More readers share their stories:
The picture one of your readers submitted, of a section of the AIDS Memorial Quilt, had one of the panels I remember seeing the first time I saw the quilt, when I was 18 and I volunteered at the quilt's exhibition in Houston during the first national tour. It's the one with the Edward Gorey quote, "Last night it did not seem as if today it would be raining." That couplet stuck with me, usually making me think of the waves of grief that came with deaths of my fellow ACT UP and Queer Nation activists, my own partner in 1994, and a dear friend who survived to the age of the triple cocktail but who experienced nothing but complications from one combination to another until he died in 2000. It's only been lately that I've been able to see that the rain that comes upon us unexpectedly can also be a good thing, washing away pain and fear that we've carried too long.
What a great thread. However, there is one notable group that you won’t be hearing from: the people that are HIV+ and don’t know it yet. The CDC says that 20% of those infected aren’t aware of it. (How do they know that?) I was one of them for awhile and thought I’d share my story.
I first came out in 1979, well before anyone knew what was going on. As I watched the horrific stories unfold in the early '80s, I quickly adopted safer sex practices. But I was terrified about what I had done unknowingly in the years before. I finally worked up the courage to get my first HIV test in 1990. That was back in the day when you had to come back several weeks after your blood draw to get your results. The wait was agonizing. Thankfully, I was negative.
I would get tested again in 1994, 1997 and 2002. Each time: negative. Now this schedule may not have been as regular as experts would have recommended but it was better than most people I knew. HIV testing and status disclosure might be topics at dinner parties or gyms on the coasts, but here in the fly-over state where I live, I can assure you it rarely comes up, even between the best of friends. In my entire life, I’ve only had this conversation with five people. Most only admitted to having one test. Two actually said they had never been tested at all. And this is not a small town. About 3 million people live here. It’s a very easy place to be open about your sexuality. But not about your status. The stigma is overwhelming. I can’t even repeat the awful comments that I’ve heard from friends over the years about those few other "poz" guys in our city.
In 2006, I developed a persistent skin infection. I had several office visits to my long-time primary care provider to determine what was happening. Lots of exams and lab work. On the last visit, he tested me for HIV without my consent. His assistant summoned me to his office without any explanation. Once there, he handed me a piece of paper. The test was positive. He said, "I’m sorry. I can’t treat you anymore. You need to find a new doctor." My family physician for over 20 years shook my hand and said goodbye. I never heard from him after that day.
I spent the next two months dodging the State Health Department. My state, like many, has mandatory reporting procedures. Ours is called the "STI/HIV Surveillance Program" and boy, is that an accurate name. They left messages on my home phone and sent letters to my address. The last straw was when they started coming to my house to tape letters to the door. Luckily I was able to intercept them all before my roommates saw them. I finally agreed to meet with them in order to get them to stop (but that’s an entirely different story I won’t go into).
It took six months before I had the nerve to find a new doctor and start treatment. The good news: my CD4 count jumped into the 400s and I became undetectable. The bad news: my numbers for cholesterol, blood pressure and liver were off the charts and they continued to get worse. After two years of sneaking away from work for increasingly frequent medical appointments, I finally decided to file for FMLA so I could fit them in comfortably. I emailed our HR department asking for the forms. Within an hour, my boss sent a short email asking me to meet with her and our CEO the next day. At that meeting, I was laid off on the spot. "Budget cuts," I was told. I never even got to fill out the form. Now who knows what was really going through their heads but I always thought that it must be pretty obvious when an openly gay may in his late 40s comes in and tells you he needs some time off for a bunch of doctor’s appointments and exams. (I can’t share the name of the place I worked at but let me just say you’d be shocked if you knew. You’d recognize it right away as a major nonprofit organization.)
It took me awhile but eventually I found a great new job, with amazing insurance. I’m mostly healthy these days. No one knows about my status except my partner (who is also positive). Our families don’t know. Our friends don’t know. And more importantly, our co-workers and bosses don’t know. Based on the few incidents above, we will probably keep it that way.
None of our friends, or even just the people we see socially, will admit to being positive. Although surely the odds are that some of them must be. Have they still not been tested? Or are they like us, positive but terrified to disclose to anyone.
This Wednesday is National Testing Day (June27). I wonder how many people in my city will participate. One thing’s for sure: no one will talk about it.
More stories from readers at our Facebook page. For instance:
I remember visiting my only sibling in NYC when I was in my late teens. I was living in a small New England town and didn't know anything about AIDS – guessing this was around 1986. Suddenly I was meeting all these young men that were talking about the disease, talking about bath houses closing, talking about friends getting sick. I borrowed my brother's razor to shave my legs one day and he screamed that I shouldn't ever touch his razor. Took me some time to realize why he freaked out.
Over the years I became aware that these friends of his were dying or had died. I watched my own brother go undiagnosed for the next 10 years, getting thinner and thinner and blaming his health on everything from radical diets to parasites. He was diagnosed in 1997 and at that time could count the number of remaining T cells on one hand. Drugs have saved his life, have made him able to work, travel, fall in and out of love and get ready to turn 50 in a couple of weeks. My family didn't think he would make it to 35. Of course, without healthcare and suffering from this disease makes things tough. He has chosen to live in Brazil and receives all medical care and medicine for free.
I've known several people with AIDS. I have friends from London who asked me to host a friend who was was diagnosed in the late eighties. He had never been to America and wanted to visit before he died. I was scared. I called my doctor and asked for advice. My friends flew over with their pal. We gave him the royal treatment, saw NY, Phillie, & DC. We had an absolutely wonderful time. He put a human face on something I'd only read about in the newspapers. He died less than a year after he visited.
Less than a year later a very dear friend of mine died from AIDS. He had to come out to his family at the same time as telling of his prognosis. He died before he signed his will. Even though his wishes were clearly stated that his half of the house go to his partner, his family wouldn't hear of it force him out of the house. For me that was the cruelest act of bigotry I'd personally witnessed.
I separated myself from somebody I considered a good friend because she insisted, back then, that 'the gays' brought it on themselves. In a full-throated confrontation, I told her she was wrong … that these were people's children, brothers, uncles, nephews; people who were loved and contributed to our society. This woman, who was my parent's age, glanced at them and they shook their heads no and agreed with me. One of the proudest moments of my life, that my deeply conservative parents stood up for the side of compassion and dignity, not the flaming rhetoric of the day.
Yes, my life has been affected by AIDS. It took dear people out of my life way too young. It made me a grown up. And it made me stand up for my ideals and principles in a way I'd not done previously.