June 1, 2002
Below is an excerpt from Michael J. Fox's memoir, Lucky Man, which was published by Hyperion in April 2002. Fox has donated all of his profits from Lucky Man to the Foundation. Click here to order the book online
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Chapter 8: Unwrapping the Gift
I need to explain the "on-off" phenomenon. This Jekyll-and-Hyde melodrama is a constant vexation for the P.D. patient, especially one as determined as I was to remain closeted. "On" refers to the time when the medication is telling my brain everything it wants to hear. I'm relatively loose and fluid, my mind clear and movements under control. Only a trained observer could detect my Parkinson's. During one of my "off" periods, even the most myopic layperson, while perhaps not able to diagnose P.D. specifically, can recognize that I am in serious trouble.
When I'm "off," the disease has complete authority over my physical being. I'm utterly in its possession. Sometimes there are flashes of function, and I can be effective at performing basic physical tasks, certainly feeding and dressing myself (though I'll lean toward loafers and pullover sweaters), as well as any chore calling for more brute force than manual dexterity. In my very worst "off" times I experience the full panoply of classic Parkinsonian symptoms: rigidity, shuffling, tremors, lack of balance, diminished small motor control, and the insidious cluster of symptoms that makes communication—written as well as spoken—difficult and sometimes impossible.
Hypophonia, hypomimia, and "cluttering" can all get in the way of verbally expressing feelings and ideas. Hypophonia weakens the voice so badly that for some, like Muhammad Ali, simply making yourself audible demands a tremendous effort. So far I've been spared that particular challenge. When I'm "off," my struggle is with "cluttered speech" combined with hypomimia, the medical term for the "mask effect" often observed in the faces of P.D. patients. My ability to form thoughts and ideas into words and sentences is not impaired; the problem is translating those words and sentences into articulate speech. My lips, tongue, and jaw muscles simply won't cooperate. What words I do smuggle through the blockade can be heard, though not always comprehended. Try as I might, I can't inflect my speech to reflect my state of mind. And it's not like I can liven up my halting monotone with a raised eyebrow; my face, utterly expressionless, simply won't respond. Like Emmett Kelly, but without the greasepaint, I often appear sad on the outside while actually smiling, or at least smirking, on the inside.
Micrographia is precisely what it sounds like—tiny writing. I have a stockbroker friend, a fellow Young Onset patient (amazingly, the friendship predates our diagnoses) whose secretary was the first to recommend he consult a neurologist. Over the course of a year or so, she had found it increasingly difficult to decipher his memos, and finally confronted him with the evidence of his incredible shrinking handwriting. Without drugs, my own penmanship becomes similarly microscopic. Combined with the stubborn refusal of my "off" arm to move in a smooth, lateral, left-to-right direction, the result is a fractured column of miniature scribbles.
These impediments to self-expression are not the most painful or debilitating features of Parkinson's disease, yet they madden me more than even the most teeth-rattling full body tremor. When the meds are "off" and P.D. has already rendered me a prisoner in my own body, the suspension of my telephone and letter-writing privileges seems excessive.
Then there's the sensation of not being able to settle, or land in any one spot for more than a second or two. When I'm "off," I feel like I'm dangling from a coat hanger that has been surgically implanted under my skin in the muscles of my back, wedged between my shoulder blades. The sensation is not quite one of being suspended in the air; it's more like being jacked up, with my toes scraping and kicking at the ground, straining for purchase, so that, if only for a moment, both feet can plant firmly and bear the full weight of my body. During the years I spent promoting the fiction that none of this was actually happening to me, my only recourse was to isolate myself and grit it out.
Three to four times every day, I go through the transitions between the two poles, navigating the tricky passage from the land of "off" to "on." The most surreal aspect of this thrill ride is that during every "on" time, I delude myself into believing that that, and not the other, is my "normal" condition.
None of the pills I take gives me even a mild buzz, but the freedom of movement and the interlude of physical grace they provide are intoxicating. I don't squander a nanosecond of this time contemplating the inconvenient truth that what I'm experiencing is not "real." I don't think about that when I'm splashing in the surf with Aquinnah and Schuyler, fishing for bass with Sam, or huffing to keep up with Tracy on the bike rides she loves so much. I truly do forget and, lost in this sublime ordinariness, it's easy to miss the subtle twitches, creeping rigidity, and vibrating sensations urging me to crack open the vial and toss back another little blue pill.
Every P.D. patient's experience is unique. Mine is this: If I miss or ignore those early-warning signs, there's no second chance. I am down for the full sixty to ninety minutes. It's no good upping the dosage, either—that only results in exaggerated dyskinesias (random, spastic, hyperextended movements of the extremities) when the L-dopa finally does take effect. As with the "on" period, it is hard to believe that the "off" is ever going to end, and it doesn't help to remind myself that it always does.
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?
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?
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.
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:
Ropper is hopeful that Fox will be functional for at least another 10 years and maybe well into old age. But he cannot rule out the worst, which is that Fox may well have to give up work—and it is uncertain whether he will need further brain surgery. "This is a very serious neurological disease," Ropper says. "In extreme cases patients live a bedbound existence where they require total care."
I thought about my kids. Tracy and I had always been able to frame the disease for them; we were the sole explainers of its potential impact on their lives. Now, they would also learn about Parkinson's through the reactions of their teachers, classmates, and countless others, well away from the security of our reassurance. The genie was out of the bottle, and not only had I no way of knowing how big it would get, there was no way to gauge its disposition. Would it turn on me in spite for having kept it captive for so long?
Thanksgiving Weekend, Connecticut—November 26-29, 1998
As soon as the story hit the People web site, all hell broke loose. We were packing up to spend the four-day holiday weekend with Tracy's family in the country, and I couldn't get out of town fast enough. The phone rang incessantly. Too nervous to speak with anyone, I'd check the voice mail periodically and hear the messages from friends and family. Some, especially those left by business associates like Nanci Ryder, contained long lists of further messages from newspaper and magazine editors, radio reporters, and TV newsmagazine anchors. For some reason, the mention of a call from Dan Rather hit me right in the solar plexus. It would be disingenuous to suggest that I didn't expect some media attention, particularly in the entertainment press, but in no way did I anticipate the magnitude of the reaction. They were treating this like a big news story. Dan Rather?
It quickly became clear that I was the big news story over that holiday weekend. My revelation was the lead item on all of the network newscasts, there were hourly updates on the cable channels, and above-the-fold headlines in big city newspapers throughout the United States and Canada.
Holed up in Connecticut, I did my best to avoid television and the newspapers. To say I was having second thoughts would be a gross understatement—the number was well up into the triple digits and climbing. I was sure that I wouldn't be happy with any of the coverage. What I dreaded most was being cast as a tragic figure, a helpless victim. TV's erstwhile boy-next-door stricken by an incurable disease, transformed into a frail object of pity. Poor bastard. Just as excruciating was how long the story lasted. I could tell from the telephone calls I was receiving from friends, as well as the growing stack of messages from well-wishers and media outlets around the world, that my story, as we say in showbiz, had legs. The coverage spilled over into days two and three and even four; still front page and near the top of the broadcasts. I became convinced that whenever I showed my face again people would flee in terror. After all the nonstop eulogizing, they'd figure they were seeing a ghost.
Yet when I finally stuck my toe into the swirling torrent of coverage, I learned just how badly I'd misjudged the situation. While some in the media (the usual suspects) were stressing the maudlin and sensational angle, in the vast majority of the reports, the overall tone was surprised but respectful—and concerned. In man-on-the-street interviews, members of the public offered expressions not so much of sympathy, as I feared, but of genuine empathy, as well as heartfelt wishes for a positive outcome. Even better, much of the follow-up coverage centered less on me than on Parkinson's disease itself: there were long, detailed features describing the condition, interviews with doctors explaining the process of diagnosis, the prognosis, and the variety of treatments available. A recurring topic of discussion was the heretofore little-known phenomenon of Young Onset P.D. Local newspapers and TV affiliates across the country were interviewing P.D. patients of all ages, giving them an opportunity to talk about their experiences and document their struggles, fears, and hope for the future. Scientists and researchers discussed potential breakthroughs and possible cures not too far over the horizon.
Without intending to, I had sparked a national conversation about Parkinson's disease. This I discovered on our last night in Connecticut. At the time I still wasn't ready to turn on the TV, but naively thought it would be safe to check my e-mail. Wrong—as soon as the AOL home page appeared on my screen, there was my picture, anchored by a scrawling headline. I half expected to hear the robotic chirp of Elwood Edwards greeting me with, "Welcome! You've got Parkinson's!"
I put off reading my e-mail—there was too much of it—and instead began to surf a few of the P.D. web sites I'd been visiting over the last few months. One in particular caught my attention. It was an online chat room for P.D. patients. I lurked there for a while, eavesdropping on their conversations. To a person, these patients were heralding my announcement and enthusing over the welcome turn in coverage, away from the celebrity angle and toward the patient community. Some commented on the impact the attention was already having on their own lives.
I distinctly remember one person writing, "I went to the market this morning and the cashier asked me why my hand was shaking. I told her it was Parkinson's, and she was really interested. 'Oh, just like Michael J. Fox.' For the first time in years, I didn't feel embarrassed."
Emboldened, I finally turned on my television set, and sure enough, there I was. MSNBC had combed through its archives, pulled several television interviews spanning the length of my career, and compiled them into a slapdash biography. A lot of it was in slow motion, giving the piece a somber tone: This is the Michael J. Fox that was. As any public figure will tell you, you know you're in trouble—dead, sick, or under indictment—whenever they start running footage of you in slow motion. It was as close to watching my own obituary as I ever want to get.
Still, for the first time in several days, I had the unmistakable feeling that everything was going to be okay after all. There was no question that some people would view the news of my disease as an ending, but I was starting to sense that in a much more profound way, it was really a beginning. I was ready to return to New York. First thing in the morning was the interview with Barbara Walters. I'd tell my story one more time, referee a tiff over a leather coat, and nod in agreement when Barbara leaned over to say, "You know, this is a learning experience for everyone."
Out of the Closet, Into the Classroom
Well, Barbara, it was definitely a learning experience for me. As much of an education as the previous seven years had been—my private Parkinsonian tutorial—the lessons that came in the wake of that fateful Thanksgiving have been all the more powerful and humbling. While there's no doubt that I needed every minute of those seven years to make my own accommodation with Parkinson's, I'm grateful I didn't wait any longer to share my story. To do so would have been to deprive myself of what has been one of the most rewarding—and educational—experiences of my life.
My greatest teachers now came from within the P.D. community itself. My coming out had an impact on their lives, as it turned out, but even before that, their stories—gleaned from what I read on P.D. web sites suddenly lit up with conversation—had at least as profound an impact on mine. It was as if I was looking in a window, and to my comfort and relief, there were lights on and people inside—people just like me.
More like me, as a matter of fact, than I had ever realized—beyond our common diagnosis, beyond the matching collection of pill bottles in our medicine cabinets, and beyond our shared physical tribulations. Just as I had, many of the P.D. patients online were logging in to cyberspace from the well-guarded security of their own private "closets." I had always presumed that my impulse to keep my diagnosis a closely held secret was motivated purely by my celebrity status. I soon discovered that a great number of Parkinson's patients, particularly those in the Young Onset category, were also hiding their illness from others. Each had their own reasons, but there were a few recurring themes. These I picked up on in the many letters and e-mails I received after my disclosure.
Fear of being marginalized and misunderstood—stigmatized—is a concern that comes up time and again. Carl, a high school teacher in Texas, was forty years old when he watched me on his local news at noon on Thanksgiving day in 1998. Though he wouldn't be officially diagnosed with Parkinson's until two weeks later, he didn't doubt that the symptoms he'd been living with for the last couple of years were almost identical to the ones I was describing. He wrote to thank me for my "public witness," telling me that it had "made my metamorphosis a bit easier. You showed people that a good, intelligent, vigorous person can get P.D.; this reduced the stigma of freakishness that otherwise attaches itself to the chronically ill, particularly if they are young."
Carol, a young mother and P.D. patient from New Jersey who is now a Parkinson's advocate, says, "I must have, for about four years, pretended I didn't have anything [wrong with me]. I didn't have a tremor. And I could sort of do that. And I felt terrible having to deceive people. When [you] came out and made it an illness not to be ashamed of, it made me stop pretending, it made me not be embarrassed about the idea of going on a walk and raising money. Made my kids see it as—not normal—but not bizarre."
The prospect of being considered bizarre, a freak, or an object of pity is enough to keep someone in the closet. For many, however, there is an even more basic concern, having to do with their very survival and that of their families. Young adults, many just starting out or just hitting their stride in life, with children and mortgages, car payments and yet-to-be-realized career goals, are terrified that Parkinson's will cost them their jobs, often with very good reason.
"Some guys must break out in night sweats wondering if the next day at work is going to be their last," says Greg, an attorney I met online at a P.D. web site. Greg was employed as a writer/editor for a legal information provider when he was diagnosed with Young Onset Parkinson's in March of 1995. He was forty-three years old at the time; today he's on disability. "I used to advise people to tell their employers [about their diagnosis] because under the Americans with Disabilities Act you were protected if you were disabled, 'deprived of a basic life activity,' such as being able to work," Greg explained to me recently.
"Supposedly you're protected if you tell your employer and request accommodations. The magic words are 'I have it and I need this to do my job.' But if the employer runs out of reasonable accommodations, or has attempted to make accommodations and found it too difficult, or they're just savvy and want to cheat—then they can just find another reason to fire you. They're thinking, 'What's this going to do to my insurance rate?'
"ADA or no ADA," Greg says, "there's the law and then there's the real world."
As I well understood, if you're a Young Onset Parkinson's patient, worried that being open about your diagnosis will hurt or even destroy your career, it's all too tempting to get caught up in an elaborate web of obfuscation. In an insidious way, the disease itself is your accomplice in this deception. The progression is slow, the symptoms are not immediately obvious—and who'd be looking for them in a forty-year-old anyway? To all outward appearances, you seem fine and you carry on with your life. But you're not fine, and you're getting worse, and so you wait as long as you can to tell anyone, adding the terrible burden of secrecy to the already considerable weight of your disease.
As I made the acquaintance of other P.D. patients, I began to put together a picture of the community I was now a full-fledged member of. I learned that there are nearly one and a half million of us, altogether, but the community is split into two very different demographic groups. Roughly ninety percent of P.D. patients are older, in their late sixties or seventies and beyond; many are infirm and living on fixed incomes—and without a great deal of political influence. Young Onset patients make up the remaining ten percent. These patients might constitute a real political force, if not for the fact that so many of them are still closeted.
I was beginning to understand why Parkinson's disease has traditionally received so little public attention, and relatively few government research dollars. I learned that in the mid-1990s, the National Institutes of Health were spending an estimated $2,400 per victim each year on HIV/AIDS research, $200 on breast cancer, $100 on prostate cancer, $78 on Alzheimer's disease, $34 on Parkinson's, and only $20 each on diabetes and coronary heart disease.
In the case of Parkinson's, the lack of funding was especially tragic, because the research opportunities were so promising. By the 1990s, scientists were following a number of exciting leads that pointed to a cure in the not-so-distant future. One of the more important of these new breakthroughs came in San Francisco during the 1980s. A doctor named Bill Langston had discovered a chemical compound, MPTP, in synthetic heroin that created advanced P.D.-like symptoms in young Bay Area drug addicts. (He wrote a gripping book about the phenomenon called The Case of the Frozen Addicts.) The identification of an agent that actually produced Parkinsonian symptoms opened up several promising avenues of investigation and gave scientists the ability to induce Parkinsonian symptoms in laboratory animals. "It created a tremendous renaissance in Parkinson's research," Dr. Langston says today. "As well as generating interest in the possibility that there is an environmental trigger for the disease."
There was a larger reason many scientists viewed Parkinson's as an exciting area of neurological research. According to Dr. Jeffrey Kordower, a professor of neurological sciences at Rush-Presbyterian-St. Luke's Medical Center in Chicago, "of the big three degenerative neurological diseases—Parkinson's, Alzheimer's, and ALS (Lou Gehrig's)—we think P.D. will be the first domino to fall.
"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 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 rehearsal 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.
As the turtle and I swam on together in disjointed tandem, the turtle trying to ignore me and me trying to pose no threat, I thought of all those documentaries I had watched as a kid: thousands of hatchling baby sea turtles making their way toward the safety of the ocean while seabirds dive-bomb, picking them off one by one. Only a handful will survive. And that's just the beginning of a turtle's ordeal. I noticed that this one was missing a sizable chunk of the rear flipper on his left side. How old was this guy? I wondered. An adult, obviously. What wars had he been through?
Leave him be, I thought, he's earned his peace. And I turned back toward shore. When I got back to the beach, Tracy was lying on a towel reading her book. I gently took it from her, puckering the pages with my wet, salty fingers.
"I'm done," I said.
"That's nice, honey," she replied. "Why don't you dry off while I read a few more pages, and then we'll get the kids ready for dinner."
"With the show, I mean. I'm done with the show. I'm going to retire at the end of the season."
The 52nd Annual Emmy Awards—Shrine Auditorium, Los Angeles—September 10, 2000
After four seasons and one hundred episodes playing Mike Flaherty on Spin City, this was my fourth Emmy nomination for the role. The three previous years I had gone home empty-handed, but Tracy and I never failed to have a good time at the Emmys. It gave us an excuse for a rare romantic weekend getaway; we'd check into our favorite L.A. hotel, spend our days lounging by the rooftop pool, and enjoy a nice meal or two out. It was also a chance to catch up with old friends we'd left behind when we moved to New York.
Win or no win, the Emmys was always a celebration, and that was especially true this year. My final Spin episode aired May 23, 2000, though I'd announced my pending retirement back in January, shortly after we got back from the Caribbean. Unsure what my leaving would mean for the show's future, I wanted to give the cast and crew plenty of warning, in case they had to find work or relocate their families. When the farewell episode was broadcast, I was overwhelmed once again by the public reaction. A third of the television audience that night tuned in for my last episode.
Even better was this: It turned out the show would be able to carry on after all. Gary Goldberg agreed to return as executive producer, provided the show moved operations to the West Coast. Heather and most of the cast would come back as well, and Charlie Sheen would join the show as the new deputy mayor. I felt bad for the New York crew who would have to find new jobs, but I was thrilled for the cast and for Charlie, who, besides being a talented actor, was an old friend. The survival of the show was good news for me too, since I owned a stake in it. I'd get to watch Charlie do my old job and still receive a paycheck. God bless America.
What made this Emmy weekend really special, though, had more to do with Tracy than me. Earlier in the year she had turned in a masterful, heart-wrenching performance as a rape victim on Law and Order: SVU. The guest role earned her a richly deserved Emmy nomination, her first. The awards in the guest performance categories had actually been given out the previous week and unfortunately Tracy hadn't won, but during the ceremonies a clip of her work was shown, along with that of her fellow nominees. It felt perfect that we should share the evening in this way. Throughout our marriage, the circumstances of my career and then my illness had put tremendous pressure on Tracy's aspirations as an actor, and this recognition from her peers was overdue.
When Gillian Anderson called my name to collect my award for Lead Actor in a Comedy Series, it would be disingenuous to suggest that I was surprised. While I was proud of my work that season, I would have to be in deep denial not to recognize that I was the sentimental favorite. But honestly, it was Tracy who I was thinking about when I bounded up to the stage. We make a point of not being one of those gushy Hollywood couples; we treasure the intimacy of our relationship and hold it close, but this time I couldn't help but gush. Most of my acceptance speech was dedicated to expressions of admiration, gratitude, and love for my wife.
It was a great moment, and I was fully in it. If I'd had a second to think about it, I might have reflected on what a different person I was now, compared to the young man—the boy—who stood before this audience accepting this award fifteen years earlier. Overwhelmed and completely unsure of myself, the joke I offered that evening—"I feel four feet tall"—betrayed a lot more about who I was than I realized at the time. And though this time I didn't say the words, there would have been no better way to mark my progress since that long ago evening than to have said, very simply, "I feel five foot five." Nothing more, nothing less, just exactly who I am.
Back to the Future
This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.
—George Bernard Shaw
Senate Appropriations Subcommittee Hearing, Washington, D.C.—September 28, 1999
The setting is as intimidating as it gets: one of those Senate hearing rooms you've seen so many times on TV, where the person giving testimony at some point invariably covers his microphone and leans over to hear the whispered cautions of his lawyer. Now I am that witness, preparing to speak before a Senate subcommittee. Dozens of flashbulbs pop in front of me, blinding me momentarily. I'm not here because I'm in trouble. Or rather I am—along with nearly one and a half million other Parkinson's patients on whose behalf I appear—in serious trouble, but of a kind far graver than any group of senators could ever cause. These senators can, however, help to get us out of this trouble, and that's why I've come to Washington.
At issue is federal funding for Parkinson's research, which, as I told the committee, is inadequate and disproportionate to the amounts devoted to other areas of medical research. The underfunding of P.D. research, I tell these senators, represents a serious missed opportunity, given the current state of the science and the very real prospect of a cure. Scientists testifying after me stressed that a cure could come within ten years, but only if sufficient financial commitment is made to the effort.
My presence at these hearings marks a momentous personal step. While it's been almost a year since I first revealed I have P.D., this is the first time I've ever taken a public position of advocacy. If you're not quite sure what to do, don't do anything yet; more will be revealed. Well, now more had been revealed, like the fact that my presence at this hearing might make a difference. That, at least, is what Joan Samuelson, founder and director of the Parkinson's Action Network (PAN), told me when she called to recruit me for this trip to Washington. She was putting together a panel of people, including scientists and patients, to implore Congress to direct more money to the National Institute of Neurological Disorders and Stroke.
Joan is an attorney from northern California who was diagnosed with Parkinson's in the late 1980s at the age of thirty-seven. She continued in her legal career until 1991, when there was a push by Democrats in Congress to lift the Bush administration's ban on federal funding of fetal tissue research. (Scientists wanted to learn if healthy brain cells from discarded fetuses could be transplanted into the brains of people with P.D.; antiabortion activists had persuaded the Bush administration to ban the work.) Frustrated by the inaction of various national Parkinson's foundations, Joan moved to Washington and became a lobbyist. Her efforts, along with those of Anne Udall, daughter of the late Congressman Mo Udall (himself a P.D. patient), played an important part in getting the ban lifted in 1992. Since then Joan has continued in her role as a leading Parkinson's advocate, founding PAN and emerging as a true hero of the Parkinson's movement.
After the hearing, our little group of patients and scientists embarked on a tour of the offices of several senators and congressmen. We met with Representative Bill Young, chairman of the House appropriations committee, Representative Jerry Lewis, chairman of the defense appropriations subcommittee, and on the Senate side, (then) Majority Leader Trent Lott (along with a dozen or so Republican senators he'd assembled in his office), and Senator Arlen Specter, chairman of the Senate appropriations subcommittee overseeing NIH. Everyone gave us plenty of time and a respectful hearing. And while the senators didn't come through with any extra appropriations, both chairmen on the House side did end up making specific directives that increased funding for P.D. research.
As Joan and I left the corridors of power we must have looked like a pair of drunken sailors; the day's hectic events had brought our symptoms to full boil, and both of us were a little wobbly. But something else was going on with Joan—I noticed that she was fighting back tears. "Am I missing something?" I said, baffled. "I thought we did pretty well back there."
"Oh, it was fantastic," she said. "It's just that it's always been so hard to get anyone to even listen to us, never mind invite us into their offices." She flashed me a smile. "It's a whole new world."
Snippets of my testimony were featured on several of the nightly news broadcasts. One line in particular from my prepared statement got a lot of play: "In my forties, I can expect challenges most people wouldn't face until their seventies and eighties, if ever. But with your help, if we all do everything we can to eradicate this disease, when I'm in my fifties I'll be dancing at my children's weddings." I had made a deliberate choice to appear before the subcommittee without medication. It seemed to me that this occasion demanded that my testimony about the effects of the disease, and the urgency we as a community were feeling, be seen as well as heard. For people who had never observed me in this kind of shape, the transformation must have been startling.
Later that day, when I finally got a chance to see the hearing broadcast in its entirety on C-SPAN, I was struck too, but by a transformation of a completely different kind. Sure, the symptoms were severe—I looked as though an invisible bully were harassing me while I read my statement. My head jerked, skewing my reading glasses as if the back of my skull were being slapped. I was fighting to control the pages of my speech, my arms bouncing as if someone were trying to knock the paper out of my hands. But through it all, I never wavered. I saw in my eyes an even, controlled sense of purpose I had never seen in myself before. There was, ironically enough, a steadiness in me, even as I was shaking like a leaf. I couldn't be this still until I could no longer keep still. The bully attacked from every angle, even from within my own body, but I wasn't about to give in, or be distracted from what I had come there to do.
Instead, I issued a challenge that took the form of a promise: "The time for quietly soldiering on is through. The war against Parkinson's is a winnable war, and I have resolved to play a role in that victory."
Working Myself Out of a Job
In the last couple of years, I've gone from talking to my agent on a cellular phone to discussing cellular biology with some of the world's leading scientists. It's a whole different world. If I'm with my peers in the entertainment business, I can at least fake being one of the smarter people in the room. In a group of neuroscientists, I just try to listen carefully and take a lot of notes.
People often refer to my role as an advocate and the work I do with the foundation I formed after leaving Spin City as my new job. I suppose it is, although that's not the term that most readily comes to mind. These days I have a lot of jobs; many of them aren't exclusive, and few if any fit into the 9-to-5 routine. My job is whatever I happen to be doing at the moment—whether it's giving a speech, changing a diaper, writing a book, or recording the voice of a computer-generated mouse. The work of the foundation has, however, become my passion, and I bring to it every resource, both internal and external, available to me.
During her interview for the position of the executive director for The Michael J. Fox Foundation for Parkinson's Research, I explained to Debi Brooks that our goal as an institution was nothing less than planned obsolescence. What I had in mind was an organization built for speed, eschewing bureaucracy and taking an entrepreneurial approach toward helping researchers do what they say can be done: find a cure for Parkinson's within the decade. Our optimism on this score was matched only by our impatience.
"I remember you warning me," recalls Debi, forty-two, a former vice president at Goldman Sachs, "that if I ever found myself making plans for a Tenth Annual Fund-Raising Dinner, I should consider myself fired."
There was no existing blueprint for accomplishing what we wanted to do. Debi and the board (an extraordinary group of individuals drawn not only from my world, the entertainment business, but also from Debi's, the New York financial community) were faced with the challenge of inventing a system that could identify the researchers doing the best work and then get money into their hands as quickly as possible.
The work of medical researchers and the funding of their research has historically proceeded at a snail's pace. It takes nearly a year, for example, from the time the National Institutes of Health receive grant applications to the time their money is awarded. For our foundation's own grant-making procedure we set about speeding that system up. Working with a scientific advisory board led by Dr. William Langston, we devised a way to streamline the process by simplifying the application form and assembling a scientific review board that would identify the most meritorious proposals within three months.
We knew we were really onto something when the NIH approached the foundation to ask if they could funnel a portion of their own funds through our fast-track process. By the end of our first year we'd already achieved two major goals that even in my most optimistic moments I'd thought would take years to reach. In quest of a cure for Parkinson's disease, we had identified some of the most promising research. And we'd influenced the federal government to adopt our methodology and sense of urgency in funding that research.
Since my first testimony in Washington, I have often been called upon to represent the P.D. community in the media, most notably during the national debate about embryonic stem cell research that monopolized the news during much of the summer of 2001.
Embryonic stem cells are taken from ten-day-old embryos left over from in vitro fertilization and discarded by fertility clinics. Thousands of these unwanted cell clusters, smaller than the head of a pin, are frozen and then, after a time, routinely destroyed every year. Most cell biologists believe that because these cells are too young to have dedicated themselves to any one physiological function—brain cell, kidney cell, bone marrow cell—they are "pluripotent." That is, they have the potential to become any type of human cell. Introduced, for example, into the substantia nigra of a Parkinson's patient, they could evolve into dopamine-producing cells.
The implications are staggering. If the potential of stem cell research is realized, it would mean an end to the suffering of millions of people—a rescue, a cure. But the potential benefits are not limited to P.D. Stem cells could lead to breakthroughs in developing treatments and cures for almost any terminal or catastrophic disease you can think of. This is one of the reasons that support for this work has galvanized a coalition of advocates from just about every patient community in the nation. If stem cell research succeeds, there isn't a person in the country who won't benefit, or know somebody who will.
There is controversy, however. Even though the embryos from which these cells are derived are developed outside the womb and routinely discarded, antiabortion activists adamantly oppose using them for research no matter how many people stand to benefit.
During the 2000 presidential campaign, it was well known within the world of medical advocacy, if not to the general public, that George W. Bush opposed the use of stem cells, even though several key conservative, and even right-to-life Republican legislators, supported the research. The issue cut across the usual political lines, probably because disease is itself nonpartisan. In the weeks before the election, I wrote an Op-Ed piece for the New York Times suggesting to the then governor of Texas that to allow for federal funding of this area of study—one with the potential to save the lives of millions of present and future Americans—represented exactly the kind of compassionate conservatism he espoused. What could possibly be more "pro-life"?
As important as the issue was to us in the patient community, we were surprised and gratified when stem cell research received so much media attention the following summer. I found myself in the middle of a national political debate, giving interview after interview and personally lobbying administration officials. In the end, the newly elected President Bush was forced to take a position, and he ultimately allowed some federal funding of this work to go forward, albeit in a limited fashion. It was not everything we were hoping for, but it was more than the president's initial position would have led anyone to expect.
I had spoken out regarding stem cells as a patient, not as the president of a foundation. The foundation itself is not in any way political—our sole concern is to identify the best research and then to raise money and distribute it to the scientists conducting that research as quickly as possible. Because of our entrepreneurial approach, however, we can react to political currents promptly and, sometimes, creatively. Shortly after President Bush strictly limited the number of stem cell lines available for study, we offered a $2.5 million grant to any researcher or scientific institution that develops a line of dopaminergic cells—cells capable of producing dopamine. We won't allow ourselves to be deterred, distracted, or hampered in our mission.
When I engage in public debate on these and other issues, I do so as a patient first, but there's no question my notoriety helps. One of the reasons I can raise funds and attract attention to the cause is because I am a celebrity. And yet I am wary of being regarded merely as a "poster boy." In fact, when we first launched the foundation, I didn't want it to bear my name. At one point I thought I had come up with a terrific name: PDCure. Before I brought it to the board, however, I thought I'd try it out on Tracy. I wrote the name down on a piece of paper, put it in front of her, and said, "What do you think?"
After a beat, she looked up at me and said flatly, "Pedicure?"
My name attracts attention, provides access, and therefore helps us achieve our goals somewhat faster than we otherwise might. Is this fair? Is it right? Well, that's a complicated question, but the fact remains: I have this disease. This is not a role I'm playing. Like any other patient, my participation is uniquely informed by my experience. I know the issues, I'm compelled to understand the science, and I share my community's sense of urgency. Quite apart from all that, I happen to possess this most rare and useful currency—celebrity—and I've discovered a wonderful way to spend it.
Washington, D.C.—September 14, 2000
Not long ago I spoke once again in front of a Senate subcommittee, this time about the urgent importance of federal funding for embryonic stem cell research. I devoted a portion of my testimony that day to the issue of celebrity advocacy, to exactly why it was that I had been invited to speak and why I accepted the invitation. This is what I told the senators:
By now, many of you have heard my story. But you haven't heard this story, about a thirty-eight-year-old book editor, Anne, whose P.D. caused her to lose her job at a publishing house, plunging her from New York's middle class into poverty. She's now forced to live on Medicare and SSDI benefits, which are nearly consumed by her monthly medication costs alone. Nor have you heard about Greg, a former lawyer, now living on disability, who corresponds with me regularly. Two weeks ago, his friends and family watched in horror as he disappeared into stony immobility while waiting for a prescription delivery that had been delayed. Nothing demonstrates more dramatically just how tenuous "normalcy" is for someone afflicted with Parkinson's. And you've never heard about Brenda, a fifty-three-year-old former computer specialist. Recently, her drugs failed to kick in and she found herself frozen in the bathtub with no one to help her. She remained there for hours until enough medication reached her brain to allow her to crawl out of the tub. By this time she was suffering a panic attack and couldn't speak. She finally reached her computer, and used that to contact friends for help.
None of these people mind that I get more attention than they do. What they tell me, over and over, is that if I get a shot in front of a microphone—I should start talking.
So here I am.
A Tree Grows in Burnaby
Middlegate Apartments, Burnaby, British Columbia?
When I was ten years old and living in that three-story walk-up with the unheated swimming pool and the strip mall across the street, we had a mouse in our apartment. It wasn't a pest, at least not to me anyway, but a pet; a tiny white rodent with pink ears, eyes, and nose. I kept him in an aquarium with one of those little go-nowhere-fast exercise wheels, a water bottle, and a section of window screen laid on top and weighted down with a book to secure it in place.
As it turned out, the book wasn't quite weighty enough. I probably should have gone with War and Peace, because the mouse escaped. The timing of the breakout couldn't have been worse. Nana was staying with us for a couple of nights while her new apartment in the neighborhood was being readied for her to move in. Terrified of mice, she also had a bad heart, and everyone, but especially me, was worried that at some point, perhaps while she was asleep, the mouse might skitter across her bed, or maybe her forehead, and send her into cardiac arrest.
Fortunately, that didn't happen. Nana moved into her new place, and the mouse was never seen again. I was forbidden to buy another one. Dad confiscated the aquarium and filled it with potting soil and a couple of old houseplants. The newly converted terrarium was relegated to our apartment's narrow balcony, but that was the last attention that those philodendrons or spider plants or whatever they were ever received. Within weeks the plants were dead. The next summer Nana too would be gone, her heart finally giving out.
The following Christmas my mother placed a dish of unshelled walnuts on the coffee table. I didn't eat walnuts, but I picked one up and carried it around with me for a while. At some point I wandered out on the balcony, dropped the walnut into the aquarium, and pushed it down with my thumb into the earth. And I forgot all about it until the next spring, when to my amazement, a tiny green shoot pushed out of the soil. The walnut had taken root. Perhaps because my nonlinear kid logic connected the aquarium to the mouse escape to my grandmother, I always regarded this tiny miracle as a message from Nana, a sign that she was still with me. I don't remember telling anyone else about it, though I do remember tending the seedling for a while, making sure to water it and occasionally move it into the sunlight. But springtime also means spring cleaning, and I came home from school one day to find that my baby walnut tree was gone.
Los Angeles—March 1995
The filming of American President was winding down. Sam, Tracy, and our two new baby daughters, Aquinnah and Schuyler, were waiting for me at home in New York. I was just beginning to entertain the notion of a return to television so that in the future I wouldn't have to be away from them like this any more than necessary. This was a time of tremendous optimism and renewal in my life, and I owed a large part of my happiness to my work with Joyce. She too was back in New York, of course, but I kept my regularly scheduled 9:00 A.M. appointments and would wake up early to call her on the telephone at 6:00 A.M., West Coast time. One morning I preceded my phone call with a fax. I had woken up with a dream, scribbled it down on hotel stationery and sent it ahead to Joyce.
I'm on our farm in Vermont. I'm helping a young boy, about ten years old (Sam? Me?) to cross a pasture where horses are grazing. On the other side is the caretaker's house. Once we get there, he leads me into a large country kitchen and I'm amazed at what I see. On every surface—the table, countertop, and fireplace mantel—are jars and planters filled with budding plants and saplings. It's a home nursery and it's flourishing. We walk across the room, and in the corner is a built-in cabinet. The boy says to me with a smile, "Wait till you see this," and then swings the cupboard door wide open.
It's hard to process what I'm seeing. It can't be possible—but inside this tight, dark, airless space, a tree has been growing. Growing isn't even the word for it, really—it's absolutely thriving. In response to the tight quarters it's taken on the appearance of a bonsai tree. The trunk and branches are thick, and now, with the door flung open, the tree continues to grow right before my eyes, as if in time-lapse, new branches reaching out into the airy light of the kitchen and bursting into leaf.
I know instantly what kind of tree it is. It's the walnut tree. And it's been growing all this time.