Authors: Michael J. Fox
Bleak as these pages were, there are some things in them that manage to make me laugh. Throughout I keep referring to an intense desire to be “more low-maintenance”âsomeone who was more dependable and self-reliant. Three or four times this phrase appears, and finally, after the last reference, I'd scribbled in parentheses “is that how you spell âlow-maintenance'?”
Eventually I tired of writing, or my hand cramped, or I just didn't have the strength to go on. I looked over what I'd written, and wept. Whatever else this was, I realized, it was an instrument of surrender. The next day I'd find that phone number Tracy had written down for me weeks earlierâthe one that belonged to the shrink in Manhattan. I'd call herâChristmas Day or no Christmas Day. I just couldn't handle this by myself anymore.
Reading it today, what's perhaps most astonishing about my manifesto is the one thing it failed to mention:
That I had Parkinson's disease, and it wasn't ever going to go away.
ConnecticutâDecember 26, 1993
I had spoken with an analyst once beforeâbut that was in a sitcom. During the fourth season of
Family Ties
, Gary Goldberg and producer Alan Uger co-authored a one-hour script called “AâMy Name Is Alex.” Alex's best friend dies in a traffic accident while moving some furnitureâan errand Alex was supposed to be helping him with, but had weaseled out of at the last minute. Wrestling with profound survivor's guiltâcompounded by the realization that he was spared only through an act of selfishnessâAlex seeks the counsel of a psychotherapist. For Alex P. Keaton to admit a need for this sort of help was completely out of character. Self-reliance, after all, is the cornerstone of the swaggering boy-wonder persona he presents to the world; unstoppable, Alex ascends on a straight line toward the future of his choosing.
The death of his friend stops him in his tracks, though, and poses questions that, for once, he can't glibly answer. As the episode's schoolyard-rhyme title suggests, Alex now has to retrace his steps through life, beginning with early childhood, in order to reconcile the fear and self-doubt he feels on the inside with the admiration and praise he's always received from the outside world. The episode was shot in a theatrical
Our Town
style in which the therapist is never seen on camera; Alex looks directly into the lens as he answers the probing questions put to him by a disembodied male voice.
That episode won me an Emmy, but now, immersed in this dauntingly real version of my alter ego's anguish and reaching out just as he had for professional help, the only reward I sought was relief. In many ways I could relate to Alex's confusion. Like him, I never thought I'd have anything to do with psychologists or psychotherapy. I was always a figure-it-out-myself kind of person, but it was painfully clear to me that this time I didn't have a clue about where to start. Like Alex, I had a great deal invested in being regarded as a winner, by myself as well as others; to find myself this beaten down and vulnerable made me feel as though I'd somehow, at last, come up a loser. But losing is one thing, and quitting is another: thankfully, something deep inside would not allow me to quit.
Unlike the disembodied voice in the “AâMy Name Is Alex” episode, the one on the other end of the telephone line was female and belonged to a nonfictional human beingâthat therapist in New York whose number I had saved and finally dialed on the day after Christmas 1993.
Joyce is a Jungian analyst who practices on the West Side of Manhattan. When I asked her recently about that first phone call, she told me that I sounded like “a little boy who'd rather die than admit how scared he was.” My voice shaking (Joyce said I was “barely audible”), I recall telling this stranger on the phone that I felt “like my life is in flames.” Interestingly, neither of us remembers any mention of Parkinson's disease during that first of what would turn out to be hundreds of conversations.
I had an immediate, visceral sense that I had done the right thing in reaching out for help. All I wanted to know now was how soon could I get in to see her. Joyce reminded me that I had called during the holidays and she had no appointments scheduled until the following week. Still, she had been listening carefully to both what had and hadn't been said, and quickly determined that I was in crisis and needed to see somebody right away. Never one to believe in coincidence, Joyce also gave no small weight to the fact that although she was supposed to be out of the city that day, she happened to be in her office when my call came.
“I can see you this afternoon at three,” she offered, and gave me the address. There was a pause.
That afternoon?
We hadn't planned on returning to the city so earlyâmy mother was visiting, it was the day after Christmas, and anyway, I was counting on an hour or two in the bathtub.
“I don't know if that time works for me,” I replied.
On her end, Joyce must have been incredulous. Here I was with my life in flames, and I was
haggling
with her about appointment times.
“Do you have anything later in the day or maybe tonight?” I couldn't help it. Negotiating had become reflex for me.
Joyce held firm. “Three
P.M.
,” she said. “Today.”
MâMY NAME IS MICHAEL
December 26, 1993âSpring 1994
My anxiety was liquid; the phone call to Joyce had primed the pumpâand it was ready to flow. I showed up at her office at 2:55
P.M.
, and seconds later we were seated across from each other, she with a notepad on her lap and me with my head in my hands. Recalling that first session, Joyce says I arrived “defenseless,” as if “all of my skin had been peeled away.” I started to tell my story, haltingly at first, and then in a torrent. I didn't leave until 6:00
P.M.
Before that first meeting with Joyce, what little I knew about psychology, psychiatry, therapy, and/or analysis I had read in books and magazines or seen (or acted out) on television; and then there were all those Woody Allen movies. I'd laughed at the
New Yorker
cartoonsâa man lies on an analyst's couch, fingers knitted across his middle above a caption that reads:
I had a dream I was getting results.
Freud, I'd heard, called analysis “the talking cure.” Joyce's approach followed Carl Jung; but whatever school it was that I had stumbled into, I'd soon be doing a lot of talking, having a lot of dreams,
and
getting results.
How did it work? The author E. B. White said about humor that examining it too closely “is like dissecting a frog. Few people are interested, and the frog dies of it.” I think the same is true for analysis. A lot has to do, after all, with the therapist, or more specifically, the fit between analyst and analysand. With Joyce and me, the connection was almost immediate. After having lain bare so many details of my misery in our first encounter, I was relieved in subsequent sessions to spot no red flags warning me that my trust had been misplaced. I sensed no judgment or criticism, and no dogma. Joyce, I'd learn later, has a background in the theater, so when I'd talk about career issues, no translation was necessary. Still, this wasn't friendshipâshe made it clear I couldn't charm, smart-ass, or bullshit my way out of confronting my demons, or what Jung would call “my shadow.”
I have to give myself some credit, though. Once I embarked upon this process, I made a commitment to it, seeing Joyce three times a week. This wasn't quite as time-consuming as it sounds, however. Those three hours freed me up to live the rest of my life, react to whatever I might encounter without feeling its weight exaggerated by the emotional burden I was carrying. Joyce's office became a place to, as she puts it, “hold the energy,” a sanctuary where, once having unlocked the doors to my unconscious, and exposed the fear and uncertainty within, I could safely leave all of it there until I could return to explore more thoroughly. I didn't have to hide in the bathtub anymore, worried that I was going to say the wrong thing. I could say the “wrong” thing all I wanted to, fifty minutes a session, three days a week. Rediscovering the showerâa cleansing rinse instead of a long wallowing soakâwas not only a time-saver, but an indication of a new outlook.
The smoke was beginning to clear. I could see that my life wasn't completely in flames, but was beset by a series of small fires that, with Joyce's help, I set about extinguishing. Old patterns crumbled, sometimes forcibly. A couple of weeks in, my assistant called to reschedule an appointment. Joyce asked that I call her myself. When I did, she told me, in so many words, to erase her number from my assistant's Rolodex. If I had something to say to her, I'd have to speak for myself. Similarly, when she handed me her first bill and I gave her my accountant's address, she refused it, saying, “No, this is between us. I bill
you
,
you
pay me.” Joyce subtly but firmly established the rules of the partnership in ways that confronted the trouble spots in my dealings with the world outside of her office. Basic Adult Responsibility 101, I was beginning to understand.
This is the way most people live. No bubbles.
Parkinson's was not a fire that Joyce and I could put out, but we could work on my denial. The first step was for me, at long last, to claim my Parkinson's diagnosisâto own it instead of continuing to let it own me. Acceptance didn't come without flashes of anger and sieges of pain, psychic as well as physical. Joyce reminds me that when my left arm would tremor violently during sessions, I would punch it with my clenched fistâsometimes pummeling it until I raised bruises. Within weeks of beginning my work with Joyce, I went, at her prompting, to see a new internist, Dr. Bernard Kruger in Manhattan. He referred me to Dr. Allan Ropper, a top neurologist in Boston. I scheduled an appointment (myself!), and the first week of February 1994 took a shuttle flight up to meet him in his office.
The sort of doctor whose bearing automatically conveys both authority and reassurance, Allan Ropper is one of the co-authors of
Principles of Neurology
, a doorstop of a book that is the neurologist's bible. During one of our visits many years later, Allan was trying to explain to me why I was responding to a certain medication in a particular way. He opened that giant textbook, flipped through its pages, and muttered without a trace of self-consciousness, “I can't remember what I wrote about that.”
Dr. Ropper conducted his examination, then we sat down in his office to talk. He wrote out some new prescriptions. He had some ideas about different medications and how to titrate them in order to maximize their benefits and smooth out the transitions.
He explained the reasons for many of the symptoms I'd long contended with, gave terms to tics and behaviors that I hadn't even realized were part of the disease. For example, my tendency to bring the thumb and all four fingers of my left hand together in a point, like I was creating a shadow puppet of an ostrich's head, was a phenomenon called “tenting.” The fact that I was experiencing symptoms only on my left side was also typical, he said. The initial stage of Parkinson's disease is almost always asymmetric, or unilateral; it's not at all unusual for a patient's symptoms to remain limited to one side of the body for many years (though inevitably, the symptoms will spread to the other side). Dr. James Parkinson himself had noted this phenomenon when he first described the disease in 1817.
All of this information helped chip away at my uncertainty and sense of isolation. What I was experiencing was real, that much I knew; but the doctor served as a conduit to a broader body of knowledge about P.D. This helped me to see the disease itself as a fact apart from my own experience with it. I was not an anomaly. All this was happening to others, too. And while I gained no particular satisfaction from that, it did help me understand that it wasn't
personal
.
To my surprise, Dr. Ropper was also complimentary. He looked past all I didn't know about Parkinson's, the gaps in knowledge that, given how long I'd been diagnosed with the disease, were inexcusable, and instead offered praise for my ability to notice and describe my symptoms. “Being an actor makes you inherently very observant about your behavior. The manner in which you felt and expressed the experience is very different from most patients. It puts you at an advantage in managing it.”
Oddly, I found comfort in my conversation with Dr. Ropper. It had been so long since I had talked to a neurologist, or for that matter anyone with more than a layman's understanding of Parkinson's disease. For one thing, he forthrightly addressed that prognosis I'd received when first diagnosedâthat I had “ten good years” left to work, a deadline that, I was acutely aware, meant that by now, I was down to seven.
How about a little extra time added on? Let's be honest, the last three haven't been all that “good.
” Dr. Ropper dismissed the whole notion of a timetable, except to say that all indications suggested mine was likely to be a slow progression given that other cardinal features, like rigidity, were still minor relative to the tremors on my left side. “I don't think anyone knows how much time they have. The rate in younger individuals is known to be slower and more unpredictable. The only thing you can predict is that, like aging, it's going to go on.”
Pre-Joyce, pre-Ropper, my unarticulated belief was that by thinking about Parkinson's, I was hastening its arrival. It was as if I could choose between staying in the past where P.D. didn't exist, or a future where I would be overwhelmed by it. Life had become a set of unbroachable predicaments, events, and outcomes that I was racing from or toward, or, worse, that I feared were
racing toward me
. This defensive, compartmentalized attitude toward life with Parkinson's also infected my career, and my most important personal relationships. I'm thinking especially of Tracy and Sam.
If I can't fix it, I don't even want to talk about it.
As a personal doctrine, this one is seriously flawed, but carried into a marriage, it is pure poison. Sadly, I thought I was doing Tracy a favorâafter all, there was no way she could do anything about my illness, so why burden her by talking about it? But with a problem so huge,
not
discussing it meant not discussing much of anything. Even small talk was risky, because who knew what bigger issues that could lead to? Bad enough I had allowed P.D. to own me, but by my silenceâcutting my wife and family off from the experienceâI had made them slaves to it as well. And however dire my circumstance, that obviously didn't preclude Tracy from having travails of her own. God forbid Tracy came to me with unrelated questions about challenges she was facing in her own life. Unless the answer was immediately obvious to me, I felt as though she was bringing up the problem for no other purpose but to confront me with my ineffectiveness.
If I can't fix it, I don't even want to
think
about it.
I knew, of course, that that wouldn't stop Tracy from thinking about my illness. Without ever directly enquiring about them, Tracy's thoughts on this subject, whatever they were, became my obsession. Session after session spent working through these issues in Joyce's office helped me to see that I was setting a trap for Tracy by never addressing the subject head-on, and my self-isolating behavior did nothing to invite disclosure. Questions like, “Does my being sick make you afraid? Are you disappointed that I'm different now from when you married me? Are you worried about the future? Would you love me if you knew that
I'm
afraid,
I'm
disappointed,
I'm
worried about the future?” all went unasked. But that didn't stop me from filling in the blanks myself. Tracy's answers, as I imagined them, devastated me. It was unfair for me to assume the worstâ
she hadn't left me; how could I look past that?
âbut in my war with P.D., the first casualty had been trust. No one was to blame for my disease, not even myself, yet it still left me with a sense of betrayalâand in time, I came to project that onto everyone else, even the person closest to me. I was beginning to understand how unfair this was. But, if it was wrong to simply invent a point of view for Tracy without giving her the opportunity to accept or disavow it (or maybe even offer a point of view of her own) in one area, her silence itself did speak volumes: she never talked anymore about having another child together. Enough
not
said.