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 became a lobbyist and began “commuting” to Washington (from her home in Sonoma County, California). 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 1993. 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 Repr
esentative 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.
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