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A Cold Case

Trying to recall the exact moment my father told me he was dying

Marco Roth
October 22, 2009
Editor’s note: This article was originally published on August 23, 2007. 
This article is part of AIDS and the Jewish Community.
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Freud said that “hysterics suffer from reminiscences,” although he didn’t have memoir-writing in mind. As I write my way back ceaselessly into the past, I wonder about all the things I only half-know and half-remember, random hysterical tics. Wasn’t I absorbing, all the time, the habits and styles of an invalid’s life? For a long time after my father’s death, I lost my interest in empirical science, so I don’t know if neurologists have figured out the mechanisms of Proust’s “involuntary memory.” I can see the headline anyway: “Researcher Locates Secret Ingredient in Proust’s Madeleine.” They’re tracking the section of our brain that lights up when we eat a favorite food of childhood, encounter a perfume our mothers wore. But what will the light tell us? We still can’t will memory into existence without changing it somehow. The conditions of the experiment affect its outcome, which is why, like most great discoveries, Proust’s recovery of his Combray childhood happens with a sudden loss of control, by accident. The true restored memory returns to us unbidden. Its sign is surprise. Or maybe the feeling of surprise is mistaken for the truth? Either way, in fits and starts, in idle hours or with strained purpose, over the last ten years I’ve tried repeatedly to write about the day I finally learned my father was dying from AIDS.

Such an event, oh yes, shouldn’t it be indelibly etched in my memory? Still, the scene keeps shifting: in one leadenly symbolic version, I’m interrupted while reading a letter from the girl I’d kissed a few weeks before. In another, I’m losing myself in a Yankees game, Mattingly batting in the third. I’d learned to play baseball mainly by watching him, the deep crouch at the plate, weight on the back knee, shifting quickly forward as the hips turned to bring the bat through to meet the pitch, the quick snap of the wrists used to fight off pitches and scoop errant throws to first. My father watches with me for two minutes, a look of pain and disgust on his face. He asks me to switch it off. I refuse until I notice that somehow, unlike his usual unprovoked attacks on my sports habit, this one is really serious. A third draft tries a tableau of a more unified family life—my father at his place at the kitchen table, opposite my mother, who I can see is trying not to cry. The biology textbook he used when teaching medical students, placed to his right, is open to the section on immunobiology. I’ve pulled around one of our high-backed cane dining chairs to see better, hunching uncomfortably over the edge of the table. As I press down into the wickerwork, a latticed tattoo is growing on the back of my thighs. It will look like the diagrams of molecules on the page. My father, sitting straighter, stretches a finger over the book, pointing out a section or chart of the various kinds of cells that make up our immune system. You could imagine it as a series of engravings, “My Father Explains the Mechanism of the Disease That’s Killing Him.”

In another version, he tells it as a bedtime story, as if I were a small child, but in his teaching voice, and with too many details:

Once upon a time, when you were about five or six years old. I was working on an idea I’d had for a new malaria drug. I was also supervising the sickle cell clinic at Mt. Sinai hospital, and most of the blood we used for experiments was taken as samples from our sickle patients. We were trying to mimic the benevolent, antimalarial effects of sickle trait without the crippling pain of the disease. One day, as I finished drawing blood from one of the regulars, I did something very stupid. I wasn’t wearing latex gloves, which you’re supposed to do whenever you’re handling blood, and as I was about to get the needle out of this guy’s arm, he jerked. The needle came out suddenly and poked me in the wrist, just below the vein. It was in for no more than a second or two. Now this guy had a lot of problems, not just sickle cell disease, but, like a lot of the patients, he’d got hooked on heroin to get rid of the pain. That’s when I came down with hepatitis; you were too little for me to tell you about it then. At the time we were beginning to hear about this new disease, one that a lot of heroin users contracted from contaminated needles.

It didn’t really happen in any of these ways, although each of them approaches some kind of composite representation of the event. Something happened, unmistakably, because before I went away for the summer I knew nothing, and when I started high school I knew my father had AIDS—had, according to him, anywhere from one to five years to live—and that I mustn’t tell anyone about it.

Given what I knew, his decision to keep his disease a secret from all but his two most trusted colleagues and his immediate family seemed strange. It was 1988, a time when the growing AIDS-awareness movement needed “innocent victims,” that false category, to show that the disease was more than “God’s punishment on drug addicts and homosexuals”—in the infamous phrase my father attributed to televangelist Pat Robertson. My father had not been quiet about humanitarian politics or his belief that biology was beyond good and evil. Only a few years earlier, he’d joined a group of doctors and musicians protesting the use of torture by U.S.-supported regimes worldwide in their “dirty wars” against the Left. He’d visited torture victims in Danish hospitals and signed petitions. But now, facing a near-certain slow death, he suddenly developed a terror of softer forms of persecution: being forced to abandon his laboratory research, being hounded by rumors that would destroy his peace of mind; he feared, too, for how I would be treated at school and what my mother would have to hear from supposedly well-meaning friends. While still alive, he would donate his body to science, participating in a host of clinical trials for the antiretroviral drugs that, eventually, with reduced side effects, would make AIDS a treatable, albeit chronic, disease among those who could afford them. He would not, however, become a spectacle or a spokesperson. Privacy mattered more to him than the cause of “enlightenment” he’d spent much of his intellectual and public life defending.

So great was the power of this secret that I still feel a twinge of betrayal whenever I mention my father’s illness in conversation. Also a great relief, followed quickly by something worse. For many years I’d only told a handful of people, mainly psychiatrists. It was my talisman, the sign of trust, as though by telling someone I gave them a special power over me, to wound or heal. I never knew how they would react. My nervousness would grow as the moment of truth approached, especially around women I’ve loved. Would I become, in that moment of revelation, a figure to be pitied rather than admired, an object for compassion instead of passion? Waifs, strays, and orphans are Dickensian tastes that mostly went out with my grandmother’s generation. My father was right in a way to want me to stay dumb. What chances did I have in my girls-just-want-to-have-fun generation if I didn’t keep things to myself? And what adolescent enjoys compacts of mutual pity? My first girlfriend sent me off to college health services for an AIDS test. Maybe she’d have asked anyone the same—testing your “partner” was practically part of the liberal arts curriculum in the early ’90s—but I took it personally. “I haven’t slept with my father,” I told her, “or anyone else.” “Do it for me,” she said, and I did.

What I actually remember most vividly about my initiation into my father’s secret life as a dying man was the sensation of air-conditioning. It was August, maybe around my father’s birthday, his 49th. My father loved air-conditioning, as he loved veal scaloppine, breaded or in a marsala sauce, red wines, old historical films on TV (anything with Errol Flynn or about World War II), a good stereo system, and a firm mattress. These were the few physical pleasures of his dying years.

It wasn’t only about coolness, his love of air conditioning; it was also the white noise. Only two things can really quiet New York City: snowfall in winter and the persistent hum of an air conditioner’s motor in summer. The drum circles and bandshell concerts in Central Park faded, the blaring horns, sirens, and car alarms were turned into muted background accompaniments. Later, I’d realize that he loved the machines for the same reasons he became a scientist and placed his faith in modern medicine. The air conditioner brought comfort and showed us our capacity for benevolent domination of the earth. He took pride in it, the same way he’d tell me stories of how malaria had been eradicated in America and most of Italy by draining the swamps and killing off the mosquitoes with insecticides. These were concrete signs of progress, of hope for the world, like the Zionist project to make the desert bloom—or, at least, to install air-conditioning in Jerusalem and Tel Aviv.

By the time I brought home the news that these helpful little machines released CFCs into the atmosphere and contributed to the depletion of the ozone layer—before we’d even heard of global warming—he was too committed to change. My triumphal announcement of a scientific discovery unknown to my father was not even met with skepticism, just indifference. By my last year of high school, we ended with a house divided: I sweated in my room with fans and open windows while my father would shut the door, shut out the noise, block out the sun, and read his way by lamplight through blazing afternoons. If I wanted to talk, he’d ask me if I wasn’t just visiting him to cool off.

All that was still to come. It’s entirely possible that my distrust of the sacred A.C. began the same night, just before the start of high school, when I heard about my father’s disease. After all, I’d just spent six weeks without it in the middle of Tennessee, where the heat and humidity exceeded even New York’s. They were happy weeks and seem happier now for being the last of my childhood, or the first of a more promising adolescence. I loved wildly, promiscuously: I fell for the twenty-year-old violinist from Buenos Aires who sat next to me at breakfast the first day. She immediately adopted me as a page—letting me tie back her long black hair before rehearsals, teaching me how to pronounce Spanish, Argentine-style: the double l (“¿como te llamas?”), the soft “sh” sound. Even now, when I hear it, most often in the mouths of soccer players or bearded intellectuals, some part of my brain, with deep pleasure, remembers her saying it. There was my neighbor in the boys’ dorm, a Korean flutist who introduced me to The Cure and also, one night in his room, to the girl whose letter I was reading sometime on or about the moment I learned my father was going to die. She probably didn’t fall for me so much as the stories I told her about the wonders of New York—the nightclubs I’d never been to and the museums and concerts I had. She was a girl of the Blue Mountains, the first punk I’d met, already dreaming of escaping her town. (“You must come visit,” I told her, as I walked her to her room after our last orchestra concert, and she reached out her hand, her dark purple-painted nails, to rest on mine.)

So I was already chafing, so to speak, on my return. I felt imprisoned; dreamed of the rosebush down the slope from the girls’ dorm. My sweet Rochelle (a whole other world in that name) and I kissed in its shadow. Now, clearly, I could never speak to her again. Her impression of me was utterly false. I’d become another person. What sort of person, I wasn’t yet sure about. I grew cold in my air-conditioned room and tried to make sense of death. All men are mortal, my father is a man, my father is mortal. He was going to die sometime in my life. It would be sooner than we thought. To keep the secret, the important thing was to behave as though nothing were wrong. This was what he said he wanted. Everything would go on as before. I would still do my homework as I had the previous winter while my father was hospitalized with “an allergic reaction to dust from the painters redoing our dining room.” That, at least, was my mother’s explanation as she packed me off to my aunt’s house for a few days. He actually had pneumocystis carinii, then one of the leading killers of AIDS patients. I’d known nothing about it. He could have died while I wrote an essay about To Kill a Mockingbird.

It was odd how little my parents asked of me. They were even sending me to France for the last two weeks of summer before high school. The refrain they used was that they wanted me to be “my own person,” independent, uninfluenced, unafraid, possibly unconcerned. I’d spend a great deal of my life picking at the paradoxes of such impossible imperatives as, “Be free,” “Enjoy yourself.” Did they just want me to go away? Or were they strange hypocrites, paying homage to 1970s virtues of “free to be you and me,” hoping all the while that who I was would prove to be what I ought to have been for them? Or maybe, through desperation or delusion, they really meant it, they really thought I could grow up strong, happy, and, yes, oddly unburdened and free—in spite of everything.

I went off to France with the family of the same friend my father once barred from our apartment. The trip has been erased from my memory except for one scene in which my friend and I were sitting on a rocky outcropping above the Avignon bridge, that great stone fragment that breaks off a third of the way across the Rhone. We were talking about high school, the year ahead. He had his yearbook committee, his soccer practice; his older sister’s friends gave him advice on how to pick up girls, how not to be a geek. I’d follow him a little while longer, my Hans Hansen, as though he had the secret of an easeful and successful life, but it was probably then that I knew we wouldn’t stay close. I watched the river beat against the ruined bridge, the bathers happily splashing their tawny bodies further down the bank, the absorbed fishermen as they looked over their lines. According to his parents, I was a terrible guest, moping and complaining as they drove us up and down Provence, visiting chateaux, vineyards, and Cézanne’s enormous white mountains. But I didn’t tell them a thing.

Marco Roth is Tablet’s Critic at Large.

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