In the very beginning of his illness—in those bewildering few months after I beat him at chess for the first time—people always assumed he was drunk. At nine in the morning, on Tuesday nights, in grocery stores and in libraries and once, horribly, at my school play, people looked and whispered and shifted their weight. My mother would keep her eyes straight forward, so she couldn’t see them be embarrassed for her. I would twist in my seat and roll my eyes and think I might absolutely die of mortification. I spent most of my teenage years convinced that my genetic status was irrelevant, since I wouldn’t survive the sheer raw humiliations of adolescence anyway.
Later, my father started to look like a caricature of someone who was sick, and occasionally people would think that he was making a tasteless joke with his exaggerated movements, his rhythmic jerking, the little oppositional gestures he made to overcompensate. People who saw him from behind would sometimes go quiet in disapproval until they saw his pale, gaunt face and eyes that seemed to have receded too far into his skull. Then they’d stay quiet.
At the end, his arms went wild in great loping movements, his fingers twisting. My mother fed him with an incredible ease and tenderness, opening her mouth wide at him the way you do with an infant to get him to eat. I fed him sometimes when I was home on college vacation, and I always felt slightly awkward and embarrassed to be doing it—as if he were going to snap out of it at any moment and look at me sharply and ask me what the hell I was doing.
Do not let anyone tell you the psyche goes quiet into that good night. It writhes, gropes for meaning, until the last. He unfurled nonsense with the same jittering repetitiveness as his interminable string of nucleotides. At the end he was choking on his own saliva. It is not a way to die.
The day I got my results, it was windy. I walked out in the street after talking with the geneticist—even though I wasn’t supposed to be alone, Claire had known from the look I gave her that I would murder her with my own two still-functional hands if she tried to follow me. Skeletal leaves scraped the sides of buildings; the T shuddered past the Mass General Hospital stop, and an army of medical students got out; the Charles River was dull and polluted all of a sudden, speckled with a few halfhearted red sailboats. The sky looked nauseous. And I was struck by two thoughts—one, that all of this had already lost something for me. And two, what an unoriginal thought that was.
I threw up in an alley. People passed by me, startled—was I a cancer patient, sick from chemotherapy? Was I about to terminate an unwanted pregnancy? Was I on drugs? It was the beginning of this kind of looking and questioning: exactly how much pity, in the end, did I deserve? How was it best meted out, if at all?
It had been ten years since I beat my father at chess for the first time. Inheriting from the paternal line makes for a younger onset. In the office, they’d told me that my CAG number—my number of clotted chromosomal nucleotides—was 50, corresponding to an average onset of thirty-two years of age. Half of the people with a CAG number of 50 become symptomatic earlier than thirty-two, half become symptomatic later. That is what an average is.
The doctors gave me this information on a helpful chart where CAG numbers are plotted against average onsets—like looking up the healthy weight for your height, or the appropriate benchmarks for your infant’s psychological development.
I walked out of the alley and Claire was standing there, holding my coat for me. I had vomit on my shoes. She put the coat around me and held it around my shoulders on the T. I sat shaking, and Harvard students gave me dark looks on their way back from the internships that would propel them into the great wide world. We watched the smoky gray clouds in the pink sky across the river. We counted the sailboats. We went home and drank and swore for three days straight.
I was still in college then. There had been much agonizing over whether to give me my results so young, but I convinced everyone that it was the responsible thing—so I could plan whether to have children, so I could set the kind of short-term attainable goals that terminal people are so fond of. I employed depths of maturity and bullshit I didn’t even know I had at the time, talked philosophically and stoically, pretended to have a faith in God and a good attitude (of which I have neither). I met with a psychologist, and I said things like “I’m not going to let this thing beat me” and “It’s in the hands of the Lord.” Afterward, I collapsed and drew in on myself and fell into the dark depression I’d promised everyone I would avoid.
Claire and I were living in a big gray two-story near Somerville that year. I was, I fear, very difficult. I stopped doing schoolwork. Claire dragged me through my Formal Logic problem sets. I stopped going to campus or eating. Claire brought me bagels and left them outside my door. I moped. I skulked. I monopolized our shower for hours, running all the hot water and using all the grapefruit shampoo, because it was the only place in the house where nobody could hear me crying.
I started bringing home different men every weekend, and all Claire did was ask me to bring home cuter ones. “I know you’re having a breakdown, and I respect that,” she said. “I just think you could be doing better in this department.”
Now, of course, it’s very different, and I look back on that time with a sort of bemused chagrin. It’s a wonder that I escaped college without an unwanted pregnancy at the very least—full-blown AIDS at the worst. Somebody asked me about it once—a frat boy, strangely enough—as I was shrugging off the condom he dangled before me. “Don’t you worry about AIDS?” he said. And out loud I said no, not really, but in my head I thought, Please, please, please let me get AIDS so I can die of pneumonia, so my brain is the last thing out the door, so that when I die, it is actually me dying and not somebody else.
I graduated somehow, barely. I majored in philosophy. A false premise yielding a false conclusion is logically valid, as I recall. Then I went for my doctorate in comparative literature. I studied Nabokov.
Other people laugh about staying in academia their whole lives: spending an eternity earning a Ph.D., gathering up knowledge they can’t hope to practically employ, studying the countless refracted interpretations of a world they’ve never experienced. Being a perpetual academic is living in a potential energy that never becomes kinetic. I have trouble laughing about this.
After college I calmed down considerably. I’m not out much, but very occasionally—once or twice in the past five years, let’s say—I’ll meet someone interesting, with a dry sense of humor and a dark intelligence, and I’ll know objectively that this is the kind of person whom, in another lifetime, I would want. I can see this other lifetime sometimes, if I squint, but I don’t particularly resent it. It’s like looking at other people’s vacation photos. And if there is an actual sense of loneliness or longing, it’s like feeling a human hand touch you through gauze—removed and almost unrecognizable.
I began playing chess Saturdays in Harvard Square, against the old wizened men who charge you a dollar to lose to them. I did not grow up to be a chess prodigy—or any other kind, for that matter. But I find something compelling in the game’s choreography, the way one move implies the next. The kings are an apt metaphor for human beings: utterly constrained by the rules of the game, defenseless against bombardment from all sides, able only to temporarily dodge disaster by moving one step in any direction.