Crisis Of Desire: Aids And The Fate Of Gay Brotherhood
240
Crisis Of Desire: Aids And The Fate Of Gay Brotherhood
240Paperback(First edition)
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Overview
Thousands of gay men have died from AIDS, representing not only a loss of life but also a commensurate loss to gay men’s hearts and minds. With fiery passion, The Crisis of Desire depicts the struggle to rescue sexuality in the face of this devastating epidemic. Combining social commentary with personal narrative, Robin Hardy calls on gay men to reclaim their erotic expressiveness and accept the "mortal risk of loving."
Product Details
| ISBN-13: | 9780816639113 |
|---|---|
| Publisher: | University of Minnesota Press |
| Publication date: | 04/08/2002 |
| Edition description: | First edition |
| Pages: | 240 |
| Product dimensions: | 5.50(w) x 8.25(h) x 0.70(d) |
About the Author
Read an Excerpt
Chapter One
The Enemy of Love
AIDS AND ITS MYTHS
HIV TICKS, A SILENT time bomb in my veins.
My blood and semen are poison to my species. My body has been commandeered by a lethal alien, the genetic crumbs of creation, possessed of the improbable power to forge a molecular lock on certain cells of the human immune system. It is programmed with only the most basic imperative of existence: propagate; replicate; reproduce.
The genes of the human immunodeficiency virus have engineered a takeover of the factory that is my body. The virus is retooling me to its own use -- making copies and reassembling itself. These stray bits of DNA become me, are me, and I am HIV, as much literally in the genetic codes of my cells as in the figurative way that HIV will define me for the rest of my life. The work of the virus is to kill me, just as it has killed over three hundred thousand gay men like me in North America, along with several million heterosexuals throughout the world.
Since 1981, when AIDS first loomed over us, we have not cured AIDS or saved those lives -- not because we do not know how, but because we lack the social will. Instead, we have been captive to a series of exquisitely pervasive illusions that keep us from caring too deeply or committing ourselves too absolutely to the defeat of the virus. We believe that behavioral changes alone will control the epidemic. We conclude we are helpless and ignorant in the face of a diabolical virus that outwits our greatest brains, our most advanced technologies. We makeAIDS an affliction of the Other, those gay or poor or drug-using people who are not us and are thus somehow not as human as we are, who are thus objects of sympathy, sentiment, and separation. When we hear news of drugs that seem to be working on HIV, we fold AIDS away like the memory of Vietnam -- even as the Centers for Disease Control and Prevention announce that 31,153 new cases of AIDS were reported in America in 1997. We wear red ribbons at the Emmys. We decline to face death; we skirt sexuality, make sex the enemy. Like almost every other human society, ours mistakes the forces of culture and history for the mandates of nature. We deny that, in certain ways, the existence of AIDS works for us.
AIDS today is business, charity, cautionary tale, old news -- certainly no longer a crisis. From social support to drug development to viatical settlements for life insurance, an industry has sprung from the suffering of victims. Scientists and doctors stake careers on their research. Government largesse endows millions to laboratories. Philanthropists and moguls bestow their names on sex-education and HIV-research institutes. From the efficient official business of AIDS arises the marginalization of people afflicted or traumatized by the disease -- and the denial of the essence of gay men themselves. Because of our systems of denial, a singular and important generation of gay American men has been allowed to die.
Only the virus endures, no longer a crisis, but lingering like Muzak in the background at ghetto parades, in communities narcotized with red ribbons, busy with sentimental notions and symbolic observations that conceal the evidence of the continuing slaughter we rush to leave behind. They sing: AIDS is over. Gay men lost.
So powerful are the many myths surrounding HIV that, if it had not burst from the rain forest to do its deadly work, you wonder if, like God, our culture would not have had to invent it. Critics have already noted that AIDS, as British activist Simon Watney wrote in his book Practices of Freedom, "is invariably made to carry a supplement of fantasy which both precedes and exceeds any actual medical issues ... ideological manoeuvres which unconsciously 'make sense' of this accidental triangulation of disease, sexuality and homophobia."
In the most elemental recesses of human consciousness, the human immunodeficiency virus represents an intrusion of chaos, the boundaries of an orderly world breached by something mysterious and unknown. To protect ourselves from that void, we create stories. Myth is the autopilot of consciousness; we plunder cultural myths for refuge, sort through symbols, stereotypes, parables, and contradictions, until we assemble a narrative that somehow makes sense to us and keeps our fears at bay.
Unfortunately, the possibilities that myths provide are limited. They give simple if potent answers for complicated and problematic phenomena. Myths are not about what is. They are about what people want.
For some, HIV is damnation from a god of many rules, the god that informs you that if you like your body too much and celebrate its sexual pleasures, or somehow don't love yourself enough, you will be punished with a disease that will kill you. Others believe that the CIA field-tested a terrific new biological warfare agent in the ventilation systems of gay bathhouses in New York, exposing a disposable population to a germ it could use to kill enemies. (It's not that far-fetched a theory: the U.S. Army Special Operations Division admits its operatives tossed supposedly harmless gas-filled bulbs onto the tracks of the Manhattan A train, as a test. More than thirty years after the experiment, the identity of that gas is still classified information.) An astonishing proportion of people of color are persuaded that the government has used HIV the way it is claimed it used crack, to keep a minority population in place -- and isn't it politically convenient that HIV has a predilection for young black and Latino men and women?
And for yet other people, AIDS is a solution for whatever else has been troubling their lives. Like the prospect of hanging, it can focus their attentions on living in a way that their uninfected routines could not. HIV can make a man swear off anything the world tells him is a vice, from drinking to sexuality. It can also allow him license to drown his fate in drugs or practice infective sex. It can corroborate the inner hatred the outer world bequeaths him. HIV can excuse him from facing the issues of growing old and remaining committed to the world. Especially for gay men, from whom AIDS stole the ones who would have shown them how to age, there is the James Dean-Marilyn Monroe model, the god and goddess of eternal youth and beauty, who live fast and die young. Death will finally solve the problem or end the appetite.
These myths about the cause and meaning of AIDS, together with a dozen more propounded by those who suffer from HIV and those who witness that suffering, are understandable, human, and pernicious. The myths exist for all of us. For a few who can keep a clear head at least some of the time, AIDS remains only a tiny bundle of proteins, an entity caught between existence and the abyss, unleashed among humans by demographic movements, its spread precisely mapped by the principles of epidemiology.
Certain passages in literature written in the 1970s seem to prophesy the coming plague, as if the trauma rippled back through time. In his novel Cities of the Red Night, William Burroughs portrays his eponyms with images of the Castro or Christopher Street at their most hedonistic, and the imagined civilization is destroyed when "a virus crept through the barriers of time," causing people to orgasm to death. Burroughs wrote that novel, published the same month as the first reported case of "gay cancer" in 1981, while HIV was spreading, silent and unknown, among gay men.
In all his work, Burroughs's vision of the orgasm has always been partly curse and partly a means of transcendence. But a virus that creeps through the barriers of time is a perfect metaphor for the potency of our cultural myths. They seep into us without our knowing it. They gain even greater power in times of duress -- as when a generation is in the process of throwing aside a system of sexual control whose thick roots germinated in a nomadic tribe in the Sinai four millennia ago.
In AIDS, the ancient myth of the homosexual as criminal, and the twentieth-century psychiatric myth of the homosexual as mentally ill, were reinvigorated by a new bond between the homosexual and a deadly, contagious plague. With their implications of quarantine, confinement, behavior modification, recidivism, and containment -- not to mention the biters, spitters, monsters, and homicidal dentists in our midst who are accused of spreading the virus wantonly -- the myths of homosexual illness and homosexual criminality were instantly entwined like strands of RNA. This time, the connection that spawned the myths was not merely prejudicial, metaphysical, or even theoretical. It was scientifically verifiable. It was very, very real.
I have never been particularly enthralled by illness's myths and metaphors, I think because I grew up the second of five children, among whom two brothers, one older, one younger, were born with cystic fibrosis. It is an incurable illness of the exocrine glands, genetically inherited. The organs fill with mucus, preventing digestion, causing malnutrition. The lungs become the perfect breeding culture for common bacteria, harmless to most of us, but killers for people with CF.
The sources of my older brother Christopher's anger were many -- at least as much the doctors' pessimism as the unfair genetic hand he'd been dealt. I think his fury was unwillingly but inevitably directed at me from the moment I was born. I arrived close by his second birthday, a baby plump, pink, and healthy. Somewhere deep within his sickly body, he already knew that someday I would win the ultimate contest of our sibling rivalry by decree of nature: I would outlive him.
We were also intimately brothers, though, our boys' lives the sum of our mutual growing up. From toddler to teenager, the time when a couple of years make a big difference in the sum of life's experiences and a child's command of his environment, my older brother led me into the world beyond the nuclear family, brazenly, as only a child can. He was my earliest teacher and mentor. Each night, in beds in the same room, as sleep came down we spoke our deepest confidences to each other, while beyond the window a northern prairie twilight seeped away to our comic-book dreams of superheroes and space travel.
Life expectancy for people with CF is still only about twenty-two Years. When Chris was diagnosed, it was a children's disease, and he was expected to die before adolescence. In 1984, at his thirty-fourth birthday, he was one of the few surviving CF adults in the world. We celebrated, and after dinner went to a movie. We arrived late at the theater, and I began to rush across the parking lot. He called out to me and asked me to slow down. He had always been a vehemently independent man, shouldering past his own maladies, and never before had he asked for a concession to his illness. He'd had a chest infection since earlier in the year, and this time he couldn't shake it, even after two bouts of antibiotic drips in the hospital. I fell into step beside him. He coughed, and horked into a Kleenex, took it away from his mouth, glanced at it, then showed it to me. In the little glistening glob of mucus was a tiny dark red speck.
"Blood?" I asked, already disturbed and perplexed.
He shook his head. "Tissue."
I took a second look at the Kleenex before I understood what Christopher meant. Not paper tissue -- human tissue. He was coughing up bits of his disintegrating lungs.
Chris's death a few months later marked the beginning of the time when AIDS became a visceral part of my life. Although neither of us had the slightest clue that moment in the parking lot observing a speck of lung, Chris has led the way once more across an invisible frontier.
Well before Christopher took his last breaths, gay men in North America had stumbled into the war zone that is AIDS. With the death of Rock Hudson in 1985, the rest of America got into the act, the fact of celebrity making the devastation as real as television. Americans would begin to observe AIDS the way residents of Washington, D.C., had packed their picnics and boarded their carriages to see the first Civil War battle, the first battle of Bull Run, in 1861; they would sit on the ridge, out of the line of fire, spectators stirred into sentiment. For gay men, the reality of AIDS means surviving in the trenches. It remains immediate, unpredictable, and cruel. AIDS began as if with a shot from a sniper, when someone we knew well got really sick. It continues now with the inhaled breath, held, as we wait for the sound of gunfire.
After Chris's death, in rapid succession my friends began to die from AIDS: Don Bell, an old roommate, mysteriously ill and out of sight; several months later, Steven Flint, a boyfriend from years earlier. AIDS roamed at the periphery of my life, tightening slowly around a circle of friends, who began to disappear like houseguests in a murder mystery. Timo. Arty. Cliff. Tim. Jay. Ron.
Unlike my brother, my friends and I had always been healthy and able. Unlike most of my friends, I had understood terminal illness to be part of my life from my earliest memory. Chris's experience became my own guide. I saw diagnosed friends go through everything from credit-card binges to religious conversions and New Age panaceas. I recalled similar fatalistic, reckless days -- innumerable auto collisions -- when Chris was nineteen and twenty years old: while his high school friends went on to college or marriage, he presumed a life expectancy of twenty-one years. My friends were living that way as they sickened, their futures truncated, their trust in time stolen.
I began to feel in irrational moments that Christopher's death sentence had passed mysteriously to me. In sleep, I began to dream I was driving at night, terrified, in a car with no headlights, Christopher riding silently in the seat beside me; I was unable to see the road ahead yet moving inexorably forward, crossed fingers as my only guide; I spoke loudly in a crowded room, where people milled about oblivious to my words, as if I had already ceased to exist; I was in the basement rec room of my family's home, and it was filled with disembodied dicks, like the dildos stacked in bins at Frederick's of Hollywood, and my mother was at the door! Not my real mother, of course, but Kali, mother, avenger, destroyer, who holds the freshly severed heads of her babies in each of her eight extended hands.
That was my own, personal, potent myth, and it seemed true. The physical body I possessed now proposed death to me. Semen, traditionally sacred in human cultures, was apparently toxic. I felt as if I had regressed, that I had lost the hard-won confidence of my gay male body. Sex began to seem bad again, as it had been before closets were abandoned. Desire disappeared, the deepest instincts of an animal turning from danger.
New York, once a city that glittered and beckoned like a factory of dreams, had become Gothic, accursed, a Titanic sinking down to darkness in icy black waters. It was the epicenter of a postmodern epidemic, and it was the place I had gone in the wake of my brother's death to reinvest myself as a vital gay man. I felt threatened in this oppressed and oppressive city. Christopher Street, the grand boulevard of the Stonewall generation, had become for us a Burma Road. Returning to the ardently gay places I had stridden through, I found the sidewalks and bars empty except for drug addicts, hustlers, and muggers, and a few alcoholic, stunned survivors, their desires devolved into primal reflex and longing.
One night, in the autumn of 1985, after an evening of worried talk with friends who are all now dead, I sat on a bench in the park at Abingdon Square in Greenwich Village, the city pulsating around me with sexuality and panic. For a few brief seconds I stood on the edge of that terror, and realized, irrevocably, that there was no going back. For the shallowest part of a millisecond, I thought I sensed a virus pouring through my veins like lights flashing in sequence around the edge of a marquee. Whether I liked it or not, I -- and almost everyone I knew -- were all embarking on a great and terrible adventure from which, regrettably, there was to be no return. In the newest frontier of the landscape of death, I was bound to my brother by fate as well as birth.
When Chris was twenty-seven -- and, much to his own surprise, still alive -- his closest friend, a vital, healthy man, was killed in a motorcycle accident. The fact of this man's death devastated Chris, and not just because his demise was sudden and violent. Christopher's hierarchy of expectations had been instantly shattered. Everyone else was supposed to survive to old age except him. A few years later, when all the experts told me that HIV infection automatically meant death, I recalled this example of the Reaper's caprice. I had colluded in my brother's logic; for I too had thought that I would be exempt from having to take a number and get in line to be sent to oblivion.
Yet there are limits to what cystic fibrosis could tell me about the new terrain I had crossed into. Here there were far more mythical beasts and perverse magnetic forces at work. AIDS is not a congenital disease striking children in the bloom of their innocence. It fails to induce the kind of pity granted to those who are martyred by, for instance, their genes. AIDS is sex, race, gender, class, and our shadow; it is apocalypse, a whirlwind of terror of chaos and homosexuality, righteousness and disease, pleasure and pain. It stirs fears and incites conspiracy theories; it threatens contagion; it makes us hurry to separate ourselves, to keep it as far away as an extended arm with its pointed finger.
The narratives drawn from our common myths that shaped the perceptions and progress of the epidemic may twist the individual course of HIV disease as well. And certainly, tragically, infuriatingly, those myths are responsible for the first decisions around AIDS that our society made. Among them was the resolution to write off the lives of all those already infected with HIV. Whether the CIA released it or whether the rain forest did it on its own, here was an opportunity for the opponents of homosexual emancipation to rid America of a particularly troublesome generation of gay men.
For the first four years of the epidemic, official inaction was official American policy. Ronald Reagan did not even utter the word AIDS until 1987. Such malign neglect was "an adaptation of Adolf Hitler's 'Final Solution,'" claims Robert Searles Walker, a noted medical writer on AIDS, in his book AIDS Today, Tomorrow. He adds with great understatement that "it was and remains a tragic departure from standard American policy in such matters." The enemies of gay men had found their extraconstitutional policeman, and it was in our blood.
The government disdained the study of infected cells. It prioritized vaccines and safer sex to protect the innocent, which is to say the as-yet uninfected. Our culture's shaman class -- scientists, doctors, and researchers -- reinforced these efforts through what, in another context, author Andrew Weil calls "medical hexing," by creating a pervasive atmosphere of pessimism. Within months of the first reports in 1981 of "gay cancer," leading scientists publicly declared that everyone affected would die. Translated into press boilerplates, the word doomed or fatal appeared in virtually every news report. Repeated often enough, this conjecture became accepted truth, although scientific data have always contradicted it. AIDS is a killer disease. It has not ever been under control. But as scientists are just now getting around to emphasizing, all sorts of people survive HIV infection asymptomatically for decades; others resist infection totally or never become virulent. The evidence for these phenomena has been whispered about for years among people with HIV, but it contradicted the prevalent myth that AIDS had to mean death. For more than a decade, the most pervasive opportunistic infection of AIDS, and one engendered by the power of the medical establishment, was despair.
Medical knowledge that might have saved thousands of lives sat on the shelves of medical libraries, unused; gay men with pneumocystis carinii pneumonia (PCP) were shunted into placebo wings of trials where men and women in white lab coats watched them slowly suffocate. Each time a new discovery or breakthrough is announced, scientists enact a ritual, hurrying to assure the public with words that are an incantation for the fulfillment of prophecy: "It will be years before this translates into treatment." Or, once the drug gets into bodies, "We don't know how long the treatment will be efficacious." Emphasizing to a person that his house may blow away tomorrow does not encourage him to inhabit his house today.
The 1993 AIDS conference in Berlin was so dispiriting -- not just in terms of medical progress but in terms of tone -- that the press dubbed it "AIDS's bleakest moment." In the months afterward, the death rate from AIDS in San Francisco doubled, from around two hundred to four hundred a month. In New South Wales, Australia, the rate of opportunistic infections among PWAs skyrocketed. Although it cannot be measured by steel instruments and recorded on a chart, these extra dead people appear to have just given up.
Only the power of myth could so wholly overwhelm the fruits of scientific method. Positing that once infected there was no escape, the prophecies of medical shamans became the process of wish fulfillment, effectively denying the single constant of survival: hope.
There exists in the Western world a kind of apartheid around AIDS.
The "general population," people who by definition are excluded from known "risk groups" for HIV, live in a country apart from AIDS, far across a Gazan desert on the other side of wire fences. The seropositive see them roaming, their eyes half closed, glazed by the stupor of a too-pure sun.
It is not unusual for a nation to have a population of young men about to die or already dead: sending ignorant armies to fight and kill is patriotic sport, socially endorsed and highly honored. Most wars have cheerleaders. The ones who fight and die in them may be sacrificed on the altar of human stupidity, but in life and death they are embraced, included, and mourned. Even with Vietnam, America came around to embrace its veterans and its dead. Pandemics, too, have long been matters that touched everyone. Until AIDS, infectious microbes were universally dangerous. From the black plague of the 1300s to the influenza epidemic of 1918 to polio in the 1950s, germs and viruses were egalitarian killers and cripplers; even when they arose in slums or slipped in from foreign countries, and even when they were assigned their own problematic meanings, they induced a democratic panic.
But AIDS is different. HIV is as specific as ZIP-code target marketing. The estrangement of the HIV-positive mirrors the disharmony in their bodies. They live in a parallel universe, coexisting with, but largely invisible to, what the world insists on calling by the most unkind and exclusionary name in the entire AIDS lexicon: the "general population."
Soldiers returning to America from the horrors of Vietnam found an oddly incongruous country where life went on as usual, with the killing fields of the Tet Offensive suddenly replaced by surfboards, drive-ins, and psychedelia. The trauma they had undergone was life-gouging. But when they came home at least they were ultimately safe from their enemies. People with HIV carry the enemy in their blood, but they live among people who tend to regard them as less useful than cannon fodder.
In their partitioned-off territory, the seropositive have played for time and read the signposts of their future in wasting bodies -- the corpses of friends stacked like firewood -- and in their own uncertain reactions to drugs that may suppress the virus for years or months or not at all. Swallowing their protease inhibitors, they continue to live under sentence of death, hopeful that their penalty may be commuted to life, but still half-expecting the axe of a slow-motion executioner. Among them the mentality of fear and scarcity has become ubiquitous, and the prospect of a future teases them. It is life in wartime, and they have become an occupied population. They have gotten so used to the siege that they barely acknowledge it anymore, enduring as they do the daily, yearly, scrounge for survival.
Which is not to say that the sunny country of noninfection hasn't also been dimmed by AIDS. The media may not give its inhabitants many consistent reports from the territory of the HIV-positive, for if nothing new has happened -- if only another 109 new cases of AIDS are diagnosed today, if no new drug has caused its maker's stock price to soar -- then no news has happened. Occasionally the press will relay to them a story of a gay man with AIDS, especially if he is somehow exceptional or affects their livelihood in some way. Often the media will observe how the deaths of gay men touch the general population. The New York Times ran a long homeliving piece on what to do when the interior decorator dies halfway through the job. Society women bemoan the loss of their favorite hairdresser. The 1990s, we were told, would become the "decade of the woman designer" (because many gay men were redlined by garment-industry investors, or dead); we all hear of the new lesbian visibility in the queer movement (not only because lesbians are competent and confident but because an entire generation of gay male leadership is dead). We see movies and television shows about gay men with AIDS, but almost without exception the presumption by producers and programmers is that human sympathy thrives only close to home. And thus the camera will focus on Aidan Quinn's parents; Richard Thomas's lover's mother; Tom Hanks's heterosexual lawyer; Ryan White's mother; young, straight Alison Gertz and her family. Gay men, indeed everyone with HIV in his or her bloodstream, gets shunted to the side in the popular communication of their own tragedy.
In the film Philadelphia's family scenes, heterosexual kinfolk were consumed by squalling babies and small children, a profusion of life occurring while the sun poured through suburban windows. The movie's gay men lived in cinematic shadows as well as the shadow of death. This contrast is the invention of moviemakers heroizing heterosexual concern for AIDS victims in the family. But for people living with AIDS in their lives or their bodies, those constant shadows have their own truth that has nothing to do with Hollywood. For a survivor, the strangest thing when someone dies with AIDS is that the rest of the world goes on in all its picayune detail. He is thrust into a weird solipsism while everyone else plunges forward like a relentless subway train, full of appetency. Social scientists have invented a name -- Multiple Bereavement Syndrome, or MBS -- to describe the disordered psychologies of gay men who have watched dozens of friends and lovers die, their grief compounded by the world's hearty heedlessness.
With the demise of AIDS activism in the early 1990s, the natural allies of the infected -- seronegative gay men -- fell victim to this relentless deprivation of hope. Their despair has often since been translated into sexual negativism, self-preservation at the expense of empathy for their infected gay brothers, increased sexual risk, and the most banal forms of sentimentality, as when a prominent New York jeweler began selling platinum red ribbons set with garnets -- permitting a link between the gesture's monetary value and an individual's measure of ostentatious, useless concern.
At a time when the gay community embraced the issue of the right of homosexuals to serve in the military, with a palpable sense of relief at moving the political agenda away from disease and onto patriotic territory, the position of gay men with HIV in the gay communities became ironically analogous to the myth of the spurned and shunned veteran. In a decade after the Stonewall riots, gay men had rather successfully begun the task of redefining civil sexuality and the bonds all humans might be free to create. Now, ignoring the profound, revolutionary accomplishments of the post-Stonewall generation, a new array of activists lobbies and litigates for the right to marry. One of their main arguments claims that marriage would tame gay men, make them settle down, and thus reduce the spread of AIDS. That contention is not geared to the gay community; it is put forth as a crowd pleaser for heterosexual media and legislators fearful of AIDS and ignorant about how it works. Such rhetoric effectively, wrongly, and cruelly disenfranchises, desexualizes, and demonizes every single gay man with AIDS.
With this kind of dismissal in the body of the gay community and from a general population afraid of AIDS and bored by it, how could gay men with HIV feel anything but despair and estrangement? Certain drugs may diminish the level of virus in our bodies, but there remains no end to our exile.
"Bongo is dead. Ter Braak. DuPerron, Marsman, all are dead. Pos, and van den Bergh and many others are in concentration camps ..." Although concentration camp is used instead of hospital, the words sound chillingly familiar. They were written in the diary of a Dutch Jewess named Etty Hillesum, who was killed at Auschwitz on November 30, 1943. Her diaries were published under the title An Interrupted Life and describe Amsterdam under the Nazi occupation. "So many of our most promising, vigorous young men are dying day and night. I don't know how to take it."
In this terrifying era of lost friends, Etty Hillesum, together with my brother Chris, has become a constant companion. I recognized her immediately, not as an alter ego, but as someone who would certainly have been a friend. She wrote about her lovers, and sex was a way for her to express an almost overwhelming love for existence. "I have broken my body like bread and shared it out among men. And why not, they were hungry and had gone without for so long," she wrote in one of her last letters. And yet her dream is a familiar, intimate one: "A man for life, and build something together with ..."
As many people have found they must in the AIDS crisis, Etty Hillesum was forced to "look suffering directly in the face" without fear. While she affirmed, "I want to live to see the future," she was also under no illusions when she speculated about the enemy's intentions: "Of course, it is our complete destruction they want!" And like many gay men who dealt with AIDS, Etty Hillesum wrestled with an essential question: To what degree acceptance? to what degree protest?
In the age of AIDS, gay men are well aware of the old myths about homosexuality and how they operated to maintain a certain moral status quo. Their adult lives as openly gay men had been lived on the other side of a chasm that separates their daily reality from narratives of homosexuality subscribed to by that chimera, the "general population," in its many semantic guises. When "gay cancer" officially became "Gay Related Immune Deficiency" -- that first, wildly inaccurate term that the medical establishment applied to the set of symptoms it beheld -- such labels seemed suspiciously like new versions of the sick homosexual; when stigma resulted in persecution, once again the homosexual was rendered criminal.
To meet this new and deadly adversary, and to circumvent the inane social response to it, gay men came together to employ the same tactics they had acquired in a decade of building gay communities, adding another layer of institutions to focus on health care: Gay Men's Health Crisis, AIDS Project Los Angeles, Project Angel Food, and hundreds of others. When no treatments were forthcoming, gay men pored through the pharmaceutical armamentariums of foreign countries and alternative healing systems. They set up smuggling networks to expand the availability of treatments, bringing in hopeful drugs like Compound Q in from Asia. They began buyers' clubs in defiance of federal regulation. They challenged the hegemony of scientists and doctors over research priorities and medical decisions. Man by man, they turned into experts, juggling drug acronyms with ease, jumping ahead of their doctors' knowledge. If gay men were forced to be patients, they were determined not to abdicate control over their physical bodies. This is a central tenet of AIDS activism. It is a profound gift given by people with AIDS to all people with illness -- the notion that they have a right to be masters of their own health care.
A deeply held principle of the baby-boom generation was at work: that the personal is political. Reduced by feminists into its most succinct and popular form was the belief that our bodies belong to ourselves. No other idea has been so powerful in the last half of the twentieth century. It began with the civil rights movement, when African Americans refused to be controlled because of the color of their skin, and it underlay the resistance of young men to fighting an immoral war in Vietnam. It encouraged a generation to use "mind-expanding" psychotropic drugs and indulge in free love. As feminists insisted on a woman's right to control her reproductive decision-making, gay liberationists extended the concept of personal autonomy to sexual decision-making, and they began to question the entire multimillennial edifice of desire, pleasure, and the body.
Rooting political action in the experience of the body determined the course of AIDS activism. Suddenly, health and wellness decision-making became political. Finally, when dying men began to commit suicide in the most covert and barren of circumstances, the principle of autonomy over the body was extended to its last frontier: the right to self-termination, or euthanasia.
At the beginning of the crisis, gay men insisted on safer-sex advocacy to redefine sexual practices in an epidemic. They would work hard to take command of the epidemic, even as they struggled with insufficient knowledge about what sexual safety should entail, as well as fierce opposition from a sex-phobic government. Moreover, gay men with AIDS quickly realized that control over the myth-infused language of their altered identity was crucial. They declined the rubric of "victim" in favor of "person living with AIDS" -- the invention of the PWA. Coming out as a PWA, like coming out as homosexual, challenged yet another manifestation of the pariah. The AIDS crisis made twelve years of post-Stonewall liberation seem like a dress rehearsal for the main event.
Control over one's body was part of a social contract that emerged after World War II. The other side of the equation was a greater individual moral duty: to act to stop evil. "Following orders" no longer vindicated someone who had committed crimes against humanity, a principle established at Nuremberg, and reinforced for the baby-boom generation by the Eichmann trial in 1961. Evil was all the more terrifying for its banality: Hannah Arendt gave us a vision of the good family man as the scion of darkness -- the bureaucrat, Homo institutus, calmly stamping requisitions for bars of soap made from human fat, and for electrical conductors insulated with Jewish hair.
In the face of the utter disregard of the "general population" for their plight, many gay men were astonished and disappointed. A lot of privileged white men were shocked to realize they were cheap meat. They had expected the great American daddy to assist them in combating a virus that did evil things. But here the postwar social contract failed and the Western world denied its moral duty. While certain scientists, doctors, politicians, and mothers might care enough to act, they were subsumed by a larger establishment that just didn't care very much. It was never possible for our culture to extend an arm of help to the drowning man. No matter what people with AIDS did to try to crush the virus among them, the myths around AIDS would prevail. The result would mean that gay men took their place in the tale as the perpetrator homosexual, the criminal, the diseased pariah, and -- standing in for a generation's conflict about the body -- a scapegoat.
In October 1984, I drove to an Ottawa hospital to see my brother during one of his routine stays. Indian summer was over, the Rideau River was shrouded in an icy fog, the gaunt black branches of trees glistened in the streetlights, leaf-naked and wet. When I saw the backlit blue sign with its big white H glowing in the twilight, I felt, almost as if the air had slapped me, a thud of trepidation that increased when I turned into the long landscaped drive, and the modern hospital loomed across an empty lake of parking spaces. It hit me all at once, the realness, the sadness, the horror of Chris's situation: that he was here in the hospital on the edge of town. At my brother's bedside, I took one look at him and knew instantly that this was it. He was going to die, and soon.
Dying is not operatic passion; it's utterly mundane. The dying are concerned about picky, little things that have become monumentally important: a glass of water in a certain spot on the bedside table; keeping all but the closest friends at bay. I tried to talk to Chris about dying, but it was the one thing he could not do. He was not always one to communicate. His doctors, like the ones who'd predicted his death in childhood, now told us he would be an invalid for eight months to a year before his lungs gave out completely. It was suggested that the family explore options for round-the-clock home care.
That arrangement never interested Chris. After he made his goodbyes, he died within a week, slipping through an open door in dreams, peacefully, in sleep, at sunrise.
To have cystic fibrosis, a person must inherit two recessive genes, one from each parent. The genes can be passed down in families for generations before they come together in one marriage among twenty; the result of those copulations is a brood in which two out of four children are carriers, each with one copy of the gene, and where one is sick and one completely "normal."
The recessive gene is found mainly among Caucasians and has mutated twice: forty thousand years ago in the Pyrenees; and twenty thousand years ago in Persia or the Balkans. From both directions, the mutation spread into northern Europe. Evolutionary scientists were baffled that such a disadvantageous gene had not been filtered from the pool long ago. Only recently have they realized that the two children who each inherit one gene have a kind of "half CF": the slight changes in the digestive tract confer a certain immunity to cholera, epidemics of which have swept across Europe in waves throughout historic times. CF carriers survived in greater numbers. They carried the gene forward.
What my family had always viewed as a curse actually distributed an evolutionary advantage through kinship lines, and this was Christopher's heritage: he was a chromosomal scapegoat for the larger tribe. Nature sacrifices a life here and there along an ancestral chain in order to strengthen the bodies of many others.
People like to find redemption in this rebuke to human individuality. Redemption, after all, is the fruit of Christian faith, and in that tradition the scapegoat is wedded to the image of the Crucifixion, when the Nazarene took on the sins of the world, that the faithful might be saved for an otherworldly life: the Redeeming Victim.
This has also suited the mythic AIDS narrative: a scapegoat to expiate everyone's sexual adventures -- not only in the old days before HIV, but including all the unsafe and promiscuous moments among people today. Those infected with HIV would pay pleasure's price for everyone. They would tell cautionary tales. That general population could relieve itself by dumping every guilty desire on the sickbeds of dying homosexuals.
AIDS is the source of so much suffering that it has no silver lining, despite the protestations of New Age bunnies that "AIDS is the best thing that ever happened to me!" If there is redemption in living with HIV, it is only in determining that something good can be constructed in the midst of great evil, and it can only be personal.
In an earlier tradition, the scapegoat was not the sacrifice. It was the goat that escaped into the desert -- scourged and derided perhaps, abandoned by the people unto a devil named Azazel. But nevertheless alive, and free.
Il s'agit bien d'un virus qui se colle aux gens par l'acte sexuel. A virus passes among men through sex. These words were written in 1976 by Alex Barbier, a French painter, in a book called Lyca"n, a graphic novel for which Barbier created both the illustrations and the text. Lycaon was a king of Arcadia in pre-Hellenic times. He and his fifty-two sons were turned into wild beasts when they refused to worship Zeus and instead served him human flesh at a banquet. In Ovid's Metamorphoses, the story is linked to Deucalion, the Moses of the Greek version of the Flood, which was caused by Zeus as punishment for King Lycaon's iniquity. (The myth retells, in symbolic terms, the story of the arrival of northern invaders with a patriarchal religion who replaced the earlier matrifocal civilizations of the eastern Mediterranean. The story of Lycaon and his sons is the origin of the modern wolf-man myth.)
Barbier transplants this ancient Greek tale to a modern world of brilliantly sunlit beaches and moonlight streaming into crumbling hotel rooms, where the narrator and his lover flee across empty landscapes, always pursued by a strange malevolence known only as a disembodied voice emitted from paper-towel dispensers in sterile, white-tiled public restrooms.
To Barbier, the virus is a metaphor for transformation: men infected with it metamorphose into Lycaons, feral wolf-dogs who tear to bloody pieces those who are merely human. In human form, the Lycaons recognize each other, infiltrate everywhere; their status is criminal. They are pursued by enemies to their ultimate deaths.
Barbier transformed the myth of Lycaon by a shift in perspective. He presented the story from the losers' point of view. The fugitive protagonists find a brief respite from their pursuit on a sun-blind beach by a blue ocean. The narrator says, "I never felt so cool. But it didn't really change my point of view." In the doomed couple's portrait is the union of renegade and outsider, homosexual and criminal, homosexual and disease, homosexual and desire -- finding an apotheosis not in the summation of the content of a life, but in the substance of a single moment.
Later in the story the flood comes, water rising in the street of an abandoned city while the protagonists make love in a fleabag hotel room, awaiting death while other Lycaons stand guard, like Anubis, in the street below. Barbier suggests that life must also be lived with the affirmation of erotic love, no matter the consequence, without regard for who in the next instant will capture you and carry you away. But this story of the Lycaons is haunted too by a quality of doom similar to William Burroughs's: the duality of sex and death -- postcoital tristesse, the sadness after ecstasy, la petite mort. Barbier wrote:
You cannot mistake ... the special sun that shines on this country we know well and find everywhere.... It is the landscape of death.... This landscape is so rich with life that nothing can stop it, it exists everywhere, goes through every face. It means: we are going to die.
This affirmation in the face of the inevitable might be the same for all of us -- not that someday we will all be dead, which is obvious, but that the prospect of death gives meaning to life. One can succumb to death anytime and anyplace. By implication, choosing to live is a harder decision. It is especially difficult when death not just lingers but looms, when it is not just a persistent specter but a relentless and isolating reality, ready to pounce when some life-reviving drug gives way, as someday -- sooner, later -- all drugs will.
Here is a myth we can use. Barbier's rewriting of an ancient tale also calls us to construct new narratives from the old ones -- not simply to accept what was chosen for others thousands of years ago. Although death may be the end result of many, even most, HIV infections, death is the fact of everyone's life. The difference is in the minutes, days, and years that stretch between now and that moment; the raw stuff of affirmation is time.
"I want to be sent to every one of the camps that lie scattered all over Europe, I want to be at every front, I don't ever want to be what they call 'safe,'" wrote Etty Hillesum, who refused the urging of friends to go into hiding. "I want to understand what is happening and share my knowledge with as many as I can possibly reach."
Etty Hillesum went to Westerbork, the camp from which Dutch Jews were transported east. "Let me be the thinking heart of these barracks," she wrote from there in a letter to a friend in Amsterdam. "That is what I want to be ... the thinking heart of a whole concentration camp."
There is a sharp distinction between what J. G. Gaarlante in the introduction to Hillesum's diaries calls her "radical altruism" and the kind of Pollyanna pleasantries expressed by such contemporary, unconsidered pabulum as the encouragement to "make friends with your disease." Finding reasons to be reassured by the abject suffering of large numbers of people is acquiescence to prepackaged sentimentality. Etty Hillesum knew what gay men learned so profoundly at Hard Knocks High. After a night spent watching a long line of cattle cars crammed with deportees bound east to death camps, she saw Allied aircraft bomb a nearby town and wrote, completely rhetorically, "So why shouldn't it be possible for the railway line to be hit too, and for the train to be stopped from leaving?"
Mortal crisis shocks some people from the placid life, the routines and co-optations of their surroundings. At least, after various detours through anger or self-pity, it offers a chance for some renewal, however brief. The transformations around HIV that I have witnessed were amazing but never surprising to me. Friends moved through the stages of AIDS, one by one falling below borderline T-cell counts that delineated the possibilities for various "clinical events": the beginning of antiviral therapy, the first opportunistic illness, the start of wasting, the last flickers of eyesight. In each and every stage until the last, they adamantly claimed that the syndrome stopped there, that the latest strategy would stop progression. Shortly they adapted completely to whatever new reality presented itself: quivering limbs, a rotting brain, or a leopard's tithe of purple spots. In every stage they hugged life like a lover.
When the doctors opened up my brother's corpse for the autopsy they found that his pancreas was destroyed, as were most of his liver and kidneys, and the greater part of his lungs. His heart had grown to twice its normal size to pump sufficient oxygen to the distal regions of his body. The doctors were astonished. Given how little functioned, they wondered not that Chris had died, but at how long he had been alive.
From that first step in the parking lot when Chris coughed up a piece of his lung, I found myself deep in foreign territory that everyone must someday travel. The cataracts that I possessed, as many young and lively people do, were plucked away, the opaque walls that protect us, most of the time, from the very real proximity of individual extinction.
Although I live with it daily, I have never believed that I must die of AIDS. I believe only that I have been told so. The most difficult thing for people living with HIV to convey to the uninfected is that we feel our futures to be open-ended, not foreclosed -- no more so than anyone else's. AIDS cannot be redemption: it's too big, too awful, the way it mocks us and sucks our blood. There are no silver linings, only the choices we make in how to shape our lives to each vital new circumstance. Redemption happens every day when our eyes open to the morning sun.
We who are living with HIV are rendered naked on the way to a destination all of us walk to. The landscape of death is the territory of all lives. In that terrain, life is full of murmuring and changing, with the babble of voice, color, size, and shape, the profusion and division of DNA, the body's molecules quivering in a warm zone at 98.6, and shot with electricity. Life is always lived with the threat of imminent death: the Reaper is at our shoulder, the tip of his scythe hovering barely in our peripheral vision.
Some days we also catch a glimpse of the extent of our sorrow, of host friends and swallowed time, like being surprised by our own dark reflection in a plate glass window. Almost always we jump back, avert our eyes, knowing as we do the feeling we suppress: all the rivers in the world flooding our heart until it bursts, water welling from the corners of our eyes in a rain of tears. We stop, because we are merely human, and because otherwise we would weep forever.
From my birth I lived with chronic illness among my brothers. Now, as a gay man, I live with chronic illness once more -- among my brothers. I share that illness. But what ails us is not just the virus that wends through our veins, insinuating itself in gland, node, lobe. What can kill us when AIDS infects us, what suffocates us when we deny the truth of AIDS around us, is what happens when we fail to embrace our lives in death and the death in life. That malady devastates us all. It is the enemy of love.
Table of Contents
| Introduction: "Words Where There Was Silence" | ix | |
| 1. | The Enemy of Love: AIDS and Its Myths | 1 |
| 2. | The Crisis of Desire: Loss and Promise | 26 |
| 3. | Hope Inhibited: Medicine, Power, and the Reclaimed Body | 49 |
| 4. | Disposal: A Death and Life in Amsterdam | 89 |
| 5. | Sex at Risk: The Body and Its Dangers | 105 |
| 6. | Surviving Memory: Toward an Ethos of Desire | 133 |
| 7. | Beyond the Culture of Love: The Fate of Gay Brotherhood | 169 |
| Acknowledgments | 193 | |
| Index | 195 |