A Funny Thing Happened on the Way to the Future Page 5

  On the career front, I had captured lightning in a bottle more than once. On television with Family Ties and in film with Back to the Future, as well as with other projects, I had arrived at a place far beyond the simple working actor status that I sought when I left Canada for Los Angeles as a teenager. I met a girl too smart and too beautiful for me by a long shot, and I somehow persuaded Tracy to marry me. We soon had a healthy son. We lived in luxurious homes, drove foreign cars, and traveled to faraway, exotic places. In short, life just couldn’t get any better. But it would, though only after it got much worse.

  In 1990, when Sam was six months old, my father died unexpectedly. Suddenly a father to a son, but no longer a son to a father, I finally began to understand the value of my dad’s experience and advice only when it was lost to me. Later, after a number of body blows left me sucking for air, I would realize that my dad continues to be a guiding force years after his passing. It’s ironic, given his “prepare for the worst” philosophy and my happy appetite for risk, that his death should be the harbinger of the toughest period of my life: graduate school for the soul.

  Within a year, I started to exhibit symptoms of Parkinson’s disease: twitching, mild tremor, pain in my left shoulder, some rigidity. Chalking it all up to an injury, I consulted a sports medicine specialist. He referred me to a neurologist, who diagnosed young-onset PD. At thirty years old, I was told that whatever else I should expect, I could probably only work for another ten years. This was my explosion. This was my life skidding horribly sideways. Unable to process what was happening at first, I went into denial. Refusing to disclose my medical situation to anyone but family, and covering the symptoms with medication, I was really trying to hide from myself. Things would only get worse before they got better, though I’m convinced they only got better because they got worse. Losing my father staggered me, and the diagnosis left me reeling. Wary of placing a burden on my family, I pulled in and started to isolate myself.

  When we’re coming off of an accomplishment, or a series of accomplishments, we have an idea of who we are and what we represent to the people around us. How would this new, diminished version of myself measure up to the expectations I had for myself and my family?

  Instead of coming up with new ways to deal with a new problem, I resorted to old coping mechanisms. From the time I was a teenager, through my early days in Los Angeles, to the heady days when my film and TV career was taking off, I’d always use alcohol as a sort of insulation. Strange as it seems now, I thought booze kept me sane: I’d rather have a full bottle in front of me than a full-frontal lobotomy. I never thought of it as a tool or a way of self-medicating; it was just part of the celebration. But what I was really doing was trying to soothe my anxiety and create a buffer between myself and the harsher aspects of reality. In my first year of living with Parkinson’s disease, I took the buffer concept to a new extreme. If I couldn’t obliterate the problem, I would obliterate myself, or at least my awareness of what was happening. Parkinson’s medication for the symptoms, alcohol for the feelings; it didn’t take long for this self-prescription to produce toxic side effects.

  Before I continue with my own personal story, let me give you some idea of where I’m heading. It’s all about control. Control is illusory. No matter what university you go to, no matter what degree you hold, if your goal is to become master of your own destiny, you have more to learn. Parkinson’s is a perfect metaphor for lack of control. Every unwanted movement in my hand or arm, every twitch that I cannot anticipate or arrest, is a reminder that even in the domain of my own being, I am not calling the shots. I tried to exert control by drinking myself to a place of indifference, which just exacerbated the sense of miserable hopelessness.

  I always find it ironic when people refer to me and my situation as “the fight of his life,” or describe me as a “battler” or “engaged in a struggle.” None of these terms apply to the way that I now approach my disease. The only way I could win—if winning means achieving and maintaining a happy and balanced life—was to surrender, and I took the first baby steps toward that victory by admitting powerlessness over alcohol.

  Sober didn’t mean better, not right away. Far from it. There were periods of time when I spent hours and hours submerged in the bathtub, a sort of symbolic retreat back to the womb. When I wasn’t just trying to keep my head below water, the rest of those first couple of years without drinking were like a knife fight in a closet. With no escape from the disease, its symptoms, and its challenges, I was forced to resort to acceptance. A piece of wisdom I picked up along the way became the basis of a liberating new approach to life: “My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectation.”

  Obviously, I’m not suggesting that it’s as easy as finding a switch marked “acceptance” and, by flipping it, flooding the problematic areas of life with edifying light. Would that we could. Acceptance, as I’ve come to understand it, simply means acknowledging the reality of a situation, that its truth is absolute. There’s that word again. You may remember that I’m on record, going back to my school days, complaining to my mother about the stubborn intractability of mathematic absolutes. But I think I’ve finally figured out how two plus two can equal five. Or maybe—stick with me on this one—the precise equation is actually two minus two equals five.

  The fallout from my father’s death, the impact of a neurological illness, the emotional struggles and social isolation brought on by both my overuse of alcohol and the difficulties in giving up drinking: I first viewed all of these as setbacks. In her book On Death and Dying, Swiss psychiatrist Elisabeth Kübler-Ross broke down the process of death into five stages: denial, anger, bargaining, depression, and acceptance. I wasn’t dying. Well, at least not anytime soon. But I was experiencing a profound sense of loss, and I came to understand that the Frau Doctor was incredibly astute. Denial: This isn’t happening. Anger: It’s not fair. Bargaining: What can I do to get out of this? Depression: I can’t, it’s hopeless. Acceptance: What do I do now?

  It all came down to choices. As it related to the central issue of my life, I realized that the only choice not available to me was whether or not I had Parkinson’s. Everything else—how much I understood about the disease, its emotional effect, its treatment, and its impact on my career and family—was up to me. In the short term, there’s no doubt that any loss creates a void, a hole. My first instinct was to try to fill that hole in whatever way I could. To this end, I brought into play my ego, my will, and my own biased view of the ideal reality.

  As my acceptance grew, I came to understand that loss is not a vacuum. If I don’t impulsively try to fill the space it creates, it gradually begins to fill itself, or at least present choices. By choosing to learn more about the disease, I made better choices about how to treat it. This slowed the progress and made me feel better physically. When I felt better physically, I was happier in my surroundings, and less isolated, and could restore my relationships with my family and friends. Tracy, relieved that I not only was closer to the man she married but now an improved version, felt comfortable about expanding our family. And so Sam was soon joined by twin sisters, and in time, yet another sibling. Realizing that a film career that often sent me far from home for extended periods of time was no longer tenable, and accepting that I might only be able to work another ten years or so, I chose to make them ten good years and return to television.

  Signing up for Spin City and choosing to film it in New York, where my family was based, not only was a great creative experience, but set me up well financially for a life in which my ability to ply my trade might understandably be limited. When that time came, I felt comfortable sharing my situation, not only with my circle of friends and associates, but with the public at large. Freeing myself from this isolation unleashed a flood of good will, and inspired me to capitalize on that good will to the benefit of the Parkinson’s community. This led to the formation of the Michael J. Fox Foundation for Parkinson’
s Research, and in the decade since its inception—all credit to the dynamic and diligent group of people who signed on to carry out our mission—we’ve funded nearly 200 million dollars in cutting-edge research and, in many ways, created a new approach to the way cures are sought, here in America and around the world.

  As promised, I’ve tried to avoid offering advice, per se. My intention in writing this book was to be illustrative, not prescriptive. However, let me make this suggestion: Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice. When things do go bad, don’t run, don’t hide. Stick it out, and be scrupulous in facing every part of your fear. Try to be still. It will take time, but you’ll find that even the gravest problems are finite—and that your choices are infinite.

  You may have heard me say this before, but I’ll continue to repeat it until I find it not to be true: Because Parkinson’s demanded of me that I be a better man, a better husband, father, and citizen, I often refer to it as a gift. With a nod to those who find this hard to believe, especially my fellow patients who are facing great difficulties, I add this qualifier—it’s the gift that keeps on taking…but it is a gift.

  Believe me, I still have the occasional fantasy that I’ll wake up one morning, and as I begin to go about my day, gradually realize that I’m symptom-free. There’s no tremor, no cramping, no shuffling, no pain. Having long ago accepted the realities of PD, the neurogenerative deterioration, the irreversible cell death, I know that, absent the discovery of a cure, it could never happen.

  Except that it did.

  If this sounds like a fairy tale, then the setting couldn’t have been more appropriate: the mysterious and enchanting mountain kingdom of Bhutan. Nestled in the Himalayas, its rich Buddhist culture is alive in the sateen rainbow of the distinctive native dress, in the architecture, best described as a chalet/pagoda hybrid, and most expressively in the beaming faces of the Bhutanese people, young and old.

  I was in Bhutan shooting footage for a documentary on optimism for ABC. Conceived as a companion piece to my book Always Looking Up, the film aimed to seek out people, places, and things that, in some way, represented the power of positive thinking. We had already traveled to Washington, D.C., for Barack Obama’s inauguration, visited a cooperative dairy farm in upstate New York, and attended the Cubs’ Wrigley Field home opener in Chicago. But it was our journey to the other side of the planet, with its water-color flora and fauna and soaring Himalayan peaks, shrouded in a wispy, diaphanous gauze of mist, that provided the emotional and philosophical heart of the piece. What compelled me to bring our crew here was the tiny kingdom’s progressive trade policy and, really, their national ethos, built around a policy their king and government have labeled Gross National Happiness. In a world where most nations would seemingly go to any lengths to increase their Gross National Product, the Bhutanese believe that economic development should never come at the cost of their people’s happiness. Therefore, in every trade deal the government enters into (for example, the sale of hydroelectric power to neighboring India), culture is valued more than cash.

  Whatever steps have been taken to preserve the happiness and lifestyle of the Bhutanese people, it’s very clear to the visitor that it’s working. The country is both a monarchy and a democracy, and I spoke to many who expressed a love for their home and a gratitude to their king and countrymen. All due respect to Uncle Walt, but this is the true Magic Kingdom, the mythical Shangri-La made real. And that leads me to the part of the story that I alluded to earlier.

  By the second day in the country, I noticed a marked diminishment of the kind of symptoms I generally wake up to every day. They eventually reappeared shortly after breakfast, but only very mildly, and it was well past noon before I felt compelled to take any L-Dopa (PD meds). Over the next few days, we traveled in and around the countryside, to schools and government buildings, farms and festivals, and while I wouldn’t say that PD was completely gone and I was back to normal (if I can even remember what normal felt like), something was definitely happening. I waded through rice paddies, sat cross-legged for hours while taking a meal with local families, and wandered through Thimphu’s crowded marketplace, investigating the myriad sights, sounds, and smells. I was able to do all this in inexplicably effortless fashion.

  On the penultimate day of the trip, our producers and camera crew scheduled a demanding three-to four-mile hike up a local mountain to film one of Bhutan’s most important religious sites, a monastery they call “Tiger’s Nest.” Originally, the idea was to capture background footage, what we call “B-roll,” but I surprised myself by volunteering to come along. A week earlier, the prospect of successfully completing such a hike would have been optimistic even for me, but the physical change in me had been that dramatic.

  Armed with a walking stick and accompanied by my intrepid guide, Tshewang, I set off on a slow and steady pace up the steep, winding trails. Just short of the monastery site, a flutter of prayer flags announced a small teahouse clinging to the mountainside. One of our cameramen trained his lens on me, and I related, for the documentary, my happy bewilderment at what I had done and how I had been feeling during my time in the Himalayas. Maybe it was the altitude that had brought about this change, or perhaps it was the medicine that I had been given to prevent altitude sickness. Whatever it was, I was grateful, though I had no delusions that it would remain that way once I returned to the States.

  On my descent, in an act of hubris inspired by my improved sense of balance and fluidity, I strayed from the marked trails and attempted a shortcut down a ninety-degree rock face. Overwhelmed by momentum, I found myself skittering down the mountainside, toward certain injury and possible death. Flashback to Mexico—only now I had the advantage of being sober. Or was it a disadvantage? Flinging myself sideways to the ground seemed the only sure way to arrest my progress. Somehow I managed the maneuver. This little flurry of excitement resulted in scrapes, bruises, and a bloodied and mangled finger.

  The next day, we flew to India to make our connection back to the States, and on the plane, I noticed something disturbing. I hadn’t been able to remove my wedding ring because of the swelling, and now the cabin pressure was causing the digit to balloon and discolor even more. The wedding band was constricting to the point of strangulation. An Indian doctor, sitting in the row across the aisle, calmly informed me if I didn’t cut that ring off in the next couple of hours, they’d be cutting off my finger. And so I made a detour to the hospital in New Delhi, and after a frantic search for the correct cutting implement, the ring was removed, the finger was saved, and I was on my way home.

  Almost immediately upon my return to the U.S., the Parkinson’s symptoms returned, and it was as if that mysterious and magical reprieve had never happened. But of course, it did. I carry a reminder with me every day. I only have to look down at my homely and still-misshapen ring finger on my left hand.

  Of course, I also have a filmed record of the entire trip. Personally, I didn’t take a single photograph while I was there, but that’s not all that unusual for me. I suppose my aversion to snapping pictures may have something to do with shaky hands and blurry results, but there’s another reason: The act of lifting up the camera and positioning it between me and the object of my interest separates me from the experience. The memory exists on photo paper, or is stored digitally and ready for download, but the emotional resonance is lessened. It may sound strange, but I know by the time I fumble out a camera (okay, PD definitely doesn’t help), point, and shoot, I’m out of the moment. And if there’s one basic lesson I’ve learned—in fact, kids, I think this is what it all boils down to—it is the cardinal importance of this moment…right now.

  I’m not suggesting we wander around slack-jawed and stupefied, stumbling from moment to moment without a process that takes into consideration history or the future. Still, what’s happened before and what may happen later can’t be as important
as what’s happening now. There’s never a better time to celebrate the present. The present belongs to you.

  If you’re a recent graduate or just being fitted for the robe, I’m sure there’s no shortage of people who played a part in bringing you to this moment, and who may have an interest in where you go from here. It’s reasonable. Parents, mentors, and friends are a part of your story, just as you’re a part of theirs. They have hopes and dreams that may echo or overlap your own. And there’s no reason why you can’t make room for them. But what’s happening to you right now, precisely at this instant, belongs only to you.

  Own it.

  Recovering alcoholics have an expression: “If you have one foot in yesterday and one foot in tomorrow, you’re pissing all over today.” With all that’s happened, it’s been liberating to understand that I don’t have to carry the weight of all my disappointments or expectations. Sometimes it just is what it is. I can accept that.

  This is your moment. Let someone else take the picture…just smile.

  THE BEGINNING…FINALLY

  COMMENCEMENT ADDRESSES USUALLY WRAP UP WITH some broad sweeping statements about what to expect along the wide open road that stretches out in front of you. I’d love to do that, but I am not familiar with the stretch of highway you’ll be traveling. I can only pass along notes from the route I’ve traveled. Forgive me for another gratuitous Back to the Future reference, but I can almost hear some of you out there rejecting the road analogy altogether: “Roads? Where we’re going, we don’t need roads!”