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 beca
use 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 disprove 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.
Without my even realizing it, my whole system of symptom management changed. I began to see that being “off” in a public situation was really only a problem if I found it troublesome—if it kept me from doing something I wanted to do. If not, then being “off” was downgraded to the status of mere inconvenience. My tremoring, shuffling, and dyskinesias might earn me second looks from people, but what the hell, I was that guy from TV. I was used to getting second looks. So what if the second look now might mean, oh, that's right, I heard he has Parkinson's.
One evening a few months after I revealed my diagnosis, Tracy and I attended a benefit fund-raiser in New York City, one of those glitzy galas with speeches, a charity auction, and for a grand finale, a big-name musical act—in this case, the Who. All through the early part of the evening, during the speechifying and fund-raising, the lights in the banquet hall were ablaze, and there at table number six sat shaky me, extravagantly symptomatic. Maybe it had something to do with the salmon appetizers—sometimes eating too much protein interferes with the Sinemet. Rigid almost to the point of being frozen, except for a persistent flapping in my right arm, I was aware that many of the diners at the surrounding tables couldn't keep their eyes off me. It didn't bother me a bit, although I did try to be extra careful during the auction part of the proceedings—having Parkinson's at an auction can be an expensive proposition.
“I just hope my pills kick in by the time the Who comes on,” I told Tracy. “Because I want to be able to relax and enjoy the music.” That's all I was thinking about. I realized this represented a 180-degree change in outlook, a change made possible by my willingness to let others in on my disease. A year earlier, I would have looked at the same situation the other way around. If I can just hold it together now so nobody notices, I'd have told myself, I don't care how I feel when the lights go down and the show starts. Disclosure had allowed me to rearrange life so that I could get more from it. Sure enough, the lights went down, Pete Townshend windmilled, Roger Daltrey screamed, and I felt that welcome, quick couple of spasms in my left leg—oh baby, I love it when the drugs kick in.
With my P.D. out in the open, negotiating my responsibilities while finishing out the 1998–99 Spin City season was significantly easier than it would have been had I remained closeted. Whether people knew or didn't know, however, made no difference to the disease, and my symptoms continued steadily to worsen. Even without the burden of maintaining a false front, the stress of the job was still considerable, and by the beginning of April, when the show wrapped and we all went off on hiatus, it was clear that I was in worse shape than when we had begun production the previous August.
In preparation for the next season, we made some changes, hoping to lighten my load. One of them was Gary's idea. He and I had reconciled our differences—Gary had called to show support soon after the events of Thanksgiving, and I consulted him often on various production questions. “You know, there's no law that says you have to do the show on Friday nights,” Gary said. “Why don't you film on Tuesdays instead? That way you get a nice two-day rest in the middle of your workweek.”
In June, as usual, we assembled the producers and writing staff to hash out story ideas for the next season. The writers would develop these over the summer months and have them in script form by the time we returned to work in August. It was at one of these meetings that I suggested introducing a new cast member, someone with a certain amount of notoriety, who could take some of the pressure off me. My partner Danelle Black mentioned Heather Locklear, erstwhile femme fatale from both Dynasty and Melrose Place. Tracy and I had shared a table with Heather and her husband, Bon Jovi guitarist Richie Sambora, at the Golden Globes a few years back, and I remembered them as funny and relaxed dinner companions. We spent a lot of the night kidding one another about being at the “loser” table because, while Heather and I had both been nominated, neither of us took home the statue that year.
“She'd be a home run for us,” I told the Spin City writing staff. True, she hadn't done a sitcom before, but I didn't think she'd have any problem with the comedy. After all, Melrose and Dynasty had been so campy, they were just a laugh track away from being sitcoms anyway. So the offer went out, and we were thrilled when she accepted. The move paid off, and in the end, I believe, it secured the future of the show.
Still, even with Heather on board to carry many of the story lines and handle much of the publicity work that had previously fallen to me, I realized early that autumn that my days as an actor on a weekly television series were nearing an end. It seemed that no matter how many concessions I made to my illness—fewer workdays, less rehear
sal time, delegating more and more of the peripheral duties—it was never enough. The disease continued to take its toll. I could still get the job done, but I found that most of my time off the set was now spent resting, girding myself for the hurdle of the next episode. More than ever, the energy it took to perform my job well robbed me of the opportunity to devote time to the other interests in my life. There just wasn't much left for my family and for what was becoming a growing involvement in Parkinson's advocacy work.
U.S. Virgin Islands—December 31, 1999
After reading this far, you might conclude that all of my epiphanies come to me at or near a beach. Well, here's another one. Tracy and I were snorkeling with Sam, while Aquinnah and Schuyler were playing with friends at the shoreline. It was late in the afternoon, the best time, we were told, to spot sea turtles. I was dubious. We'd been coming to this resort for the last three winter vacations and I hadn't seen one yet. But now, directly ahead of me in the blue-green water, Sam was pointing excitedly. Then his head disappeared above the surface. T and I popped up to join him. “Did you see it?” he sputtered. “It's a big one.”
The three of us submerged again just in time to see a sea turtle push off the sandy bottom where he had been resting, trailing a billowing cloud of fine white sand. Keeping a respectful distance, we swam along behind him as he grazed the strands of sea grass just inside the coral reef. Satisfied they'd finally gotten a good look at one of these elusive creatures, Tracy and Sam made their way back to dry land, but I was mesmerized.
Lucky Man Page 26
