Lucky Man (19 page)

My career did impress him, though, and I felt glad he'd lived long enough to enjoy it. Given his cautious nature, the risks I took (albeit with his solid if reluctant support) were outrageous, but they had paid off. Obvious in his pride and generous in his praise, the entire tone of his relationship with me changed—though, truth be told, not until after I had become successful. The bottom line: I was untouchable now, and he knew it. Getting Dad to relax and just go with the ride will always stand as one of my most unlikely and gratifying achievements. My dad, as would be most evident with the fractured Emmy incident, had bought into the magic.

So what would he have made of events to come? And how would his reaction have colored my own? I worry that my dad would have taken my diagnosis as a confirmation of his darkest views of the world; proof that happiness and success were not to be trusted. He believed life operated according to an inflexible system of compensation, in which each of life's gains had to be paid for by an equal amount of loss. Though obviously I can't know this for sure, I suspect he may have interpreted my P.D. as the cosmic price I had to pay for all my success. That would not have been helpful to me. For one thing, there have been times when I have felt as much myself, and the belief—which after all is nothing but superstition—has only gotten in the way of getting better.

So much good has happened since the dark days of this period in my life that I wish my father could have lived to see. He died just as the shit was about the hit the fan, and there's much I'm relieved he didn't have to live through, much I'm not proud of. I remember thinking soon after he died that at least he lived long enough to see the magic, to enjoy and take part in his son's success. And yet, as I can see now, there was an even greater magic to come, and I so wish I could have shared that with him too.

DIAGNOSIS: DENIAL

New York—October 1991

One morning, less than two years later, I found myself wandering the halls of New York City's Mount Sinai Hospital. The name of the doctor and his office number—listed on the directory in the building's giant atrium lobby—matched those on the scrap of paper I'd brought with me to the hospital and slipped into my left pocket. Now, after ten minutes of exploring the medical center's maze, I'd forgotten the room number altogether. No big deal,
right?
Just refer to the paper again.

Well, that was one of the things I was having a hard time getting used to: there were still times, particularly midmorning, when I was relatively free of symptoms, and could use my left hand much as I had for the first thirty years of my life to do things like, for example, casually tuck a slip of paper in my jeans pocket. But then, with no obvious cue, the symptoms would fire up again, my left hand would begin shaking uncontrollably, as it was now, and the process of retrieving that slip of paper from my left pocket was anything but casual. It required a right-handed cross-body grope that was awkward, at best, and, at worst, vaguely obscene.

White-jacketed nurses and doctors scurried back and forth through doorways and along the length of the corridor. Any one of them would have recognized the name of the physician I was looking for and been able to point me toward him, but that was the problem: as likely as they were to recognize his name, they were also just as likely to recognize
me
. I didn't want any water-cooler gossip about why Michael J. Fox was seeing one of the preeminent neurologists in North America, a renowned figure in the treatment of Parkinson's disease.

A week or two had passed since my initial diagnosis, and I'd still told very few people beyond my family. I didn't want anyone not directly involved in my care to associate me with the illness. I just needed Dr. Big Muckety-Muck to offer what would now be a
third
, and hopefully final, opinion so I could retreat once more to the privacy of my apartment.

After a few more minutes of slapping shoe leather against institutional floor tile, I arrived at the Department of Neurology, and finally the door of the doctor himself. His waiting room was empty—a relief. I was seconds away from the inner sanctum of his office and the protection of doctor-patient confidentiality.

The nurse/assistant at the front desk showed me into an examining room. She informed me that the doctor would be in shortly, and as I was shedding my coat and baseball cap, she noticed the shaking in my left hand.

“It's okay,” she said. “You don't have to be nervous.”

Confused for a second, I suddenly realized she was talking about the tremor.

“Oh,” I responded. “That . . . That's why I'm here. In a neurologist's office, I mean.”

After a second of mutual embarrassment, she left, closing the door behind her. Minutes later, it opened again, and in walked the legendary neurologist himself, just as wizened, curmudgeonly, and all-business as he'd been described to me.

“Says here you've been diagnosed with Parkinson's disease,” he grumbled with some incredulity. “How old are you?”

Thirty, I told him, and he shook his head as if he was pissed off at me for wasting his time.

“Well . . . I doubt you have P.D.,” he said. “Essential Tremor, maybe. Possibly something else. It's very unlikely that a fellow your age has Parkinson's. But you're here, so let's have a look.”

I would have hugged him if he hadn't immediately ordered me to drop my trousers and hop up on the examining table. He was about to lead me through the battery of tests that I knew so well by now that I could have conducted them myself. But I was hopeful.
Finally
, I thought,
we're going to get to the bottom of this. This guy knows what he's talking about. This whole Parkinson's thing has been a colossal mistake
.

In a practical sense, the initial diagnosis had been a nonevent. Telling Tracy, and then my mother and family, had been gut-wrenching—a lot of crying and hugging. But after that, how was I supposed to act on this information?—if, in fact, it was true and I chose to believe it. (Those were two very big ifs.) I played at being the patient, took to bed—as though putting a name to the physical sensations I'd been experiencing for over a year now suddenly made them ten times worse and demanded an entirely new protocol. But this didn't feel right. In fact, it felt downright silly.

In a classic case of shooting the messenger, I resisted following up with the diagnosing neurologist—never consulted with him again, in fact. Illogically and irrationally, I was just plain pissed off at the guy for having the balls to suggest such a fate was mine. In the short term, I would get a second opinion, and if that didn't put an end to this farce, I'd get a third.

During this time, it made sense to do a little personal research. But not with the purpose of finding facts about Parkinson's disease that I could relate to; more to find reasons to disqualify myself as a probable victim. The handiest resource was, of course, Tracy's
Columbia School of Medicine Encyclopedia of Health
. What the book had to say about P.D. was sandwiched between Stroke and Epilepsy. This is the entry's first paragraph:

Parkinson's disease, sometimes called shaking palsy, usually begins between 50 and 65 years of age. The disabling symptoms include muscular rigidity, slowness and poverty of movements, and tremor. Other signs of the disease may have been present, in retrospect, before the diagnosis is actually made. These include diminished blinking and reduced spontaneity of facial expression, stiff postures, loss of ease in changing positions (such as attempting to sit or stand), and a tendency to remain in a single position for unusually long periods of time. It is usually a shaking tremor of the hands, however, that finally brings the patient to a physician.

Contained in this first sentence was the one shining fact that I was pinning my hopes on: “. . . usually begins between 50 and 65 years of age.” My symptoms, if that's what they were, showed up in my late
twenties
. How could I possibly have this old person's disease?

In the days and weeks following my diagnosis, I observed what seemed like dozens of people with the symptoms of Parkinson's, all of them elderly. It's amazing I hadn't noticed so many before, although I'm sure my obliviousness could be attributed to what I call the Baby Effect. When I was single, babies were all but invisible to me. Then Tracy became pregnant with Sam, and all of a sudden everywhere I looked there were expectant mothers, mothers nursing newborns, pushing strollers, loading toddlers onto buses. Here was the same phenomenon, only infinitely more depressing. Those cardigan-wearing seniors I'd seen shuffling along Central Park West with their nurse-companions were often, I now understood, shuffling from the effects of Parkinson's disease. Courtesy had always taught me to allow old people to board elevators first, but I'd never realized that the reason it took so long for some to step inside, to find and push the proper button, was the debilitating hesitation of P.D. When I'd switch seats in a diner booth so I didn't have to watch the old woman across from me mismanaging her plate of eggs and bacon, not once did it ever occur to me that I might be turning away from the ravages of Parkinson's.

Chalk it up to the arrogance of youth, I guess. You might pay attention to this stuff if it's your grandparents—but otherwise,
don't bother me. I'm young, I'm healthy, I've got other things to worry about.

Young Onset Parkinson's (the appearance of symptoms in people under forty), the diagnosing physician had explained, is rare. These patients make up less than ten percent of the overall Parkinson's population. This, I'd learn later, made me one of only a hundred thousand or so North Americans in my predicament. Just this once, though, I got no satisfaction from defying the odds.

I tried to remember if I'd ever met anyone under the age of seventy who might have been afflicted, and only one came to mind. A journalist—mid-forties maybe—who'd interviewed me for a magazine piece at a Greenwich Village coffee shop. The conversation was pleasant enough, but I remember feeling a guilty impatience with the distraction of her movements, the rattle of her sugar packet as she labored to open it and pour the contents into her coffee, and the irregular rhythm of her spoon clinking in the cup—she wasn't actually stirring, just holding the utensil and allowing the shaking of her hand to blend in the cream and sugar. Like the neurologist's assistant, I assumed what I was witnessing was nervousness, and remember feeling mildly flattered that I might have that effect. But after a while I realized this wasn't a case of nerves. Nothing the writer said indicated that she was flustered in the least; to the contrary, she was all confidence and utterly professional. This was probably my first brush with Young Onset Parkinson's disease.

So, okay, obviously it was theoretically within the realm of possibility, but still . . . “usually . . . 50 and 65.” There could still be another explanation. Yet with each subsequent sentence, the
Columbia Encyclopedia
described a condition unmistakably like my own. “Symptoms include muscular rigidity, slowness and poverty of movements, and tremor.” All of these features were definitely present, predominantly in the left hemisphere of my body. The “poverty of movement” (I thought I'd left poverty behind back in the slums of Brentwood) was what had so shocked Tracy when she interrupted my Martha's Vineyard jog—the left arm barely swinging and out of sync with the rest of my body. There was also a rigidity in my hip, creating a barely noticeable hitch in my gait, plus I'd wake up in the morning with a stiffness in my neck and left shoulder, as well as my knee, wrist, and ankle joints.

“Other signs of the disease may have been present, in retrospect, before the diagnosis . . .” I reviewed my recent history for evidence that this might have been true and, regrettably, came up with quite a few hits. I considered the first example:
diminished blinking and reduced spontaneity of facial expression.
This could easily be confirmed through a review of my work by screening, in chronological order, a series of videotapes. I wasn't about to do that—only my mother could stomach that much of me—but the description of symptoms did resonate. I'd always thought, however, that my “diminished blinking” and “reduced spontaneity of facial expression” marked a growing comfort in front of the camera, less mugging, hamming it up—in general, an improvement as an actor. “No,” this book was telling me, in so many words, “you weren't getting
better
—just
sicker
.”

As for “stiff postures, loss of ease in changing positions (such as attempting to sit or stand),” my past work experience provided another clue. My favorite part of the original
Back to the Future
, filmed in 1985, was the Johnny B. Goode sequence during the “Enchantment Under the Sea” dance. As a frustrated musician, I was in my glory, learning the guitar chords and lead solo arrangements, as well as working with a choreographer to mimic and incorporate into the production number the signature styles and stage moves of my rock and roll heroes. Shooting this scene over the course of two days was sweaty, exhausting work, but I was young, in great shape (I thought), and it didn't feel especially grueling.

Four years later, for 1989's
Back to the Future II
, I had to reprise the Johnny B. Goode number, duplicate it right down to the tiniest detail. Not only did I find the moves much more difficult to pull off, but the physical toll was shocking. For weeks afterward, I was achy. At the time, I wrote this off to merely being four years older, but four years couldn't account for just how difficult it was for me to repeat the scene.

The last few words of the penultimate sentence in the encyclopedia's paragraph—“a tendency to remain in a single position for unusually long periods of time”—were also on the mark. They made me think of Tracy, or at least something she always kidded me about. Trying to reconcile the hyperactive blur I could sometimes be with the lumpen sloth I was at other times, she'd say, “You're the textbook definition of inertia. Once you start moving, you can't stop; but once you do stop, it's almost impossible for you to start up again.” It was an apt portrait and, unfortunately, a fairly good description of everyday life with Parkinson's disease.