Lucky Man

by Michael J. Fox

  Dr. Cook summed it up this way: “A lot of people can be on TV, but only one person can be your kid's father. When you described it to me in those terms, it made sense. I was ready to go ahead with the procedure.”

  I informed my business partners of my plans, grateful that I had been honest with them about my P.D. from the outset. Though Gary and I were more at odds creatively than ever, he was warmly supportive. He and Jeffrey understood the physical difficulties I'd been dealing with and were hopeful for a positive outcome. I then invited each of the cast members into my office and hit them with a double whammy. I told them, for the first time, about my diagnosis and the fact that I'd be undergoing brain surgery at season's end.

  Aquinnah and Schuyler were too young to comprehend what I was about to do, but I held them the night before I left for Boston and felt good about the fact that soon they wouldn't have to turn the pages of their favorite storybooks while I read to them.

  For Sam, there was one last book to hold, one Dr. Cook had sent in the weeks before the operation: The Big Book of the Brain. Referring to its simple but clever illustrations, I was able to explain to my eight-year-old what the doctor was planning to do. Basically, a surgical version of our old squeeze-the-thumb game; though, now, if it all worked out as planned, we'd be able to count a lot higher than five.

  BRAIN SURGEONS AND ROCKET SCIENTISTS

  Now, not quite three months after I'd first met him, Dr. Cook was in our Boston hotel suite, and I was coveting his soda. I had entered the twelve-hour presurgery no-liquids zone. For that matter, I wasn't allowed any Sinemet, either—the symptoms had to be fully present during the procedure. Thirsty, symptomatic, and a little edgy myself, I was eager to get down to business.

  “Can you explain again what you're going to do and why it works? I know Tracy and my mom are a bit nervous about the lesion part—how injuring a small part of my brain can actually help me.”

  Dr. Cook nodded and leaned forward over the coffee table. “The goal of the operation is to disable the brain cells responsible for the tremor. The target is deep in a part of the brain called the thalamus—an area about the size of a walnut that controls body movement. We're looking for a particular structure within the thalamus which is responsible for the tremor—the VIM nucleus, a group of cells approximately two millimeters in diameter.

  “You'll be brought into the O.R. and a metal frame, or halo, will be fastened to your head with small screws. During the procedure, the frame itself will be bolted to the operating table so you won't be able to move your head around. Just as important, the frame helps us guide our instruments.

  “You'll be sedated while this happens, with liquid valium, so you won't remember much, but you'll be awake. In fact, we need you to be conscious throughout the whole surgery, to answer our questions; that's an integral part of the operation, helping us confirm that we're where, in your brain, we want to be.

  “Once the frame's on, but before it's bolted to the table, we wheel you out of the O.R. to the Magnetic Resonance Imaging machine.”

  “Let me ask a question,” Tracy interjected. “You do the MRI after the frame is on? I thought you couldn't bring metal anywhere near one of those machines.”

  “That's true, but the frame we use is aluminum,” Dr. Cook answered. “It's nonferrous, which means it doesn't respond to the magnets.”

  Tra, I was impressed, good catch.

  “We do the MRI scan to find the VIM nucleus. We also see the areas we want to avoid—the internal capsule containing all of the information responsible for movement that goes from your brain down the spinal cord. If this internal capsule is damaged, there's a risk of paralysis.

  “Next we go back to the operating room, fasten the frame to the table, and raise you on an incline, almost as if you're sitting in a La-Z-Boy. Now we drill the hole in your skull and use a microelectrode—a long tube with a narrow tip encasing a filament—to explore the area. The electrode allows us to pick up the electrical signals that the brain cells make and see them on a computer screen. The signals are incredibly small and weak—this is the electrical output of just one or two cells. The least little signal from any electrical equipment causes a huge interference, so we have to turn off everything else in the room, even the lights.”

  “I'm sorry,” I interrupted. “But I don't remember hearing this part before. You're going to operate on my brain with the lights out?” I pictured a cadre of medieval barbers trepanning my skull by candlelight.

  Dr. Cook smiled reassuringly. “Conveniently, there's a large wall of windows in this operating room.”

  Low tech meets high tech, I thought. Ever since, I have been scrupulous about turning off my cell phone in hospitals.

  The doctor continued. “We pass the electrode down through the thalamus and look for the characteristic signals. As we listen to the cells and do things like touch your finger, for example, we look for responses on the computer screen. What we're looking for is a spot where we get a response only when we touch the thumb and index finger because that is the area directly behind our target area.

  “The next step is to run an electrical current through the electrode and ask you if you experience any feeling, tingling, or numbness in your thumb and index finger. This is why you have to be conscious. When we get that response, we're directly behind the spot we want to be.

  “We like to find that spot as quickly as possible, because each time you probe a new track with the electrode, you add a new risk.”

  “Exactly what are those risks?”—Mom, this time. But I could tell from Tracy's body English that she was only a millisecond behind with her own version of the same question.

  “The biggest risk is bleeding in the brain from the various probes. Overall, the national estimate is a one in one hundred risk of causing any degree of bleeding, but with the microelectrodes we'll use, it's very very rare. The rest of the risks are paralysis, as I've already mentioned, numbness, garbled speech, and an inability to swallow and control secretions.”

  There was a brief pause in which I could feel all the eyes in the room turn to me. I smiled, radiating, I'm sure, a genuine and heartfelt confidence. I was well aware of the risks, and while I didn't take them lightly, I felt they were far outweighed by the potential benefits.

  “It's okay, Doc, you can keep going.”

  “Now we move forward three millimeters from the spot where we get that good response. We put some current into the electrode; if we've hit the right spot, this will temporarily stop the tremor. That's a very good sign. The only thing left to do then is to put in a slightly larger electrode, with enough power to make the lesion—to kill the target cells. When we turn up this macroelectrode, it may cause your speech to temporarily garble, because the current spreads beyond the target area. But first we perform a test by heating up the probe a couple of degrees, enough to stop the activity but not enough to cause a lesion. We examine you to make sure you still have all those functions we don't want to impair—that you can swallow, speak, and whatnot. This is the patient-participation part of the program. Now we go up to a stronger current until we've heated the target area to the temperature needed to kill the cells. Then, we take the electrode out and you're done.”

  Tricky stuff. Everyone fell silent. It was a serious moment, but a phrase I'd tossed off a million times before kept popping into my head: This isn't brain surgery. Yet of course this time, it was.

  Which got me to wondering:

  “Why do you think it is . . . ,” I asked Dr. Cook, partly to break the tension, but also because I really wanted to know, “that brain surgery, above all else—even rocket science—gets singled out as the most challenging of human feats, the one demanding the utmost of human intelligence?”

  To my surprise, Dr. Cook actually considered my question for a beat, took a swallow of diet soda, and then offered an answer:

  “No margin for error.”

  Jesus, he's right, I realized. That's it. I mean, when you think about it, that's probably what
gives brain surgeons the edge over rocket scientists. We've all seen Apollo 13. Those NASA guys always have the old “plastic bag, cardboard tubing, and duct tape” option to fall back on when the shit hits the fan. Neurosurgeons have no such leeway. What it comes down to is this: if a brain surgeon screws up, it means a multimillion-dollar malpractice suit, but if a rocket scientist screws up, it means a multimillion-dollar hit movie starring Tom Hanks.

  No margin for error. I was still marveling at the perfection of that answer. He's absolutely right, one little hiccup and . . . So why am I smiling?

  Holy Family Hospital, Methuen, Mass.—Sunday Morning, March 15

  Valium or no valium, I remember things. I remember my head being shaved and asking them to leave some bangs in front so, post-op, I could let them hang out from under my baseball cap and people would think I still had a full head of hair. I remember the stinging pinch of the screws and mumbling something about Torquemada when the aluminum frame was fastened to my skull. I remember a slight vibration, some pressure but no pain, when the tiny hole was drilled through the top of my head.

  I remember—this must have been a couple hours into the operation—Dr. Cook asking me to count to ten out loud. Somewhere between two and four, though, the voice I heard counting sounded as though it was coming from somebody else. A slow baritone warble at first, it suddenly modulated up and down, changing pitches, changing speeds, as if it were a record and some drunk at the party was leaning on the turntable. At eight, I stopped counting.

  “Heyyyy . . .” I growled in my new Incredible Hulk, slow-mo voice, “You guys are messsssing with my brrrrain.” I remember them laughing.

  And then I remember someone (Dr. Cook?) asking me to put my hand in a position that would cause it to tremor. He wanted me to make my hand tremor, to see it shake. I tried, but my hand wouldn't cooperate. So I moved it again, and it still wouldn't tremor. Now I was getting mad at myself; I felt like I was being a bad patient.

  “I'm sorry,” I remember saying (my regular voice back now). “But it won't. I can't make it shake. It just won't do it.”

  “Great. That's it,” the doctor said. “We're done.”

  I remember lifting my left hand up in front of my face, turning it over and over, splaying out my fingers, obedient and smiling. That's it. They're done.

  Anguilla, the Caribbean—April 1998

  Another day in paradise.

  Dr. Cook cleared me to fly down to the Caribbean with my family just two days after the surgery; it was Sam's spring break. During my two weeks of rest and recuperation, I'd been getting up early every morning, around 6:00 A.M., before Tracy, before Sam and the girls, and this day was no exception. I rose from bed quietly without waking Tracy, threw on a pair of shorts and a T-shirt, wrapped my stubbly head (with its comical tufted forelock) in a blue bandana, slipped out the back door of the hotel villa, and made my way down the cliff stairs and onto the beach.

  After walking for a quarter mile or so I sat down on the soft white sand and rested my forearms across my knees. Pelicans were fishing about ten feet offshore, wheeling and diving spectacularly, but they weren't the object of my attention. I was focused on my hand. I stared at it, and waited. Inside of five minutes my fingers began to flutter. It was subtle, no one else would ever have noticed, but it was there.

  It was just like at the beginning, just like before, with one very big difference: this wasn't my left hand I was looking at. There was no question that the operation had been a success; my left side was as still as the sheltered blue bay in front of me. The problem now was with my right—the tremor had moved into the right side of my body. I wasn't surprised. This wasn't altogether new, and had nothing to do with the surgery. In fact, nothing the doctor did that day could have caused this most recent development in my symptoms. The lesion was created in the right hemisphere of my brain and therefore would only have an effect on the left side of my body. I'd actually begun to notice it back in February, after my first meeting with Dr. Cook. Probably the subsiding of the tremor on my left had just made the deterioration on my right side more noticeable.

  I was sad, but I wasn't angry. I'd known for years that this was an inevitability. I have Parkinson's disease; it's a progressive disorder. It's just doing what it's supposed to do. So, what was I supposed to do now? I rose, brushed the sand off the back of my legs, and started to make my way back toward my wife and sleeping children. The answer was clear. After all that I'd been through, after all that I'd learned and all that I'd been given, I was going to do what I had been doing every day for the last few years now: just show up and do the best that I could with whatever lay in front of me.

  I picked up some shells for the kids and stuffed them into the pockets of my shorts, and somewhere along the way, as I had almost every day since I'd stopped drinking six years earlier, I said this prayer:

  God grant me the serenity to accept the things I cannot change

  Courage to change the things I can

  And the wisdom to know the difference.

  Chapter Eight

  Unwrapping the Gift

  I need to explain the “on-off” phenomenon. This Jekyll-and-Hyde melodrama is a constant vexation for the P.D. patient, especially one as determined as I was to remain closeted. “On” refers to the time when the medication is telling my brain everything it wants to hear. I'm relatively loose and fluid, my mind clear and movements under control. Only a trained observer could detect my Parkinson's. During one of my “off” periods, even the most myopic layperson, while perhaps not able to diagnose P.D. specifically, can recognize that I am in serious trouble.

  When I'm “off,” the disease has complete authority over my physical being. I'm utterly in its possession. Sometimes there are flashes of function, and I can be effective at performing basic physical tasks, certainly feeding and dressing myself (though I'll lean toward loafers and pullover sweaters), as well as any chore calling for more brute force than manual dexterity. In my very worst “off” times I experience the full panoply of classic Parkinsonian symptoms: rigidity, shuffling, tremors, lack of balance, diminished small motor control, and the insidious cluster of symptoms that makes communication—written as well as spoken—difficult and sometimes impossible.

  Hypophonia, hypomimia, and “cluttering” can all get in the way of verbally expressing feelings and ideas. Hypophonia weakens the voice so badly that for some, like Muhammad Ali, simply making yourself audible demands a tremendous effort. So far I've been spared that particular challenge. When I'm “off,” my struggle is with “cluttered speech” combined with hypomimia, the medical term for the “mask effect” often observed in the faces of P.D. patients. My ability to form thoughts and ideas into words and sentences is not impaired; the problem is translating those words and sentences into articulate speech. My lips, tongue, and jaw muscles simply won't cooperate. What words I do smuggle through the blockade can be heard, though not always comprehended. Try as I might, I can't inflect my speech to reflect my state of mind. And it's not like I can liven up my halting monotone with a raised eyebrow; my face, utterly expressionless, simply won't respond. Like Emmett Kelly, but without the greasepaint, I often appear sad on the outside while actually smiling, or at least smirking, on the inside.

  Micrographia is precisely what it sounds like—tiny writing. I have a stockbroker friend, a fellow Young Onset patient (amazingly, the friendship predates our diagnoses) whose secretary was the first to recommend he consult a neurologist. Over the course of a year or so, she had found it increasingly difficult to decipher his memos, and finally confronted him with the evidence of his incredible shrinking handwriting. Without drugs, my own penmanship becomes similarly microscopic. Combined with the stubborn refusal of my “off” arm to move in a smooth, lateral, left-to-right direction, the result is a fractured column of miniature scribbles.

  This:

  Becomes this:

  These impediments to self-expression are not the most painful or debilitating features of Parkinson's d
isease, yet they madden me more than even the most teeth-rattling full body tremor. When the meds are “off” and P.D. has already rendered me a prisoner in my own body, the suspension of my telephone and letter-writing privileges seems excessive.

  Then there's the sensation of not being able to settle, or land in any one spot for more than a second or two. When I'm “off,” I feel like I'm dangling from a coat hanger that has been surgically implanted under my skin in the muscles of my back, wedged between my shoulder blades. The sensation is not quite one of being suspended in the air; it's more like being jacked up, with my toes scraping and kicking at the ground, straining for purchase, so that, if only for a moment, both feet can plant firmly and bear the full weight of my body. During the years I spent promoting the fiction that none of this was actually happening to me, my only recourse was to isolate myself and grit it out.

  Three to four times every day, I go through the transitions between the two poles, navigating the tricky passage from the land of “off” to “on.” The most surreal aspect of this thrill ride is that during every “on” time, I delude myself into believing that that, and not the other, is my “normal” condition.

  None of the pills I take gives me even a mild buzz, but the freedom of movement and the interlude of physical grace they provide are intoxicating. I don't squander a nanosecond of this time contemplating the inconvenient truth that what I'm experiencing is not “real.” I don't think about that when I'm splashing in the surf with Aquinnah and Schuyler, fishing for bass with Sam, or huffing to keep up with Tracy on the bike rides she loves so much. I truly do forget and, lost in this sublime ordinariness, it's easy to miss the subtle twitches, creeping rigidity, and vibrating sensations urging me to crack open the vial and toss back another little blue pill.

  Every P.D. patient's experience is unique. Mine is this: If I miss or ignore those early-warning signs, there's no second chance. I am down for the full sixty to ninety minutes. It's no good upping the dosage, either—that only results in exaggerated dyskinesias (random, spastic, hyperextended movements of the extremities) when the L-dopa finally does take effect. As with the “on” period, it is hard to believe that the “off” is ever going to end, and it doesn't help to remind myself that it always does.