Lucky Man

by Michael J. Fox

  Arranging life in order to be “on” in public, and “off” for as little time as possible, is a balancing act for any P.D.er. In my case, the gut-wrenching prospect of losing my balance, figuratively or literally, on The Late Show, say, or at a public event where there was no way to avoid close scrutiny, loomed ever larger the longer I remained in the closet.

  Learning to titrate medication so that it kicked in before an appearance or performance, sometimes within minutes of my cue, became a process of continuous tweaking and refining—lots of trial with little room for error. Timing a punchline was a joke if I hadn't timed my meds accurately. I became a virtuoso at manipulating drug intake, so that I'd peak at exactly the right time and place.

  When the L-dopa begins to work, and the current “off” segues into a fresh “on,” the sheer relief of the transformation is its own special high. The people close to me are attuned to the physical ceremony that marks my latest transition back into the world of the fully functioning—the subtle sigh, accompanied by a sudden spastic thrust or two of my left leg, immediately followed by the outstretching of my arms and rolling of my head. The leg thrusts are involuntary but entirely welcome, because they signal the beginning of the end. As the tension leaves my body, it always travels down and through that particular limb, and then into my foot, which rotates three or four times. Finally, as if being pulled by the force of a vacuum, the tension disappears, departing through the sole of my left shoe. The extension of my arms, and rolling of my head, are simply my body's way of celebrating the reunion of mind and motion.

  This ritual ending of an “off” period is immediately followed by another personal rite, this one marking the return to “on” status. If you ask Tracy or anyone else who spends a lot of time with me, they will tell you that I do, and say, the same thing every single time: I smile, close my eyes, and then, like Barry White on helium, croon, “oh baby . . . I love it when the drugs kick in.”

  “ON,” “OFF”—AND “OUT”

  Spin City Season Three—1998

  Presenting an accurate snapshot of my symptoms at any one point in time is never easy, but what I've just outlined describes fairly well the body I had to work with at the beginning of Spin City's third season. In the months following the thalamotomy, the success of the procedure in taming my left side was a happy and obvious matter of fact. Just as obvious, though, was the rapid escalation of the new tremor on my right side—worsening at a rate I could track almost on a daily basis. I wonder if the disappearance of the furious flapping in my left arm had also served to throw the other symptoms (rigidity, hypomimia, and the rest) into sharper relief. Whatever the reason, there was no doubt that after a sweet but all-too-brief post-op plateau, my disease was confronting me with a whole new set of challenges, personally as well as professionally. It was also hastening a decision, long postponed, to bring the private and public sides of my life into closer alignment. Keeping my disease secret was rapidly becoming untenable—and destructive.

  Most P.D. patients will tell you that stress exacerbates their symptoms, and during the summer of 1998 my job suddenly got a whole lot more stressful. In response to our persistent creative conflicts, Gary Goldberg decided he would not return to the show for the third season, remaining instead in L.A. to be with his family and pursue other projects. Though at the time the split was grueling emotionally, I'm convinced it ultimately preserved our friendship—in many ways stronger today than ever before—and set the stage for a professional reconciliation two years later that would ensure the series’ future after my retirement. In the short term, though, I now found myself with the creative authority I'd craved for the first two seasons: a vast increase in my responsibilities. Be careful what you wish for—I was now in charge of the show.

  It's not that I didn't have tremendous help. Bill Lawrence returned to the show, as well as writer-producer David Rosenthal, and most of our talented, if eccentric, writers, technical crew, and administrative staff. Andy Cadiff, who had served brilliantly as director during the previous season, was given the added title of Spin City producer, and proved an invaluable partner in running the set. Danelle Black, the president of my production company, became a consulting producer, and as the executive closest to me, was inundated with requests for my time and attention. Danelle's skill at running interference for me transcended mere professional responsibility—this was loyalty and friendship of the highest order.

  Still, I now had countless production issues to oversee and decisions to sign off on during each twelve-to-fourteen-hour day: rewrites for that week's episode, outlines and story arcs for scripts weeks in advance, casting and crew hirings, wardrobe and set consultations, music and editing oversight, and the continued tending of diplomatic relationships with the network and studio. All of this I enjoyed. Well, almost all of it: my least favorite duty, as a lifelong hater of mathematical absolutes, was establishing and then sticking to a weekly production budget.

  As demanding as all this was for me, I was beginning to appreciate how truly difficult I was making life for the people I worked with—the majority of whom didn't know about my health issues. I'm thinking of all the times my symptoms forced me to reschedule appointments at the last minute with various department heads, only to have to reschedule again and again, and sometimes ultimately cancel with no explanation. My behavior must have seemed flaky at best, and at worst arrogant and disrespectful. The many last-minute production delays, running anywhere from a few minutes to a half an hour or more, that I usually blamed on some vague injury or “important phone call from the West Coast,” must have been a source of mystery and annoyance. Not that it was any easier for those who knew what was really going on. Danelle, Bill, Andy, the cast, and the handful of others I had let in on my secret were under constant pressure to cover for me, to come up with fresh excuses and, if they didn't have time to check their stories against mine, worry they were going to betray my confidence by being caught in the whitest of lies.

  There were already rumors, of this I was well aware. Some of them originated, I suspect, in Boston. My frequent visits to that city for medical treatment and consultation had somehow been brought to the attention of a pair of local newspaper gossip columnists.

  They were the first, I believe, to link me to some vague and undefined “mystery” illness—as far back as 1997. To their great indignation, I basically ignored them, and because their speculation was so unspecific, these mentions gained little wider attention. It wasn't until 1998 that the national tabloids cautiously picked up on the story. They printed a few items, at first blind, and then some that referred to me directly as having been stricken by an unknown illness and currently undergoing treatment.

  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 twis
t, 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.”