EssaysFeaturePsyche

Were We There to Talk about AIDS, or Not?

One woman's journey in psychotherapy

This excerpt is part of a longer essay. To read the full essay please click here. 

Introduction.

In January of 1990 I was shocked when the Korean immigrant and Harvard-educated molecular biologist I had recently begun dating said he had something to tell me: he was HIV-positive. The shock never really subsided, but Hyung Goo and I got married anyway, in June of 1991. We knew we wouldn’t have long. These were still the plague years of the AIDS epidemic, with average time from diagnosis to death measured in months. Hyung Goo, who had tested positive for HIV five years earlier, was already a “long survivor.” Fear of HIV and AIDS was intense, as was social stigma and discrimination against those living with HIV and AIDS, and against the gay men who were seen as primarily at risk for HIV and AIDS.

In the midst of this, and largely because of it, I entered psychotherapy in the summer of 1992. The six-year, 400-hour therapy that followed was in some sense all about AIDS, as had it not been for the medically and socially catastrophic nature of my husband’s diagnosis I might never have sought therapy. In another sense it was hardly about AIDS at all. I announced to the therapist in the first session that I did not want to spend time talking about my mother and my childhood, and proceeded in subsequent sessions to glare at him in angry silence punctuated every so often by a remark about my mother or my childhood. So were we there to talk about AIDS, or not?

By the time that therapy concluded in the summer of 1998, a lot had changed. Hyung Goo’s health had gradually declined as one by one he made his way through the parade of acronyms associated with AIDS: KS, CMV, PCP, MAI. He died in September of 1995. By that time I had mostly moved from regarding my therapist as an enemy to recognizing him as an ally. We had begun meeting twice a week, and continued to do so for two years before stepping back to once a week for a final year. And AIDS itself was changing. New drug regimens had become available; death rates were declining precipitously. It was all too late for Hyung Goo, whose death, it turned out, had come almost precisely at the peak of the epidemic.

Almost twenty years later, even more has changed. HIV/AIDS has become a manageable chronic condition as strongly related to factors of race and class as to specific sexual or drug-related behaviors. Sexuality in general is increasingly understood as existing across multiple spectra rather than in rigidly binary terms, and LGBT identities are broadly affirmed, and contested, both socially and legally. Among those grappling with these rapid intellectual, social and political changes are religious organizations and religiously-oriented educational institutions like the one at which I teach. And I have found my own attitudes and engagement shifting in ways that are deeply informed by my experiences with AIDS and in psychotherapy.

I.

During my marriage to Hyung Goo I was a doctoral student in theology and ethics at Duke University. Hyung Goo worked in a laboratory associated with the university and received his medical care at the Infectious Diseases Clinic at Duke University Medical Center. His case manager was one of the clinic’s two social workers. We were all so young. I was 28 when Hyung Goo told me of his HIV status, and 29 when I married him. Hyung Goo was four years older. Our professional caregivers — doctors, therapists, social workers, so many others — were in their thirties and forties. We look back, those of us who are still living, on a vanished world, the world of AIDS in the eighties and early nineties.

In the months and years before AIDS became a part of my life, Ryan White had been much in the news. White was a teenage hemophiliac who had been infected with HIV through tainted blood products, and who was a target of all of the AIDS-related hostility then current: barred from school, despite it already being well-established that AIDS could not be spread by casual contact; accused of being gay, since AIDS was a “gay disease”; told that he must have done something very bad to deserve this, since AIDS was an infallible indication of God’s judgment; hounded out of town — by means of a gunshot through the window — by a community bent on making itself an AIDS-free zone.

I had heard about all this, and had been appalled. I didn’t think AIDS was God’s judgment on anybody, and I had what I now realize was an unusually accurate understanding of how HIV could and could not be transmitted. I had resolved that if I ever met anyone who had AIDS, I would not rush screaming from the room. But I didn’t think it would ever happen. I didn’t know any hemophiliacs, or any gay men, or any IV drug users, or at least I thought I didn’t. In retrospect, I realize I knew quite a few gay men. I was even related to some of them. But everybody was more or less in the closet, and it was easy for the rest of us not to notice, or to pretend not to notice.

Then Hyung Goo told me he was HIV-positive. He had mentioned earlier that while he was in college he had been unsure of his “identity.” It turned out that the identity in question had been his sexual identity, and that the questioning had begun with anonymous and coercive sexual encounters in the Harvard men’s rooms. A great deal of sexual activity had followed upon those initial encounters, some of it with men, some with women, some of it consensual, some of it not. There were only a few truly high-risk sexual encounters. Of the first of these, Hyung Goo said, softly, “I was raped.” I never knew most of the details. “I’ll answer any question you ask,” Hyung Goo told me. “But I won’t volunteer.”

Why did I stay with him? There are probably a million answers to that question, none of them adequate. He was smart, he was funny, he was handsome. He was a gifted musician. His deeply held Christian piety was similar to my own. He made whoever he was listening to feel like the most important person in the world. Was any of this enough to override the fact that he had the very worst thing in the world wrong with him, a stigmatized and terrible disease, of which he would surely die, which he could give to me, of which I could therefore die? Of course not. I look back from the vantage point of middle age with a mixture of unease, awe, and deepening understanding: unease, at the perils of the journey upon which we embarked together; awe, at our ability to choose one another even under those circumstances; and a growing appreciation for some of the factors that motivated that choice and for the fruit that it has continued to bear in my life.

So there we were, together, in the world of AIDS. It was a world permeated by stunned disbelief: how could there be an infectious disease for which there was no ready cure? Hadn’t that era — of smallpox, polio, syphilis, tuberculosis — ended with the advent of antibiotics and vaccines? The gay men at the center of the epidemic responded to this unimaginable calamity with a paroxysm of collective grief and a determination to care for one another no matter what. Those beyond the visible scope of the epidemic responded with howls of scapegoating and finger-pointing, typically couched in religious terms: AIDS was God’s judgment on the sexually immoral, who therefore deserved what they got.

That collective cultural rage and shame was expressed architecturally at Duke University Medical Center, which actually had four infectious diseases (ID) clinics at that time: a pediatric clinic (for childhood diseases), a travel clinic (for vaccines for things like yellow fever and typhoid), a clinic with the then-standard ID focus on pneumonia and wound infections, and a recently-established ID clinic for the patients and the disease that no one wanted anything to do with: gay men and IV drug users with HIV/AIDS, many of them uninsured or underinsured, many without supportive family or friends. That ID clinic, run in its early years by a single physician, was in the basement of the hospital, behind a door without a window.

Behind that door was a kind of alternative universe, where the staff dressed in drag for Halloween, and where the most anticipated guest at the annual clinic holiday party was a real drag queen, Mother Christmas. Gay men and prostitutes sat together in the waiting room chatting about clothes while the phlebotomist asked her signature question of IV drug users whose veins had all collapsed: “Now honey, where did you last shoot up and it worked?” When the medical director of the clinic wasn’t seeing patients himself he was on the phone trying to arrange consults with surgery, radiology, infectious disease. No one would talk to him. More than one of these non-conversations ended with the doctor ripping the phone out of the wall in frustration and rage.

The lovers of people with HIV and AIDS had Mother Christmas as their patron saint. The haters had Jesse Helms. In 1988 the five-term senator from North Carolina had opposed federal legislation funding AIDS research and treatment on the grounds that “there is not one single case of AIDS in this country that cannot be traced in origin to sodomy.” Even if the premise (that AIDS was somehow intrinsically related to homosexuality) had been true (which it wasn’t), the conclusion (that resources should therefore be withheld from persons with AIDS) did not necessarily follow. But the reality was that Helms had more acolytes than Mother Christmas, and there was precious little territory in between.

Margaret Kim Peterson is Professor of Theology and Psychology at Eastern University, St. Davids, PA.

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