My HIV is 20: A Lexington Man’s Journey Living with HIV
My HIV is 20 this year. I tested positive in September 2004. It was my habit to get tested during my birth month, and start my new year with a clean bill of health. The day I tested positive was a work day. At the time, the AIDS Volunteers of Lexington (AVOL) was in downtown Lexington and I walked there during my lunch, assuming I’d test negative like all the other times I’d been tested. The test was new — rather than having blood drawn and going through the two week nightmare of waiting for results, AVOL used a saliva test, where a cotton swab was run around your mouth, followed by just a few minutes of waiting.
I don’t remember what was said to me by the volunteer after he told me I’d tested positive. I walked back to work, told my boss, and fell apart. She hugged me as I sobbed and then let me go home for the rest of the day.
Ben and Paul (not their real names), my two best friends at the time, were both HIV+, and both were my ex’s. I was lucky to have them when I tested positive. They helped me get settled in my new reality, and through those friendships I saw that being HIV+ was not what I was taught it would be. Though Ben started taking AZT when he was first diagnosed in the 1990s – 17 pills a couple of times a day – by 2004, HIV was no longer the disease of Kaposi Sarcoma and young men turning into skeletons. By the time I contracted the disease, living with HIV was akin to having diabetes – a manageable chronic disease. However, unlike diabetes, HIV was still a disease shrouded in fear, hyperbole, and misinformation. (I can’t think of another disease in which I would feel the need to use pseudonyms to talk about other people with that disease.) I talk a lot about being HIV+, and often don’t realize how uncomfortable it makes other people for me to do so. It is still another closet that I have to come out of when I choose to.
My relationship with Ben helped me get a doctor. After contracting HIV, Ben was referred to a Dr. Sam Matheny at the University of Kentucky. According to local gay lore, Dr. Matheny had worked with “Patient Zero,” the HIV patient to whom all HIV cases in the 1980s purportedly (and mistakenly) could be traced.
As Ben’s partner, Dr. Matheny and I knew each other fairly well. I often went with Ben to his doctor appointments. When I contracted HIV, Dr. Matheny offered to be my doctor as well. HIV and the care of those who have it has always been a matter of community. The LGBTQ+ community cared for patients, struggled for medicines, shared what medicines were available, and still today groups like Lexington’s Moveable Feast provide meals to homebound people living with HIV.
The medical wisdom in 2004 for people living with HIV was to undergo testing every 3 to 6 months, monitor their CD4 count and viral load, and delay prescribing medication until those levels dropped below a certain threshold. So, I continued to live my life. However, whereas before contracting HIV, I was sexually active, having sex NOW became difficult. I felt responsible to disclose my status regardless of the level of the relationship standing in front of me. It became clear fairly quickly that if I would simply shut up, I could continue the sex life that I’d had. I saw men having sex with other men who had HIV, but did not disclose it.
After several rejections, I started dating a young man, let’s call him Ken, who had been abandoned in Lexington and was living in one of Lexington’s homeless shelters. I helped him get a place and I felt grateful – yes, gross – that he would date me. I let him isolate me from my friends. He was emotionally and physically abusive. To cope, I started to drink. Alcohol was a great solution until it wasn’t. I was working two jobs, neither particularly well. The stress and alcohol began to affect my health. My CD4 count started to lower. Dr. Matheny decided it was time to start medication.
I started with a medication called Atripla, which was a combination drug made up of Efavirenz, Emtricitabine, and Tenofovir. One of Atripla’s most common side effects was vivid dreaming, and, indeed, I dreamed vividly. There were nights when I couldn’t tell the difference between having my eyes open in the dark and when my eyes were closed. It affected my sleep and my daily mental state, though also at the time I was drinking heavily. The mixing of Atripla with alcohol equaled a blackout that wiped my memory clean. If I wanted to remember something I would attempt to write it down in my journal or on a piece of paper for the morning, though many times, my “handwriting” while drunk was just a storm of squiggly lines.
Thankfully, Ken eventually moved west. Honestly that time period is such a blur of alcohol and abuse and Atripla, that I’m not sure of the dates. I got sober, for the first time, in 2012, and in 2014, I won the opportunity through my work to live in Greece for a month. Thanks to my connections to other gay men with HIV, I was able to get enough of my medication to take with me, so I wouldn’t need to somehow get my prescription refilled while in Greece. It was after that trip, that I asked my doctor to change to Genvoya, a drug similar to Atripla but without the vivid dreaming. Sober and on the new meds I was able to sleep.
On Atripla, my CD4 had gone up and stayed stable, and I had reached what is currently the most sought after effect of HIV medications: I’d become undetectable. Meaning that there is so little virus in my bloodstream that the virus is not growing in my body but is also untransmittable to my hypothetical partners.
Coming out in the 1990s, as a gay kid in a homophobic, sexphobic society, “safe sex” education focused on ways of not contracting what was then called STDs and not getting your girlfriend pregnant. There was not a coherent, intelligent conversation about being a homosexual in the high schools of western Kentucky in 1994, oddly enough. It was pretty well-assumed that I would “get HIV.” That as a gay person — amazing how the “kid” is dropped from your identity as soon as you come out, or your parents find out, or you are outed — it was my destiny or my punishment from the Christian god. I have been so used to the stigma associated with being gay living in Kentucky that I’ve been mostly surprised that I’ve not had to deal – much – with the stigma of being HIV+.
Dating, I tend to sero-sort, meaning I usually date only HIV+ men. It is just easier. The lack of information that gay men tend to have concerning HIV seems to come from a simple lack of experience with HIV. Most gay men today are so far removed from the “plague” of the 1980s and 90s. When I came out in the 90s, the only media that involved gay men typically centered around HIV, living with it, partners dying from it, Angel dancing in the streets with it. That isn’t the case now. It seems like that late 80s, early 90s world in which HIV/AIDS was constantly breathing down your neck just disappeared, and all those people who died from it never existed. I find myself jealous of younger generations who, even with all the problems we are currently facing, have that space to live in, and, perhaps, I had some hand in creating it for them.
Dr. Matheny has retired. I am part of the Ryan White Project at the University of Kentucky’s Bluegrass Care Clinic. My CD4 count is 1,141 and I am still undetectable. I still take Genvoya among other pills for other non-HIV-related health issues. I dream a regular amount. I’ve been sober for a handful of years and also single. There are commercials for HIV and PrEP on TV. Life simply goes on.