe came from. But any prolonged inactivity could cause progression. Or it could be unrelated.”
Doctors! They really don’t know shit, do they?
Yet I try to keep him talking, don’t want
to forget anything, to get home and kick myself for neglecting to cover something crucial. Besides, it’s better than the quiet of an empty examination room. “So . . . no predictions?”
“We’re finding that people with SMA who live long enough often experience some progression as their muscles wear out,” he goes on. “Like Post Polio Syndrome. Often people in their fifties go on ventilators for the first time in their lives, as breathing becomes too difficult.”
“Great,” I say. “Something to look forward to.” It’s all too much, and yet somehow not enough.
Later, I will research ventilator users, like Barbara. I will learn that even people who put it off as long as possible find using a vent is actually a great relief. They find they have more energy than before and only wish they’d made the switch earlier. A completely different perspective—one you can only get from talking to actual users.
Barbara will also say that SMA is an umbrella term used to describe a variety of scenarios. She herself used to walk, has only been using a chair and ventilator for the past few years. I’ll ask her what it’s like to lose functionality—how does one cope? Predictably practical and dismissive, she’ll answer, “Ach, you have to plan ahead for it. And you mourn each loss, and then go on.”
When Dr. Engel finally arrives, in my head I hear a fanfare like I’ve been granted an audience with royalty. (That’s a joke—his full name is W. King Engel.) He’s an average-size man with white hair, thick round glasses, and a bow tie—outwardly about as impressive as Orville Redenbacher—but he’s bursting with energy and authority, or at least that’s what I ascribe to him after the long buildup.
We review my medical history. He’s very interested in my biography and what I’m doing now. I have a sense that much of the study of this condition is anecdotal, a collection of life stories in search of common traits or clues to the disease’s origins and different strains.
“We’re finding more and more cases of it around the world,” he volunteers. “Egypt and Africa, Russia and Asia—you name it. It’s not a rare condition.” He’s informing me like a professor more than a clinician. I’m oddly comforted by his air of intelligence—though his delivery isn’t quite sugarcoated enough to qualify as good bedside manner, to my mind. He seems to respect my brains, too. We connect on an intellectual plane.
“But look at you,” he says. “You’re doing marvelously! Send me some of your writing, will you? I know someone who might be interested in meeting you.”
I’m doing marvelously? I’m losing what little strength I’ve had! Compared to other cases he sees, however, I guess I’m still one of the lucky ones. I want to feel lucky again.
***
When I get home, I put together a package of writing samples and promptly send them to him. I include the LA Times op-ed that’s critical of the Jerry Lewis telethon. I know Dr. Engel probably receives funding from the telethon, but I’m inclined to be completely candid with him.
A few weeks later he calls. My telethon essay reminds him of one of his other patients, he says—the one he’d mentioned wanting to introduce me to. Who turns out to be Evan Kemp, the Washington bigwig who’d written that groundbreaking anti-telethon op-ed in the New York Times more than a decade before. Kemp is now chairman of the US Equal Employment Opportunity Commission. He flies to LA periodically just to see Dr. Engel.
And this becomes the primary payoff of my visit to Dr. Engel. For in 1993, a little more than a year later, when Bill Clinton becomes president, Kemp will be out of a job. So he’ll invest his personal fortune in launching a communications company about and for people with disabilities. Among other enterprises, his company will publish a monthly newspaper called One Step Ahead, and I’ll be named its senior editor. I’ll be put on retainer for half my time—spent mostly writing. My first regular paycheck. My first official employment contract and job title. But that’s still a few years in the future.
First, I have to realign my life around my weakened (or possibly weakening) hands. Plan ahead, mourn the losses, and move on—that’s what Barbara had said. Not that my hands ever did so much, but now I need extra help with everyday tasks. Such as eating. I’ve always had to be positioned just so to feed myself, but the “just so” position has become impossibly particular and fragile.
“Right elbow forward just a smidge . . . oh, too much . . . back a little …”
Some days I can’t get it right at all.
It’s not as if debility happens all at once. More and more it becomes simpler for ML to feed me dinner. It saves time, effort. Especially if I want to expand my diet beyond chicken nuggets—that is, beyond food that’s easy to hold and stick in my mouth. If I want to try sushi, say, or sip soup, a greater degree of assistance is required.
At lunch, with Jorge, I still try to fake it as much as possible. (The macho business.) But I alter what I’m eating to make the assisted self-feeding go more smoothly. A slice of toast with a piece of cheese melted on it is fairly effortless to balance and shove in (whereas soft, untoasted bread collapses on itself). A cup of yogurt is easier to suck through a straw than eat by spoon, provided you’ve poured a dash of milk in. (I’d been drinking through straws since college, though I don’t remember exactly when or why I give up lifting and tipping cups.)
Signs of my new weakness creep in elsewhere, too, like vermin. I begin allowing Jorge to brush my hair—telling him how I want it, rather than having him hand me the brush and support my arm aloft. Is it obvious, my “new look”?
He’s not a stylist, and it’s hard to explain brushstrokes—”back and right at a diagonal, toward my right ear …”
In high school I could spend hours primping at the mirror unassisted. Yes, often completely unassisted back then. Perhaps I’d been losing strength all along . . . incrementally, imperceptibly. If I ever thought about this, I told myself my arms had merely grown heavier over the years—that’s why I sometimes needed more help than I used to. Plus I’m less interested in primping now, don’t need to work at it.
One weekend I receive a small package from Dad. He’s transferred our old home movies from Super Eight to VHS cassette. He’s titled it, “Alec & Ben: The Early Years.”
Watching the silent images, I’m struck by the changes in my young body. As a baby I could crawl a little, even hold up my head. As a toddler I’m already concentration-camp thin, my movements awkward, tentative. Alec, by contrast, hogs the picture; he’s always dancing, clapping his hands, showing his ability to be active, performing for the camera. Later still, when I’m maybe nine years old, I’m fatter and almost completely immobile from the neck down. I don’t realize it at the time, I can see. But someone is always holding me, moving my arms. At a birthday party—a game of hot potato— I’m positioned in a circle with friends in our old living room, and the girl on my left puts the potato into my lap, where my hands are waiting, and then the boy on my right picks it up from there. I might think I’m passing it along, but in fact I’m completely passive.
Talking about this afterward, ML doesn’t let me kid myself. I’d been almost thinking my new weakness was no biggie because I’d always been more debilitated than I knew or admitted. She says, almost apologetically, “I do miss your touch, your gentle caresses.”
She’s not characteristically one to express sorrow, disappointment, or need. She’s a coper. She muddles through. She’d sooner ask what I want to do—and derive pleasure from doing that—than express a desire of her own. So I’m pleased she’s being frank, but still her words sting.
“We just have to adapt,” I say after a beat, unable to resist the find-a-solution orientation of my gender, or my upbringing. It’s a glib response, the kind I’m preprogrammed for as part of my lifelong survival strategy. I do realize I’m hurt and scared, but do I realize it loud and clear enough to say so?
Yet even as the upwardly mobile, Harvard-educated man is evaporating— replaced by the severely disabled cripple—somehow I can’t give up. You mourn and move on. It’s a different direction
but not a dead end. I’ll have to adapt. And on some dim level there’s a glimmer that signals maybe I’ll be better off. Maybe trying to fit in with the Harvard-yuppie ideal was unworkable and unrealistic.
Cripples are nothing if not full of creative solutions. I search for mine, for the best solutions to my current conundrums—not medical cures, mind you, on which I’ve long since given up. And which, at best, seem a long shot and, moreover, completely out of my control. Instead, I investigate everything from sex toys to revitalize our marital intimacy (did you know there’s a whole catalog of sexual gear designed for the disabled?) to mechanical wheelchair attachments that might allow me greater arm movement.
I also search for intellectual comfort, for a solution to what psychologists might call my cognitive dissonance. And I find it, when I realize my increased limitations are, in part, a function of aging. Everybody ages. Everybody goes through diminished capacity as they grow older. So I make up a narrative I can live with: I may not be all I was when ML met me, say, but who is? To put it bluntly, she’s aged, too. (Only later will I come to understand how much that very fact is simultaneously preying on ML’s mind.)
***
In my search for the latest “adaptive” gear, as it’s called, I attend the Abilities Expo. It’s an annual tradeshow for the disability market—vans, high-tech wheelchairs that can stand you upright or climb stairs, telephone devices for the hearing impaired, fashionable attire for the seated or amputees, publications, benefits advocacy, and even a self-defense workshop for those with limited movement.
ML and I don’t buy anything, but we collect a lot of flyers and ads. If we ever build our dream house, we now know where to acquire a bathtub with a watertight door for easy access, and kitchen cabinets that move up and down with the push of a button.
The Abilities Expo is just one of the places that make me feel good about my disability—where my so-called physical liabilities become assets. I become a volunteer board member at my local independent-living center, too, where I help with publications, do some fundraising, and participate in (and sometimes lead) discussion groups.
