Miracle Boy Grows Up (22 page)

“Freaky,” she says. “Life with
smah
....” (She’s referring to spinal muscular atrophy, or SMA.)

“But it’s not supposed to affect sensory nerves, just motor nerves,” I say.

“Doctors can be a great resource, but don’t believe them all the time.”

I’ve been brought up to trust doctors like they’re Holy People, but I have to admit I’m finding the insights of other folks with disabilities like mine much more valuable. And given the dubious tradition of nondisabled people speaking for the disabled—clinicians, writers, politicians—it’s eye-opening to talk with someone who’s been there, who shares your perspective.

That afternoon ML and I go to her brother’s new house in Chatsworth. It’s a big Victorian-style number, and her whole family has gathered there. They spread out and sort of float between rooms; there is no organized, formal center, not with my in-laws. Conversation is similarly scattered and random, but unfailingly pleasant.

Eventually my father-in-law turns on the football game, and I sit and watch with him without much interest. Part of my problem is, I never learned the rules of football. As a kid I could hold a Wiffle-ball bat and get pushed around the bases, so I learned the basics of baseball. But football? Never.

And there, in front of the TV, in the deep-red-paisley-papered den, my right leg is throbbing worse than ever . . . and my left one is starting to get pins-and-needles, too.

I keep it to myself, but the sensation—thrumming and dull, not painful— is spreading.

***

“It’s a neuropathy,” says my physician. I’d called him first thing Monday morning, and he was able to see me that afternoon. To me, there are two kinds of doctors—those who merely go through the motions, who minimize your complaints and worries, never taking you seriously, and those who overreact, who treat you like you’re in intensive care. I prefer the latter. These are doctors who make me feel like a VIP.

This particular doctor is an asthma expert, that being my chief ailment, but he’s also an internist and the only doctor I’ve seen on a regular basis since moving to California nearly seven years ago. I trust him and like his occasionally gruff manner. He never shies away from giving a precise diagnosis, even if it’s a bullshit term like
neuropathy
. (He’s Dad’s age and in fact was referred by Dad’s internist in New York.)

“I’m going to give you a shot of vitamin B12,” he says, “and if you don’t feel better by tomorrow I’ll refer you to a neurologist. Do you have a neurologist?”

“No,” I say, thinking
not since Dr. Spiro back to New York
.

If you’ve never had it, I recommend B12 as a great pick-me-up. I leave his office feeling euphoric, with energy coursing through my veins. My new attendant, Jorge, whom I hired from the California unemployment office—a great new source of candidates, I hope—after Sunday left for Nigeria (and subsequently leveled a workman’s comp claim for alleged back strain, which he’d only noticed a month after being replaced), drives me home. Jorge asks no questions. That’s partly because he’s too busy wolf whistling at women out the van window. (Another stereotype, I know, that’s nonetheless true in this case.)

The tingling, now spread upward to my chest, continues undeterred.

That night, ML and I make love. (B12 is also a terrific aphrodisiac!) For me it’s a weird experience. Afterward I timidly ask, “What just happened?”

“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.

***

T
wo 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.

***

W
hen 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.