Lucky Man (33 page)

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—1971

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.