In the Shadow of the Epidemic

A book about being HIV-Negative and about issues of survival needs roots. A decade ago the most informed among us could have had no clue about the meaning of the title, and even now, though the literal meaning may be intelligible, the human meaning is perhaps still obscure – even for many of us living in the mainstream of the AIDS epidemic in the United States. I trace the personal roots of this book and its meaning back to the summer of 1985. On the north side of town, near the Golden Gate Bridge, I sat in the Silver Cloud Bar and Grill on Lombard Street. I was with a friend from graduate school, Joe Brewer, a man who suffered a terrible loss early in the epidemic, and who, with a friend, Martin Delaney, had founded an organization to investigate and inform people about treatments for HIV. This is an organization now well known as Project Inform.

That night Joe was trying to enlist my volunteer help with a simple drug study – things were done quite informally in those days – and we also spoke about the relationship between the psychology and the politics of being gay. I had a lifelong aversion to political and sociological explanations. As an undergraduate in the sixties, I abandoned any hope of finding meaning in political activity and joined the departments of philosophy and religion. I studied Schopenhauer, Wittgenstein, Mahayana Buddhism, and Zen, and found what seemed at the time genuine insight about the human plight and relative happiness in an absolutely apolitical solitude.

Like human life as a whole, homosexuality seemed to me understandable without resorting to politics or sociology. They elucidated nothing, I was sure, about a purely personal and psychological issue. That night Joe was simultaneously sonorous and relentless in a way that only Southerners can be (he is from Atlanta), and he was talking politics. Although his effort was characteristically intelligent and articulate, I was resistant. I would not have my feelings politicized. What he said, more or less, was that AIDS had changed whatever used to be true about my position, and these days if you were not politically active, you were not gay: You were just a homosexual, and he lingered on that last word with a kind of unholy marriage of smile and snarl that left no doubt that that was not what you wanted to be. The government, and particularly the Food and Drug Administration, was killing gay men wholesale by their neglect of the AIDS epidemic, and homosexuals who were not part of the solution were, if not exactly part of the problem, at least colluding with it. After dinner Joe walked me across the street to my car. We talked another moment, I kissed him good night, and we hugged.

Had I looked over his shoulder at that moment, I would have seen the summer fog churning above the Golden Gate and advancing up Lombard Street. On such nights, it would tumble like a monstrous, slow-motion tidal wave, a sight that sometimes reminded me of my childhood terror at black-and-white movies in which a dam broke in the hills above a small town, and a wall of water washed children, their pets, and their mother’s furniture into oblivion. Still unaware of tonight’s foggy advance, I got into my car, made an illegal U-turn at Webster Street, and headed West on Lombard. In three blocks I was suddenly in it – summer’s gray, saturated wall of fog that was sluggishly, silently burying San Francisco. A bit startled, I turned on the windshield wipers and the radio. Bob Dylan sang from Highway 61 Revisited , and I laughed at myself for being surprised that, in June, the fog should be taking the town. I had, I thought to myself, too many assumptions and expectations about the world and about how things were supposed to be in it. But I still did not know of the feelings I would come to have about the AIDS epidemic, which at that moment was also crawling across San Francisco, leaving behind itself not the quiet of fog, but tracks of desperation, grief, and anger that might never be eradicated.

Two years later, in the summer months of 1987, I found myself three days a week at a dilapidated desk volunteering as housing coordinator for the Committee for the March on Washington for Lesbian and Gay Rights. The event was to take place in October of that year. The Committee shared a storefront on Market Street, a block from the center of the Castro District, with the NAMES Project quilt people. Sitting at my desk, which was up against one wall and facing out across the large room, I had a constant view of the cutters, sewers, and riveters. All were working to produce, catalogue, and assemble memorial panels for those who had died of AIDS.

My job for the March committee involved coordination with the Washington, DC committee to provide free housing for people who wished to attend but had financial limitations. It was exciting and energizing as these things are with their human contact, camaraderie, and common purpose. But in contrast to this success, there was something else very powerful going on in the storefront room on Market Street that summer, and it was on the walls and floors, in the faces of men and women working on the quilts, and, finally, I realized, deep inside of me. It was the overwhelming experience of AIDS and the toll it was taking, and it was the dawning realization that we were over half a decade into the epidemic and it was not supposed to have gone on this long. Each panel of that quilt was about a person, and one could read into each a childhood, an adolescence, aspirations, successes, disappointments, family, lovers, and friends. Each panel, however simple, seemed the story of a full human life, but each had also ended in the awful strangle hold of AIDS. Though I don’t think that in three months I actually heard AIDS, epidemic, or death spoken out loud, they were a palpable presence in the room. It was often unbearable to look hour after hour at the thousands of panels that hung and lay on every surface. And, if that were not enough, every afternoon, the Post Office and United Parcel Service arrived with hand truck after hand truck stacked with boxes of new panels, sent from around the world by surviving lovers, family, or friends for addition to the quilt.

Although the panels are intended to memorialize and celebrate the lives of those who have died, the stacks of unopened boxes, awaiting attention from overworked staff, began to make me think less and less of celebration, and more and more of newly arrived corpses. Handcarts bounced and rattled their way inexorably past my desk every afternoon, and stacked on them were not boxes, but coffins, mostly filled with gay men. These arriving panels were piled wherever they would fit, waiting to be unwrapped, catalogued, edged with canvas, and installed in their designated positions in the quilt. If the panels seemed corpses, those who worked on them seemed more and more like morticians, readying man after man for a mass funeral of absolutely staggering and unexpected proportions. Our room felt tinier and tinier with every delivery, and I thought to myself, “It is 1987, these deliveries are not going to stop, and we are in terrible, terrible trouble.”

It was 3:30 in the afternoon, late in August, and time for more deliveries. In their daily ritual procession, the corpses bounced and rattled past the dilapidated desk of the Coordinator for Free Housing. Throughout those months I had thought repeatedly about the conversation with Joe two years ago in the Silver Cloud. I had been slowly realizing that it was not Joe’s effort to politicize I resisted that night; nor was I avoiding volunteer work for Project Inform. It was his grief that I could not accept and did not want. Though Joe had already lost his closest friend to HIV, I had not yet lost anyone important. I read about the epidemic, heard about it from friends who had friends, and watched the truncated, simplistic reports on television. But I wasn’t living it. I did not want to, and I was not going to let Joe make me. In 1985 I was still among those who were not “personally” affected by HIV, and I could still resist acknowledging the incredible size, horror, and unmanageability of what was going on. In the Silver Cloud with Joe I had unconsciously entertained the fantasy that I would never feel his grief as my own. I already had enough grief for my own reasons: I had lost both of my parents by age sixteen, and, between 1981 and 1985, had lived through another five major deaths, all unrelated to AIDS (which, from the retrospective perch of 1993 is a peculiar irony). I would not take on more grief from the epidemic. I wanted to deny it was possible, and for the time being my stance had the seamless plausibility that only denial can bestow to protect us from life’s most awful events.

As it happened, only a few months after my meeting with Joe, a man with whom I was in love suddenly seroconverted. I had told Joe about him – and his good health–in the Silver Cloud. That he was only HIV-positive and not yet ill made no difference. I knew enough death to feel the loss long before it made itself literal, and I was buried under grief. A half decade later, over dinner in the Castro, I told Joe about this, and I apologized to him for my rejection of his grief that night in the Silver Cloud.

Though still allergic to organized politics, by 1987 I had become very gay in Joe’s sense of things, and that is one reason that I found myself sitting day after day in the colorful morgue on Market Street. By August, the job of the Free Housing Coordinator had become too big for one, and I took on a co-coordinator. David lived in a transient hotel at Market and Fifth Streets, and had just moved from Boston. His lover had died there two months before, after a last year of awful illness. The lover’s parents had thrown him out of the house the two had shared for seven years, and taken everything. He had to get out of town, he told me. And he was a painter, he was HIV-positive, and his health was just now beginning to fail. He was a huge help on the job, he was a good companion, and we shared a sense of the irony of our work, and of a triumphant March Committee buried hip-deep in corpses.

In the cool evenings after our volunteer work, David and I would walk up Market to The Zuni, where we sat by the fire if we could. We both liked white Burgundies and often split a bottle with dinner. After one glass, a bewilderment would begin to smear the intelligence of his face, and I could suddenly see what he disguised during the day: the toll of the last years in Boston, and of what he anticipated for himself over the next one, or two, or maybe three years.

After dinner we would often try to walk off the food and wine, as happy to be out in the chilly air and on our own as we had been, two hours before, to come into the warmth and sociability of the restaurant. These nights too, here on the south side of town, the fog often tumbled in too and encircled the base of Sutro Tower perched on the top of Twin Peaks. The tower’s flashing red tips poked out above the fog seeming to call silently for help, like the beacons of a life raft, becalmed and stranded in mid Pacific. Fog, second only to a heavy snow in muffling the rattles and roars of urban life, would on rare nights drop all the way down the east slopes of the Peaks and into the Castro, and on those nights it would bring silence to this troubled part of town too. One night it was very wet and quiet, and the saturated air around us hung as if ready to fall to the ground with the thud of a wet blanket big enough to cover the city. David and I walked past a row of elegant Victorian houses, and I realized that the interior light no longer brought images to my mind of happy, gay domesticity living itself out in the warmth implied by the orange glow. It seemed to me that now there was surely only despair and pain in these houses, and that it was only the mercy of the soft, muffling fog that kept some audible evidence of that truth from us. As I had these thoughts, David startled me by suddenly waving his hand grandly around the neighborhood as if perhaps he owned it and breaking the silence with an interrogation: “Do you think life for these people is still as it was supposed to have been?”

“Supposed to have been?”, I asked.

“I meant before everyone got sick,” he said with annoyance at my stupidity. I had no idea how to answer him.

During the day, I protected myself from being overwhelmed by not really looking at the Quilt panels. I don’t know exactly what David did, but I could not look, unless I was willing to cry. I treated the panels as mosaics, allowing in color, surface, and pattern, but no information. I avoided actually reading anything. The simplest words – Robert I Miss You, or May 17, 1958 – June 3, 1987 – would sometimes sweep me down rivers of grief, mostly personal, and these episodes, now more and more frequent, cut deeply into my usefulness for the March, and into every corner of my sense of well-being.

It all got in anyway. I sat there for three months and absorbed almost every detail of everything in front of me, though I repressed much of it at the time, and have to this day. Often a panel would burst through my vagueness with undeniable clarity about what it was and what it meant, and the experience gave clear meaning to the idea that something might sear itself into one’s mind. One day a new arrival hung across from me – it was for “Paul,” and there was a last name too, but I do not remember it. Rendered in cloth and thread, a too thin, rather androgynous figure stood cloaked in black, holding an umbrella, and a raven stood beside him on the ground. The embroidered inscription in front of them read, “Last night it did not seem as if today it would be raining.” My grief suddenly flooded out, as if having reached some critical limit of pressure, and I knew at that moment that it was raining, and that I still was not able to bear letting all of that in – or out.

I was continuing to deny what the epidemic meant and would continue to mean to me, and in that moment I knew that I had to think very hard about AIDS and my feelings about it, or eventually I would be lost. I cannot say in exactly what sense I thought that might happen, but the danger was clear and palpable. As a psychologist, in psychotherapy myself for many years, I knew that I came to the epidemic with too many serious losses stretching back to early childhood, and that I was easy prey for an event like this one. In that moment, staring at the black figure and the bird and the lament to which they stood witness, it seemed that I was being sucked helplessly into a slowly churning wake of grief and devastation that AIDS trailed behind itself like a marauding, outlaw ship in no big hurry to leave the scene of the crime.

Those are the personal roots. It was then that I started to work on this book, in contemplation at least, for I knew that my personal survival depended on the best possible clarification of my feelings. I had determined with reasonable certainty by this time that I was still HIV-negative, a fact the significance of which I did not yet understand. But I was aware of the peculiarity of not feeling more consistently fortunate about that. Thus my first piece was a 20 page paper on the subject of HIV-negative men. It was about being HIV-negative, feeling ambivalent about that, about grief, loss and survival, and about the conflict and confusions of an HIV-negative “identity.” I sent the paper to a handful of friends, feeling that I had clarified only the tiniest corners of these murky issues, but I was overwhelmed by the enthusiastic response. People felt that for the first time they had a voice for similar feelings, and were immensely appreciative.

As I understood new issues, or old ones better, the paper expanded, the mailing list grew, and I began a busy schedule of speaking engagements on the subject. By early 1990, I had, by word-of-mouth, received about six hundred requests for copies of what was by then an 80 page paper. One speaking engagement was at the monthly meeting of The Bay Area Physicians for Human Rights, a gay physicians’ organization in San Francisco. A member of the audience, Donald Abrams, Assistant Director of the AIDS program at San Francisco General Hospital, approached me. Although I had submitted an abstract on the subject of “HIV-Negative Psychological Issues” for the 1990 International AIDS Conference in San Francisco, it was rejected for presentation. Donald felt it was an important subject, and was Chairman of the Conference “Track D Committee” concerned with presentation of topics about “Social Impact and Response.” Through his intervention, I did make a presentation at the Conference, to a group of about 2,400, and from this event came another 600 requests for copies of the paper. By the end of 1991 I had printed and mailed more than 3,000, responding to requests from people in Australia, New Zealand, several African countries, every country of Western Europe (except Spain, for reasons I do not know), and virtually every state in the Union.

Paralleling this enthusiasm and interest was much criticism about the impropriety – or sheer effrontery – of my addressing the issues of HIV-negative men, while men with AIDS were dying. Surely, the feelings went, those lucky enough to have escaped AIDS could keep their whimpering down so the truly sick could be attended to. A fellow psychotherapist in San Francisco, Tom Moon, related a response to his proposal for offering HIV-negative workshops at a mental health conference for gay men. He was told by a member of the steering committee, “This is like Germans wanting to get together after the war to congratulate themselves on not being Jewish.” Out/Look , the presumably progressive (and now defunct) lesbian and gay quarterly, rejected two manuscript submissions from me on the subject of HIV-negative issues. The first, in 1989, described my paper as “moot” without further explanation; and in 1990 the editorial board felt the subject was “too controversial.” Under new editorship, they did finally publish a piece about “survivor guilt” in 1991.

In 1990, however, Eric Rofes, then executive director of San Francisco’s Shanti Project, read a copy of my paper and wanted to discuss the possibility of my consulting on HIV-negative issues for Shanti staff and volunteers. I was surprised. A longtime Shanti staff member, Ed Wolf, was the pioneer in such work in San Francisco. But this was something he did personally and not as Shanti staff. For this powerful AIDS service agency to place its prestige, personnel, and funding behind HIV-negative concerns seemed quite radical at the time. Eric invited me to meet for breakfast early on a weekday morning at what I later learned was his customary window table in Castro Street’s Cove Cafe.

“How will I know you?” he asked.

“I will be the one looking for someone,” I offered.

“That will never work,” Eric objected. “Everyone there is looking for someone. That is the whole milieu of the Castro.”

We did find each other, and though I had barely managed to struggle out of bed at this hour, Eric had already been to the gym and was full of oxygen and energy. We had an extended discussion, and he wondered aloud to me if Shanti’s backing a project on HIV-negative issues would not open “a political Pandora’s box.”

“Oh, I’m sure it will,” I said.

“Let’s do it anyway and see what happens,” he responded to my surprise.

I think Eric’s courage on this matter, and Donald Abrams’ at about the same time, marked a watershed for the politics, if not the substance, of attention to negatives in San Francisco. In the past few years there has been a greater and greater acceptance of the importance of these problems, both in terms of human suffering, and in terms of pragmatic concerns like sexual “relapse.” Over the past two years, Shanti has done a number of workshops and retreats on HIV-negative issues. Other important mental health agencies, including the University of California at San Francisco’s AIDS Health Project and California Pacific Medical Center’s Operation Concern are now providing similar, if still limited, services.

In other parts of the United States, however, the politics of HIV-negative issues have remained troubled to this day. In 1992, a Boston psychiatrist, editing a book about psychotherapy with gay men in the age of AIDS to which I had contributed, noted on my manuscript that some of my ideas about negatives might be “heresy” to many in Boston, but he thought I had “put [my] finger on a tremendous issue.” The importance of HIV-negative issues requires more clarification, and that, I hope, is one of the things this book will help do.

At this point, there is one intolerable simplification that I must confront, lest it obscure too much truth. That is the idea that attention to the problems and concerns of negatives is an abandonment of those who are HIV-positive or ill with AIDS and necessarily fuels divisiveness in many gay communities. To deny that there are differences of some issues and concerns between those who are HIV-positive and those who are HIV-negative is a denial of the obvious. In my psychotherapy practice I work with both (though more with those who have HIV), and I have come to feel that uninfected men are significantly underrepresented in the psychological literature, and in the concerns and understanding of psychotherapists working with them. This is particularly true with regard to psychosocial issues such as the HIV-negative gay “identity,” disenfranchisement of negative men in larger gay communities, and survivor guilt. Neglect of these issues can only bear destructively on the psychological well-being of these individuals and the future of the gay communities as a whole.

Just as there are differences between HIV-positives and HIV-negatives, there are important commonalties. All gay men now live with the epidemic. On survival, loss, and grief, negatives hold no exclusive contract. Many men have suffered more loss, and survived more death than any one man could be expected to endure, and my book is written for all who have survived and who have lost, regardless of whether or not they must also deal with HIV or AIDS within their own bodies. My effort is to bear witness to what we are living and dying through, to try to describe it in useful ways, and to clarify some of its meanings. There is only one possible approach for this task: to try to comprehend the AIDS disaster and human life as a whole, undivided by fear, prejudice, and politics. Being “”HIV-negative” – which is to say ordinary and uninfected – has meaning only because others are positive. If uninfected men, in loathing or in fear, abandon those who are HIV-positive, they must eventually see that they feel only self-loathing and flee only themselves. Just as negatives have no exclusive on survival, positives have no exclusive on illness, suffering, and death–although their timetable may be much more pressing. Any human sense and meaning I am able to make of the HIV-negative experience must also make sense of the lives of those of our communities who are positive, who are dying, and who are dead. Such an effort can only bring us closer, and if it does not, it will be a failure for all.

I have just said that this book is written for survivors who live with and without HIV in their own bodies. But my concern with survival has another meaning too, and one especially important for uninfected men, so many of whom now live in loneliness, denial or fear. The notion of other kinds of survival, the subject of Chapter 9, is meant to open up for discussion the meaning of survival itself. In the most important senses of survival, being uninfected with HIV is only a small beginning. We must find paths that allow survival not only as human organisms, but as communities of human beings, regardless of serostatus, who are able to live passionately, to love, and to lead lives worth living. Survival, in this sense, has nothing to do with our antibody status, and nothing to do with how much time we have on the planet – it has only to do with how much heart we are able to discover within ourselves and bring to our daily lives.

I dedicate my work to all of us who have tried to be who we are by living from our hearts, and have tried to live with passion. Robb did that until he died on a Monday night in the early winter of 1992, and this work is especially for him, that he might understand why I did not die with him.