Lucky Man

by Michael J. Fox

  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.

  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.

  Acknowledgments

  Aquinnah and Schuyler, now that Shaky Dad's book is done, I'll be taking you to school more often. Sam, thanks for making the extra effort with your homework so I'd have more time to do my own. Tracy Pollan, my wife, my best friend, I love you. It was one thing for you to go through this journey with me, but to then also allow me to share so many intimate details with others is characteristically generous. I'm still amazed that in far less time than it took for me to conceive, create, and deliver this book you managed to do the same with our fourth child, Esmé Annabelle. (Okay, I did help with the conception.) She's a miracle—and there's one more wedding I look forward to dancing at. We have so many more happy chapters to write together. This family, this life, this love make me a lucky man indeed.

  My mother, Phyllis Fox, deserves much of the credit for this book—and I am not only referring to th
e hours she spent on the phone, walking me through our family's fascinating history. (I wish I could have included more of it.) She and my father, William Fox, were also responsible for supplying me with the resilience and strength I needed to get through this book and this life. In preparing to write, I also spoke at length with my big brother, Steve, about many things, but particularly that difficult episode around the time of Dad's passing. He understood why I had to include it here, and perhaps because it was merely a passing shadow across an otherwise deep and lasting friendship, he gave me his blessing. I'd like to say to my sisters, Karen, Jackie, and Kelli, that I have learned so much from being a part of this family and I love you all more than I could ever express here. Perhaps another book.

  Joyce, thank you for everything. Working on this project required spending more hours alone than I ever had before and you helped make it possible for me to actually enjoy the company.

  I knew from the outset that I would have to write this book myself. The story was too personal for it to be told in anyone's words but my own (100,000 of them give or take, at least 40,000 of them personal pronouns). Still, I've never done this before. I'm not a professional writer. I understood that I would need a mentor in this process, an experienced and talented editor, preferably someone I was close to, to show me the ropes, to be honest with me about what worked and what did not. Luckily, my brother-in-law Michael (“Keep Going”) Pollan agreed to serve in this role. Only with so wise and patient a teacher could I have met this seemingly impossible challenge. Over the last twelve months, Mike slogged with me through the events of my life when he might have preferred to concentrate on the events of his own, particularly the recent success of his own book, the brilliant and best-selling The Botany of Desire. My gratitude extends to his wife Judith Belzer and son Isaac for allowing me to intrude on so much of their family time. Michael's insight, friendship, humor, and passion for the possibilities of the written word were not all that he shared with me. He was also kind enough to introduce me to his agent, Amanda “Binky” Urban at ICM. Thanks, Binky, for your support, enthusiasm, and expertise in guiding me through the labyrinthine world of publishing. And I thought show business was a fun house.

  In December of 2000, just as I was beginning to write about Gainesville, Florida, and the irrepressible dancing pinkie, I began to look for a writer's assistant. Basically, I needed someone to type for me. I can't operate a keyboard. I wish I could blame it on Parkinson's, but I never could type. Heidi Pollock showed up at my office door and stayed on the job a full year. Not only can she type faster than I can think, she provided a method to my madness, helping me to organize, research, and when I was really stuck, find the mot juste. Heidi proved to be a supremely intelligent, funny, and invaluable partner, and I would not have survived the experience without her.

  The belief and confidence that everyone at Hyperion has shown in this project, even as I missed deadline after deadline, has been tremendous. President Bob Miller, thanks again for your wonderful letters; the generous compliments wrapped in sports metaphors always provided a lift just when I most needed one. And Leslie Wells, I couldn't have asked for a smarter or more understanding editor. Thanks too to her assistant, Carrie Covert, and to Martha Levin who helped get the ball rolling. Bob Iger, you were right—there's no place like home.

  This book would never had been written were it not for the support and encouragement of the P.D. community. Ever since I went public with my diagnosis, my fellow patients have been my greatest teachers. They've helped me to see that my story is not only my story, that a great many of the 40,000 first-person pronouns here are plural—because we are a we, in the boat together, and awaiting the same rescue. Don't lose hope, because it's coming.

  Not all of them realize it, but all of the following people helped make this book possible, and they have my love and gratitude:

  Dr. Allan Ropper, Dr. Bernard Kruger, Dr. Bruce Cook, Corky and Stephen Pollan, Lori Pollan and Allan Bahn, Dana Pollan and Mitchell Stern, Danelle Black, Joan Samuelson, Debi Brooks, Michael Claeys, Mindy Miller, Greg Mann, the staff of The Michael J. Fox Foundation for Parkinson's Research, Lonnie and Muhammad Ali, Dr. Mitchell Blutt, Joyce and Barry Cohen, Steve Cohen, Glenn Dubin, David Golub, John Griffin, Irwin Helford, Jeffrey Katzenberg, Kathleen Kennedy, Milly and Mort Kondracke, Fredric Mack, Nora McAniff, Michael Price, Lily Safra, Jeffrey Kiel, Carolyn and Curtis Schenker, Donna Shalala, Fred Weiss, Dr. J. William Langston, Jeffrey Kordower, Jackie Hamada, Miyoko Love, Natasha Klibansky, Kim Kimbro, Iwa Goldstein, Amuna Ali, Brigette Roux-Lough, Nanci Ryder, Leslie Sloane Zelnik, Cliff Gilbert-Lurie, Skip Brittenham, Marian Toy, Raquel Tinio, Glenn Koetzner, Chris Coady, Greg Wasson, Peter Benedek, Mark Seliger, Michael Rosen, Sally Fanjoy, Gavin De Becker, Gary David Goldberg, Bill Lawrence, Andy Cadiff, Justin Sternberg, Bryan Lourd, Kevin Huvane, Bob Philpott, Cam Neely, Jimmy Nugent, Pat O'Brien, the cast, crew, and writers of Spin City (Tom Hertz and Tim Hobert, thanks for the joke), Bob Gersh, Todd Gold, Barbara Walters, Jennifer Grey and Clark Gregg, Denis Leary, Chris Rock, Jon Stewart, Amanda and Ted Demme, Emma Tillinger, James Taylor, Arlene and Alan Alda, Phoebe Cates and Kevin Kline (love that Shaw quote), the people at DreamWorks, ABC-TV, and so many more . . .

  Copyright

  What a Fool Believes, words and music by Michael McDonald and Kenny Loggins, © 1978 Milk Money Music & Snug Music. Lyrics reprinted with the Permission of the Copyright Owners. All Rights Reserved.

  That's Why I'm Here by James Taylor, copyright © 1985 Country Road Music, Inc. All rights reserved.

  Interview with Michael J. Fox, pp. 226–227, courtesy People magazine.

  Copyright © 2002 Michael J. Fox

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  Paperback ISBN: 978-0-7868-8874-0

  EPub Edition © 2010 ISBN: 9781401397791

  FIRST PAPERBACK EDITION

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  *In two full years of operation, The Michael J. Fox Foundation awarded $25 million in Parkinson's research funding.

  *The Michael J. Fox Foundation expanded the original program budget to award $4.4 million in grants to develop dopaminergic cell lines.