John L’Heureux, who died on April 22, 2019, at the age of eighty-four, asked for the following essay to accompany “The Escape,” his story in this week’s issue of The New Yorker. L’Heureux published twenty books of fiction and poetry, including the novels “A Woman Run Mad,” “The Shrine at Altamira,” “The Miracle,” and “The Medici Boy.” A collection of new and selected stories, “The Heart Is a Full-Wild Beast,” will be published in December.
I was at work on a new book, and this one was turning out to be work indeed. “The Medici Boy,” a novel about Donatello, had required many years of research, and now the writing was taking nearly as long. But I’ve always held that the writer’s true reward is not money or fame but the writing process itself—making a good thing that did not exist before—and so I worked every day, with varying degrees of satisfaction. However, I was a little distracted by a new oddity with my left hand. Sometimes, as I hit my stride and bent over the computer, typing faster and faster, my left hand would cramp into a flat fish and beat helplessly at the keys. The first time this happened, I sat back and said, “Well, here comes Parkinson’s,” and at once dismissed the thought as hypochondria.
I took a short break from writing, then, calmly, over the next three years finished “The Medici Boy,” which was published simultaneously on the Web and in hardback. It got good reviews—a few very good reviews—but the sales were unimpressive. So much for six years of work. After that, I squandered three more years on a comic novel called “Casa Sayonara,” an ironic look at a retirement home full of rich people who had bought their way through life but found that there was no buying off death. My heart wasn’t in it, and the satire turned rancid. After three separate tries and several hundred misbegotten pages, I called it quits and consigned the manuscript to the garage to be looked at some day, or not. I wrote another novel, with characters I cared about this time, “The Beggar’s Pawn,” which Penguin plans to publish, as a paperback original, in 2020, and I gave myself over to the luxury of being retired.
To celebrate our fortieth wedding anniversary—it was 2011—my wife, Joan, and I had rented an apartment in London for the months of May and June. We had rented there before, in Chelsea, on the King’s Road, one block from Sloane Square. We loved it. Restaurants, bookstores, and, above all, theatre.
We were in London to celebrate, and we did.
There was one small thing, however. Before we left California, I had lost ten pounds, and now, in London, I found I just couldn’t eat. I was, in fact, continually disoriented, with a dizziness that made me feel I was looking at things through a glass, darkly. By the end of June, I had lost thirty-five pounds and was down to a hundred and twenty-eight—what I had weighed in high school.
Back in California, I submitted to a month of tests—bizarre examinations performed on and beneath and inside Rube Goldberg machines—and at the end I was proclaimed a Celiac. Simply put, I had a digestive disorder that made it hard for me to absorb nutrients. In fact, the gluten in my favorite foods—bread, pasta, pancakes, etc.—acted in me as a kind of poison and, no matter what I ate, I lost weight. The fix was easy and anticlimactic: eat only gluten-free foods and, in a while, my body would repair itself. Done and forgotten. Much fuss about nothing.
Since I was seeing doctors twice a week now and was chummy with all of them, I took the opportunity to ask a neurologist about my left hand, which had begun to shake even when I was not typing. “A familial tremor,” he suggested. “Not Parkinson’s? It’s in my family and I thought . . . ” He smiled knowingly, “You’ve got generalized medical anxiety,” which I understood, correctly, to mean hypochondria. “Not to worry,” he said.
Nonetheless, I worried. My father had suffered from Parkinson’s. Three months after his death, my mother had died of A.L.S., so it wouldn’t have been surprising if I had inherited genes marking me for physical and mental deconstruction. I consoled myself with the thought that A.L.S. was worse than Parkinson’s, and—lucky again—I had been spared that.
A year passed and the familial tremor was now diagnosed as “an essential tremor.” A form of Parkinsonism. “But you’re fine,” the doctor said. “Your mind is pretty good and you can still write. You’re fine.” Later, as I began to lurch and stumble, he came close to crediting me with the real thing: “You have,” he said, “a Parkinson’s-like disease.” For years, I had been certain that something was terribly wrong, so the diagnosis—a world-shattering blow to many Parkys—was, to me, less shocking than it was strangely comforting. The damned thing finally had a name. Say it: Parkinson’s disease. I’ve got it and I’ve got to live with it.
I recalled with searing clarity some of the awful moments in my father’s struggle with the disease. The shaking, the frozen limbs, the muddled speech, and, above all, the dread Parkinsonian mask that made laughter impossible and concealed every trace of emotion. And I recalled my incredulity when my father asked my mother about the people in the living room, when in fact nobody was there. And his obsession with “bibbits,” invisible bugs he saw on the tablecloth, the blankets, his pajamas. Life for the two of them became surreal. Eventually, there was home nursing, with its invasion of privacy and infantilizing talk. (And the expense—the incredible expense!) Then, finally, the nursing home, where he was propped up in front of a television, a man who had always hated television, and left there for hours at a time. Toward the end, when we went to see him, he did not know who we were, but said politely that it was good to see us and we were very kind to visit. Heartbreak comes just when you think nothing worse can happen.
My father’s long agony had been over since 1985, but it was still fresh in my mind, and now it was my turn. I was put on Sinemet, a Parkinson’s drug of choice, and, in time, eight other medications. They worked just fine, though they grew less effective from year to year. I kept on writing, as if I were immune to the memory loss and brain deficiency common to late Parkinson’s. When I asked if it was possible that my brain would continue to function, I was assured that every Parkinson’s patient was unique, and so my brain might well see me out. That may be, I told myself, but I could not cite even one unique Parky who had escaped with brain intact.
Early in my years as a writer I had published three volumes of short fiction, and then for many years I had written only novels. Now, with the Great NeverNever just around the corner, I did not want to die—or, worse, lose my marbles—in the middle of a three- or four-hundred-page novel. All that work—and time—gone to waste. Better to try a story, finite in conception and execution, and less depressing to leave behind unfinished. So I determined to concentrate on the short story. This, however, proved nearly impossible, since every story kept trying to turn into a novel.
Time was going by fast and my stories all seemed wrongheaded, when it occurred to me to write a story for Joan while I could still write at all. A kind of love letter, in fiction, unashamedly autobiographical. It took me months, and in the end it was a crazy kind of story, drawing on three events in my life—the third part was my death—and I called it “Three Short Moments in a Long Life.” Against all odds, The New Yorker published it. E-mails arrived—readers liked the oddity of the story—and I felt as though I’d been given a reprieve: your brain will not collapse today, this week, this month. Never mind why. Hey ho, the wind and the rain!
By this time, I was getting around with a cane, and then for a brief while with a walker, and I knew that before long my legs would give out altogether. I kept on writing and good fortune stayed with me. I published two more stories in The New Yorker: “The Long Black Line,” about an incident in the Jesuit novitiate, and “The Rise and Rise of Annie Clark,” a wicked version of the life of my aunt. And the magazine accepted one more, “The Escape,” a wry, disturbing look at Parkinson’s disease, which would appear in the May 6, 2019, issue.
I call the story wry and disturbing because that’s what it was to me. I had treated the subject in fiction some thirty years earlier, in my story “Father,” which was included in my collection “Comedians.” And now I revisited some of the same bloody ground, incorporating a number of details from my father’s illness (and his late-in-life artistic explorations) as well as my own, with the intent to explore familial damage and the insoluble mystery of escape into art.
Each of these stories was, in some measure, autobiographical, and each a reassurance that, despite my worrying, I was still compos mentis. Then Deborah Treisman, the fiction editor of The New Yorker, asked if she might show my collection of new and selected stories to a publisher, and two weeks later I had a contract for “The Heart Is a Full-Wild Beast,” subtitled “And Maketh Many Wild Leaps.” My heart indeed made many wild leaps.
It was after “Three Short Moments” was published that I first looked into California’s death-with-dignity law. I found it hard to believe that the state was sanctioning a kind of suicide. Suicide? No, death with dignity. Joan and I discussed this at length. We knew what the final stages of Parkinson’s looked like, and, despite the horror of going out to meet it coming at you, we came to agree that, in this case, death sooner was better than death delayed.
I consulted my primary-care physician, my doctor for the past forty years, who knew me well and had followed my gradual physical deterioration under Parkinson’s. I reviewed for him my progress—I liked the irony of the term—from my half-assed stumbling walk to reliance on a cane, and then that sobering moment when I was forced to use a walker. That was where I was now. Next would come the wheelchair, and, as my legs gave out completely, there would stretch ahead of me the long loneliness of life in bed. Unable any longer to write, I would nevertheless continue to exist, very likely with some form of dementia, not knowing who I was or who Joan was or why this nightmare had no end.
The doctor and I discussed this for a long while. In the end, he concluded that we would need to discuss it further, together with at least one other doctor, and, of course, with Joan. He added, kindly, that although I hadn’t brought it up, it seemed I still had the requisite brain matter to be considered “of sound mind.”
And thus my suicide began. Three home visits by two doctors—my primary physician and my neurologist—officially established my decision to die with dignity. At each visit, my doctor emphasized that this decision could be cancelled at any moment, including the moment before I saw it through. I signed a formal document attesting to my decision, and it was co-signed and witnessed, according to the law.
What Joan and I were doing came home to us more vividly as we discussed dates for the Event. Given the strain that all of this put on us—dying, death, eternal separation—we chose sooner, rather than later. April 22nd, three weeks away.
There remained the matter of the drink. It is nearly irresistible to call it fatal or final or, in a classical mood, to call it hemlock. The concoction would be prepared by a pharmacy licensed to do so, called—can you believe it?— Feel Good Compounders. We could pick it up before the 22nd and keep it out of harm’s way until needed. At that time, in the presence of Joan and the doctor, I would drink the fatal mixture of liquefied drugs, then fall asleep, and in an hour or more I would die. In fact, dying might take as long as six hours, but, however long it was, our doctor would remain with us until the end. The end.
Any questions?
Yes?
How do we get through the seventeen days until April 22nd?
How do we greet our friends as we wear out these days?
Am I opting for the easy way out?
The answer was, Yes. But this act was easy only in a very limited sense. Easy because it was legal, and carried neither shame nor blame. Easy because it involved no secrecy. Easy because it was an agreed-upon act of love.
If it seems altogether too easy, consider what it would entail for someone you love. Or for you.
Our reasoning: we arrived at our decision through a consideration of who we were together and how we loved and why. We had spent many years in religious life and, separately, we had reached the conclusion that we were responsible for our own lives, for the decisions we made, and for the custodianship of our own bodies. Our lives, finally, were in our own hands and the ultimate disposition of them was ours to make, if we could, if we were not victims of violence.
But what about God? I was, you say, planning to commit suicide and invoking California law as justification. But the state law came about through many lawsuits that were aimed at ending life with dignity, instead of prolonging meaningless suffering. The state acknowledged that. And ending pointless suffering is exactly what many scientists attempt to do in their research, and what doctors attempt to do with their palliative measures, and, I think, what the Catholic Church attempts to do with prayers for the sick. Suffering in itself is not a good. God is not a divine sadist who delights in the pain of His creatures. He is the God of charity and justice. He is the God of compassion and mercy. If I find in myself the need for compassion, to allay suffering and to comfort the living, I feel sure that God has at least as much compassion as I do.
In the service for the dead, the Catholic Church asks God to grant us all eternal rest. There is little fuss about Heaven or its glories. No fuss at all about Hell. Just eternal rest. And, after all the words squandered on right and wrong, failure and desire, love and the tragic failure to love, I am ready for eternal rest.
Eternal rest. Even the sound is soothing.
