Research Subject
I was taking a graduate seminar at Harvard Medical School, and I didn’t belong there. Every moment I was in class, I felt like I was drowning. I was totally unprepared for the coursework and terrified of being called out. I was 21, an undergraduate biochemistry student. My father had told me that if I wanted to be taken seriously when I applied to graduate school, I needed to take a graduate level class. I knew that this class was going to be too advanced for me, but I didn’t have a lot of options that fit into my schedule. My grades were just barely above the B+ I needed to stay in the honors program, so I needed to get at least a B- in Virology 201.
It was my first science seminar class. In the early 90s, the Harvard undergraduate biochemistry major was oversubscribed and they didn’t have the staff for small classes. My exposure to primary literature had been in the context of safe and circumscribed lists of easy-to-answer questions. In Virology 201, we were expected to read peer-reviewed research papers and offer incisive critiques. I could barely decipher the abstracts, let alone critique the authors’ methods or the conclusions they drew.
There were about a dozen other students in the class. They couldn’t have been much older than second year graduate students or maybe some of them were MD/PhD students who had already taken two years of med school classes. I remember them all being men (though that can’t be right) and all with khakis, fleece jackets, and close-cropped hair. I looked very out of place, with badly dyed hair, a lip ring, a leather jacket, and combat boots held together with ShoeGoo. I was used to not looking like the other biochemistry students, and to keeping to myself, but there was a big difference between being one of two hundred in a lecture hall and one of twelve around a small table. There was one student in the class who I thought might be gay — he had curly blond hair and an open, slightly puppyish face, and every once in a while he gave me an encouraging smile.
I was trying to maintain a double life. My public life was being an honors biochemistry student on track to a prestigious graduate school. In theory, going to graduate school was what I wanted — a chance to be a professional nerd — but the more exposure I had to actual biomedical labs with their egos and backbiting and petty drama, the less appealing it seemed. But I needed to do something — I was sure that structure and goals were what I needed to keep my life from slipping into chaos — and I didn’t have a back-up plan. I knew I didn’t have the unremitting drive and laser focus I needed; the best I could do was to get my credentials in order— the right classes, the right internships.
My private life revolved around a series of interlocking subcultures and identities — queer, punk, goth, slacker, druggy. Its credentials were your look, your politics, your obscure musical tastes, who you knew in the scene, what drugs you did. My drug of choice was heroin, and it was swallowing up my life. I knew of at least one other honors biochemistry student who shot heroin, but he was much more successful at presenting himself as an uncomplicated overachiever. My insistence on being so weird – the weird hair, the weird clothes, the weird friends — was alienating the people who could have helped me in my career, but I couldn’t give it up.
Virology 201 was held in a dim, overheated, too-small conference room at Harvard Medical School. The professor, Joseph Sodroski, was a ground-breaking HIV researcher and clinician. He was tall with a runner’s build, an early-80s-style mustache, and a head of greying, tightly curled hair that seemed just on the verge of being too big. He wore dress pants and a dress shirt to class, like he had been dressed more formally for his clinical duties and had taken off the jacket for the class. The semester was divided into three sections — herpes viruses, hepatitis B virus, and HIV. Each one started with a detailed lecture and then delved into important recent papers in the field. Dr Sodroski walked around the room as he talked, in the narrow space between our chairs and the bookshelves lining the walls. He was a good lecturer – knowledgeable and passionate – and good at leading discussions.
The month on HIV was a litany of catastrophic disappointments. Animal models with encouraging results that didn’t translate to humans. Lab strains of HIV that had mutated so far from the real virus that years of research were found to be useless.
One paper, published in Nature in 1993, left us all cautiously optimistic: “Use of evolutionary limitations of HIV-1 multidrug resistance to optimize therapy.” Up to that point, researchers had been trying to find a single drug that stopped HIV, but the authors of this paper had found that targeting HIV with multiple drugs put the virus under enough evolutionary pressure that it could not mutate out from under it. As we went around the conference table with our feedback on the paper, everyone looked at the instructor hoping he would confirm that this was the groundbreaking news it seemed to be. Dr Sodroski told us the paper’s conclusions had already been undermined by an Erratum later in 1993. But something in his tone of voice suggested that even if this combination had failed, he thought the idea of combination therapy had real promise.
I didn’t know it at the time, but in 1995, in response to pressure from ACT UP and its new Treatment Action Group, saquinavir, the first protease inhibitor against HIV, was working its way through an open label study. On December 6, 1995, the first combination therapy that included a protease inhibitor was approved by the FDA. By 1996, AIDS deaths would be dropping for the first time.
I identified more with the anonymized patients in the studies than I did with the researchers or with my fellow students. When I had first gotten to Harvard, I realized that the undergraduates who most loudly proclaimed that their plans to cure HIV were sociopaths. More interested in glory that in human suffering. The students in this class were older and didn’t seem so nakedly ambitious. But they talked so casually about the patients as a series of risk factors. It felt like they were talking about me. I was overwhelmed by what those anonymized IDs represented. Each one was a person, someone who was probably already dead.
I was acutely aware that I was a series of risk factors, with injection drug use at the top of the list. The first HIV risk checklist I had encountered was the Red Cross blood donation form. The day I turned 18, I donated blood for the first and only time, and had to fudge the number of months since I had broken up with my first boyfriend. He was a former injection drug user who had quit years before, but he would always be considered a risk, and it hadn’t quite been six months (the window period between exposure and a reliable negative test results) since the last time we had sex. Also on the list of risk factors was sex within the last six months (no matter what precautions you took) with a man who had ever had sex with another man. I was bisexual,
and so were many of the men I slept with. Piercings were a risk factor. As was doing any kind of street drugs. When I was 20, I injected heroin for the first time, and I’ve been banned from donating blood ever since.
Technically, I was already an HIV research subject. I was enrolled in the Cambridge Cares About AIDS needle exchange program. In 1993, Governor Weld authorized ten needle exchange programs in Massachusetts, but only as pilot programs. A pilot program, especially one forbidden to give out any needles beyond a one-for-one exchange, couldn’t make much of a dent in a global pandemic, but access to clean needles made a big difference for me. I was also incredibly lucky that I hadn’t started injecting until 1994. Needle exchanges in New York City had been legalized in 1992, and the infection rate among people who inject drugs in New York and New England was already dropping.
I was working as hard as I could to keep myself on the academic track while also knowing that it could all be overturned by a positive test result. There was a very real possibility that if I were HIV+, I would not be able to pursue a career in biomedical research. Not just that my career would be cut short — AZT didn’t seem able to actually extend people’s lives — but that if I became immunocompromised I probably wouldn’t be able to work in a Biosafety Level 2 laboratory.
In the fall of 1995, I was in the middle of a six-month course of isoniazid, prophylactic treatment after I tested positive for tuberculosis. The test result had been so positive that it left a shiny, pink scar the size of a pencil eraser on my arm, where I had to look at it every time I pushed my sleeves up. A friend of mine, a fellow Harvard student, had had active tuberculosis that was misdiagnosed by Student Health. By the time he realized that he had something more serious than bronchitis, he just wanted to push through until he graduated, afraid that he wouldn’t be allowed to pick back up after a medical leave of absence. People whispered that he must have AIDS to have gotten tuberculosis. But years of politicization, neglect, and underfunding of the public health infrastructure meant that by the early 90s New York, where my friend was from, was in the middle of a tuberculosis epidemic.
Some people can’t tolerate six months of isoniazid because it causes liver inflammation. I had my ALT levels tested every month and apparently everything was fine. But I was nauseous all the time. I lost weight. My skin, which had never been great, tipped into full blown cystic acne. As my skin got worse and worse, I started to feel like a pariah, like I should be wearing a heavy veil to conceal my diseased skin from the people around me. For their good as well as for mine. I did not ever want to be looked at or to think about my body or my skin.
It was obvious how depressed I was, and it seemed to upset people, even people who would never have thought to ask if I was using drugs. I’ve since learned that isoniazid can cause depression, poor memory, and poor concentration. I was suffering from all three. Partly, surely, because of my drug use. But that fall was also the slow, grinding end of my first real relationship. We had been dating for almost four years, and at first I had tried to pour everything into the relationship. But Djuna and I had an open relationship with no guard rails, and every time she fell in love with someone new, it broke my heart. Eventually, I had nothing left to pour
into the relationship. Instead of saying so, I became absent — wrapped up in school, in drugs, in depression. Absent even when I was in the room with her. One day, I came home to find that she had taped my isoniazid pill and the vitamin B I took with it to the fridge. I had set the pills on the counter before I went to my internship and had forgotten to take them. It was a kind gesture, but our relationship had turned to ashes, and I felt judged and put upon.
That semester, my last semester of college, everything seemed to hang on whether or not I graduated, whether or not I got into graduate school. I did my best to stay away from heroin and from everyone I knew who used it. I got high once that fall, in November, and both the fact that I had gotten high and that I had tried to hide it from Djuna was the biggest fight of our relationship. She moved out in December.
Over the summer I had taken an HIV test at the Sydney Borum Jr Health Center. I had convinced Djuna to get tested at the same time, as though it would somehow cement our relationship instead of revealing its fissures. She had never used needles, had never done heroin. She wouldn’t even take Advil for cramps.
The counsellor seemed frustrated with me for being so stupid as to put myself at risk by injecting drugs. He told me that it was a bad idea to get tested every six months because it led to a dangerous sense of fatalism. He said it was better to just stop your risky behavior, which in my case was needles. He discounted every other risk factor — including a broken condom a few months before. I got the sense that he had divided risks into necessary risks (which seemed to mean monogamous sex with protection) and unnecessary risks. He didn’t suggest that I try snorting as a safer alternative (a standard harm reduction suggestion); he seemed to think he could shame me into quitting heroin. I got stubborn and sullen and didn’t get an HIV test for more than a year after that.
Sometime in October, I wore my favorite shirt to Virology 201. It was an extra-soft waffle-weave thermal. Very grunge. I had put in darts to make it more form fitting and had cut off the too-tight collar and given it a boat neck. I had never gotten around to hemming the neck and it was fraying badly. But the worst problem with the shirt was that the cuffs had a smattering of blood stains, gone black because I had used chlorine bleach instead of peroxide to try to get them out. After shooting up (while wearing my favorite shirt) I had pulled the sleeve down too quickly and the cuff had soaked up five drops of blood. Like Blackbeard’s key, the blood stains would not come out and they were all the physical evidence that someone who knew what to look for would need.
I realized my mistake after I was already sitting down. In all of academia, a doctor who studied HIV was the person most likely to be familiar with injection drug users. Dr. Sodroski gave me a sharp look which turned quickly into what I could only read as resigned disappointment. In that moment, I was sure that he knew.
Even if Joseph Sodroski suspected I was doing drugs, academia didn’t seem to have the tools to do anything about it. I think the assumption was that if someone had a real drug or alcohol
problem, they wouldn’t be able to keep up and would just drop out without any intervention on the school’s part.
In December, we chose topics for our final projects, which would take the form of a research proposal, practice for a life of writing grant applications. I chose Hepatitis C as my topic. To injection drug users, it seemed almost scarier than HIV. Testing wasn’t widely available, bleaching your needles didn’t seem to help, and no one really knew the death rate. But it had never come up in Virology 201.
I assumed that I could just find some paper where they made a small discovery by growing the virus in the lab, look at what they said they would do next, and propose to do that. It was a strategy that had gotten me through my undergraduate classes. But the more I read about Hepatitis C, the more frantic I got. Nobody could get Hepatitis C to grow in a lab. I spent hours in the med school library and got nowhere, because I didn’t know where to start, but also because the papers I was looking for didn’t exist.
What I should have done, as soon as I realized I couldn’t complete the assignment, was to ask the professor to find me a project that he thought I could manage. But I couldn’t bring myself to do it. When I had originally asked to take the class pass/fail, Dr Sodroski had said it wasn’t possible. He couldn’t have an undergraduate in his class who wasn’t doing the work. I felt like if I reminded him how much I was struggling, he would suggest I drop the class, which would mean I wouldn’t be able to graduate that semester. And even if he didn’t, if I met with him one-on-one I would not be able to escape the full force of his disappointment.
I decided to just try to fake my way through, present my findings and propose trying to find high-risk but HCV-resistant people and study them. The assignment was to design an interlocking series of testable hypotheses, and my proposal did not in any way meet those criteria. It was a fishing expedition with no hypothesis and nothing testable.
In January, I stood in front of the class, in my best wool slacks, with a totally inadequate stack of overhead projector transparencies. My face felt hot and tight with shame. I was shivering with curdled adrenaline. I presented all the information I had found about the epidemiology of Hepatitis C, about what kind of virus it is (small, RNA, enveloped) and about the failure of various tissue culture models. With each transparency, I was digging myself deeper. A grim march towards inevitable failure. It was the single worst public speaking experience of my life. I concluded with my insufficient research proposal.
“So,” Dr Sodroski said, “basically a longitudinal study.” I felt myself flush with the embarrassment of exposure.
“Yes.” I said and didn’t elaborate.
I think there may have been another presentation after mine. If so, I sat through it numbly and absorbed nothing. After class, I left, exhausted and hopeless. I still had one more big assignment (my undergraduate thesis) to turn in before I could graduate. It was due in two days, and I knew as soon as it was turned in, I could start tracking down the drug connections I had been avoiding all semester.
I don’t think Dr. Sodroski could have failed me – I attended every class and participated, however incompetently, in every discussion – but he would have been justified in giving me a C, enough to push my GPA out of the honors range. Months later, a B in Virology 201 appeared on my transcript. It felt like mercy. Or pity.
Artist Statement
I have had a lot of identities: nerd, queer, druggy, and now nerd again. I can never quite get the parts to fit together, but I can worry at the uneven seems until I find something true. I wrote “Research Subject” in response to Mattilda Bernstein Sycamore’s call for essays on growing up with the AIDS crisis. I missed the deadline, but I still needed to tell the story. In 1995 I had a disorienting double vision of being both researcher and researchee, with no safe way to talk about it. From a distance of 25 years, and under a pen name, I have the space to reexamine a time when I made terrible choices, and to see how many systems were failing me and my friends.
I left academia 6 years ago and now work in biotech. I live outside Boston with my husband and two kids. My essays have appeared in The Manifest-Station, Typehouse Literary Magazine, Red Fez, and The Bi Women’s Quarterly. I am an alum of the Grub Street Memoir Generator, and I am workshopping a memoir about my early 20s. My website is elsawilliams.net.
