Caspar David Friedrich, Der Mönch am Meer (The Monk by the Sea), ca. 1809, oil on canvas, 43 1/4 x 67 1/2″. Public domain, via Wikimedia Commons.
I’m living in Indianapolis for the semester on a teaching fellowship. It’s the end of January 2017. I flew into Nashville a few days ago and picked up a Volkswagen Passat that belongs to my mom’s friend’s kid, who is studying abroad for a year. I feel incredibly lucky that this came through for me, because the four or five grand it would have cost to rent a car for the semester is pretty much what I hope to have left over after taxes, living expenses, and my half of the rent on the apartment back in Portland. If not for the gift of this free car, this “writer in residence” position would be, essentially, a break-even deal.
I call Dad to check up. “How’s it going?” I ask.
“I was sitting by the edge of the bed, something about sitting there, it’s one of the only places—relief, a little relief, this was a week ago, and I’ve been afraid since then, afraid to sit there. One of the few things that was working and I lost it. I’m afraid now. I was sitting on the edge of the bed and I put my foot down. It came down wrong on the floor and it twisted. I rolled the ankle, I slipped. I fell. I fell between the edge of the bed and the desk. You know the room, you can picture where. I fell and hurt my ankle but I was also stuck at this angle, I lifted my arms to try to grab the edge of the desk, I couldn’t reach it, then I did but I couldn’t hold on, then I did hold on but my arms locked. I had no strength to lift myself up but now I could not let go, I was stuck that way, my muscles were exhausted, the pain I can’t even tell you, the pain and shaking still this whole time, my body, so the back of my head, my neck, banging the leg of the desk, it’s still bruised back there, my head my leg, I was drooling, crying, an hour and forty minutes, the feeling came back and I could move some, I got out of there but I haven’t sat at the edge of the bed again, I’m afraid, but why afraid, I don’t know, I mean I know but what I mean is when I was stuck there, that whole hour forty minutes all I thought about was starving to death, how I could starve to death there, and all I kept thinking was I wouldn’t mind, I’m sorry I’m telling you this, if it only didn’t take so long, if it could happen and be done already I really think I would say okay, fine.”
“This was a week ago? Have you been to the doctor? Did Ronni or Fran come over?”
“I didn’t call them. I didn’t call anyone. I didn’t tell anyone. I’m only telling you now because you asked how things are going. Well, that’s how.”
My sister and I talk on the phone. I tell her Dad’s story.
“Seems like we’d better go down there, right?”
He takes pills that relieve his shaking—now a relentless full-body tremor—for ninety minutes at a time, though sometimes they don’t last quite that long and sometimes they fail to kick in at all, leaving him watching the clock for hours, shaking and waiting, because he can take them only three times a day. The pills’ efficacy has diminished over time, but the daily maximum dose cannot be increased. He is without insurance and still too young for Medicare, so we cannot pay for him to try the other pills the current doctor says might work better. They cost upwards of a thousand dollars a month. We’ve suggested putting up the money for a month’s worth, just to see if they work, but he says this is pointless. It would be worse, he says, to know that something better was out there, and anyway what if they don’t work, and that’s another thousand bucks gone up in smoke?
It remains a remote but real possibility, even now, that he does not have Parkinson’s. The first neurologist he saw, back in 2007, told him his shaking (then a barely noticeable tic) was a reaction to stress. He clung to this explanation for years, because he thought it meant he could blame his condition on the divorce. Of course, the diagnoses are not mutually exclusive: he may have Parkinson’s, but it may have been triggered or at least accelerated by his emotional distress. Which is to say it is possible that he thought himself into this hell. It is not possible for him to think himself back out.
He lives alone in the apartment that his nephew Michael bought for him in Sunrise, Florida, not long after the suicide attempt in 2013. It’s a small one-bedroom in a development near his sisters and his parents. My sister and I pay the maintenance and dues on it, a fact of which he is unaware. When he was young, he and his friend Steve used to drive past this development and joke to each other that no matter how far they fell in their lives, they’d only know they hit bottom if they ended up there. In fact, there are far worse places to live than the Sunrise Lakes Apartments, which are modest—even a little shabby—but basically comfortable. Still, the place was for them the very incarnation of failure. Now they both live there. Steve lives with his ailing father, who at some point a few years back took out a reverse mortgage on the apartment, so whenever he dies Steve will become homeless. Steve lost a leg to diabetes while he was in prison for some kind of financial fraud. He works at a phone bank now. Dad is, of course, too sick to work. They are each the other’s oldest friend. They talked on the phone nearly every day for most of my life. Dad wrote to Steve all the time while he was in prison—long letters about anything and everything, to keep him busy and give him hope. Now that Steve is out, they are in closer proximity to each other than ever before in their lives, and they both have oceans of free time. But they rarely talk on the phone anymore, and they never get together. I don’t think they could bear it.
In the months leading up to his suicide attempt, my father often spoke of feeling “used up,” “exhausted,” “hopeless,” “tired of life.” I understood my role as that of the dutiful refuter, arguing that things were different from how he saw them, or at least bound to change. Since his suicide attempt, I no longer argue. Now I hear him out, validate what he’s feeling, commiserate to the degree that I am able, and then try to shift the focus of the conversation toward concrete actions we might take to improve his situation. Usually, there are none he will accept. His sisters could come by more often; we could hire someone, maybe; maybe we could afford that. Some version of it. Maybe we could figure out a way. But he doesn’t want anyone in his space. He’s very firm on this point. And it’s true that I cannot imagine him allowing someone—me, my aunts, a stranger—to help him eat, or dress, or use the bathroom. He has never had an ounce of vanity but he has always had a massive, killing pride. Were he to lose his last vestige of self-sufficiency, his martyrdom to his own loneliness, would he even be him anymore? What is he, after all, if not this willful self-destruction? Would ripping back this last veil of his autonomy, flimsy as it is, finally move things forward, force some kind of palliative change, or would it be the ultimate indignity, destroying him once and for all? Or would it not matter? Given that he’s going to die, sooner than later, and of this illness, why not let him do it his own way, on his own terms, however deranged those terms may seem from the outside—in other words, to anyone who isn’t him?
I don’t mean suicide. I mean letting him live his life, whatever’s left of it, the way he wants to live it.
Maybe I’m thinking about this in entirely the wrong terms: emotion, will, philosophy, belief. Perhaps I should be thinking in medical-legal language: indigent, disabled, power of attorney. At what point does my presumption of his right to self-determination become itself a form of negligence, of harm?
And who says it will be sooner than later? How could I possibly know that? And when I say “this illness” do I mean Parkinson’s or depression? Do I mean poverty? Capitalism? America? He is being killed by the health care system at least as much as by bad choices or bad genes. What name will I give his death if he gets one of his dizzy spells and falls down in the shower or on a flight of stairs?
I am never more my father’s son than in the way I turn these questions over—point counterpoint subpoint, this way that way, every possible argument arguable—and endlessly. There are no such things as conclusions here. As decisions. When does a willingness to treat a complex issue with the depth and delicacy it warrants descend into Hamlet-like dithering? The form and fact of the question embody the spirit of what it is asking, thus rendering it unanswerable. The question is designed to forestall all action but further consideration of the question. In this way the question is answered: Time decides.
Justin Taylor is the author of the novel The Gospel of Anarchy and the short story collections Everything Here Is the Best Thing Ever and Flings. His work has appeared in The New Yorker, Harper’s, and The Sewanee Review, among other publications. He lives in Portland, Oregon.
From the book Riding with the Ghost, by Justin Taylor. Copyright © 2020 by Justin Taylor. Published by Random House, an imprint and division of Penguin Random House LLC. All rights reserved.
Last / Next Article