HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright 1995 by William I. Johnston
New York: Insight Books-Plenum Press


Witnessing the Epidemic

TESTIMONY IS CRUCIAL for survivors of any disaster. Amid the earthquake detritus and hollowed-out shells of buildings at the battlefront, men and women emerge compelled to bear witness to horror and atrocity. The recounting of these stories is part of an age-old cycle which eases contemporary tragedy into the realm of history and integrates what once appeared unimaginable into the individual and collective psyche.

The narrators of HIV-Negative have much to teach about surviving and witnessing the current mass disaster we call AIDS. As the epidemic widens and deepens, those who remain standing at Ground Zero face daunting challenges. Why are we still living when so many of our peers have died? Are we survivors or merely the last among our crowd to become infected? When our daily lives teem with infirmity, mutilation, and gruesome deaths, what kind of "mental health" is possible?

Gay men, in particular, face disturbing and painful questions. Those of us who inhabited the nation's urban centers during the "golden years" of gay liberation in the 1970s are among the increasingly few members of a lost generation caught between memory and regret. Our sexual congresses -- once sites of safety, affirmation, and joy -- have become twisted by fear, sadness, and intrusive thoughts of death. The social fabric of our community has been torn asunder. On a daily basis we discover frightening new aspects of ourselves and our world which we cannot understand and do not want to face.

Yet few people want to hear the pain faced by uninfected individuals. A simple assertion of issues influencing the HIV-negative is met with a barrage of rage. When we have attempted to bring these issues into a public forum we are accused of robbing resources from the "truly needy" -- those who are HIV-positive or who have AIDS. We are mocked as having "antibody envy" or derided as self-centered survivor queens yearning for victim status. The severity of the impact of the epidemic in our lives has been denied, minimized, and discounted every step of the way. So we, a population of supposed survivors, are left to walk the earth like robots or zombies, telling ourselves and others that everything's fine while we are actually numb, cut off from our emotions, entrenched in a state of denial.

I lived in this village of denial for years. As I watched friends, lovers, and colleagues sicken and die, my psyche shifted from a state of simple grief to multiple loss to complex repeated trauma, without awareness or self-knowledge. The circuits of emotion within me became bizarrely redirected and sometimes fully disconnected; a close friend would die and I would feel nothing. Funerals ceased to serve a restorative function. I knew I wasn't alone in what seemed to be a warping of internal response, because at AIDS memorial marches and displays of the NAMES Project quilt, I watched others engaging in social banter, gossiping, or joking, doing anything except confronting the direct experience of grief.

No one tells survivors of an earthquake that they are wrong for being profoundly shaken by the experience. Midwest farmers who lost homes, livelihoods, and entire communities were not expected to be "doing fine" in the aftermath of the floods of 1993. The destruction of the human psyche visited on survivors of Hiroshima or Nazi death camps was viewed as an understandable fallout of these unique historical catastrophes. Yet survivors of a dozen years of the AIDS epidemic are expected to be well-adjusted, grateful people; specific psychological, spiritual, or existential needs should remain unspoken. There's more important business at hand.

AIDS is a disaster, different from though parallel to earthquakes and fires, plane crashes and shipwrecks, the bombing of Hiroshima and the Vietnam War. Like a long, slow train collision occurring over years rather than seconds, the AIDS epidemic presents us with survivors who have suffered enormously, witnessed extraordinary human mutilation, and are left wondering why they survived while others perished. Is it any wonder that individual survivors of the AIDS epidemic are experiencing a broad range of clinical symptoms usually seen in the wake of mass disaster? Yet, as often occurs amid certain kinds of trauma, a mass architecture of denial has been constructed which insists that the uninfected are "doing fine."

Not only are HIV-negative individuals crashing under the weight of so much sickness and death, but we judge the manifestations of this trauma within us as indications of our own personal weaknesses. When we experience depression, anxiety, panic attacks, or listlessness, we attribute it to failings in our character rather than to a natural response to decimation. And we are aided in our self-blame by psychotherapists, journalists, and community activists who occupy this same contradictory terrain of decimation and denial.

We can afford to ignore the impact of the epidemic on the uninfected no longer. Over half the gay men in San Francisco are estimated to be infected with HIV; another 14,000 have died in the past dozen years. The majority of my peers who were here in 1980 are either dead or infected. The handful of us who are as yet uninfected struggle to avoid succumbing to self-destructive behavior indicative of the demons inside us. Therapists I've spoken with estimate that almost half of us are on antidepressants and antianxiety medication. Anecdotal evidence of drug and alcohol relapse and suicide activity is mounting; the statistics on the prevalence of unprotected anal intercourse and subsequent seroconversion are again on the rise. Something is happening to us which no one wants to face.

HIV-Negative is the first book published which begins to describe the emotional and psychological landscape of the uninfected after a dozen years of plague. In account after account, the real-life conflicts we face spill out and the struggles to escape or hide, resist or adjust, loom large. HIV hasn't gotten into our bloodstream; nevertheless it has twisted and distorted our identities, self-esteem, and relationships. We read of the difficult social and sexual dilemmas posed by antibody status and the many ways our lives have been interrupted and redirected without our knowledge or consent. The lives we live now are not the lives we expected to be living; we are not now -- nor will we ever again be -- who we once were. This cataclysm has changed us in deep and permanent ways.

The testimony in these pages is shattering, destroying silences in the community, in the media, and within the souls of HIV-negative people. The tenuous grasp we have held on our fragmented selves becomes difficult to maintain. As the HIV-negative narrators in this book strip away the cloak of secrecy and reveal the complex ways in which living in the center of a cyclone transforms the human spirit, we find pieces of our own lives spinning madly through the air. Through bearing witness to this epidemic, we are able to transmit our testimony to others and begin to integrate the horror into the story of our lives.

Such activity must take place before individual and social restoration can begin. This book encourages all of us to speak the truths of our lives, however ugly, painful, or bizarre. The disaster of AIDS demands much of us; our testimony is the key to our continuing survival.

Eric Rofes
San Francisco

Contents · Foreword · Prologue · Introduction
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23
Conclusion · Appendix A B C · Notes · Contributors

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