Keeping Secrets

I doubt if I'm gonna write this entire blog chronologically, but some of the details of the beginning of my life with HIV are probably best laid down that way as a sort of foundation. I'm still getting used to writing about this, too. I even wonder if there is quite a bit I don't remember any more, but maybe it will come back to me as I get used to looking back on it.

It took a while for me to get over the shingles. I managed to hold on to one of my jobs, but the other two I had to let go of. My doctor had told me that fatigue and stress would make the shingles worse anyway, so I decided to take it easy. I'd only told 4 people about my HTLV-III test: My roommate, my best friend and his boyfriend, and the lady at work who let me use her insurance. I heard about a couple of people I'd known at the bars who had died and there were plenty of rumors about who had "it." I remember a couple of guys getting out of a car next to mine, headed in to a bar called, "Broadway Country" and one of them was terribly thin and in a wheelchair. My best friend was with me and mentioned the sick man's name, which I recognized, but he didn't look like anyone I knew. I just avoided them.

I was trying really hard to put on weight. After a chubby adolescence, I'd trimmed down to about 125 pound (115 at my lightest) and I had been proud of being slender. Now I was terrified that people would think I had AIDS because everyone that was sick was going through wasting syndrome. There weren't any drugs available yet. AZT was about to come on the market, but when it was introduced, it may have killed more people than it saved, and the general word was it was to be avoided. Not that we talked to each other directly about it. Everyone was talking about AIDS, but not in personal terms. I was doing my damndest to look healthy: tanning, eating 4 Big Macs a day and going to the gym.

I found a doctor I could afford to go to without insurance who was also gay, and trusted within the gay community. This was about the time when the Center for Disease Control (CDC) had mandated that all medical records for individuals who had tested positive for the virus be submitted to their agency. My doctor was (illegally) coding the files of his patients in a way that we couldn't be identified if the files were subpoenaed and he was not reporting unless we authorized him to do so. During this time, the former mayor of Denver was trying to get support for establishing quarantines for gays who had tested positive and he had proposed issuing ID cards for those who had not. He wanted to lock up everyone who had the virus. There wasn't anything to protect people from being fired or evicted for being infected with the virus that causes AIDS, so it was common to see people's belongings all heaped in a pile in front of the brownstone apartment buildings in Capitol Hill and Broadway Terrace - the two predominately gay neighborhoods in Denver. There was a kind of unspoken rule that people didn't mess with someone's things, and that was a good thing, but it was also kinda surreal. Here was all the stuff somebody used to keep locked up just laid out for anyone who might come by and steal it, but you'd see the same stuff there for a couple of days running. We knew what was going on, and we knew we could be next. Still, nobody talked about it. It seemed like so much of our communication during that time was without words. Likewise so many of us died in almost complete isolation. There was the fear of being associated with someone with AIDS because of the uncertainty about all of the ways the virus might be transmitted, but also because of any speculation about just how close your friendship had been. And it wasn't just a fear of being ostracized - though there was certainly that - it was a fear of losing your job and your apartment and possibly even your freedom.

I'd like to say that the initial reaction was to band together as a community, but it wasn't. There was a sense of going through something horrible at the same time as other people around you, but there was so much fear. (There weren't any government programs either. Reagan wouldn't even acknowledge that there was an AIDS crisis.) Some people were still in denial about the prevalence of infection, some interpreted any efforts to contain the spread of HIV as an assault on gay rights, and the acceptance of gays within and outside the community was not strong. Internalized homophobia has always caused strife. Then as now, people may admit to certain degrees of gayness and revile all those who have more "gay" in them than they think is acceptable. Compounding the problem of separation in the community, it appeared that a greater number of the "bottoms" than "tops" were dying. Sometimes people would say, "It's only the nice guys that are getting sick." There was talk of the "AIDS personality."By this time, we knew that anal sex was one of the ways that you could contract the virus, but some people still thought you could only get it if you bottomed (and it's true, the susceptibility is greater) and this created a kind of fear or aggressiveness toward men who seemed like they were passive sex partners. They might have been nice guys, but they were treated like poison in public.

Within a couple of years, a private non-profit agency emerged that addressed some of the needs of those infected with what had been renamed the HIV virus (it's now called the Colorado AIDS Project, and it may have been then, too) and I read about it in the back pages of the local gay tabloid. They were available for counseling and support groups, but you had to call the number listed in the paper, give them your address and first name only, and they would mail you their address and the time of your appointment. There was no sign on the building, and no last names were ever used. I attended two or three different meetings with the same support group, but it was pretty awful. Everyone was scared, some were very sick, and I was afraid to get too close to them. It wasn't just the revulsion toward illness; I was started to close myself off from my feelings. These were all people who were going to die, so why would I want to open myself up to that kind of loss? Still, one man in the group did offer me some advice that was very helpful. I hadn't told my parents about my HIV status, and he was encouraging me to be open with them. He had grown children, and he had discussed his health with his kids. I thought my situation was different until he asked me, "If your Mom had cancer, would you want to know about it right away, or would you want her to wait to tell you until she was almost gone?" I never did talk with him about it again. I didn't go back to the group, but a couple of years later I ran into one of the guys I'd met there. He said everyone else was dead - including the facilitator. It was weird talking to him about it, 'cos I could feel him checking me out - just like I was checking him out - and wondering which one of us would be next.