The brightest addition to my spring was the freshly collected complete works -- published and unpublished -- of George Orwell, author of 1984 and Animal Farm. The parts I read first were the diary extracts, especially those written during the height of World War II. At one point, Orwell writes of noticing a woman on the London subway bursting into tears during an air raid. He asks her why, and she tells him that she’d just moved back to the city; since a week had gone by with no aerial bombing, she thought the blitz was over. Suddenly bombs were falling again. What are we to make of such people, Orwell asks, despairingly.
I wonder whether Orwell wasn’t being a bit harsh. What the woman had not lost sight of, after all, was her right to normalcy, her right to an assumption that life should not mean being afraid each day that Hitler would drop a bomb on her house. At this stage of the epidemic, I suppose many of us feel the same way, and our sentiment springs from the same sources as that woman’s on the subway. Now that death rates have plunged, we want to believe that we don’t have to swallow dozens of pills each day, we don’t have to practice rubberized sex, we don’t have to feel constant fear, as we felt it before. And to the extent that these feelings are purely a function of anger or escapism, they are as understandable as they are obviously dangerous.
But what makes our situation more complicated still is that these feelings of rebellion and relaxation aren’t completely irrational. Some activists don’t want you to know it, but 1999 is not 1989 in the HIV epidemic. It is not even 1994, when POZ first started publishing, when a magazine for people living with HIV seemed such a daring concept. The truth is our lives with HIV would be unrecognizable to anyone in the 1980s or early 1990s. Most of us will still die of AIDS, but our lives will, in many cases, be long and fruitful in ways that our predecessors never even dreamed of.
I just got back today from my doctor’s, where we had a very 1999 conversation. I’ve been on combination therapy for six years now, and the virus, as if on schedule, is finally creeping back. Three years of undetectable virus have ceded to low but measurable levels of viral activity. Still, my CD4 cells are over 700, and my CD8 counts have recently sailed over the 1,000 mark. Despite this, because of my viral rebound, I am designated a treatment “failure.” “Failure,” in this case, more probably means another two or three decades of treatment and annoying the editors at POZ.
Happily, my doctor says, I have options -- dozens, in fact. One of them is a drug holiday. One is a batch of powerful new drugs like Sustiva or abacavir or switching to existing drugs such as d4T or ddI. By the time you read this, I will have made a decision. But, whatever the hysterics are now saying, my decision won’t be without considerable hope for the future. And I am not alone in this. Yes, many who do not know they are HIV positive -- many of them poor and minority -- will not have access to these treatments until it is too late. Yes, the lack of affordable treatment for the poor in sub-Saharan Africa and Asia is a calamity. But alas, so is dysentery, which still takes more lives than HIV in Africa, and could be cured by the simple provision of clean drinking water. To say that we cannot save the entire world from sickness is not to say we have gotten nowhere in the AIDS epidemic.
Here in America, we should not be crazy enough to think we are heading for another catastrophe on the scale of the 1980s. The data simply aren’t there for a doom scenario, however badly our AIDS service organizations want fear of such a scenario to provoke our support. So our problem is one of success. Success breeds complacency. It breeds fatigue. It breeds rebellion. By overhyping the problem of “failure,” we not only risk losing credibility, we risk missing sight of the real problems of success. And we risk misunderstanding the psychological origins of some of our current setbacks.
I know, for example, that we are supposed to respond to noncompliance with drug regimens and lapses in safer sex with horror and concern. But the sad truth is I recognize the impulses behind both only too well. Surely we all do. They are a function, in part, of simply not wanting to think anymore about this thing. It takes determination and a clear goal to climb a mountain, but many of us have now reached the summit only to find dozens of hills ahead of us as far as the eye can see. That’s a different and somewhat daunting place to be, and most of us are just doing what we can to get through. We take our pills on time and we put our rubbers on for the most part, but it is a joyless, seemingly aimless, exercise.
And a large part of me rebels against it. I would like to have a day during which I go eight hours without worrying that I forgot to take a pill. I would like to have passionate, irrational, rubberless sex without thoughts of death or infection or reinfection. I would like to sleep at night without dreaming of vomiting up blue chalky pill after blue chalky pill until I wake for yet another med-prompted crack-of-dawn pee.
When my doctor mentioned the idea of a drug holiday, my heart leapt. Not because it makes much clinical sense, but because the very phrase intimates a more expansive AIDS holiday, a period in which we might never expect the air-raid siren to sound or the bombs to land. I was reminded that what most people call life, we have come to see as a vacation.
But maybe the spasms of self-criticism followed by the spasms of excuses can be better replaced by a calmer understanding that we are human beings after all. In this twilight zone of an epidemic that is no longer a plague, we have to try to find ways to encourage people to be safer in sex without relying solely on a fear that deadens life. We have to find a way to talk about monogamy and love and commitment that is compatible with the notion that sex can still be joyous and exhilarating and profound. We have to accept that with exhaustion comes failure, but that self-forgiveness is also a critical part of survival.
These are not easy things. There are some indicators that our future may be grimmer than our very recent past: the mutability of the virus, the letting go of vigilance, the often debilitating side effects of the drugs. But there are also signs that the future is far brighter -- the array of treatment options we now have, the plummeting death and opportunistic infection rates, the complementary therapies of testosterone and anti-depressants that have made many lives more livable, the simpler regimens that are now coming on stream. When I lose heart that the numbness of HIV will ever recede, when the thousands of pills we have yet to take loom in front like an insurmountable wave, I try to think of this future. And I refuse to apologize for the hope that will make it possible.