By Bree LeMaire
My first HIV patient was Carlos: thirty years old, short, bulky, and Latino, with an attentive wife, young children, and an intravenous drug habit. The year was 1986. I was a registered nurse working nights and weekends in a chemical dependency facility in Oxnard, a town about 65 miles north of Los Angeles. The first tests for HIV had just come out, and all intravenous drug users were being tested. The day Carlos’s test results came back positive, we immediately moved him to a private room: isolated him, very nearly quarantined him. He was absolutely asymptomatic: no cough, night sweats, or swollen lymph nodes; but that made no difference. Word spread quickly throughout the unit. We staff members feared for our own exposure. We never considered the effect on Carlos, who was bewildered. “What should I do?” he asked us nurses. “What’s wrong? What happened?”
It was not our place to tell him about his diagnosis. His physician was supposed to do that. We had no answers for Carlos and nothing to share with him but our fears. Something unknown and potentially devastating had invaded our rehab world. I found myself making a wide circle around Carlos in the hallway to avoid him. Even talking to him felt dangerous. When he checked out due to a combination of expedited treatment for his drug use and his desire to leave, I was happy to see him go. I felt safer with him gone. I never saw him again.
A year later, wanting to get away from night and weekend work, I enrolled at Cal State Northridge for a master’s degree in health science. Early on, in those classes I learned about the Human Immunodeficiency virus (HIV), a member of the retrovirus family that caused acquired immunodeficiency syndrome –AIDS. I learned that the virus was transmitted only through blood and body fluids or, to put it more succinctly, through sex and needle sharing. I wrote a research thesis exploring how hospitals were coping with the emerging crisis. I found that hospitals with the highest AIDS admissions were best prepared, although homophobia and unsupported fear around HIV still prevailed. One hospital refused to be interviewed. My own apprehension diminished with knowledge, but still, the Morbidity and Mortality Report from July 1989 said that 56,468 victims had died so far. There was a severe shortage of nurses willing to do AIDS work.
In 1987, an AIDS research job opened up at UCLA: a five-year study sponsored by the National Institute of Health, which was going to look at the pulmonary complications of AIDS, especially Pneumocystis Carinii Pneumonia, the specific cause of many AIDS related deaths. The study called for enrolling 250 subjects from the two groups at highest risk for HIV—gay men and intravenous drug users—and following them for five years.
I wanted a more secure job so I told myself that AIDS could not be as infectious as the hysteria suggested. If it were, a lot more people would be sick: the scourge would resemble a flu epidemic in scope. Here was a unique opportunity to work as a research nurse at a prestigious hospital, a shot at a professional life that went beyond working nights and weekend shifts at county hospitals. I certainly knew how to do research and I could use my newfound knowledge to make a difference in the world. Here was a chance to play a part in finding answers to life and death medical questions. When I got the call informing me that the job was mine, I was surprised and thrilled. Later I found that only one other person had applied.
At that time, to me, the risks of HIV infection felt minor compared to my disjointed life. Eight years earlier, I had gone through a nasty divorce. My husband and I had been married for two decades and we had five children. Gary, it turned out, was a closeted gay man. I survived the divorce, but I still felt rudderless. I had left a supportive community to carve out a path of my own, but I still didn’t feel settled, not on any level. When I started working on that research project, my main exposure to an AIDS patient had been Carlos, who had not seemed all that sick. I figured AIDS couldn’t be as bad as they said.
My first research subject in the study was Brett. He showed up at our clinic in a crumpled shirt and pants. He was a professional gambler, and he said he’d been up all night driving from Vegas. He looked like he’d not seen sunlight in a long while. I wondered how this pasty, overweight, and jumpy man could possibly camouflage his poker playing “tells”, those unintentional tics that reveal whether a player has good or bad cards. In our clinic, he lacked any ability to hide his anxiety. I wanted to welcome him so I smiled a lot. I tried to cast his visit to our clinic as a friendly encounter. He didn’t return my smile and offered one-word answers to all my questions.
Our study demanded that we establish two things from the outset: what was the subject’s HIV status and how had they had been exposed to the virus. We used a blood draw to determine if they had the virus. If they did, we asked, “Have you ever had sex with another man?”
Brett could not tell us how he’d gotten the virus. He insisted adamantly that he had never had sex with another man, he was not gay, and he certainly was not an IV drug user. He just didn’t know. However, he was sure he had the virus because the Las Vegas Blood Bank had sent him a “stop donating” letter. Using a process of elimination, I could only surmise that he had had sex with someone who was infected, most likely a man.
Asking about another person’s sexual preference is never easy. I thought back to the day, ten years earlier, when I first broached the topic with my then-husband, Gary. He had been absent from our home for three days. When he came back he told me that our marriage was in trouble because I had become “liberated,” I had been taking conscious raising classes to developed my own strengths as a woman and move beyond the kitchen and caretaking. Not knowing any better I accepted the blame. But then my therapist suggested that Gary might be gay—it was the first thought that had entered her mind. I didn’t believe it. How could he be gay? We had five children!
I arranged to meet Gary at Denny’s on a weekday afternoon. And it was there, sitting across from each other in a coffee shop booth, that we saw our rocky eighteen-year marriage come apart definitively.
“Are you gay?” I asked Gary with tears in my eyes, not wanting to hear his answer, yet realizing that I had to know.
He gave me a how-dare-you-ask-me-such-a-question look. Then: “Bisexual,” he snarled. “This is my own private business, not yours.”
He left quickly, not wanting to console me. I sat there oscillating between anger and sadness for what seemed like hours. Homosexuality had never occurred to me as a source of our problems. I had never seen myself as anything but a mother and a doctor’s wife. Apparently, my whole life had been a sham.
Now in my role as a research nurse, I had to be direct. I had to ask the hard question I had asked of my ex-husband: “Have you ever had sex with a man?”
Brett said, “No,” and went on to insist that he had also never used any IV drugs. I didn’t know what to put on the sheet. Not knowing how he got the virus would disqualify him from the study. After he left, I agonized over what to do. Finally, I changed his “no” for the sex-with-men question to a “yes.” My best guess was that in desperation he’d sold more than his blood on some occasion for quick cash. It seemed a dumb reason to turn a person away from this study.
The blood draw was a challenge. We had to take three large tubes and two small ones. In those early days, I was hesitant to stick anyone. I have lousy veins myself and getting my own blood drawn is usually an ordeal. My only prior experience with seeking blood vessels had been with chemically dependent IV drug users: finding a viable vein in that job had been a collaborative effort.
The last time I called Brett to set up an appointment, he was slurring his words. It sounded like he’d been drinking. I’d done a lot to accommodate him, made his visits shorter, juggled the schedule, but now he told me he just wanted out, he didn’t want me to contact him again. He left long before the study ended. I never found out what happened to him.
Doing clinical research is a bit of a no-man’s-land. In bedside nursing patients come in with an illnesses, get well and leave. I would not usually hear from them again unless they had a relapse. The intensity of the nurse-patient relationship was contingent on the severity of their illness. In our research, the patients were for the most part well when they entered the study. Once they got sick, they were treated elsewhere. Many returned home or went to other hospitals. A few told tales of returning to families who had not known they were gay nor sick. Some stayed but more returned to Los Angeles; others were just lost to follow up and I never saw them again.
Michael, our second IV drug user, came to the study early on. He was barely 30. He had curly black hair, blue eyes and an accent that dropped to the heart of New Jersey. His east coast attitude demanded my close attention.
He’d conquered heroin and his next war was with HIV. “This will be easy compared to the other stuff,” he said.
I wanted to believe him.
He was nine months sober and just starting rehabilitation classes at the Tarzana Treatment Center. His goal was to become an HIV counselor. He wanted to learn everything he could about HIV and AIDS. We exchanged articles about the disease and talked of possible cures. He planned to marry a girl who’d moved out from New Jersey with him. All was going well, until he started to miss appointments. At first he said he was working. Then he was home on disability, not working.
The last time I saw Michael he was holed up in a small ground floor apartment in Van Nuys. He’d left his job. He looked gaunt and thin. His hyper-vigilant eyes were open wide showing more white than usual. He watched me with an attentiveness that was uncomfortable, so unlike the Michael I remembered. He had not wanted to see me, but I’d insisted, holding onto our prior relationship as a way to collect necessary data. I’d planned a home visit in which we would reconnect. I brought him some banana bread. He badly needed some sort of support system, so I asked whether he’d carried through with his plans to marry his long-term girlfriend.. No, he said; he hadn’t married but marriage was in the wings. Mostly, though, he responded to my questions with one- or two-word sentences. His static eyes stared at me, suspicious of my intentions. I didn’t feel safe. I quickly completed my work and got out. I made it to the car and then I cried, still holding the banana bread.
By the third year of the study, subjects were disappearing without explanation. I couldn’t find them even to make a home visit and complete our questionnaire. We were losing subjects for so many reasons. The work left me feeling empty and sad. I realized how little I knew of death and learned how inadequate my coping skills were. It was a war and our subjects were in the foxholes fighting for their lives. Whenever I spoke with any depth of my work I couldn’t hold back the tears. The only people who could possibly sympathize with me were people who needed the sympathy more than me–the subjects I saw every day at work.
Bree LeMaire began doing AIDS research in 1987. She was involved in an NIH study and in drug studies for more than ten years. Writing was one way she managed to cope with all the deaths.
Copyright 2016 Barbara LeMaire. All rights reserved.