A Partial History of Lost Causes (4 page)

But how many of us would want somebody posthumously sifting through our past, looking for the first misstep? In retrospect, anybody’s eccentricities, charms, and mistakes can take on a darker dimension
and become foreshadowing. All we can know is that my father’s mind was gone, by anyone’s standards, by the time he was forty. So I do not think my projections for myself are overly pessimistic.

If you’re interested in stories about what can be done in a short lifetime, the history of chess is not a bad place to look—it’s populated almost entirely by people who were at their best when they were barely out of adolescence. There’s Bobby Fischer, of course, though that story ends badly (with lunacy, exile in Iceland, and anti-Semitism) and Alexander Alexandrovich Alekhine, though that story ends badly, too (with alcoholism, erratic behavior, and more anti-Semitism). Then there’s Aleksandr Kimovich Bezetov, who was the USSR chess champion by the time he was nineteen, and the world chess champion by the time he was twenty-two. His is a sad story, too, in some ways, although I didn’t know that when I ran away to Russia to find him.

Before Huntington’s caught up with my father, he was as captivated by the Soviet Union as he was by chess. I grew up during the gasping tail end of the Cold War, and armchair speculating on geopolitics was something of a national pastime. For my father, though, it seemed to hold a particular meaning—it was his evening hobby after coming home from his days of teaching music to college students. He’d puzzle about the ironies of a regime that censored the fact of censorship. He’d spend dinner parties debating whether Brezhnev’s Soviet Union was totalitarian or merely authoritarian. One day when I was about seven, I caught him on the floor of his study poring over photographs of Soviet parade order. “What are you doing?” I said.

It wasn’t unusual to find him doing odd things. My father had a healthy disregard for social conventions: he once let me paint the house windows in rainbows with my watercolor set, to my mother’s horror, and he’d clap for trees that he thought were doing a good job of exploding into red during the fall. When I couldn’t sleep, he’d let me sit up and watch Johnny Carson and drink ginger ale. When I spilled purple ink on the brand-new white sofa, he helped me turn the pillows over so my mother wouldn’t find out. One time he took me out to watch a meteor shower at midnight on a school night—and I remember the chill of the wind and the subversion of learning that the universe still existed at night when you couldn’t see it, or weren’t supposed to.

“Trying to figure out who’s really in charge over there,” he said. “Who do you think?”

I looked. In the photographs were grim men, their faces framed by mustaches and furry hats. None of it looked like a parade, in my understanding of the word. I pointed at one of the men with my toe. “Ah,” my father said. “Chebrikov. A very educated guess. You should go into government.”

“I’m going to be a marine biologist,” I said, even though it turned out I wouldn’t be.

“Very well,” my father said solemnly. “If you must, you must. But do you know how else they try to find out who’s in charge?”

“No, how?”

“They look at the portrait order on the walls.”

“Like, the most important portrait would be on top?”

“Exactly right.”

“That’s weird.”

“Exactly right again, Irina.”

I don’t know what all that was about for him. He was a pianist and a professor of music, and during the life in which I briefly knew him, he was happiest at his piano, composing his songs, or sitting at a table, playing a game. It was a good life, as far as I could tell. But perhaps it was not the only one he might have wanted.

When we played, he’d reverentially remove the pieces from his box—he had an old and enormous set with wooden pieces the size of my palm—and lean forward. “With these,” he’d say—quoting Charles the First, I later learned, though at the time I thought it was his own private phrase—“ruler and subject strive without bloodshed.” So maybe that’s it: all the sublimated war impulses, the breathless following of geopolitics, were a desperate craning of the neck down a road decidedly not taken.

But these are not questions that a child thinks to ask, and by the time I knew to ask them, there were no answers forthcoming.

It was too bad my father never got to see how the Cold War ended; he would have been tickled beyond belief that our CIA never saw it coming. (“Do you know how many people are getting outrageous salaries to try to read Chernenko’s body language, Irina?” he’d say to me.
“They get fifty bucks every time he sneezes. I tell you, kid, it’s nice work if you can get it.”) He would have loved the coup attempt in ’91 (he loved nothing better than a good coup attempt). He would have loved to see the falling of the Berlin Wall. My father had a limitless capacity to be touched by the histories of other nations, the fates of other people—and more than that, he loved the intricate ballet of advance and retreat. He loved it all in real life as much as on the chessboard. Like Lear—like anyone—he wanted to see who won and who lost. He wanted to see how things would turn out.

And if I’m honest, that’s a good part of my own grief these days. Not a majority—that’s composed of good old-fashioned fear, the animal will to survive tangling with the cold pronouncements of medical science. But a fairly significant amount—maybe 15 percent or so—is just sorry that I don’t get to see the end.

So I wish my father, the dedicated Russophile, had been able to watch these things. Although in a way, I suppose he did. He was in the same room as it all. In ’89, when the Wall came down, he was still at home, and he spent most of his days in darkened rooms, the lunar light of the television flickering across his eyes. That Christmas, Ceau
escu was executed along with his wife, their pale corpses paraded across Romanian state television for the viewers’ satisfaction. My father sat with a bib, trying to bring stewed carrots to his cheek and missing. In ’91 came the footage of Yeltsin bellowing at a tank: by then my father was in a nursing home, his mouth agog, his eyes glazed, his hands waving and reaching at things just beyond his reach. The Cold War had ended, and its terminal images were flashed across the television for the smug first world to see. And though my father was, by that point, fairly indifferent to these events, I suppose it’s right to say that he technically lived long enough to see them.

Everyone is their brain, of course—and in my callous worldview, everyone is only their brain. But my father was somehow
especially
his brain. His sense of self came from brilliant inferences, razor-sharp memories, a sense of humor that cut you off at the knees and left you unsure what had happened until you tried to walk away. Some people have other
elements at their core that can sustain some brain damage—a silliness or a sweetness or a faith—and Huntington’s can take quite a while to completely unravel them. Some people die with gentleness intact, and there is room to believe that they are still in there somewhere, if you’re the kind of person who likes to believe those things. With my father, it was not like that. He was a mind, first and foremost, and a mind is an elaborate system of pulleys and levers and delicate balances. And when one piece is missing, the whole system has lost its integrity.

Early in the disease, the minor disorientations and lapses that happen to everyone occasionally started happening to him all the time. Then his sense of causality went—moments existed outside of consequence or context. He sat at the piano, but he no longer played. His personality dulled into a crude, distorted version of itself. He grew younger, in terms of preoccupations and anxieties. Then his memory started to erase from the present backward. I disappeared. Then, eventually, my mother did.

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.