By J. Michael Murray
As soon as I made the phone call I wondered if I’d made a big mistake. I’d known others with AIDS who had volunteered in drug studies and hadn’t come out any worse for the wear, and I’d often seen ads in the local papers, but I’d never given much thought to doing it myself. Then something made me change my mind.
It had been about three years since I was first diagnosed as HIV positive. I still looked healthy and when I went to the physical screening I passed easily, with a T-cell count above 500, the required minimum. The study would be conducted at Evanston Hospital and would involve an 18-day stay, during which time volunteers would be given an antiviral drug that would hopefully stop the onset of AIDS in HIV positive people. We wouldn’t be told what the drug was, but I figured the government wouldn’t let them give us poison, so I wasn’t concerned. Plus we’d each be paid about $1,400. I wasn’t working, I had the time, what could I lose? I thought about all the friends that I’d lost–here was something I could do in their memory that they couldn’t do now.
But as the first day of the study drew near, I began to doubt my sanity. Just what was I getting myself into? I’d done many stupid things in my life. I wondered if this was the stupidest. I made up my mind not to go through with it. Then two nights before the test was to begin I changed my mind again. I went out cruising and this old guy greeted me from behind the bar. When he said who he was, I couldn’t believe it. Bill had been one of my friends’ lovers. Now he looked like he’d aged about three decades in a few years. We started talking, but I didn’t hear a thing he said. I tried not to stare, yet I couldn’t help it. He wasn’t the first person I’d known with AIDS, but I saw the disease progress in others, so their physical deterioration seemed more gradual. This was like seeing someone lose everything in a single blow. Bill used to be such a stud. He was 32, ten years younger than me. I then knew that I would do the test.
When I first walked into the clinic there was only one other person sitting in the waiting room, reading a magazine. We didn’t talk, but I wondered if he also volunteered for the study. Soon other people started coming in, some alone, others with friends who were helping them with their baggage. Everyone was smiling and laughing and looking healthy and robust–it seemed like we were getting ready for a Sunday afternoon boat cruise.
The door to the office opened and a guy in his mid-20s walked in. Let’s call him Greg (I’ve changed all the names). He said that orientation would begin soon and that all guests would have to leave. He then gave out the patient telephone number–just one number for all of us. I thought, “You have to be kidding. Good-bye to civilization as we know it.” Greg told us to look at the book where we signed in and to remember the number of the line that we had signed in on. I had signed in on line two so I would be the second person processed.
Our bags were searched for contraband such as cigarettes and porn–you just never know what a girl thinks she needs for an outing. Some of us had packed shoulder bags with the basic necessities; others had packed enough to outfit Evita Peron’s European tour. One guy had matching designer luggage and a send-off retinue of lipstick lesbians. Another guy brought along two months’ worth of dirty clothes. We were expected to share our rooms. I liked sleeping with guys, but usually it was in the same bed and they never brought their laundry.
I met my roommate Steve. Like me he was in his early 40s, and like almost everyone else in the study he was gay. He’d spent most of his adult life in San Francisco. After he found out he was HIV positive he went to law school, though he’d never worked as an attorney. He tended to do Katharine Hepburn impersonations–at any time and for any reason. He was six foot, blond, a nice-looking guy. We quickly became friends.
Greg called us for the orientation session. Most of the rules were common sense, dealing with basics like bathing (yes) and physical contact between the volunteers (no). We were expected not to disturb the other patients in the hospital, and we couldn’t drink anything with caffeine in it. Smoking was not allowed on hospital grounds. He told us that our group of 28 was the largest the program had ever handled. He asked us to be patient during any scheduling delays that might happen as a result. Then we experienced the first of these delays, as Greg had forgotten some of the paperwork that we needed to sign. Before leaving the room he loaded a tape recorder with a greeting from the program director. After he was gone one of the volunteers took the tape out and put in his own. When Greg returned and turned on the recorder, out came the Village People singing “In the Navy.” Greg looked at us and said, “You guys!”
That first night nobody slept much. A combination of fear, excitement, and nosiness kept most of us talking all night. It was sometime after midnight when the implications of our promise to give up caffeine and cigarettes started to dawn on us.
The next morning we found that a sinner had been removed from our midst because he thought he could fool the pee police. His urine test results showed coke in his bloodstream. I didn’t understand why anyone would waste his time and everyone else’s by volunteering for a medical study when he knew he wasn’t fit.
Next our blood was drawn, to establish baseline measurements, then we received out first dose. We were handed a cup with five tan pills the size of Ping-Pong balls and probably about as much water as any of us had ever consumed at one time without the benefit of spirits. (Though we were never told exactly what the drug was, we knew it was some type of protease inhibitor. Basically protease inhibitors are supposed to coat T cells with sugar to trick the AIDS virus so it won’t spread. If it can’t recognize a T cell, which is where it lives, then it can’t replicate. My guess is that the drug they gave us was the one that’s just been released on the market, called saquinavir, or Invirase.)
There was a certain protocol we had to follow. We had to down all our pills in 30 seconds, which was a challenge for some as the pills had the gastronomical appeal of road kill. (Thanks to the 60s and 70s–and actually most of the 80s–I don’t have any problem popping pills.) Each of us had to take his dose exactly one minute after the person before him. We then had to remain upright–either sitting or standing–for the next three hours so the drug could be properly absorbed.
Then they started in with more blood draws–ritualistic bloodletting–done by a nurse who wielded a needle like she was spiking a watermelon. The blood test would indicate how long the drug stayed in the body and at what levels. For the first hour and a half after our drug dose, they took blood every 15 minutes. Then every half hour for the next four to six draws, and eventually every two hours. It was pretty much over by midnight, until they started up again the next day. It worked out to be something like 20 blood draws one day and 4 the next–the final draw taken 48 hours after dosing. Somewhere between 16 and 17 draws I dubbed the unit Needle Park.
I can’t explain what it’s like the first time you see your blood marked “Biohazard,” when health workers will only come near you dressed as if for chemical warfare or outer-space exploration. I can understand their fear, but at the same time it’s hard to accept that I’m a leper.
The rest of that first day we hung out discussing subjects such as the new Oprah: should she gain the fat back and be happy? The fat majority won out only because we were louder than the skinnies. We wondered whether the hunky Dr. Bob, one of the attending physicians, had possibly enjoyed our rectal exams. We lost two of the younger hunks to Nintendo games that they took into their rooms to play with their bunkies, play Nintendo I mean. After that we only saw them at meals and for the ritualistic bloodletting.
By late afternoon we were taken out into the daylight to view the natives. In case you don’t already know, Evanstonians are a very highly civilized and educated subspecies. On our excursion we happened upon a quiet and refined lady making pottery. Her yard was ablaze with very tasteful examples of small brown kiln-fired women with twisted, tormented faces. She gave us a brief talk about her creations, but our minds were on how long we could stay out of Needle Park. The nurse corralled us before we had a chance to encounter anyone else.
That evening we had the first problem with the phone. One of the volunteers, Jeff, got a call, and the person who answered the phone yelled out for him by name instead of using his assigned patient number. He went nuclear, ranting about how his privacy had been violated. The rule that we were to refer to one another only by our patient numbers had lasted about 15 minutes. We started kidding about the patient numbers immediately, but Jeff loudly insisted that he not be addressed by name. Jeff was the only straight guy in the study, and I sensed he hadn’t yet told his friends or family that he was HIV positive. Most of the rest of us had been positive long enough that we were very open about our status. It wasn’t going to hurt us to hear our names called in a group of people who were in the same situation–there was no fear about what we were doing. I had a feeling that Jeff came into this hoping to be cured.
I thought he had overreacted to the phone incident, but I could appreciate what the disease had stolen from him. I also had to go through the fear of rejection. Though my mother is very supportive and my sister is getting better, my father won’t speak to me. I remember one friend who was scared of telling his family why he was dying. After he finally did, they sent flowers. All through the last days of his life flowers were being sent by people who never visited.
Before we retired, Nurse Zilla raised her sharp little fang one last time. Not bad for the second day: one dropout, one recess, one blowup, and 19 blood draws–let’s hear it for the home team.
By the third day most of us started talking a bit more openly and easily. We were a social group and could mingle with the best of crowds–after all, most of us had spent a lot of time in bars.
But two people started to get on my nerves. They had been assigned to the same room and became best friends. They decided their goal in life was to cut and dye everyone’s hair. I figured these two had only stayed in beauty school long enough to learn one cut. They brought one bottle of dye to complement it and performed their magic on anyone who would sit still long enough–not even the staff was spared. But no one seemed to notice the limits of their talent. Except me. I didn’t let them anywhere near my head.
Since our second and final drug dosing wasn’t scheduled until the end of the study, during these in-between days life was pretty quiet and carefree. Except for a couple of minor skirmishes over the phone, all that was heard was the quiet snip of hair shears and some pleading for walks to view the Evanstonians. We found an ally in one of the staff. Jenny, a victim of the infamous cut, was thrilled with the excitement around her normally dull workplace. Like the rest of us she was infatuated with Dr. Bob and would gladly take us outside to discuss him. Dr. Bob was very friendly to us as a group. Several of the volunteers in the group misread his actions and started openly flirting with him. One volunteer informed the good doctor that there was a lottery for his attention and that the volunteer would gladly meet him after the study was over and show him just how much fun he could have with him in, of course, a safe way. Dr. Bob declined the invitation gracefully and thereafter was a little more careful about his interaction with the group.
We also had an insatiable appetite for movies. By now we had split into several cliques and there was little mixing. Those in the front room couldn’t get enough of Longtime Companion, whereas my group liked such lighter fare as The Women or The Four Feathers.
I brought along several John Waters movies, including Hairspray with its “Alternative Miss World Contest” and Little Nell singing “I Want to Be a Beauty Queen.” After a few viewings some of us decided to have our own Miss Bloodletter contest. As inmates of Needle Park it was impossible for us to raid a Salvation Army for any of the necessary accoutrements, so we did the next best thing: we raided the linen closet. A couple of tucks here, a couple of tucks there, a few safety pins, and some well-placed staples turned a sheet into a fast designer original. Hair was also by Hospital Linen Services (the wonder twins were of no use here as this required a lot of imagination and skill). I took a towel and wrapped it around my head to form a turban.
That night we held the first and perhaps the last drag show in the history of Evanston Hospital. The talent was raw, but what it lacked in taste was made up for in energy. We had Dr. Bob and the nursing staff judge the competition, since we believed they would be a fair and impartial panel. But I have always wondered how Jeff, the only straight guy, managed to win.
The next day one of the hairdressers, Kurt, had an allergic reaction to the medication and started getting red spots all over. He had to be removed from the drug study and monitored for any other reactions. Others also showed slight reactions, but what most of us experienced were gas attacks that could have fueled a small midwestern town. A group of people would be standing around talking when all of a sudden everyone would break and run for his life. These attacks happened without warning–all you could do was hope for the best.
As a group we were all reasonably healthy. I had friends who experienced reactions to their medications, but this was the first time that I actually saw somebody having one. I started to get an idea of the fear that a change in medication could cause in a person who’s dependent on the drug or who has put a lot of faith in something that he doesn’t really understand. When you start to take one of these experimental drugs doctors will try to explain all the possible reactions that can take place in your body. You’re hoping that this might be the magic bullet, and then all of a sudden you’re experiencing problems and this is not the result you wanted.
These minor reactions brought some tension to the group. There was grumbling about how the testing was being done–whether it was being compromised by the apparent disorganization. There were several breaches in timing, and in one instance the time of a blood draw was almost missed. We were very aware of the timing because of the tenderness in our arms. We didn’t want the study ruined because of stupid errors.
Some of the volunteers vented their frustration by disobeying the rules, like smoking cigarettes inside the hospital. Others would give anyone who took us outside a hard time by wandering off and refusing to stay together as a group. Supposedly the security guards were reporting us daily to the hospital administration, saying that we were putting the program in jeopardy. At one point Greg threatened that we would lose our smoking privileges if we didn’t start behaving.
In our boredom we devoured any movie we could get our hands on. One of the staff brought us a copy of The Sound of Music. After we watched the movie we went outside with Greg on one of our afternoon smoking runs. We were crossing the front lawn of the hospital when Steve, aka Katharine Hepburn, started humming “The hills are alive . . .” That was the starting gun. We were off and running in every direction and singing at the top of our lungs; some were turning cartwheels across the vast green lawn. There were at least a dozen Julie Andrewses in fine form. Traffic stopped as passersby were astonished by the grandeur and majesty of our impromptu performance. Greg said “You guys!” and the security guards complained to the administration that we were destroying hospital grounds, but there wasn’t a single pair of pumps among us to punctuate the terra firma.
In close quarters you get around to talking about everything. We talked about problems people were having at work because they were positive, how some hadn’t even told their families yet, and how we felt about people thinking we deserved this because of the lifestyle we had led. It’s standard talk among people with AIDS. We also talked about the future. We had plans and we had goals. No one was going to lie down and die just yet. We had realistic expectations and we all knew what could happen because we’d watched it happen to our friends and lovers. Most of our plans involved just getting through each day; we would think about the day after that when it got there.
It’s hard watching your friends and your body die in bits and pieces. You wake up in the morning and look in the mirror to see a spot that was not there the day before, and you wonder what it means. And then you listen to some medical professional tell you that it’s just another manifestation of a problem that can be dealt with in a rational way. But you’re the one who looks in the mirror in the morning and hopes to find everything where you left it. The professionals see it all the time, but it’s different when it’s happening to you.
I had an OK self-image, but after the onset of the disease I took a look at myself and didn’t like what I saw. When AIDS starts to attack the body, one of the effects is the loss of muscle tone. I now have a gut where my stomach used to be and my ass is flat where there used to be a nice curve. My skin is covered with ugly sores and spots instead of the nice tanned color it used to be. I never worried about my appearance that much because I knew that I was never a looker. But now I look at my body and it’s upsetting to see it, let alone to think of how it appears to others.
We were reaching the end of the drug study. Our patience was wearing thin and there was a lot of bitching and complaining. It had become physically painful–our arms were sore from all the blood draws. None of us would discuss the fact that the next day was the last round of bloodletting. Instead we unconsciously held our arms. We tried to focus on why we were doing the test. Kurt was still with us and the medical staff was still monitoring him. But we felt that the only reason he was still around was for fear of a lawsuit.
The last day of the blood draws, the second-to-last day of the study, started just like the first two big days of bloodletting. Some of us were ready and waiting to get the whole routine over with, but some seemed to be sabotaging the process by being late for the dosing and the blood draws. The staff seemed especially stressed about protocol; everything had to be done on a very specific schedule. I was the first in line, but I was getting irritated with the other volunteers who were lagging behind. Greg appealed to us to keep on the schedule. Everyone’s nerves were on edge. No one was watching television or playing games–we just sat around looking at one another.
Later in the afternoon a few people started talking about rejoining the rest of the world. We could smoke when we wanted, swill coffee, and also have $1,400 to spend. Some of us started to fantasize about the money. Our plans were not practical: there was talk of shopping sprees and elaborate vacations. We planned on visiting our favorite Chicago bartender–who everyone in the gay community seemed to know–and forming a committee to resurrect a drinking experience we referred to as choir practice. For many years a lot of us in the local gay community had gotten drunk on Saturday mornings under the pretext that we were going to choir practice. We agreed to have a big blowout and celebrate the successful completion of the drug study and the fact that no one had been murdered in the course of it. We invited Dr. Bob and the rest of the staff.
I started to count down the minutes. All night I was annoyingly repeating the countdown to anyone who dared to glance in my direction. Thanks to the mercy of the group I lived through the night.
None of us slept very well and most of us were up long before the staff arrived. There was a lot of horseplay and almost a party atmosphere. Several people had already packed and were waiting at the door for the staff to come in and start the last day. All that stood between us and freedom was one final blood draw and a good-bye physical from Dr. Bob. We surmised that he just couldn’t let us leave without one last rectal exam. The blood draw was done, and then we were given the best institutional coffee we’d ever tasted.
No one seemed to remember that we’d agreed to give exit interviews about our experience and what could be done in the future to make volunteers more comfortable. Someone suggested that studying the Spanish Inquisition might help.
At last they handed out our checks, and we made a mad scramble en masse to the nearest bank, only to find out that it didn’t open for another half hour. There we stood with checks in hand for the longest 30 minutes of our demented little lives. When the bank opened we made a scene that looked like a Marx Brothers comedy, each trying to make it first to the teller. Then we went our separate ways. It was beautiful outside. It was spring.
Art accompanying story in printed newspaper (not available in this archive): illustration by Andrew Epstein.