A Writer Fights a Faceless Enemy and Learns to Live with Fear
06/17/1985 at 01:00 AM EDT
Hours before dawn I am inextricably roused from a deep sleep. I feel awkward, like I've gone to sleep in my own bedroom but waked elsewhere. My chest, shoulders and back are as wet as if I've just stepped from a shower. I walk through the house, flip on lights and check the thermostat. The house is comfortable, the air conditioning working flat out against the New Orleans heat. Confused and frightened, I say aloud, "What the hell is this?"
I open a large French door to the steamy summer night. Electrified and amplified New Orleans jazz rushes in on me. From nearby Bourbon Street, the red-hot epicenter of New Orleans gay life, I can hear the high-pitched laughter of drunks, the blaring of car horns, the crazy piping of a calliope. I wonder if the noises had waked me. But then I realize I was called from sleep by night sweats, an early warning signal, one of the first symptoms of AIDS.
Since that night about a year ago, I have only waked with night sweats on two other equally unnerving occasions. But since the first episode, every facet of my life has been adjusted to accommodate a faceless, unwanted houseguest called AIDS. Although I have not been diagnosed as having the disease, I have been hospitalized twice with illnesses my physicians say are "symptomatic of pre-AIDS or ARC." Conceivably I may avoid a full-blown case, but within the past few years I have buried so many friends and acquaintances with AIDS and been exposed so constantly to its devastating cunning that I too am now one of its victims—emotionally, if not physically. As such I live in an eerie limbo, like a prisoner on death row who keeps getting reprieves. And after a year I have asked the question "Doctor, do I have AIDS?" so often it is now a refrain that sums up my whole life.
Each morning I wonder if this is the day purple spots indicating Kaposi's sarcoma will appear on my legs. Frequently I set my alarm clock for odd hours to wake and see if I am sleeping through a deep night sweat. Daily I search my neck and body for swollen lymph glands. I monitor my weight, and each ounce I lose throws me into a tailspin, doubling my doubt and uncertainty. But out of fear that I will see the purple spots, wake in another night's sweat or feel swollen glands and have to be hospitalized, I refuse to stock my refrigerator with even the normal stores of food. Every afternoon after work I walk to the French Quarter A&P and buy the essentials for one night.
For months I answer letters and return phone calls only from old friends, realizing I am desperate to hold on to the period in my life when it was easier to laugh and no one dwelled constantly on the dead and the dying. I am reluctant to meet new friends or establish relationships that might last two years or two months because of AIDS.
The fear of the virus radically alters my life, and I watch it transform the lives of my friends. Men who once hit the sidewalks and bars nightly retreat into bunkers, suspicious, hostile and hurt. The bar-scene way of gay life, with its around-the-clock offer of sexual adventure and escape from reality, has been cut off by AIDS, and gays have yet to find positive alternatives. Other friends carry on with mindless fatalism, hitting the streets at midnight, packing into crowded discos and bars, head banging and dancing until dawn on the very lid of death.
I make two changes in my life immediately. I avoid involvement with those who are not as AIDS-aware as I am. And I seek out for friends only those who can contribute to the quality of my life by reminding me to live simply and appreciatively.
With the first night sweats I lose perspective, but unlike those who take to bunkers, I seek out doctors. I am hungry for definite information about AIDS, for clearly defined evidence of how it strikes. I exasperate my doctor by asking if an exotic sunburn is evidence of AIDS, if a shoulder rash recurrent since birth is now an indication of Kaposi's sarcoma. Each time he shakes his head, granting me a reprieve. But finally he nods his head in agreement when I ask if the emotional strain of being surrounded by the dead and dying, of living with the fear of AIDS, can kill the spirit even before it hits the body.
He tells me I am not alone. Most of those he has seen like me, who live in fear of AIDS, suffer more emotional stress than those who have received their death sentences. After the initial shock, depression and denial that accompany an AIDS diagnosis, men who are going to die can make definite plans for the remaining days of their lives. At least they can stock their refrigerators, write their wills, count the number of Dynasty episodes they have left to watch or come to know the value of friendships.
Gradually as I reshape my life because of AIDS, I reach an accommodation, an understanding with my enemy. I flatter myself in thinking I have fought AIDS to a standoff in a yearlong mano-a-mano duel. More important, at times I have forced him to show his hand, and I have forced myself to look, to see exactly what I can expect if he wins. I no longer deny that the picture is ugly. The lucky AIDS victims die quickly. The unfortunate linger and suffer. At their deaths men over 6 feet tall often weigh less than 100 pounds. Hallucinations warp their days until they are spared by comas. For some, bowel movements turn to blood. Many victims suffer and die alone. One doctor I know tells me that in tears he called his wife and asked her if he could bring home a terminally ill AIDS patient. She said no.
Living with the fear of AIDS brings me, on a white-hot early New Orleans summer morning, to my doctor's office at the Ochsner Clinic. I need some sort of definitive answer, some verdict that will free me from uncertainty and doubt. My doctor is a kind, avuncular man, but he makes me nervous as he flips slowly through each page of a six-inch-thick file containing my recent medical records.
"A year," I say. "That's all I ask. Can you keep me alive another year?"
Page in hand, he glances at me as if he needs to write "bonkers" in my chart and continues reading. He has deathbed AIDS patients in the hospital. Within a few years hospitals all over New Orleans, like those elsewhere, will be swamped. He closes the folder and sits back and tells me again that I do not have AIDS but that because of my fears, he wants me to try a drug, suramin, which seems to suppress the AIDS virus, as a preventative measure. The drug may be released soon by the federal government for use in the treatment of AIDS. He asks if I would be willing.
For a moment I remember the first night I waked with sweats and listened to the raucous sounds of the French Quarter, where men were still out before dawn, willfully threatening themselves with exposure to an incurable disease. I remember the first friend I buried with AIDS and the others, and I recall the nights I sat at home alone and consciously reached the hard decisions to change my life to stay even with AIDS. On many of those nights, frustrated and frightened, it would seem that just changing a way of life was a futile gesture in the face of such an enemy. And often on those nights, as I sat on my couch wondering, why me, why now, why everything, like the condemned man in Camus' novel The Stranger, I would open my heart to the benign indifference of the universe and simply cry.
Now my doctor offers hope. But even as he mentions the side effects of suramin—it can be toxic to the liver—I know men are still out on the streets of the French Quarter—the streets of America—testing their fates against the virus. My father once told me that institutions and situations don't change, individuals do. The never-ending midnight of the gay world will continue until AIDS has claimed the last dancer in the last disco. I have danced until dawn many nights in those discos from London to New York to San Francisco. It is up to me to change, and I have done so. The side effects of suramin will be unpleasant. But AIDS is monolithic. I ask my doctor when I can take the first dose of suramin.