No Time Like the Future: An Optimist Considers Mortality

by Michael J. Fox

I’ve long realized that control is out of the question; instead, I’ve settled for an understanding that requires adaptability and resilience.

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’re left realizing that, as they begin to create their own future, we begin to face our own mortality.

Ironically, this is similar to a Parkinsonian problem called “festination,” literally “to act or move at high speed.” This is when our footfall increases at a faster rate than our bodies can maintain; our stride shortens, and we find ourselves feet together, up on our toes, starting to pitch forward.

On this, the second day of the festival, Rangwali Holi, the custom is to grab fists full of sticky, vividly colored, pastel paint powder and throw it at the face, body, and clothing of any person within range. As we drive to the hospital, clouds of colored powder explode on the windshield: blue for Krishna, the god of love; green for rebirth and new beginnings; red for marriage and fertility; and apparently, for when the going gets fancy, yellow, the color of turmeric. It is a free-for-all. No one is spared. Every caste, gender, and age participates, often with paint loaded into squirt guns and water balloons. Everyone has a piece of the madness.

I think of the maxim “If we were all to put our worst problem inside of a circle and then allowed to draw one out, we’d all take our own problem back.”

Absent a chemical intervention, Parkinson’s will render me frozen, immobile, stone-faced, and mute—entirely at the mercy of my environment.

I employ a strategy I’ve used throughout my life—if I don’t know I can do something physically, I just pretend that I can. Fake it until I make it. Eight times out of ten, it works. The remaining 20 percent? Stitches, broken bones, humiliation.

Dr. Susan Bressman. She’s my neuro and movement disorder specialist; also a brilliant researcher, an internationally recognized expert in Parkinson’s disease, and a valued advisor to our Foundation.

The theory that bears his name is Heisenberg’s Uncertainty Principle, which states that the more precisely the position of a particle is determined, the less precisely its momentum can be known, and vice versa. Heisenberg describes exactly the conundrum that we Parkinsonians face in dealing with gait.

My pace quickens beyond the brain neurons’ capacity to fire, and I can suddenly lose my balance. Nine times of out ten, I manage to panic-dance all my horizontal sections, in the hopes that they’ll all fall into line and recover equilibrium before I steamroll somebody.

And people think Parkinson’s disease is all about tremor. I thought that once, too.

I zipped around in that car for years, until my early fifties, when I found that my right foot was consistently and rhythmically pumping the throttle. The car would accelerate, decelerate; accelerate, decelerate, lurching down the road as I struggled to control it. That will take the sexy right out of a red convertible. Another safety issue: my increasing uneasiness about the proximity of other cars on the roadway, a PD-related spatial perception deficit. I also developed a tendency to steer in whatever direction I was looking. All of this convinced me that—despite the fact that I still had a valid driver’s license—I was unsafe at any speed.

a burning sensation on the skin around my abdomen and lower chest, menacing and uncomfortable, like a steel wool sweater. I went to see my dermatologist. There was no rash or other obvious reason for these symptoms, so she sent me to see my neurologist, who diagnosed neurofibromyalgia, a chronic disorder affecting the way my brain processes pain signals. Ironically, countering this nagging pain was a lack of feeling, a numbness, in certain areas on my legs and lower back.

Added to this, my recent propensity for falling, in various categories: big, looping, hyperextended, “Ministry-of-Silly-Walks” falls; face-planting due to festination (where I’m tiptoeing and leaning “over my skis”); and plain old tripping due to foot-dragging and irregular gait. The latter two are Parkinson’s disease, but the first, the big dramatic tumbles, are linked to something else.

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.

For years, my neurologist had been monitoring a growth in my spinal cord, an ependymoma tumor, which began in the ependymal cells that line the pathways for cerebrospinal fluid. The tumor first appeared on an MRI during an assessment of my neurofibromyalgia.

Dr. Allan H. Ropper, the legendary Harvard neurologist who guided me through the first years of my Parkinson’s diagnosis, recommends that I meet with Dr. Nicholas Theodore, director of the Neurosurgical Spine Center at Johns Hopkins in Baltimore. Allan’s son, Alexander E. Ropper, himself a neurosurgeon, worked as Dr. Theodore’s fellow at his previous post at the Barrow Neurological Institute in Phoenix.

In 1998, I had a thalamotomy, the destruction of specific cells in the part of the brain called the thalamus that controls involuntary movement. Dr. Bruce Cook, the neurosurgeon in charge, drilled a hole through my skull and fed a filament down through the brain to the target. He explained why, in the age-old comparison between rocket scientists and brain surgeons, surgeons prevail: There’s no margin for error.

Nina negotiates with the hospital’s administrators about who will dispense my Parkinson’s medications during and after the surgery. This is a big deal, because you can’t self-medicate in a hospital; they have to account for every pill I take. Every drug, compound, and medicine must be checked for contraindication.

Added to the cocktail, an opiate analgesic for pain management, plus a medley of my regular PD meds, and the end result is one spaced cowboy.

In my druggy haze, I’m convinced that there’s a conspiracy to injure and humiliate me. I am sure that the hospital has lured me here under false pretenses.

I’ve already been accessorized with a bracelet in Day-Glo orange that designates me a “Fall Risk.” Those two words are meant to be cautionary and instructive, but my first reaction is to feel shamed and stigmatized. What’s next, a bell around my neck?

What they don’t understand, and I can’t convey, is that it’s not just my restless spirit that prompts my night wandering. It’s the Parkinson’s. Sometimes it demands that I move my legs; it’s like Restless Leg Syndrome on steroids. Or quite possibly, the hospital staff do understand this, but it simply can’t be helped. I must not get up and walk around, unsupervised, or I will fall.

“Stay inside the frame,” they keep telling me, but as Parkinson’s only amplifies, my brain and my body are barely on speaking terms. This will prove to be a lasting issue. That’s the exhausting part. Every movement, every command, everything that should be reflex, is a negotiation between Donald Trump and Nancy Pelosi (I don’t have to tell you which one is the brain).

I feel them wanting a positive outcome so badly for me. But what I’m only now starting to fully understand is that this is an inside job. It only works if I believe.

The word “proprioception” derives from the Latin “proprius,” meaning “individual or one’s own,” and “capere,” meaning “to take or grasp.” It is the sense of the relative position of one’s own body parts, and the strength of effort being employed in any movement. Some people refer to it as their “sixth sense”; others would say, “It’s where I am in space.”

He framed it this way: “If your proprioception is impaired, you have the sensation, for example, that you can’t stand in a dark room without falling over.” I hadn’t anticipated that it would be this confusing and disorienting.

Unless I know the person who is pushing me in the wheelchair, it can be a frustrating and isolating experience, allowing someone else to determine the direction I’m going and rate of speed I can travel. The pusher is in charge.

There’s something, too, about a wheelchair that has an effect on my voice. No one can hear me. To compensate, I raise my voice and suddenly feel like Joan Crawford in What Ever Happened to Baby Jane?, barking out orders. But no one is listening. For someone who is used to having mobility and a sense of free will, being in the wheelchair is completely the opposite. I am at the mercy of the person steering me. They will put me into a corner, or up against the wall, and I will have no say in it. I can hear something I want to respond to, but I can’t turn around and see it.

Optimism has always been the norm for me. But perhaps with age, or through the rigors of this experience, I now find it easier to drift into melancholy; to lose my enthusiasm for the task at hand.

This compulsive sharing of the X-ray is not really about my arm, at all. It’s about Parkinson’s. As much I’d like to, it’s not possible to sum up Parkinson’s in a picture or two. I can’t produce an X-ray. I can’t show you the damage it’s done. I have no photographic evidence of cell death or misfiring neurons. This personal quest to show people what’s going on inside of me reveals a desire I had no previous way to satisfy.

Not coincidentally, the Foundation is working on a solution to this frustrating dilemma. The only X-ray we have for Parkinson’s disease is the patient, and by extension, the PD community. We found that when patients meet, our conversation becomes a dialogue about symptoms and challenges, trying to triangulate what we learn from each other. Inspired by this, our Foundation launched an online program called “Fox Insight,” to give patients a platform to share their lived experiences; it’s a vehicle to express what we’re feeling, give human shape to our disease. MJFF makes this valuable data available to scientists studying Parkinson’s.

Sometimes I wobble—it may look like I’m about to fall, but it’s just a wobble. I’m finding my balance. My mind and my body are making the correction together. But people just can’t help themselves. They have an atavistic response to any aberrant motion. If I catch my toe on the carpet and trip, immediately someone shouts, “Be careful!” I am being careful, and it’s too late, anyway. Their advice is well-intentioned, but I feel a subtle shaming. As if my goal is to trip and break my other arm. It hits me like the “Did I do this to myself?” guilt that I worked through after my Parkinson’s diagnosis.

What do I want from my world right now? To accept work without creating contingencies or fire escapes. To cross a threshold and turn the corner without any drama. To hear Esmé’s voice in the hallway, and go to wherever she is, without its being a big production. To get a popsicle, when I want a popsicle, and not wait for someone to bring it to me.

Clearly, my embrace of fate needs some retooling. A strong instinct, an inner voice, is telling me: Don’t waste this opportunity. Don’t blow this. For years, my body has demanded all of the attention. It’s time to put some serious thought into my mind.

This is a new kind of thinking for me. Can you be an optimist and a realist at the same time? Or does that add up to stoicism? Not that I put on a brave face, or that I’m courageous, for that matter. I am not a hero. Sure, I’ve been through some ordeals, tough times. But I always managed to accept life on life’s terms, and up to this point, I found those terms acceptable. I was able to take on whatever came my way, forge through it, no matter what. Now my attempt to make any sense of it leaves me feeling indifferent. I’m numb. Weary. Optimism, as a frame of mind, is not saving me.

Eventually, I will take the advice of my friend George Stephanopoulos and try Transcendental Meditation. But in the short term, it will be TV over TM.

That’s how I feel about time with my family. I can’t always go where they go, when they go there. My participation is syncopated. I want to be a companion, not a responsibility—or worse, a liability. By just showing up, I provide an X factor that can drastically alter their experience. So I pick my moments: when to join in, and when to stay home.

Too often, I choose TV. It’s an easy escape, comforting. It doesn’t require input, or even full attention. Best of all, I don’t have to move. I haven’t fallen off the couch once.

My current bingeing habits reflect my state of mind. Hunter S. Thompson observed that “When the going gets weird, the weird turn pro.”

In the early morning, once I’m awake, Parkinson’s keeps me awake. A shaky man gets no rest. I turn on my flat-screen buddy and I am mesmerized, lulled into a stupor.

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.

These three vignettes from my trip to Africa represent three fears that resonate through every phase of life. There’s the leopard in the tree, viewed from an armada of SUVs: a real danger, but it’s contained, and if you’re careful, you will survive it, maybe even learn something. More dangerous is the fear of what you can’t see but intuit is somewhere close, ready to pounce. What you can’t see may still hurt you or, at the very least, cause you to experience uncertainty and dread. The third fear is like an inner minefield that you traverse as you identify, accept, and process truths—such as the inexorable advance of middle age and beyond. It’s the realization that we all have an expiration date, secret but certain.

And then, with my fall in the kitchen, a new existential crisis emerged. This third fear is manifest in my Gollum-like scrambling along the length of the tent. It’s the unknown dangers that paralyze: Darkness. Confusion. Solitude. Vulnerability. Essentially blindfolded, grasping for a familiar shape, a handhold that is stable and can be trusted, but finding only the temporary and unstable as I negotiate my way, pleading my case before gravity.

In that same “nothing to fear” speech, Franklin D. Roosevelt also said, “Only a foolish optimist can deny the dark realities of the moment.” I accept the optimist part, but now, I also admit to its foolishness.

It was discovered anecdotally to provide relief from dyskinesias, the spastic head and body movements that are themselves the side effect of levodopa, still the gold standard in PD pharmaceutical therapy. I know this sensation of a peripheral presence is just a side effect of my meds.

The core lesson Stephen left with me was this: With gratitude, optimism becomes sustainable.

There’s a homily that suggests that “the opposite of fear is faith.” Recalling the plaque on my father-in-law’s desk—Professional Fear Remover—I consider the role gratitude played in his life. I’m beginning to see that faith, or fear’s opposite, can be expressed as gratitude, which has always been the bedrock of my optimism. I’ve spent sufficient time and energy dissecting what went wrong; I’m ready to reconnect with everything that went right.

While you won’t die from Parkinson’s, per se, you will die with it. Complications from the disease, such as the diminished ability to swallow, can lead to aspirating food and pneumonia, and these contributing factors can be lethal. Until we find a cure (and we will), “getting better” isn’t part of the vernacular.