World AIDS Day/Day (With)out Art—Taking a Moment to Remember LossFifteen years ago this week I wandered into the Metropolitan Museum of Art's collection of Medieval art at the Cloisters for the first time. I went to see one work of art in particular: Robert Campin's c. 1425 triptych popularly called the Merode altarpiece. It's an icon of Northern Renaissance art and I'd studied it in depth as an undergraduate at the University of Illinois.
To view the altarpiece, a very modest painting on three wooden panels, the visitor enters a small room through two narrow wooden doors. The viewing experience is magical in three ways. The altarpiece alone is dazzling. It's quite small and delicate, but the vivid colors on the nearly 600-year-old panels and the exquisite rendering of every detail of the subject are overwhelming. The painting is installed in a room whose furnishings echo those in the artwork: candleholder, vase, table, and bench. Gnarled tree branches are visible from the museum gallery's small windows, and in the mid-afternoon on a late Fall day, the nature and light of Fort Tryon Park evoke the feeling conveyed by Campin's melancholy Netherlands cityscape. The Merode Altarpiece is arguably the most famous artwork at the Met's Cloister's campus and, after a long subway ride and short walk to the museum, visitors can count on it as a reward.
Or so I thought. My first visit coincided with the fourth annual World AIDS Day/Day Without Art. On December 1, 1988, World Vision declared the first World AIDS Day to draw attention to the swiftly moving disease that was reaching epidemic proportions. In response, many museums selected significant works and either withdrew them from galleries, dimmed the lights on them, or covered them in recognition of the many creative persons who succumbed to AIDS. On the day I visited the Cloisters, making the trip not only from my friend Margaret's apartment in Brooklyn but also from Washington, D.C. before that, the panel was tied shut with a red ribbon. It was a startling reminder of the countless works of art that would never be made by many talented people now dead.
Several years later, in November 1996, the New York Times Magazine published a long article by Andrew Sullivan titled, "When Plagues End." It was a controversial piece in part because Sullivan suggested that recent strides in medical research hinted at a "cure," or at least a vaccination, that would eradicate AIDS.
Over time, Sullivan's piece has proven more optimistic than realistic. Today the number of people believed to be living with AIDS is estimated at 46,000,000 with cases in Africa accounting for half that number. The numbers in Asia, Europe, and South America are rising. UNAIDS, a United Nations AIDS intervention program, estimated that 4,100,000 people seroconverted in 2005. So, the traditions of commemoration and education continue. Events related to World AIDS Day and Day Without Art are meant to increase awareness about the disease and to educate people about the spread of the virus.
Andrew Sullivan's work often inspires controversy and argument. Whatever you might think about him, it's difficult to argue that his writing is anything but thoughtful and eloquent. "When Plagues End" is a long piece. I've borrowed it from the New York Times Web site, and hope you'll find time to read it, appreciate its merits, and argue about its content.
When Plagues End
By ANDREW SULLIVAN
November 10, 1996
I. FIRST, THE THINGS I RESIST REMEMBERING, the things that make the good news almost as unbearable as the bad.I arrived late at the hospital, fresh off the plane. It was around 8:30 in the evening and there had been no light on in my friend Patrick's apartment, so I went straight to the intensive-care unit. When I arrived, my friend Chris's eyes were a reddened blear of fright, the hospital mask slipped down under his chin. I went into the room. Pat was lying on his back, his body contorted so his neck twisted away and his arms splayed out, his hands palms upward, showing the intravenous tubes in his wrists. Blood mingled with sweat in the creases of his neck; his chest heaved up and down grotesquely with the pumping of the respirator that was feeding him oxygen through a huge plastic tube forced down his throat. His greenish-blue feet poked out from under the bedspread, as if separate from the rest of his body. For the first time in all of his illnesses, his dignity had been completely removed from him. He was an instrument of the instruments keeping him alive.
The week before, celebrating his 31st birthday in his hometown on the Gulf Coast of Florida, we swam together in the dark, warm waters that he had already decided would one day contain his ashes. It was clear that he knew something was about to happen. One afternoon on the beach, he got up to take a walk with his newly acquired beagle and glanced back at me a second before he left. All I can say is that, somehow, the glance conveyed a complete sense of finality, the subtlest but clearest sign that it was, as far as he was concerned, over. Within the space of three days, a massive fungal infection overtook his lungs, and at midnight on the fourth day his vital signs began to plummet.
I was in the hall outside the intensive-care room when a sudden rush of people moved backward out of it. Pat's brother motioned to me and others to run, and we sped toward him. Pat's heart had stopped beating, and after one attempt was made to restart it, we intuitively acquiesced, surrounded him and prayed: his mother and father and three brothers, his boyfriend, ex-boyfriend and a handful of close friends. When the priest arrived, each of us received communion.
I remember that I slumped back against the wall at the moment of his dying, reaching out for all the consolation I had been used to reaching for -- the knowledge that the final agony was yet to come, the memory of pain that had been overcome in the past -- but since it was happening now, and now had never felt so unavoidable, no relief was possible. Perhaps this is why so many of us find it hard to accept that this ordeal as a whole may be over. Because it means that we may now be required to relent from our clenching against the future and remember -- and give meaning to -- the past.
II. MOST OFFICIAL STATEMENTS ABOUT AIDS -- the statements by responsible scientists, by advocate organizations, by doctors -- do not, of course, concede that this plague is over. And, in one sense, obviously, it is not. Someone today will be infected with H.I.V. The vast majority of H.I.V.-positive people in the world, and a significant minority in America, will not have access to the expensive and effective new drug treatments now available. And many Americans -- especially blacks and Latinos -- will still die. Nothing I am saying here is meant to deny that fact, or to mitigate its awfulness. But it is also true -- and in a way that most people in the middle of this plague privately recognize -- that something profound has occurred these last few months. The power of the newest drugs, called protease inhibitors, and the even greater power of those now in the pipeline, is such that a diagnosis of H.I.V. infection is not just different in degree today than, say, five years ago. It is different in kind. It no longer signifies death. It merely signifies illness.
The reality finally sank in for me at a meeting in Manhattan this summer of the Treatment Action Group, an AIDS advocacy organization. TAG lives and breathes skepticism; a few of its members had lambasted me only nine months before for so much as voicing optimism about the plague. But as soon as I arrived at the meeting -- held to discuss the data presented at the just-completed AIDS conference in Vancouver, British Columbia -- I could sense something had changed. Even at 8 P.M., there was a big crowd -- much larger, one of the organizers told me, than at the regular meetings. In the middle sat Dr. David Ho, a pioneering AIDS researcher, and Dr. Martin Markowitz, who presided over recent clinical trials of the new treatments. The meeting began with Ho and Markowitz revisiting the data. They detailed how, in some trials of patients taking the new protease inhibitors used in combination with AZT and another drug called 3TC, the amount of virus in the bloodstream was reduced on average a hundred- to a thousandfold. To put it another way: Most people with H.I.V. can have anywhere between 5,000 and a few million viral particles per milliliter of their blood. After being treated for a few weeks with the new drugs, and being subjected to the most sensitive tests available, many patients had undetectable levels of the virus in their bloodstreams. That is, no virus could be found. And, so far, the results were holding up.
When Ho finished speaking, the questions followed like firecrackers. How long did it take for the virus to clear from the bloodstream? Was it possible that the virus might still be hiding in the brain or the testes? What could be done for the people who weren't responding to the new drugs? Was there resistance to the new therapy? Could a new, even more lethal viral strain be leaking into the population? The answers that came from Ho and Markowitz were just as insistent. No, this was not a ''cure.'' But the disappearance of the virus from the bloodstream went beyond the expectations of even the most optimistic of researchers. There was likely to be some effect on the virus, although less profound, in the brain or testes, and new drugs were able to reach those areas better. The good news was that H.I.V. seemed primarily to infect cells that have a short half-life, which means that if the virus is suppressed completely for two years or so, the body might have time to regenerate tissue that was ''aviremic.'' And since the impact of the drugs was so powerful, it was hard for resistance to develop because resistance is what happens when the virus mutates in the presence of the drugs -- and there was no virus detectable in the presence of the drugs.
The crowd palpably adjusted itself, and a few chairs squeaked. These are the hard-core skeptics, I remember thinking to myself, and even they can't disguise what is going through their minds. There were caveats, of course. The latest drugs were very new, and large studies had yet to be done. There was already clinical evidence that a small minority of patients, especially those in late-stage disease, were not responding as well to the new drugs and were experiencing a ''breakout'' of the virus after a few weeks or months. Although some people's immune systems seemed to improve, others' seemed damaged for good. The long-term toxicity of the drugs themselves -- their impact on the liver, for example -- could mean that patients might undergo a miraculous recovery at the start, only to die from the effects of treatment in later life. And the drugs were often debilitating. I tested positive in 1993, and I have been on combination therapy ever since. When I added the protease inhibitors in March, the nausea, diarrhea and constant fatigue had, at first, been overwhelming.
Still, after the meeting, a slightly heady feeling wafted unmistakably over the crowd. As we spilled out into the street, a few groups headed off for a late dinner, others to take their protease drugs quickly on empty stomachs, others still to bed. It was after 10, and I found myself wandering aimlessly into a bar, where late-evening men in suits gazed up at muscle-boy videos, their tired faces and occasional cruising glances a weirdly comforting return to normalcy. But as I checked my notebook at the door, and returned to the bar to order a drink, something a longtime AIDS advocate said to me earlier that day began to reverberate in my mind. He had been talking about the sense of purpose and destiny he had once felt upon learning he was positive. ''It must be hard to find out you're positive now,'' he had said darkly. ''It's like you really missed the party.''
III. SECOND, THE RESISTANCE TO MEMORY.
At 6 o'clock in the morning in the Roseland Ballroom in Manhattan on a Sunday last spring the crowds were still thick. I had arrived four hours earlier, after a failed attempt to sleep. A chaotic throng of men crammed the downstairs lobby, trying to check coats. There were no lines as such, merely a subterranean, almost stationary mosh-pit, stiflingly hot, full of lean, muscular bodies glacially drifting toward the coat-check windows. This was, for some, the high point of the year's gay male social calendar. It's called the Black Party, one of a number of theme parties held year-round by a large, informal group of affluent, mainly white, gay men and several thousand admirers. It's part of what's been dubbed the ''circuit,'' a series of vast dance parties held in various cities across the country and now a central feature of an emergent post-AIDS gay ''life style.''
When people feared that the ebbing of AIDS would lead to a new burst of promiscuity, to a return to the 1970's in some joyous celebration of old times, they were, it turns out, only half-right. Although some bathhouses have revived, their centrality to gay life has all but disappeared. What has replaced sex is the idea of sex; what has replaced promiscuity is the idea of promiscuity, masked, in the increasing numbers of circuit parties around the country, by the ecstatic drug-enhanced high of dance music. These are not mass celebrations at the dawn of a new era; they are raves built upon the need for amnesia.
Almost nothing has been written in the mainstream media about these parties, except when they have jutted their way into controversy. A new circuit party, called Cherry Jubilee in Washington, incurred the wrath of Representative Robert Dornan because drugs had been used in a Federal building leased for the event. The annual Morning Party in August on Fire Island, held to raise money for Gay Men's Health Crisis in New York, was criticized on similar grounds by many homosexuals themselves. But in general, these parties have grown in number with a remarkable secrecy, reminiscent of the old, closeted era when completely bifurcated gay lives were the norm. But their explosion on the scene -- there are now at least two a month, involving tens of thousands of gay men in cities as diverse as Pittsburgh and Atlanta -- is interesting for more than their insight into party culture.
The events are made possible by a variety of chemicals: steroids, which began as therapy for men wasting from AIDS and recently spawned yet another growing sub-subculture of huge body builders; and psychotherapeutic designer drugs, primarily Ecstasy, which creates feelings of euphoria and emotional bonding, and ketamine, an animal anesthetic that disconnects the conscious thought process from the sensory body. On the surface the parties could be taken for a mass of men in superb shape merely enjoying an opportunity to let off steam. But underneath, masked by the drugs, there is an air of strain, of sexual danger translated into sexual objectification, the unspoken withering of the human body transformed into a reassuring inflation of muscular body mass.
As the morning stretched on, my friends and I stood in the recess of a bar as the parade of bodies passed relentlessly by. Beyond, a sea of men danced the early morning through, strobe lights occasionally glinting off the assorted deltoids, traps, lats and other muscles gay men have come to fetishize. At the party's peak -- around 5 A.M. -- there must have been about 6,000 men in the room, some parading on a distant stage, others locked in a cluster of rotating pecs, embracing one another in a drug-induced emotional high.
For a group of men who have witnessed a scale of loss historically visited only upon war generations, it was a curious spectacle. For some, I'm sure, the drugs helped release emotions they could hardly address alone or sober; for others, perhaps, the ritual was a way of defying their own infections, their sense of fragility or their guilt at survival. For others still, including myself, it was a puzzle of impulses. The need to find some solidarity among the loss, to assert some crazed physicality against the threat of sickness, to release some of the toxins built up over a decade of constant anxiety. Beyond everything, the desire to banish the memories that will not be banished; to shuck off -- if only till the morning -- the maturity that plague had brutally imposed.
IV.
I TALK ABOUT THIS AS A quintessentially homosexual experience, not because AIDS is a quintessentially homosexual experience. Across the world, it has affected far, far more heterosexuals than homosexuals; in America, it has killed half as many intravenous drug users as gay men. And its impact has probably been as profound on many heterosexual family members and friends as it has been on the gay men at ground zero of the epidemic. But at the same time, AIDS was and is inextricable from the question of homosexuality in the psyche of America because it struck homosexuals first and from then on became unalterably woven into the deeper and older question of homosexual integration.In so many ways it was a bizarre turn of events. In the past, plagues were often marked by their lack of discrimination, by the way in which they laid low vast swaths of the population with little regard for station or wealth or sex or religion. But AIDS was different from the beginning. It immediately presented a political as much as a public-health problem. Before homosexuals had even been acknowledged as a central presence in American life, they were suddenly at the heart of a health crisis as profound as any in modern American history. It was always possible, of course, that, with such a lack of societal preparation, America might have responded the way many Latin American and Asian countries responded -- with almost complete silence and denial -- or that the gay world itself might have collapsed under the strain of its own immolation. But over the long run something somewhat different happened. AIDS and its onslaught imposed a form of social integration that may never have taken place otherwise. Forced to choose between complete abandonment of the gay subculture and an awkward first encounter, America, for the most part, chose the latter. A small step, perhaps, but an enormous catalyst in the renegotiation of the gay-straight social contract.
And an enormous shift in our understanding of homosexuality itself. Too much has been made of the analogy between AIDS and the Jewish Holocaust, and they are, indeed, deeply distinct phenomena. One was an act of calculated human evil, designed to obliterate an entire people from the center of Europe. The other is a natural calamity, singling out a group of despised outsiders by virtue of a freak of nature, and a disease that remained asymptomatic long enough to wipe out thousands before anyone knew what was happening. But in so far as each catastrophe changed forever the way a minority group was viewed by the world, the two have eerie parallels.
The hostility to homosexuals, after all, has far more in common with anti-Semitism than it does with racism. Homosexuals, like Jews, are not, in the psychology of group hatred, despised because they are deemed to be weak or inferior, but precisely because they are neither. Jews and homosexuals appear in the hater's mind as small, cliquish and very powerful groups, antipathetic to majority values, harboring secret contempt for the rest of society and sustaining a ghetto code of furtiveness and disguise. Even the details resonate. The old libel against Jews -- that they would drink the blood of Christian children -- has an echo today in the bigot's insistence that he has nothing against homosexuals per se, but doesn't want them allowed near his kids. The loathing for each group is closely linked to fear -- and the fear is fanned, in many ways, by the distortion of a particular strain in Christian theology.
But that fear was abated, in both cases, by extraordinary contingent historic events. The Holocaust did many things to the structure of anti-Semitism, but in one hideous swoop it helped destroy the myth that Jews were somehow all powerful. The mounds of bodies, the piles of artifacts and the grotesque physical torture that the Jews of Europe suffered did not exactly indicate power. Out of that powerlessness, of course, came a new form of power, in the shape of achieved Zionism. But the idea of Jewish victimhood seared by mass murder into the Western consciousness was seared indelibly -- and it remains one of the strongest weapons against the canards of anti-Semitism today.
Similarly, if on a far smaller scale, AIDS has dramatically altered the psychological structure of homophobia. By visiting death upon so many, so young, AIDS ripped apart the notion of subterranean inviolability that forms such a potent part of the fear of homosexuals. As tens of thousands of sons and uncles and brothers and fathers wasted away in the heart of America, the idea that homosexuals maintained a covert power melted into a surprised form of shock and empathy. For some, the old hatreds endured, of course, but for others an unsought and subtle transformation began to take shape. What had once been a strong fear of homosexual difference, disguising a mostly silent awareness of homosexual humanity, became the opposite. The humanity slowly trumped the difference. Death, it turned out, was a powerfully universalizing experience. Suddenly, acquiescence in gay-baiting and gay-bashing became, even in its strongholds, inappropriate at a moment of tragedy. The victimization of gay men by a disease paradoxically undercut their victimization by a culture. There was no longer a need to kick them, when they were already down.
I think this helps explain the change in the American psyche these last 10 years from one of fearful stigmatization of homosexuals to one of awkward acceptance. And it's revealing that the same thing did not really happen to the many other victims of the plague. With inner-city blacks and Latinos, with intravenous drug users, there was no similar cultural transformation, no acceleration of social change. And that was because with these groups, there had never been a myth of power. They had always been, in the majority psyche, a series of unknowable victims. AIDS merely perpetuated what was already understood and, in some ways, intensified it. With gay men, in contrast, a social revolution had been initiated. Once invisible, they were now unavoidable; once powerful subversives, they were now dying sons.
AIDS, then, was an integrator. If the virus separated, death united. But there was a twist to this tale. As the straight world found itself at a moment of awkward reconciliation, the gay world discovered something else entirely. At a time when the integration of homosexuals into heterosexual life had never been so necessary or so profound, the experience of AIDS as a homosexual experience created bonds and loyalties and solidarities that homosexuals had never experienced before. As it forced gay men out into the world, it also intensified the bonds among them; as it accelerated an integration, it forged an even deeper separation. The old question of assimilation versus separatism became strangely moot. Now, both were happening at once -- and feeding off the same psychological roots.
I REMEMBER THE FIRST TIME I USED THE WORD ''WE'' IN PRINT IN reference to gay men. It was in an article I was writing as I witnessed my first AIDS death -- of a stranger I had volunteered to help out in his final months. He was 32 years old when I got to know him, back in 1990. Without AIDS, we would never have met, and the experience changed my sense of gay identity for good. Before then, although I had carefully denied it, I had quietly distanced myself from much of what I thought of as ''gay culture.'' Tom helped to change this.
He was the stereotype in so many ways -- the 70's mustache, the Alcoholics Anonymous theology, the Miss America Pageant fan, the college swim coach. But he was also dying. His skin was clammy and pale. His apartment smelled of Maxwell House coffee and disinfectant and the gray liquid that was his constant diarrhea. I remember one day lying down on top of him to restrain him as his brittle, burning body shook uncontrollably with the convulsions of fever. I had never done such a thing to a grown man before, and as I did, the defenses I had put up between us, the categories that until then had helped me make sense of my life and his, these defenses began to crumble into something more like solidarity.
For others, the shift was more dramatic. Their own incipient deaths unleashed the unfiltered rage of the late 1980's, as decades of euphemism and self-loathing exploded into one dark, memorable flash of activism. The fire behind Act-Up was by its very nature so combustible that it soon burned out. But its articulation of a common identity -- the unsustainable starkness of its definition of homosexuality -- left a residue behind.
And I began to understand the pull of this identity more instinctively. Suddenly, it seemed, as my 20's merged into my 30's, everyone was infected. Faces you had got used to seeing in the gym kept turning up on the obit pages. New friends took you aside to tell you they had just tested positive. Old flames suddenly were absent from the bars. I remember thinking that a new term was needed for something that was happening to me with increasing frequency: I would be walking along a street and see an old man coming toward me whom I vaguely recognized. And then I would realize that it wasn't an old man; it was someone I knew who had just gone through some bout with pneumonia or some intestinal parasite. Like Scott, a soldier I had got to know as a 220-pound, 6-foot-3-inch, blue-eyed, blond-haired bundle of energy. During the gays-in-the-military affair early in the Clinton Administration, I had urged him to come out to his commanders and troops, sure that the new President would protect him. He told me I had to be out of my mind, and, of course, as it turned out, I was. And then, a few weeks later, he bumped into me on the street and confided the real reason he didn't want to confront anyone. He was H.I.V.-positive and needed the Army's support. He told me with genuine anguish, as if the knowledge of his disease demanded a courage his disease would also have punished.
Then, a mere year later, I saw him with a cane (literally), his spirit completely broken, his body shrunk to 140 pounds, his breath gone after the shortest walk, his eyes welling with the bitterness of physical pain and isolation. His lover of several years somehow endured the ordeal, nursing him every inch of the way, until Scott became a 90-pound skeletal wreck, unable to walk, his hair weak and gray and glassy, his eyes sunken miserably into a scaly face. Scott never fully reconciled with his family. And after Scott died, his lover told me that his last words had been, ''Tell my mother I hate her.''
When I would tell my straight friends, or my work colleagues or my family, about these things, it wasn't that they didn't sympathize. They tried hard enough. It was just that they sensed that the experience was slowly and profoundly alienating me from them. And they sensed that it was more than just a cultural difference. The awareness of the deaths of one's peers and the sadness evoked and the pain you are forced to witness -- not just the physical pain, but all the psychological fear and shame that AIDS unleashed -- all this was slowly building a kind of solidarity that eventually eliminated my straight friends from the most meaningful part of my life. There comes a point at which the experience goes so deep that it becomes almost futile to communicate it. And as you communicate less and less and experience more and more, you find yourself gravitating to the people who have undergone the same experiences, the ones who know instinctively, the people to whom you do not have to explain.I remember the moment when my friend Patrick told me he had AIDS. We had been friends for a long time, yet the meaning of that friendship had never been fully clear to us. But at that moment we were able to look each other in the eye and tell each other we would be there for each other, whatever it took and however hard it became. I don't think I had ever made such a commitment before -- to anyone. It survived watching him waste away, seeing him buckled over on the floor, thumping the ground from the pain of his infections; it survived him messing himself in panic as he fumbled with his IV; it survived his bloody-minded resistance to risky treatments that might have helped him; it survived the horrifying last hours in the intensive-care unit and the awkward silences with his family a year after he passed away. It survives still, as does the need to find a way to give it meaning in his absence.
For a long time I never broke down or cried about any of this -- the dozens of acquaintances who have died, the handful of friends I have mourned or resisted mourning, the sudden flashes of panic at the thought of my own mortality. But late one night I caught sight of Senator Bob Kerrey on ''Nightline.'' He was speaking haltingly of his relationship with Lewis Puller, the paralyzed Vietnam veteran who had survived the war, only to ultimately succumb to depression, alcoholism and, finally, suicide. There was in Kerrey's bitter, poignant farewell a sense that only he and a few others would fully understand Puller's anguish. Kerrey grasped, because he had experienced, what it was to face extreme danger and witness in the most graphic way possible the deaths of his closest friends and colleagues, only to come home and find those experiences denied or ignored or simply not understood. And as he spoke, I felt something break inside me. Kerrey knew, as Mark Helprin expressed so beautifully in his novel ''A Soldier of the Great War,'' what almost every gay man, in a subtler, quieter way, has also learned: ''The war was still in him, and it would be in him for a long time to come, for soldiers who have been blooded are soldiers forever. They never fit in. . . . That they cannot forget, that they do not forget, that they will never allow themselves to heal completely, is their way of expressing their love for friends who have perished. And they will not change because they have become what they have become to keep the fallen alive.''
At the time of this writing, almost three times as many young Americans have died of AIDS as died in the entire Vietnam War.
V. IN CAMUS'S NOVEL ''THE PLAGUE,'' THE DESCRIPTION OF HOW PLAGUES end is particularly masterful. We expect a catharsis, but we find merely a transition; we long for euphoria, but we discover only relief tinged with, in some cases, regret and depression. For some, there is a zeal that comes with the awareness of unsought liberation, and the need to turn such arbitrary freedom into meaningful creation. For many more, there is even -- with good reason -- a resistance to the good news itself because ''the terrible months they had lived through had taught them prudence.'' The reactions to the news, Camus notes, are ''diverse to the point of incoherence.'' Many refuse to believe that there is any hope at all, burned by dashed expectations one time too many, ''imbued with a skepticism so thorough that it was now a second nature.'' Others found the possibility of an end too nerve-racking to bear and almost dared the plague to kill them before it was too late.
And even now, among friends, there are those who refuse to be tested for a virus that, thanks to the new treatments, might be eliminated from the bloodstream. And there are those who are H.I.V.-positive who are still waiting to take the drugs and are somehow unable to relinquish the notion that being positive is a death sentence that they can endure only alone. And there are those many who, having taken all the drugs they can, have found that for some reason the drugs will not work for them and watch as their friends recover while they still sink into the morass of sickness made all the more bitter by the good news around them. And those more who, sensing an abatement of the pressure, have returned, almost manically, to unsafe sexual behavior, as if terrified by the thought that they might actually survive, that the plague might end and with it the solidarity that made it endurable.
You can already feel, beneath the surface, the fraying of the bonds. A friend in New York, H.I.V.-positive for 10 years, contemplates breaking up with his boyfriend because he suddenly realizes he is going to live. ''I felt safe where I was,'' he tells me. ''But now I feel like an attractive person again. It's more what you're radiating inside -- the feeling that, finally, you're not a potential burden. I mean, maybe I'm not a potential burden.'' Another positive friend, this one an AIDS advocate of hardened credentials, feels the meaning of his life slipping away. ''At some point, you just have to go on,'' he says. ''You say that was a great period in your life, but it's a big world and at some point you have to find a way to slip back into it and try and be a happy citizen. What I want is a boyfriend I love, a job that doesn't make me crazy and good friends.''
But normalcy, of course, is problematic for gay America. The ''normalcy'' of gay life before AIDS is something few can contemplate and fewer remember. There are ways (the circuit parties) in which that history is repeated as farce, and ways (like the small revival of sex clubs) in which it is repeated as tragedy. But the solidarity of the plague years is becoming harder and harder to sustain. For the first time, serious resentment is brewing among H.I.V.-positive men about the way in which AIDS has slowly retreated from the forefront of gay politics. And among the longest-term survivors, there is a depressing sense that a whole new generation of post-AIDS gay men have no understanding of the profundity with which their own lives have become suffused.
Take John Dugdale, a 36-year-old photographer living in New York, tall and chiseled, with dark hair and even darker eyes. (His self-portraits accompany this essay.) But when Dugdale looks at you these days, he merely looks toward you. Some time ago, he became almost blind from an AIDS-related virus. He took the new drugs, experienced euphoria as they obliterated the virus from his blood, crashed again a few months later as the virus returned, then experienced yet another high as his health improved once more. He knows his own survival is tenuous and is depressed by the shallowness of a culture that is clearly beginning to move on. As we chatted recently, he recalled with not a little edge a particular moment at the Black Party in New York earlier this year. It concerned a friend of his with AIDS, a body builder who still prized himself on being able to consort with the best of the competition. There was one problem: he had lesions on his body, lesions he refused to have treated. And when he took his shirt off that night to dance with the throng, the lesions were all too visible. Not so long ago, they might have been viewed as war medals. Now, they're something different. ''This guy came up to him,'' Dugdale recalled, ''and said: 'Would you please put your shirt on? You're ruining it for everybody else.' ''For some, of course, the ebbing of AIDS could mean that the old divisions between H.I.V.-positive and H.I.V.-negative men could heal. With a less catastrophic diagnosis, the difference in life span -- and self-definition -- between negative and positive men might narrow. But there is also another possibility: that with a smaller and smaller percentage of gay men having H.I.V., the isolation of those infected will actually increase, and that those with full-blown AIDS could feel more intensely alone than before.
Even at the showing of the AIDS Memorial Quilt in Washington this year, the divides were subtly present. There were those who went to see the quilt itself or went to the candlelight vigil and those who went only to the many parties that filled the weekend. (In truth, many went to all.) And the internal tensions were palpable. It is as if many H.I.V.-positive men have emerged from transformingly deep spiritual experiences only to re-enter a culture that seems, at least in part, to be returning to the superficial. And the lifting of the veil of terror has served, paradoxically, only to isolate them still further in a subculture that has less time and less energy to sympathize or understand. The good news from the laboratory has robbed them not simply of the drama and intensity of their existence but also of the recognition of that drama and intensity. And even among their own kind.
VI. A DIFFERENCE BETWEEN THE END OF AIDS AND THE END OF MANY other plagues: for the first time in history, a large proportion of the survivors will not simply be those who escaped infection, or were immune to the virus, but those who contracted the illness, contemplated their own deaths and still survived. If for some, this leads to bitterness, for others it suggests something else entirely. It is not so much survivor guilt as survivor responsibility. It is the view of the world that comes from having confronted and defeated the most terrifying prospect imaginable and having survived. It is a view of the world that has encompassed the darkest possibilities for homosexual -- and heterosexual -- existence and now envisions the opposite: the chance that such categories could be set aside, that the humanity of each could inform the humanity of the other.
Greg Scott is a Washingtonian I've known for years. We're both in our early 30's, and as the plague has unfolded over the last decade it has affected us in different ways. Greg is from a traditional Southern family, and when he was thrown out of the Navy for being a homosexual, he threw himself into years of furious activism. When I first came to know him, he was renowned in D.C. for hanging around bars and staring wildly at passers-by as a prelude to either lecturing or seducing them. For a short period of time, he would follow me around D.C. screaming ''Collaborator!'' to punish me for the sin of writing or voicing politically incorrect views. But we both knew, at some level, that we were in the epidemic together, and so when I saw him slowly declining over the last two years, I felt a part of myself declining as well. My friend Pat once described Greg as ''hanging by the same length of rope'' as he was, so for some time I half-expected to see Greg's face in the crowded obituary columns of the local gay paper along with the dozens of other faces I had known or seen over the years. When I wrote an op-ed piece a year ago hailing the latest breakthroughs in AIDS research, Greg came up to me in a bar and regaled me. ''This is not a survivable disease!'' he yelled over the music. ''What do you know about it, anyway?''
So I learned to avoid Greg as far as I could. I never relished our meetings. Since he didn't know I was positive, too, our conversations had this false air about them. The solidarity I felt was one I could not fully express, and it ate away at me. I occasionally spotted him walking his dog in the neighborhood, his body, always thin, now skeletal, his large, staring eyes disfigured by lesions, his gait that of a 60-year-old. When my parents visited, I pointed him out from a distance on the street, in some doomed attempt to help them understand: ''See. That's my friend Greg.'' Read: ''See. That's my friend Greg. Do you see what this is doing to us?'' Last fall, Greg was taking morphine twice a day. He was on a regimen of 60 pills a day and was virtually bedridden. So when I caught sight of him five months ago, I literally jumped.
I had grown used to the shock of seeing someone I knew suddenly age 20 or 30 years in a few months; now I had to adjust to the reverse. People I had seen hobbling along, their cheekbones poking out of their skin, their eyes deadened and looking down, were suddenly restored into some strange spectacle of health, gazing around as amazed as I was to see them alive. Or you'd see them in the gym, skin infections still lingering, but their muscles slowly growing back, their skull-faces beginning to put on some newly acquired flesh. This is what Greg now looked like, his round blue eyes almost tiny in his wide, pudgy face, his frame larger than I remembered it: bulky, lumbering, heavy.
In one of those bizarre coincidences, I bumped into him the day I quit my job as editor of The New Republic. He was one of the first people I was able to tell, and from the minute I spoke to him, I could tell he was changed. The anger was somehow gone; a calm had replaced it. He seemed to understand intuitively why I might want to take time to rethink my life. As we parted, we hugged awkwardly. This was a new kind of solidarity -- not one of painful necessity, but of something far more elusive. Hope, perhaps? Or merely the shared memory of hopelessness?
Since then, I've become used to Greg's describing the contours of what he calls his ''second life.'' And he describes its emergence in a way that is shared by more people than just him. The successive physical and material losses of his illness stripped him, he recalls, of everything he once had, and allowed him, in a way that's unique to the terminally ill, to rebuild himself from scratch. ''There were times I was willing to accept that it was over,'' he says. ''But things were never fully tied up. There were too many things I had done wrong, things I wanted to amend, things I still wanted to do. I was hanging on tenaciously out of some moral judgment of myself because I knew I hadn't got it right the first time.''
In his progressive illness, Greg had lost first his energy, then his ability to digest food, then his job, then his best friend and then most of his possessions, as he sold them off to pay for medications. But he hung on. ''In the early days,'' he remembers, ''I couldn't imagine going through all that to stay alive. My friend Dennis would say that I'd never go that far. But then he died. Looking back, it's absurd the lengths I went to. I'd never realized I cared so much about myself.'' (Greg's story brings to mind that of another friend: his illness finally threatened his sight, and he had to decide whether to pursue a treatment that involved an injection of a liquid directly into the eyeball. In other words, he had to watch as the needle came closer and closer and finally penetrated his eye. I remember asking him how on earth he could go through with it. ''But I want to see,'' he told me.)
''When you're in bed all day, you're forced to consider what really matters to you,'' Greg elaborates. ''When the most important thing you do in a day is your bowel movement, you learn to value every single source of energy. You go into yourself and you feel different from other people, permanently different.'' Some gains are subtle. ''It sparked a new relationship with my grandmother. Like me, she was suddenly finding she couldn't drive her car anymore, so we bonded in a way we'd never bonded before. You suddenly see how people are valuable. I mean, if you're healthy, who has time for this old lady? And suddenly this old lady and I have so much in common. And I still have that. That's a gain. I have an appreciation and love for her that I never fully had before.'' Some gains are even more profound. ''My grandfather would say, 'You don't squeak under the bottom wire unless you're meant to.' And I feel that there's this enormous responsibility on me that I've never felt before. And it's a pleasant responsibility. I mean, lay it on me.''
Responsibility is, perhaps, an unusual word for Greg to be using, and until AIDS it was not one usually associated with homosexuality. Before AIDS, gay life -- rightly or wrongly -- was identified with freedom from responsibility, rather than with its opposite. Gay liberation was most commonly understood as liberation from the constraints of traditional norms, almost a dispensation that permitted homosexuals the absence of responsibility in return for an acquiescence in second-class citizenship. This was the Faustian bargain of the pre-AIDS closet: straights gave homosexuals a certain amount of freedom; in return, homosexuals gave away their self-respect. But with AIDS, responsibility became a central, imposing feature of gay life. Without it, lovers would die alone or without proper care. Without it, friends would contract a fatal disease because of lack of education. Without it, nothing would be done to stem the epidemic's wrath. In some ways, even the seemingly irresponsible outrages of Act-Up were the ultimate act of responsibility. They came from a conviction that someone had to lead, to connect the ghetto to the center of the country, because it was only by such a connection that the ghetto could be saved.And in the experience of plague, what Greg felt on a personal level was repeated thousands of times. People who thought they didn't care for one another found that they could. Relationships that had no social support were found to be as strong as any heterosexual marriage. Men who had long since got used to throwing their own lives away were confronted with the possibility that they actually did care about themselves and wanted to survive and failed to see themselves as somehow inferior to their heterosexual peers. A culture that had been based in some measure on desire became a culture rooted in strength. Of course, not everyone experienced such epiphanies. Some cracked; others died bitter or alone. Many failed to confront the families and workplaces and churches in ways that would have helped provide the capacity to survive. But many others did. And what didn't destroy them made them only more resistant to condescension.
And as gay culture shifted in this way, so did gay politics. The radicalism of Act-Up segued into the radicalism of homosexuals in the military and same-sex marriage. From chipping away at the edges of heterosexual acceptance, suddenly the central ramparts were breached. Once gay men had experienced beyond any doubt the fiber of real responsibility -- the responsibility for life and death, for themselves and others -- more and more found it impossible to acquiesce in second-class lives. They demanded full recognition of their service to their country, and equal treatment under the law for the relationships they had cherished and sustained in the teeth of such terror. AIDS wasn't the only thing that created this transformation of gay demands, but it was surely linked to them at a deep psychological level.
Plagues and wars do this to people. They force them to ask more fundamental questions of who they are and what they want. Out of the First World War came women's equality. Out of the second came the welfare state. Out of the Holocaust came the state of Israel. Out of cathartic necessity and loss and endurance comes, at least for a while, a desire to turn these things into something constructive, to appease the trauma by some tangible residue that can give meaning and dignity to what has happened. Hovering behind the politics of homosexuality in the midst of AIDS and after AIDS is the question of what will actually be purchased from the horror. What exactly, after all, did a third of a million Americans die for? If not their fundamental equality, then what?
VII. LAST, THE THINGS I WANT TO remember. In the past six months, I have begun to believe I will live a normal life. By normal, of course, I don't mean without complications. I take 23 pills a day -- large cold pills I keep in the refrigerator, pills that, until very recently, made me sick and tired in the late afternoon. But normal in the sense that mortality, or at least the insistence of mortality, doesn't hold my face to the wall every day. I mean I live with the expectation that life is not immediately fragile; that if I push it, it will not break.It is a strange feeling this, and a little hard to communicate. When you have spent several years girding yourself for the possibility of death, it is not so easy to gird yourself instead for the possibility of life. What you expect to greet with the euphoria of victory comes instead like the slow withdrawal of an excuse. And you resist it. The intensity with which you had learned to approach each day turns into a banality, a banality that refuses to understand or even appreciate the experience you have just gone through.
Of course, I remember feeling this banality before and I remember the day it ended. I remember the doctor offering me a couple of pieces of candy, before we walked back into his office and he fumbled a way of telling me I was H.I.V.-positive. I've thought about that moment a lot in the past few months. When my doctor called recently to tell me that my viral load was now undetectable, part of me wanted to feel as if that first moment of mortality had been erased. But, of course, that moment can never be erased. And not simply because I cannot dare hope that one day the virus might be wiped completely from my system, but because some experiences can never be erased. Blurred, perhaps, and distanced, but never gone for good. And, in fact, beneath the sudden exhilaration, part of me also wants to keep the moment alive, since it allowed me to see things that I had never been able to see before.
I saw, to begin with, that I was still ashamed. Even then -- even in me, someone who had thought and worked and struggled to banish the stigma and the guilt and the fear of my homosexuality -- I instinctively interpreted this illness as something that I deserved. Its arrival obliterated all the carefully constructed confidence in my own self-worth. It showed me in a flash how so much of that achievement had been illusory -- how, in a pinch, I still loathed and feared an inextricable part of who I was.
The diagnosis was so easily analogized to my sexuality not simply because of how I got it but also because it was so confoundingly elusive. I felt no sickness. I had no symptoms. There was nothing tangible against which I could fight -- no perceptible, physical ailment that medicine could treat. So it seemed less like an illness than like some amorphous, if devastating, condition of life. Suddenly, it existed as my homosexuality had always existed, as something no one from the outside could glean, something I alone could know and something that always promised a future calamity.
For days after my diagnosis, I went through periodic, involuntary shaking spasms. My head literally sank onto my chest; I found it hard to look up or see where I was going. The fear of death and sense of failure -- and the knowledge that there was nothing I could do to escape this awareness -- kept me staring at the sidewalk. At night, asleep, exhaustion gave way to anxiety as panic woke me up. And then, one morning, a couple of weeks later, after walking with a friend to get some coffee and muffins for breakfast, I realized in the first few sips of coffee that for a few short seconds of physical pleasure, I had actually forgotten what had just happened to me. I realized then that it was going to be possible to forget, that the human mind could find a way to absorb the knowledge that we are going to die and yet continue to live as if we are not. I experienced in some awful, concentrated fashion what I used to take for granted.
From then on, I suppose, I began the journey back. I realized that my diagnosis was no different in kind than the diagnosis every mortal being lives with -- only different in degree. By larger and larger measures, I began to see the condition not as something constricting, but as something liberating -- liberating because it forced me to confront more profoundly than ever before whether or not my sexuality was something shameful (I became convinced that it was not), and liberating because an awareness of the inevitability of death is always the surest way to an awareness of the tangibility of life.
And unlike so many others who are told they are going to die, and so many people who had been told they were H.I.V.-positive before me, I had time and health and life ahead. In one way, as I still lost friend after friend, and as others lived with griefs that would never be expunged, I experienced this with a certain amount of guilt. But also, as someone graced by the awareness of a fatal disease but not of its fatality, a heightened sense of the possibilities of living. I realized I could do what I wanted to do, write what I wanted to write, be with the people I wanted to be with. So I wrote a book with a calm I had never felt before about a truth I had only belatedly come to believe. The date I inscribed in its preface was two years to the day since my diagnosis: a first weapon against the virus and a homage to its powers of persuasion.
And for a precious short time, like so many other positive people, I also sensed that the key to living was not a concentration on fighting the mechanics of the disease (although that was essential) or fighting the mechanics of life (although that is inevitable), but an indifference to both of their imponderables. In order to survive mentally, I had to find a place within myself where plague couldn't get me, where success or failure in such a battle were of equal consequence. This was not an easy task. It required resisting the emotional satisfaction of being cured and the emotional closure of death itself. But in that, of course, it resembled merely what we all go through every day. Living, I discovered for the second, but really the first, time, is not about resolution; it is about the place where plague can't get you.
Only once or twice did I find that place, but now I live in the knowledge of its existence.
So will an entire generation.
Photographs by John Dugdale
posted by Michael Joseph Owens at 10:48 AM
