Lucky Man

by Michael J. Fox

  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 perso
n 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 degenera-tive 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.