We all first heard about the virus at the same time. It was in the paper that everybody read, and if you didn’t read the paper that day, a friend was certain to have told you before the weekend was over. I read it on the IRT subway platform, at 77th or 86th Street, after leaving the Met. I told a friend that weekend, “We’re all going to die.” Honest, I did. He, too, is still alive, amazingly enough, and can testify to it.
The thing about anxiety is, it’s inexhaustible. You can use all you want, more than you can handle, but there’s always more available, late at night, or upon awakening the next day. It’s also very personal, private, internal. Some-times people can sense that you are in its grip, but usually they can’t, or they don’t pay enough attention to you to notice. If you try to hide it, as I did most days for the next sixteen years, it’s exhausting. But reasonably effective—other people just think you’re preoccupied (which you are), or high-strung, or a jerk.
In the early days, weeks, months, the anxiety was generalized. What is this disease? How is it transmitted? I’m sure I already have it! But what about reinfection? And, god forbid, can I transmit it in ways I don’t know? Is it always fatal? Does it always lead to a long, slow, ugly, humiliating decline? (Eventually you learned: No, it can be mercifully quick. Jack was fine on Friday and in a coma, forever insensate, by Sunday.) Is there any possibility of a treatment? (Eventually the answer to that became clear, too: No, there will not be a meaningful treatment in any time frame useful to me.)
Later the dread becomes more precise. Is that a sinister lesion, or just a bruise? What is that spot inside my mouth? There, if you use a flashlight and a mirror just so, you can see it. Shouldn’t that cut have healed already? Is this really a cold? This is the third time I’ve had diarrhea this year! The bed was oddly wet from sweat this morning. But anxiety can zoom back out to the widescreen quickly, randomly, repeatedly: Will I lose my job, my insurance? Will I lose my savings before I lose my life? Will they herd us into camps?
For a while, there was no way of knowing one’s status for sure. One could read entrails, and I did. Stubborn generalized swollen lymph nodes. A failed anergy panel at the desperate mass screening at Mount Sinai. Then, one freezing January night in 1983, a mildly worded follow-up letter from that screening in my mailbox: “The standard blood tests showed some values outside the normal range.” Actual-ly, so far outside the range (.2 instead of 1.0-3.0) that I know I’m a dead man walking.
Anxiety peaked quarterly, with a blood draw followed by a wait of several days for the results. Attempts not to panic at every decline. When there was finally a test for the virus itself, my doctor’s advice was not to take it. We already know, he said. They might use it against you, cancel your insurance. (This first of my HIV doctors died four years later. I wonder if he ever got tested.)
The survival rate after ten years was believed to be next to nothing—and for me it had already been at least ten years. Probably fifteen. So finally I let go. I told people what was happening to me. I left my job. I resigned myself to my fate, hoping for a couple more good-ish years. I retreated to the beach. I kicked the daily Xanax, which never really worked, in favor of daily meditation, which is not intended to work, but just to be. I was very well-informed. I knew that the single drug available wouldn’t work for long, and since it made me feel like shit, I stopped taking it after a week. Still, I lived.
I got involved with treatment activists, the most inspiring, sexiest group of people I will ever know in my life. I tried group therapy meetings—helpful at first, such a relief to talk openly with men in the same leaking boat—but then they started dying, and watching them get sicker every week was more than I could handle.
After another few years I was a real outlier, my blood drawn by one of the world’s leading researchers, my virus sequenced by his lab. Hang on, he tells me, you might remain a non-progressor. False hope; my numbers drop again. Word filters out that a three-drug combination is working, really working, in clinical trials. Since I refused the drug I was prescribed years before, I am free of drug resistance. The drugs might work for me. Hang on.
Time is quickly running out. Viral load 281,000 copies. T-4 percentage down to 9%. And then, the drugs arrive. At eight weeks, my viral load is undetectable, and soon the percentage has doubled. It’s working. How long, I ask my doctor, can I dream that this might continue to work? You might have ten years, he says. I hear him say: Forever.
Released, my anxiety was free to flow in other channels. At nearly fifty, could I start a new life? Would I run out of money before I died? And now, improbably, I’m over seventy. There’s another virus in the news, once again seemingly aimed at me. Talk about anxiety: I had never contemplated having to cope with being elderly, and it is upon me.
David Hollander tends a small garden in an ideal climate near the edge of the world.
