No Time Like the Future: An Optimist Considers Mortality

by Michael J. Fox

After thirty years of Parkinson’s, I have established a sort of détente with the disease. We’ve had a history together. I’ve long realized that control is out of the question; instead, I’ve settled for an understanding that requires adaptability and resilience. PD is like the persistent and cutting jab of a boxer, manageable if I’m willing to do a little feinting and weaving. But then came the check hook; the blow that put me on my knees for a while. Unrelated to PD, a tumor had been found high on my spinal cord. The mass was benign, but constricting, and well on its way to leaving me paralyzed. Menacing all on its own, the defect necessitated high-risk surgery, which was completed just four months prior to this moment on the kitchen floor. Through the crucible of recovery and rehabilitation, I have gone from wheelchair to walker to cane to, at last, walking. And then this happened.

The only problem for my firstborn was a matter of timing. More consequential to his life than my still-developing Parkinson’s disease was another timeline—Sam was born three years before I gave up drinking, a sobriety that I still maintain.

Six years after our wedding, four years after I learned that I had PD, three years after I got sober, I found that I had developed a strengthened union with my extraordinarily patient, loving wife. And in that year, 1994, Tracy became pregnant with twins, an extra baby to make up for lost time (or maybe a wink from God).

Tracy and I have a theory about all of our kids; they are time machines. With cruel velocity, the energy of their very lives tumbles us forward in time—birth, grade school, friends, celebrations, crises real and perceived, social media, high school, college—until we’re suddenly sitting in an empty house with rooms full of teddy bears; rock and roll posters; generations of game systems; clothes that you can’t throw away but that won’t be worn anymore; and girls’ shoes, once jealously fought over, now ready for discard. I wish away my time while I wait for my children to come and visit. Only my wife is wise enough to realize that this is time for us; to slow it down, find our rhythm. Strangely, I can relate Parkinson’s to this; it’s another way the disease has been a gift (albeit a gift that keeps on taking). The deliberation with which I approach each day, each second, each movement, each intention—can literally slow me down to a crawl. All of those seconds, all of those minutes, are considered; I have a mini-conversation with myself about my every move. I’m taking my time. Time isn’t taking me.

We prepare our children to go off to school, and then they have the nerve to actually leave. They come home for a couple of days, get their laundry done, and spend more time with their friends from high school than they do with us. It’s torture, really. We’re proud, we’re worried, concerned that they won’t be able to get along without us—and then we’re shattered when they do. We’re left realizing that, as they begin to create their own future, we begin to face our own mortality.

Acting is what I do, and I needed to find a new way to do it. Instead of focusing on the notes I could no longer hit, I’d focus on my new instrument. It’s not an electric, it’s acoustic. It’s not a Les Paul, it’s a Hummingbird. Ultimately, I found that the philosophy of “less is more” works for me, which is convenient, because I have less. But as I’d discover, there’s more to less than I thought.

Mark Twain famously described the game of golf as “a good walk spoiled.” For me, it’s more of a good shuffle-tumble-lurch. With balance issues, I am prone to falls, one of the few people who can injure himself while putting. Golf summons up the same resolve that I rely upon in managing my Parkinson’s. I could easily create a Venn diagram exploring the nexus between golf and life with PD: They overlap in hubris and humility, delusion and desire, futility and resilience. I just deal with whatever presents itself. Sometimes I end up in the bunker, in the deep rough, or in the water. Carry on. If you’re going to do something, just do it. And don’t use too much club. A commonly asked question on the links is: “What’s your handicap?” My answer: “Isn’t it obvious?”

When I was diagnosed with Parkinson’s in 1991, Tracy and I were not even thirty years old, and newly married with a young son. I had been experiencing muscle pain and a slight tremor in my finger, and on Tracy’s urging, I went to see a neurologist. After a cursory series of dexterity tests, he confidently diagnosed me with young onset Parkinson’s disease. I couldn’t process what he was saying; only snippets of his pronouncement got through. I do recall him telling me that I might be able to work for ten more years. I was twenty-nine.

“In your case, Parkinson’s disease probably made it difficult to detect a separate problem with your spine,” he explains. “I don’t need to tell you—PD is a progressive illness; it’s constantly changing, so it would be easy to presume that the issues caused by the tumor were just new Parkinson’s symptoms. It is highly unusual to have these two conditions simultaneously. I wouldn’t want anyone to have either of them, let alone both.”

I make the decision, right then. “We’re going to go through with it.” Nina comes in and talks to the doctor about logistics, and we all agree on a surgical date. From now on, she will coordinate and troubleshoot. Nina is a combination of fierce efficiency and good-natured affability; so integral to my day-to-day existence, I refer to her as “my frontal lobe.” Pausing for a moment, she turns to make a quick, discreet transaction between us. From her bag she produces a small Altoids canister and pops it open with a practiced thumb. I take two tablets. “I knew right then she was good,” Dr. Theodore tells me later. “She intuited that you wanted a mint, from across the room.” “Actually, it was a mix of PD meds,” I explain. “She could tell I needed some before I even started to tremor.” Nina is my Radar O’Reilly. Her uncanny ability to anticipate whatever is required is just one reason why she’s so invaluable. In less than a week, we all return to Johns Hopkins. Having resolved to proceed, there is no time to waste. Each day’s losses cannot be reclaimed.

“I know we’re all here to wish Mike a happy birthday. But I want to say something else, too.” She fixes her gaze on me and pauses. “Mike, this has been such a tough year for you. What you’ve been through is incredible. The surgery, rehab at Johns Hopkins, and at Mount Sinai.” And then, to our friends around the table: “He has worked so hard. Every day, day after day. He had to learn to walk all over again. He is amazing.” Her eyes come back to me and she smiles. “Not that he still isn’t a pain in the ass, sometimes.”

I’m probably the only person who has been featured on the cover of Rolling Stone and AARP in the same year. After all, I’m almost fifty-eight. That’s the average age of diagnosis for a Parkinson’s patient, so by that metric, I’ve been fifty-eight for twenty-nine years. That makes me eighty-seven.

When I visit the past now, it is for wisdom and experience, not for regret or shame. I don’t attempt to erase it, only to accept it. Whatever my physical circumstances are today, I will deal with them and remain present. If I fall, I will rise up. As for the future, I haven’t been there yet. I only know that I have one. Until I don’t. The last thing we run out of is the future.

We can all take something positive from the class of 2020; to accept what has happened in the past, to embrace the present, and to remain open to the probability that it will get better in the future. I hear echoes of Stephen Pollan in that advice: With gratitude, optimism becomes sustainable.