Lucky Man (29 page)

The first time I heard the word “Parkinson's” from any of the Florida-based national scandal sheets was a very up-close-and-personal event. One morning early in 1998, shortly before my operation, Jimmy Nugent, my
Spin City
driver and a long-time friend, arrived to pick up Sam and me at our Upper East Side apartment. As on many weekdays, Jimmy would first drop Sam at school and then take me to the set. We were walking the few short steps from the front door of our building to Jimmy's idling SUV when a particularly harried woman, who seemed to appear out of thin air, jumped in front of me, disregarding Sam and flustering Jimmy. Identifying herself as a reporter from
The Star
, she started peppering me with questions about my health. Without saying a word I smiled, shepherded Sam into the car, and climbed in after him. We started to pull away and to my amazement the woman stepped into the street behind us as we pulled away, waving her arms and screaming after us at the top of her lungs, “Parkinson's disease!” What was she thinking? That hearing those words would get me to halt the car, step out, and say, “Well, yes, as a matter of fact”?

People who worked for me continued to receive calls from the tabloids, particularly
The Enquirer
, throughout 1998. They were now freely using the word “Parkinson's,” at least in their private conversations with us, though still shying away from making such a declaration in print. Our response was, as it would be with any enquiry of this sort, “No comment,” adding only this: “Print whatever you want to print, but make good and sure you believe it, because if you get it wrong, you know you'll hear from us.” I felt no sense of dishonesty in taking this position. I am not a politician or an elected official, so it's not as if the public interest would somehow be served by publicizing intimate information about my health.

The Enquirer
made the case that my fans have the “right” to know, an argument all too reminiscent of their protestations around the time of the wedding. My reaction was roughly the same. I'm sure that anyone who followed my career might be interested were I to tell them about my situation, but I'm equally sure they would not like the idea I'd been bullied into making such a disclosure, and further, would direct their ire toward the bully. The tabloids know this, and fear a backlash from their readers as much as they fear lawsuits. They held the story.

So who were the tipsters? In the case of the initial Boston items, a number of possibilities came to mind: airport workers, cab and radio-car drivers shuttling me to and from hospitals and clinics, maybe even fellow patients who'd noticed me slipping in and out of the side doors of my doctors' offices.

But really, what did any of it matter? I wasn't going to be consumed by this sort of guessing game. By now I had come too far, and wasn't about to surrender to a paranoia that I understood could be as destructive as any disease. And if
who
was talking didn't interest me,
why
they were talking seemed even less important. People do what they do for their own reasons—it's none of my business finally and wholly out of my control. I could only be concerned about myself and be responsible for my own actions.

In fact, it was that sense of responsibility, much more than the badgering of the checkout counter gossips, that was edging me toward “coming out.” Life would undoubtedly be easier for all of my friends, family, and co-workers if I could be open about my health. And I had a responsibility to myself as well. Not only would my job as a producer be made easier if I didn't have to work so hard at secrecy, but the part of
Spin City
I loved best—acting—would be a lot less stressful.

As it was, each week's show presented a brand-new set of creative and physical challenges. Could I count on my body to respond in performance the same way it had in rehearsal? This gradually became a moot point, as rehearsal became a luxury I could less and less afford—yet another baffling behavior in the eyes of the uninformed, who easily could have interpreted it as arrogance or indifference.

By now I could see that the strain I put myself (and everybody else) through by trying to be funny without being upstaged by my invisible pet elephant was as absurd as it was exhausting. Whatever I appeared to be doing onstage, I was, in fact, doing something else: hiding symptoms with a repertoire of little tricks and distracting maneuvers—manipulating props, leaning against walls and furniture, and when all else failed, jamming my hands into my pockets. Many days I had to concentrate more on my physical relationship to the scene unfolding around me than to emotional, comedic, or dramatic content. All the while I was doing the math—how long since the last pill? . . . how long until it wears off? And at what point in the show will I have to take another? “Please . . . let it be during a scene I'm not in.”

I mentioned how quickly I must react to the harbingers of an “off” cycle, and the consequences if I don't. If the warning came when I was in the middle of a four-to-five-minute scene, there wasn't a damn thing I could do to stave off the return of my symptoms. I had a name for this crisis of circumstance: “turning into a pumpkin.”

“Turning into a pumpkin” live onstage would blow the whole thing. If a studio audience were to detect a tremoring of my arm, a slowing of my speech, or a rigidity of my movements, it would undoubtedly betray the fact that something was wrong, and that something, whatever it was, would be decidedly unfunny. This had become my greatest fear, just as making an audience laugh remained one of my greatest pleasures.

So I did everything I could to make sure the audience didn't know I was sick. This, as much as anything, had, by 1998, become my “acting.” I have always thrived on my relationship to the audience, and feared taking any risk that would distract or detract from it. Coming out of the closet was just such a risk. Timing a joke depends on the audience being with me, wherever I choose to go, and if their attention is lost for even a second while they are watching my arm or a hitch in my gait, then I've lost them. I was beginning to realize that this, more than anything else, was what was keeping me from telling people that I had Parkinson's disease. If an audience didn't know what I was dealing with, they wouldn't know what to look for, so I still had a shot at making them laugh. But if they already knew before they even took their seats in the audience or turned on their televisions at home that I was battling an incurable neurological disease, would they still go along for the ride, or would they be watching for symptoms and feeling sorry? The bottom line was this: can sick people be funny, or—to put it more bluntly—can you laugh at a sick person without feeling like an asshole?

It was becoming abundantly clear, though, that to carry on as I had been for the first part of the 1998 season could only be destructive to my hard-won sense of who I was. Over the past seven years I had experienced so many highs and lows, and had finally set about facing my fears. I had come a long way toward decompartmentalizing my relationships and attitudes, bringing what I felt inside into a truer relationship to what I said and did. So much of the distance my disease had put between me and the people I cared about had been narrowed. But what about the audience? Until I felt ready to tell them my story, my life would never be fully integrated, and as happy as I was in every other area—my marriage to Tracy, my relationship with my kids, and all my other interactions with the outside world—this last fear, rooted in concern for my career, which is to say for my relationship to my audience, was keeping me from being truly free.

I can vividly remember all those nights when the studio audience, unknowingly, had to wait for my symptoms to subside. I'd be backstage, lying on my dressing room rug, twisting and rolling around, trying to cajole my neuroreceptors into accepting and processing the L-dopa I had so graciously provided. When that approach failed, I'd spruce up the walls with fist-size holes, the graffiti of my frustration. How much longer could this go on?

Manhattan—November 1998

As soon as I entered Joyce's office, I collapsed on the couch. It was Friday morning. I had a show to do that night and was feeling the weight of the week's work pressing down on every part of my being.

“I've had this feeling lately,” I began. “One I haven't had in years. That old feeling like I'm waiting for the other shoe to drop.”

Joyce was quiet, considering me for a beat. Then, when she was sure she had my full attention, she gave a slight smile and said, softly and simply, “Michael, you have Parkinson's disease—the other shoe dropped a long time ago.”

Almost as if I had walked into a hug, I immediately felt enveloped by a wave of emotion. My eyes welled up and tears spilled their warmth onto my cheeks; tears not of sadness or self-pity but relief, pride, and deep, deep gratitude. Joyce was right. The other shoe had already dropped, and I had survived. There was nothing left to fear.
You're only as sick as your secrets
.

It was time, I was ready.

ALADDIN SANE

New York—November 30, 1998

Phase one was complete.
People
magazine already had the story, and just as the issue was hitting the newsstands, I was embarking on phase two: telling my story again, this time in front of a TV camera.

It was a simple plan—two interviews, one print, one television, the news would be out and I could get on with my life. But I, of all people, should have known that nothing ever goes quite according to plan.
People
broke the story on their web site on Thanksgiving eve, nearly a week earlier than expected. The response had exceeded anything I could have imagined, life as I knew it would never be the same, and now, in yet another surreal twist, I found myself in the middle of an argument between my wife and Barbara Walters.

Argument
might be too strong a word. It was more like a minor disagreement—over a leather coat. A week or so earlier, I'd met with Barbara (and her producer) in her East Side apartment to discuss the parameters of the interview I'd offered to do. As I was leaving, she noticed me struggling with my coat—I was dyskinetic and having trouble getting my arm into the sleeve. She asked me if that was a symptom of P.D. I said it was. Now, midway through the taping, during a pause while the cameramen changed reels, she asked if I'd be willing to take my jacket off and put it back on again in front of the camera to demonstrate my dyskinesias.

Tracy was adamantly opposed, and spoke up. To stage such a demonstration would come across like a play for sympathy, she felt, and she knew that was the last thing I wanted. Barbara countered that letting people see me struggle with my coat would give them a more complete picture of my symptoms. I stepped in and explained that it was a moot point anyway. The Sinemet was working right then, so I could get in and out of the coat with ease. I had no problem with describing that particular symptom on camera, as long as we skipped the floor show. Whatever tension there had been evaporated, and Barbara leaned forward to give Tracy a hug. “You're a lucky fellow, Michael. She loves you very much.” Didn't I know it.
How about that Tra, sticking up for me even when it means going toe to toe with Barbara Walters.

Once we had returned to the set, but before the cameras began to roll, Barbara tapped my knee. “You know this isn't just morbid curiosity,” she said. “People care about you. This is a learning experience for everyone.”

Los Angeles—November 19, 1998

Having finally made the decision to share my experience with Parkinson's, I had one goal in mind: to give an honest account of how, over the last seven years, I had integrated the disease into a rich and productive life. It was important for me to convey my optimism, gratitude, perspective, and even an ability to laugh about certain aspects of life with P.D., being a firm believer in the joke writer's axiom that comedy = tragedy + time. I viewed my disclosure as a way for me to move forward in my life and career, not as a summation compelled by catastrophe.

This was not a tale of woe, as Tracy would remind Barbara Walters; I sought no pity, or tears. Nor was I eager to cast myself in the role of reluctant hero, breaking out of his silent suffering to take his fight public, and serve as a poster boy for the Parkinson's “cause.” (I'd done a little research on existing foundations and, frankly, had found the landscape too confusing to navigate.) I was simply tired of hiding the truth from people and felt ready, finally, to present it to them on my own terms, with the hope that they'd respond to my story in the spirit in which it was offered.

Ultimately, though, going public would be the truest test yet of a philosophy I'd been growing into over the course of the past seven years in the wilderness.
Take the action and let go of the results
. That sounds good, and I could definitely talk the talk, but could I walk the walk? From the moment Todd Gold, the
People
magazine reporter, pulled out his notepad and checked his tape recorder's batteries, talking was suddenly the last thing I wanted to do, but walking was out of the question—for one thing, I was so anxious I could feel my legs turning to jelly; for another, I'd made up my mind to do this, and I was going to see it through.

The interview took place in the Los Angeles office of Nanci Ryder, my publicist. I'd come to L.A. to inform executives from DreamWorks and ABC of my decision; they'd given me their full and unflinching support. By the time the two-hour interview was over, Todd's notepad and audiocassettes were full—the tapes held my words, and his shorthand scribbling had captured my behavior, tics, tremors, and facial expressions. The realization began to sink in:
Oh my god, what have I done?
I hadn't
shared
my story, I had
given it away
. It was no longer
mine
.

What Todd knew, and I was just beginning to grasp, was that my own words would make up only a part of the article he was about to write. However sincere my upbeat and philosophical approach to the illness, in the press coverage the
subjective
reality of my experience with Parkinson's would inevitably be juxtaposed with the
objective
reality of the disease, in all its destructive cruelty. The rules of good journalism demanded as much. Doctors, scientists, and in all likelihood, other patients would present a grim picture of this crippler of nearly one and a half million Americans—and in the process, force me to take a fresh look at it myself. When Todd's article finally appeared in the pages of
People
magazine, I'd learn that even my own neurologist, Dr. Ropper, who had spoken to the reporter with my permission, didn't sugarcoat my situation: