From a memoir published in September by Farrar, Straus and Giroux. Roth is an editor at n+1.
Secrecy came easily, at first. It felt like the natural condition of adolescence, along with its counterpart, gossip. They fed off each other. We all had secrets: crushes, ambitions, jealousies, and sorrows, most of them still concealed from our everyday selves. I would no sooner have blabbed about my father’s illness than I would have let my mother find the stains on my sheets. Our housekeeper had been let go for reasons I couldn’t understand, and my mother began to do most of the washing, in addition to the cooking she’d always done. She also spent more and more time in a room off the kitchen that my father called “the junk room,” where she began to train herself in the nonprofit arts of grant writing, fund-raising, and career counseling.
Despite the ease of keeping quiet, I wasn’t exactly sure why it was necessary. As I began to pay attention to the AIDS stories proliferating in the newspaper, I wanted my father to be brave. I wanted to be proud of him, not protective. It was 1988, a time when the growing AIDS-awareness movement needed “innocent victims”—that false category—to show the disease was more than “God’s punishment on drug addicts and homosexuals.” Jerry Falwell or Pat Robertson or some such televangelist called it that, and my father liked to repeat the phrase in a mock Southern accent.
“I could lose my lab,” I remember him saying to me once, perhaps when I’d asked if I could tell my favorite English teacher. “Is that what you want? The hospital wouldn’t want the publicity or the risk. You have no idea what people will say. Think about your mother: all her friends watching her suffer, calling up to see how we’re doing, but really to make themselves feel better. They don’t need to know.” This made sense; the Dalton School, for all its progressive principles, was not a place where one wanted to be noticed for the wrong reasons. In ninth grade, I had suspected that a friend I had known since kindergarten, the unruly kid who first taught me how to curse, was shunning me in order to get in with the lacrosse players. “I will not be your proverbial sacrificial lamb,” I told him. He thought this was hilarious, and for weeks my name was “the proverbial sacrificial lamb.”
It was dangerous to put oneself out there. And yet I did it again and again and do it now. The boy who was about to become my closest friend had a similar term for it, “being Jesus.” “There you go,” he’d say, “being Jesus.” He said it because he thought it was true, and I agreed with him, although he couldn’t hide his smile of satisfaction, the cruelty that comes when we’re able to tell our friends unpleasant truths about themselves.
He was right that my father’s mortality had stirred me with a strange kind of pride. I had my secret, the most important secret of all: we were going to die, the lacrosse captain, the violin prodigy, the math genius, the banker’s daughter with Matisse paintings on the wall of her Fifth Avenue apartment. Neither hard work nor talent nor money would protect us, and it was my privilege among the privileged to know it.
That first year of my father’s full-blown AIDS, our kitchen transformed into a medical-school cafeteria and a sort of war room where we followed the course of the illness. Enlarged photographs of lesions ended up on the table, a few places down from where we ate spaghetti Bolognese. My father and I practically dared each other to eat while looking at electron-microscope slides of nematodes, as my mother left the table in protest, her food untouched, and took refuge at the piano. We studied Kaposi’s sarcoma or looked into the milky, worm-ridden eyes of people suffering from river blindness. These other pictures were there for perspective, as though we were telling ourselves how much worse it could be or was about to get. My father knew that if he’d been African he’d already be dead. But he couldn’t really know what was going to happen to him, and he couldn’t really prepare us.
After such dinners, he’d climb the stairs slowly and retreat to his bedroom. Sometimes I remembered to clear the table before going to scratch out Mozart’s fourth violin concerto, in D major. I was always embarrassed to replace my mother’s perfectly turned phrases with my own halting notes, and even more embarrassed that she’d be listening. If she corrected me, I’d fly into a rage, destroying in this way two music stands, one fairly expensive bow, and three neck rests. My mother treated these eruptions like outbreaks of bad weather, waiting them out under some mysterious mental shelter. My father, upstairs, mostly ignored them.
There were as yet few visible signs of my father’s disease. He’d been losing weight, but he’d been trying to lose weight for years. People even complimented him on the success of his diet, he announced with grim satisfaction. The pneumocystis pneumonia left him with only the occasional cough, and his numerous allergies had all vanished. The way my father explained it, HIV, once it enters the bloodstream, seeks out a special kind of white blood cell to use as its host. The helper T cell, as it’s called, usually triggers an immune response that allows us to make new antibodies. As the virus breeds over years, T cells decline faster than they can be made. Without enough T cells to generate new antibodies, our immune system becomes inefficient. Antigens, or foreign agents, go unrecognized and unfought.
The slow stripping away of the barrier between self and other is what makes AIDS a hideously creative condition. Misdiagnoses were normal. No one had seen a human being suffering from a common cat parasite until it began to happen. Ordinary drugs might backfire extraordinarily. A fungus could run out of control, breeding in your throat or even affecting your brain. A population of benign bacteria in your intestines might grow suddenly wild, stealing nutrients you need to survive; if nothing else got you first, you might slowly starve to death.
My father tried turning his thoughts into a substitute immune system. Encounters with strangers, friends, and animals, undercooked or odd foods, these were threats to be anticipated. He wouldn’t walk around the street wearing a surgical mask, but he often had a handkerchief and seemed to move as quickly as possible from our apartment to his car to his lab, each an enclosed and relatively safe space. I told myself that his need for mental discipline over his body explained why he’d turned down my requests for pets; why he’d abruptly stopped our wrestling pillow fights when I was seven and—by the time I was fourteen—had stopped touching me at all; why he disliked fish in any form; why the mention of any Third World country invoked a monologue on filth and disease and the perils of inadequate public sanitation, which he immediately made fun of himself for launching into. Quoting someone else, as usual, he’d end by saying that Americans like to confuse toilets with civilization.
He was also infectious, at least to some. Like any New York Times–reading child of the ’80s, I knew that AIDS was a sexually transmitted disease. I also knew, somehow, about sex—at least, I’d been forced to take our tenth-grade sex-ed class. I was relieved to know my mother hadn’t been infected, but that raised uncomfortable questions about my parents. My father said he’d known something might have been wrong since I was six. Was the disease the real reason I was an only child? What hadn’t they been up to? Perhaps it was a kind of only-child possessiveness, in which each parent existed only for me, never for the other, but I always had great difficulty thinking of them as sexual beings. My parents’ bed, for instance, I always thought of as my father’s; he was usually in it, my mother usually not. It was a place for instruction, listening to music, reading, and rest.
And yet, could it have been . . . Yes, my father really did give me condoms! Before I left for music camp in Tennessee, where my violin teacher had recommended I go study with a friend of hers. How farcical it made actual sex seem at the time. How strained, too, that moment, as though he’d told me to go fuck with his blessing and then attached the curse of precaution, another self-consciousness added to my own.
We never forgive our parents for good intentions poorly put into practice. But, even then, I thought I could divide intent from effect. There was a strange closeness in our relationship: my father and I discussing our bodies with detachment, or rather he lecturing and I learning to ask questions. T-cell counts, acne—anything was fair game as soon as I could get my tongue around a multisyllablic piece of Greco-Latin medical jargon. On long car trips, when I was still practically a toddler, my father would say, “We’ll be there faster than you can say colojejunostomy,” or adenosine triphosphate, or deoxyribonucleic acid. Often, these trips were to visit my father’s father, who I’d been told was dying from a prostate tumor the doctors had caught too late. “Why can’t they take out people’s prostates before there’s any cancer?” I’d asked. I also begged to have my appendix removed once I discovered it was useless and potentially harmful. I was, at certain moments, capable of being the coldest rationalist. What was an organ, a finger, a leg, compared with the survival of the whole? If my father wanted to make a doctor of me, which he never said he did, he’d at least succeeded in making me a believer in the power of scientific information. On occasional weekends, when I was in middle school, he took me along to his laboratory. He let me spin the blood samples in the centrifuge while he set up the microscope. Then he’d show me slides of blood cells and parasites, teach me how to recognize the infected cells, the cobalt-dyed twists of parasites lurking within the red blood cells they’d colonized. My father’s voice guided my perceptions as I fiddled with the focus knob, and I always half-wondered whether I was seeing what I was supposed to because it was there or because he wanted me to see it.
And how did my parents see their teenage son? Were they proud, ashamed, anxious? They told me they wanted me to be just like a normal teenager and I tried not to disappoint them in my gestures of ordinary rebelliousness. A do-not-disturb sign appeared on my door. Led Zeppelin and Dylan, more often than Bach and Beethoven, played loud enough for my father to condemn “the herd of wild elephants” stampeding out of my boom-box speakers. I spent hours on push-ups and sit-ups in front of the mirror, attempting to will myself into some alternate body that someone might look at with something less than revulsion. Photos of models made their way onto my walls. My favorite was the portrait from National Geographic of a headscarf-wearing Afghan girl whose improbable yellow-flecked, ultramarine eyes stared out, without reflecting, on a world of suffering I could scarcely comprehend. “I’m in love with her and she’s already dead. It’s hopeless,” I told myself. She possessed some kind of dignity or stoicism I guessed I’d need, but which seemed to exist only in ancient history books, or in the far-off countries of the Third World.
I finally told my friend, the one who liked accusing me of “being Jesus,” about my father. We were walking homeward, one afternoon, down Park Avenue, the most boring street in the world, where nothing was ever meant to happen except an endless parade of taxis, when he told me his older sister had HIV. I spoke quickly, nervously, as if the doormen we passed were waiting to steal my secret from me. We were brothers now, in our closeness to suffering.
I thought my confession cemented our friendship, having made him both witness and accessory to my betrayal. If I felt lighter, freer, happier for having a true secret-sharer, not just a paid shrink confidant, I could no longer face my parents without shame and anger boiling up at the slightest pretext. Secrecy falsified everything, even the telling of the secret. I’d sworn my friend to keep quiet, of course, and of course he had to tell at least his girlfriend, who told someone else who’d known me since kindergarten. And this person came to feel I looked down on him, otherwise why wouldn’t I have told him first? By the time I graduated, I figured that anyone who knew me and my friend knew about my father, which meant, in all likelihood, most of the school knew and kept that knowledge secret from me. This did not make my secret any less secret or less powerful, nor did it make me feel any better for having talked.
