The official diagnosis came at the tail end of winter break. The spring semester hadn’t started yet at the university in DC where he was completing his three-year term as chair of the Literature Department—a bureaucratic burden he couldn’t wait to get out from under—and he was still tan from the week he and his wife had spent in Key West.
It was 1995. He was 51; Amy, his wife of 22 years, was 45. He would look at Amy’s glowing face, the face he’d fallen in love with when she’d walked into his classroom on the first morning of the first class he’d ever taught at the university—that lovely face with its high cheekbones and the endearing gap between her front teeth—and wonder how he could ever have been so lucky. Because they had no children, they gave their attention to each other, and life, they felt even in their secret hearts, was good.
It was embarrassing how little they really knew about the disease. At the time of his diagnosis, they knew only that it was neurological and that, although not necessarily fatal, it was incurable and progressive. He had always associated it with a tremor of the hand or the head, but the fact that he displayed no tremor proved nothing because the symptoms could vary markedly from one person to another.
They had learned you couldn’t detect it with a CT scan or an EEG or MRI. Which is why he’d been given the little pink pills. The diagnostic logic of the little pink pills was unassailable: If they relieved the stiffness he had been feeling in his right arm and allowed him to write legibly in longhand, it could only mean that what the pills were providing—a substance called dopamine—must be the thing he was deficient in.
So he’d taken the pills with them to Key West, along with a carefully drawn-up schedule that involved increasing the dosage day by day and then decreasing it after maintaining the full dosage for three days. It was up to him to monitor how he felt, whether his right arm swung easily as they strolled down Duval Street or whether it continued to hang stiffly by his side, and whether he was able to write a legible postcard or jot down a phone message so Amy could read it.
Dopamine, it turned out, was what allowed nerve cells to communicate with one another. A lack of dopamine meant that cells in your brain that should have been producing it no longer were; in fact, they were dying out, and they were apparently irreplaceable.
The result was what the doctors referred to as a “movement disorder”—he’d been told that at its most advanced stage you simply froze up. On the other hand, this method of diagnosis was in itself evidence that the symptoms could be ameliorated with pills. So as the last doctor—the one who had made the diagnosis—rather hopefully pointed out, it was really a good-news/bad-news situation. Of course, the doctor had to admit that the good news was compromised by the fact that over time the little pink pills gradually lost their efficacy.
But ultimately the news was bad for everyone, wasn’t it? At some point the efficacy of everything wore out. And, thinking that, he took a certain satisfaction in the fact that everyone’s span of years was equally finite, if not of equal length.
During that week in Key West, they had hardly known which outcome to root for. Surely it would be better if the pills didn’t work, because that would mean that at least he didn’t have Parkinson’s disease, but then again, Parkinson’s could be better than whatever else it might turn out to be, and at least then they’d know for sure what it was. Because in a way, they told each other, the worst thing was not knowing. They knew better now.
In the 15 years since he’d been diagnosed, the disease had progressed to the point that without the pills he couldn’t walk. The only time he was without them was in the middle of the night—then he could barely move his feet to go to the bathroom. He’d have to more or less drag himself along by holding onto the wooden rails they’d had installed along the hallway. He’d recently begun to keep a plastic urinal next to the bed to avoid having to make the trip to the bathroom. Even when he was medicated, doorways and thresholds presented a risk that more than gave him pause.
Festination, they called it—the clinical term for the way you could freeze up, your legs trembling, your feet taking little stuttering steps, as you tried to negotiate a passageway or cross a threshold. His body’s momentum would continue to carry him forward while his legs shook and his feet stayed put. Then, if there was nothing for him to grab onto, he would fall down—usually on an already banged-up knee—and have to hold a bag of ice against the knee for 15 minutes every half hour for the next several hours if he expected to be able to jog the next morning on the treadmill at the gym.
His neurologist had prescribed a daily dose of aerobic exercise because she said research showed that exercise helped ease the symptoms and possibly slowed down the disease’s progression—as well as doing a lot of other good things. She was sure he’d been doing as well as he’d been doing because of his regular exercise. And he’d come to feel he couldn’t do without the gym—it had become the only time he felt at one with his body.
So six days a week he did a 50-minute workout that combined a stationary bicycle with an elliptical machine and a treadmill. He’d watch himself in the mirrors and admire the fluidity of his movements. He liked looking at himself, especially if he was on the treadmill directly under the long fluorescent light that made his hair look shiny and thick. People told him he didn’t look anything like his age. Although there was a little gray in his mustache and beard, for some reason the hair on his head refused either to fall out or turn gray. He looked about 20 years younger than he was, like a man in the prime of life.
Next: When the disease takes over language
Next: The accidental falls continue
Kermit Moyer and his wife, Amy. He calls her “the linchpin that kept life on track.”
In the meantime, the accidental falls continued. The worst had occurred in February as he was carrying in a pizza he’d picked up for dinner. He’d had a good workout at the gym. He was feeling fit and looking forward to a pre-dinner martini with Amy. It was late afternoon, the time of day he loved most because of the way the Cape Cod sun would shine in from the other side of the pond at a nearly horizontal angle, like the light in an Edward Hopper painting. Coming in that afternoon from the garage to the kitchen, he was holding the flat, warm pizza box when, as he crossed the threshold, his legs started shaking and he took a rapid succession of tiny stutter steps, as if dancing in place, increasing his forward momentum even as his legs refused to take another step, so that he didn’t so much fall as launch himself forward, still holding the box level as he went flying headlong toward a closed closet door with a metal lever doorknob about four feet in front of him.
His right shoulder went crashing into it, and even as he landed on the floor in a twisted posture, he knew something had happened. The pain in his shoulder was unprecedented. He thought he must have broken the shoulder, but he learned later that he’d dislocated it.
Shortly after the accident, his friend Jim—who had overseen the renovation of their Cape house—believing that he wouldn’t have fallen if he’d had something solid to grab onto, went down to the border of the pond and cut branches of a tough scrub tree into a number of two-foot sections. Jim stripped the bark off, sanded and dried them in the oven, and bolted them to the wall at strategic points inside and outside the house. Jim was also an artist, and these grab bars were like pieces of sculpture and also, in their resemblance to bones, like memento mori.
It was a loving gesture, but it couldn’t prevent him from breaking his big toe three months later when he spasmodically kicked the frame of the bathroom door or, a couple of months after that, falling on the hardwood floor of their living room and dislocating a knuckle in his right hand. It was getting so that triweekly physical-therapy sessions were becoming his normal routine. It struck him that what was likely to get him in the end wouldn’t be the Parkinson’s per se; it would be a fall caused by it—a fall that, even if it didn’t do him in, would deprive him of his lifeline by keeping him away from the gym.
After each fall, it was Amy who wrapped an ice pack around the injured knee or finger or toe and drove him to the hospital. It was Amy who looked after him, planned their meals according to his medication schedule, reminded him when it was time to take his pills, encouraged him with her own easy and uncomplaining adaptation to his changing daily rhythms, kept track of his doctor’s appointments, and alerted him to those moments when his extroversion threatened to become overbearing or when his interior drama seemed to absorb him to the exclusion of everyone else.
If she had always been a strong organizing force in their life together, now she had become the linchpin that kept that life on track. She made it possible for him to be as self-involved as Narcissus and yet as connected to another person as perhaps only someone happily married can be. He was constantly buoyed up by her belief in their extraordinary good luck, a symbol of which was the way, from any window of their house, they could see the pond, ever-changing as it reflected the sky and the foliage of the woods as well as playing host to flocks of migratory ducks, swans, geese, and herons that visited it according to their seasons.
If you were lucky enough, living with a chronic disease meant you had to accept such loving care and assistance without imagining, on the one hand, that everything revolved around you and, on the other, losing your sense of autonomy. That turned out to be the real challenge. Could you receive love and be grateful without expecting to be waited on, and could you depend on others and yet avoid becoming dependent? At stake was nothing less than your sense of identity.
In February 2010, one year to the day after he dislocated his shoulder, his novel was published, and he found himself in the public eye—interviews on TV and radio, a profile in a local paper, book readings and signings—and was forced to confront the question of his identity in a public arena. For the last 15 years, he’d kept his disease closeted: His practice had been to say nothing about the Parkinson’s publicly and, with the help of the pills, to try and behave as normally as possible. Then at a large bookstore reading, the decision was made for him.
As he was walking to the podium, his gait froze so that he staggered briefly, and he was forced to announce to the room that he wasn’t drunk—he just had Parkinson’s disease. Rather than feeling embarrassed, he felt relieved. Now to present himself without divulging his condition would seem like a lie of omission and a denial of who he was—or rather who he had come to be.
And who was that? For the first seven or eight years after his diagnosis, his symptoms had amounted to little more than a stiffness on the right side of his body that made him appear to limp slightly and that made his handwriting so pinched as to be illegible. These symptoms had been controllable with a couple of pills a day, and because he was taking less medicine back then, the side effects had been fairly minimal. But because Parkinson’s is, after all, progressive, it had indeed progressed.
At present, he had inconclusively concluded that living with a disease like Parkinson’s was an ongoing dance with yourself that you had to make up as you went along. Because you couldn’t help but see your “condition” as separate from your “self,” the disease divided you in two. Thus he’d become both the subject and object of his own attention, which is to say he’d developed a third-person relationship to himself. His once-so-familiar self had become a virtual stranger. And his condition was another country—a country that remained foreign even though it was where he now lived, a country whose weather he charted moment by moment and whose landscape was the landscape of his own mind, body, and soul.
This article appears in the August 2011 issue of The Washingtonian.
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