Lucky Man (31 page)

“We know its pathology, that it is the result of a loss of dopamine cells, and unlike the other degenerative diseases, we can treat it quite effectively, in this case with synthetic dopamine. We know the precise anatomy of where it occurs and have terrific animal models. Those are the three major factors for successful research.”

“With Parkinson's disease,” Dr. Langston has said, “the science has been way ahead of the money.”

I was learning that it really wasn't a question of
if
Parkinson's could be cured, but
when
? The answer was, only as soon as we could pay for the cost of scientific research.

Whenever people debate federal funding for medical research, there's an assumption it's a zero-sum game. Any number of “special interest” groups, be they AIDS, cancer, or Parkinson's advocates, are all competing for a bigger slice of the pie. What's really needed, of course, is simply a much bigger pie. So why do some patient groups get more than others? And why are others left out in the cold when the money's being doled out? The answer lies, in part, with the fervor and commitment of the lobbying effort, and that starts in the patient community.

It's illustrative to draw a comparison between Parkinson's and HIV/AIDS, the group that receives the most government research money. Perhaps the most successful and inspiring movement ever to demand federal action to cure a specific disease, AIDS activism found its strongest voice within the gay community. Because a large proportion of those at risk or infected were young, vital, creative, and affluent, they were able to mobilize quickly and strategically in support of their cause. While some in this movement were, like Young Onset P.D.ers, closeted, the urgency of the situation compelled many to come out, and a system of mutual support in the community eased that transition. Yet those affected by Young Onset Parkinson's, surely the segment of our community in the best position to make a sustained, energetic commitment to advocacy and activism, have, for the reasons I've mentioned, been reluctant to speak up, never mind
act
up.

Because Parkinson's disease progresses so slowly it also discourages involvement, at least in the early stages, when a patient would have the most to offer. Not substantially disabled yet, many people just can't see around the corner until they make the turn and hit the wall. (I know this from personal experience.) By comparison, an AIDS diagnosis was, at least until recently, a death sentence, leaving no time to waste. In fact, AIDS activists took the rapid course of the disease into consideration in their organization of the movement. They planned ahead for succession, so that when those in leadership got sick, a new spokesperson would be ready to grab the megaphone. It was a brilliant and effective response to a devastating crisis. Such a level of organization was in short supply among those affected by Parkinson's disease.

Greg is one of a small number of Young Onset patients involved in grassroots P.D. activism. He remembers when he heard the news that I had publicly announced my diagnosis. “This is sort of embarrassing to say, but I have to tell you that my reaction was ‘Thank God.' Suddenly the disease that nobody was interested in had become the disease of the moment. It spurred a tremendous amount of interest in the scientific and public arenas.”

He added this: “Though I knew it would only be good news if you used your time wisely and got involved.”

That day was coming. I didn't want to overreact out of sheer emotion, but to consider all of this new information very carefully. I had adopted a vaguely Taoist way of looking at things:
if you're not quite sure what to do, don't do anything yet; more will be revealed
.

I'd been given a lot to think about, not least the fact that I wasn't the only one who had done my time in the closet. And the more I thought about it, the more it struck me just how plush, well-appointed, and secure my own closet had been. My career, my position in the world, and my financial situation gave me advantages in confronting the disease that most of my fellow P.D.ers could only dream about. And now, having publicly identified myself as a person living with Parkinson's disease, there was little to keep me from playing an active role. Indeed, I was ideally positioned to step into the void left by all those patients who had so much more to lose by going public. I had a lot to be grateful for, and now found myself with a unique opportunity to give something back. But still,
if you're not quite sure what to do . . .

By the end of 1998, my desk was covered with correspondence bearing the letterhead of various Parkinson's organizations across the country. All of them wanted my help in one way or another. The names of some of these groups implied a national reach, but on closer inspection they turned out to be local organizations affiliated with universities or hospitals or even individual researchers. Some were not set up to address research at all; instead, they were dedicating their time and resources to more basic patient concerns—caregiver support groups, quality-of-life issues, and other worthwhile considerations.

It was a bewildering and daunting landscape, and I set out to study the various players, reading their literature and meeting with them when possible. I soon began to understand that one of the reasons that the Parkinson agenda had not been carried out with a sense of purpose and unity had a lot to do with the factional nature of many of these groups, which refused to work together. The director of one foundation seeking my help even went so far as to say to me, in so many words, “Well, if you don't help us, then, at least, don't help them.”

I began to get the feeling I was at a casting call for the part of “poster boy” in a production not at all ready for prime time. If and when I did become involved, I knew myself well enough to know that I'd have to make more of a contribution than merely lending my name to an organization.

But I wasn't there quite yet. I still had this other job to get back to . . .

ONE LAST SPIN

New York City—December 1998

Friday night. Seven o'clock, give or take a few minutes, depending on whether my alchemy has been timed correctly and pill and brain are playing together nicely. Show time. The studio audience are in their bleacher seats and the actors are backstage waiting for cast intros. One by one, as their names are called, they run through the center of what we call the
bullpen
—
Spin City
's main office set—until they reach the imaginary line where the fourth wall should be. They take in the audience's applause, wave, bow, or, in the case of the guys, curtsy, then make a sharp right and circle around backstage again. I'm the last one out and usually execute the ritual in an identical fashion, except that after my wave I make a brief stop to say good luck to the writers, who are clustered around the studio's floor monitor. By the time I've rejoined Barry Bostwick, Michael Boatman, Alan Ruck, Alexander Chaplin, Connie Britton, Victoria Dillard, Richard Kind, and director Andy Cadiff, they're already in the throes of a communal preperformance whoop-up, a high-fiving, shoulder-slapping parody of a varsity football team, complete with sloppy huddle and group cheer, though nothing so crisp and uniform as GO-FIGHT-WIN—just a short, loud burst of random profanity.

Halfway through our third season, we'd never started show night any other way. But this Friday night is unlike any other. It's my first time in front of a studio audience since I disclosed my diagnosis, and I know that what happens over the next three hours or so will be a litmus test for the rest of my career—however long that might be. My friends in the cast understand what I'm going through; I can feel their support. Though a little less raucous than normal, they're even more generous with the hugs—and this is a huggy group.

When my name is called, I run down the center of the bullpen, but this time I don't stop or wave, and I don't make the sharp right to return backstage. I keep going, right through the fourth wall to the edge of the bleachers. With a boost from one of the camera operators, I climb up over the railing. Now I'm with the audience, practically stepping on the toes of the folks in the first row. I need to be this close. I need them to see that I'm okay.

And this too: I feel I need to give them permission to laugh. So I say hello, tell a few jokes, and ask if there are any questions. One young woman puts hers very simply: “How are you feeling?” “Better than I look,” I answer her quickly and with a smile. “And I don't know about you, but I find me pretty damn cute.” There is a brief delay and then, mercifully, a wave of warm laughter. Maybe this is going to be all right.

Minutes later, the cameras are in place and we begin playing out the episode's opening scene. We generally do each scene twice for safety, and as a rule, the laughs are always bigger the first take; by take two, the audience already knows what and where the jokes are.

Tonight is an exception. The reaction is much bigger the second time around, even though the performance is virtually identical. The first take had confirmed my worst fears. The audience
was
tentative, unsure what to expect, watching
me
rather than
my performance
. But thankfully, take two laid those fears to rest. After an initial hesitation, the laughter made it clear the audience could separate my reality from my work. As long as what I was doing was funny, they told me, they were ready to laugh.

What greeted me in the studio that first night was in keeping with the general reaction to my news, which without exception was generous, empathetic, and caring. I hadn't really known what to expect, and in fact the outpouring of support I received—there were times when it felt like an embrace—would have been impossible to predict or prepare for. My fear that I would now and forever be defined by my disease melted away. This was all
giving
and no taking. I felt as though I was being enriched by the gift of people's love and prayers, without being asked to pay for it with my identity or dignity. I was still me, people recognized, just me
plus
Parkinson's. It was the most humbling gift I've ever received.

After all the years on
Family Ties
and my many film roles, particularly the
Back to the Future
trilogy, I was used to people approaching me with variations on the theme
I feel like I've grown up with you
. I've always felt a sense of appreciation, and gratitude, to these people, who were, after all, my audience. So many of the good things in my life had come to me because of their support. The way I always thought about it, the audience and I were parties to a sort of mutually beneficial and respectful transaction. But this tsunami of goodwill washing over me now put the lie to the notion of such a clean or businesslike exchange. There is a deeper connection here, I understood, a profound relationship.
I'd grown up with them too
, and they were letting me know that they intended to stand by me.

I heard from other people too, including public figures who had been diagnosed with Parkinson's. Billy Graham and Janet Reno both sent letters and eventually a telephone message came from Muhammad Ali. For some reason, I returned his call from the phone in my bathroom. In the mirror I could see my eyes welling up as he said, in his eloquent whisper, “I'm sorry you have this, but with both of us in this fight, we're going to win now.”

Then there were the people I met on the street in New York City, while out running errands or taking my kids to school. In the weeks after my disclosure, I had dozens of encounters with strangers, some of which took the most curious turns. Many people would approach me in a spirit of sympathy, or even pity, that, at least until I understood it, made me uncomfortable. These people were grieving for me, perhaps because, to them, the news of my diagnosis was fresh. Having lived with this “news” for seven years already, I was done with grief and had no patience for it. Yet after a while my understanding of these encounters deepened. When these people came up to me, I could sense them searching my eyes for some trace of fear. Finding none there, my consolers would, I'm convinced, see their own fear reflected back at them, and sometimes they would cry. Illness is a scary business, and somewhere deep inside, or maybe not so deep inside, we're all wondering if it could happen to us, and how we would cope if it did. Many times I ended up giving comfort and hugs to people who had intended to comfort me, and before saying good-bye, could hear myself reassuring
them
that they were going to be okay.

At one time or another, during times of personal struggle or loss, we've all heard people tell us they would “pray for us.” Just an expression, I'd always thought, until I felt the power of that sentiment when it is offered, and
meant
, by tens of thousands of people. The feeling is overwhelming; I have no doubt that being on the receiving end of so much spiritual energy has gone a long way to sustain me over the last couple of years. I no longer underestimate the power of prayer.

Nor, it seems, do some scientists. I recently read about an experiment in which researchers at Columbia University tested the power of prayer to help women with fertility problems to conceive. A group of strangers, members of several different religious faiths in America, was asked to pray for a group of women in a Korean fertility clinic who had no knowledge of the experiment. At the same time, a separate control group at the same clinic received no prayers. At the end of the study, fifty percent of the women who'd been prayed for got pregnant, while only twenty-six percent of the control group conceived. This is exactly the opposite of what the researchers had expected—their stated intention had been to
dis
prove the efficacy of prayer.

The reaction to my announcement allowed me to return to my regular routine with a new sense of freedom. Though I still struggled to appear smooth while at work—Mike Flaherty, after all, didn't have P.D.—I no longer felt pressure to hide my symptoms the rest of the time. Now I could choose where and when to medicate, and to do it for comfort rather than camouflage.