Time certainly flies these days. I don’t know if that’s true for everyone though any number of friends and acquaintances have asked me recently “Doesn’t it seem as though 2023 has gone by really fast?” so it’s not just me. For myself I attribute it mainly to aging but some years do seem to pass more quickly than others. 2020 seemed to go on forever thanks mainly to COVID.
But here it is, World AIDS Day again. I generally post something for World AIDS Day. I joined Daily Kos in July 2006 but didn’t post my first story until World AIDS Day of that year. Subsequently it became a habit. There are some semi-selfish reasons. I seriously doubt I’ll be covering much new ground this time but the last time I didn’t post anything for the occasion I felt rather guilty and as though I’d been somehow seriously negligent.
Continue past the fold and, if I can’t say anything particularly new and insightful, perhaps I can at least provide some context for what I’ve written before and why I weigh in the way I do in comments on health-related topics. If you know me you know that there will be a link towards the end of the story so I hope you’ll read (or at least skim) all the way down.
In the title I referenced not just the day but the first week of December. It’s entirely fortuitous that World AIDS Day happens to fall when it does in my personal emotional calendar but the coming week is full of anniversaries for me. On December 4th it will have been 31 years since my partner Mario passed away from AIDS-related pneumonia. On December 5th it will, presumptively, be 43 years since I contracted HIV. My World AIDS Day story for 2010 chronicles the latter. (As I noted in that particular story it appears I contracted HIV three days before John Lennon was murdered in Manhattan.) I was 29 years old at the time. Although coming completely out of the closet would take another 15 years or so I was out as far as socializing; I’d had a couple of boyfriends. I sort of had a boyfriend the night I contracted HIV and I sort of didn’t. It was fuzzy; ours had become a long-distance relationship and he was heading for a bottom with alcoholism (he got sober in January; we split up in March) and I’d been dumped by a different guy the Monday after Thanksgiving.
I recently heard someone of my acquaintance say that he had entered a study in 1983 or thereabouts that tracked a group of gay men for a number of years; in fact I think he said the study was still on-going. I need to reach out to him to get some more specific information but he did clearly say that according to the study of the cohort of gay men who contracted HIV in the early 1980s about 97.5% have passed away. What this means is that I’m pretty damned lucky. Most of most of my friends were not.
I turned 30 at the end of May. It was not a happy birthday for me; not because I thought turning 30 was a big deal but because as many a young person has thought when finding themselves single at such an age I assumed that I was doomed to remain that way forever. On June 5, 1981 the CDC’s weekly Morbidity and Mortality Report included an item about a group of gay men presenting with illnesses normally seen in the elderly or in those with severely compromised immune systems (and incidentally, very little was known about the immune system at the time, much of what we’ve learned since was learned in the course of combating HIV and AIDS). The contents of that report appeared in the New York Times over July 4th weekend of that year. Those familiar with the 1989 movie Longtime Companion may recall that the opening scene, on Fire Island, shows copies of the New York Times open to the article describing the CDC report.
Around that time the guy who’d dumped me after Thanksgiving decided he wanted to try again. He turned 22 on July 6th; our renewed relationship was his birthday present.
Like me his name was Bob. I was “Big Bob” and he was “Little Bob.” I tested positive in July 1985; Little Bob tested positive a few months later. The timing has been lost to imperfect memory. We began splitting up for good early in 1986 but I think he got tested before then. It’s tough to say whether I infected him or not and since he passed away only a few months after Mario did there’s really nobody around who could give any better chronology. Suffice to say that at the time we were infected with HIV nobody knew such a thing existed and condoms, we used to say back then, were for straight folks.
By the time of that breakup I had lost a number of friends and acquaintances to AIDS. One died in New York where I no longer lived, another in Baltimore and I didn’t hear of his passing until a while after; his was one of the first AIDS diagnoses in the City of Baltimore and he passed away the day after being diagnosed. The first AIDS memorial I attended, soon to be followed by many others, took place on my 35th birthday in May 1986. The person who’s memorial it was was the very first person I met when I moved to DC; he was also a colleague and for a time a neighbor. He took me to my first 12-Step meeting. Jim was diagnosed in 1984. Around that time another of my colleagues took early retirement; nobody dared say he had AIDS but he did and he passed away before Jim did. There was a short memorial for him in the office and even then NOBODY said he’d died from AIDS. Jim to his credit, even though he’d been closeted during his active employment, made sure everyone knew why he’d had to retire.
Bob and I were fully broken up at the end of June. In August I was informed about a job opening in San Francisco; in October I arrived in my now adopted hometown. I met Mario two weeks after my arrival. Unlike most of my previous relationships it wasn’t love at first sight. We knew each other casually and after a while somewhat better. By the time he expressed a romantic interest in him we’d been dating for a few weeks, a fact I was blissfully unaware of. Otherwise I’m sure my expectations would have wrecked it. And even after that we kept it casual for another couple of months. We officially got more serious right around San Francisco’s 1987 Pride celebration and approximately a year after my relationship with Bob had ended.
I documented my relationship with Mario in detail in my 2011 World AIDS Day story. Mario passed away in December of 1992, Bob passed the following April.
Between the middle of 1992 and the end of 1994 I lost something like 30 friends, neighbors and colleagues to AIDS. Memorial services became part of my life beginning not long before Mario passed away. As his survivor and executor of his will I was tasked with organizing his memorial service. He was raised Roman Catholic and considered himself a “recovering Catholic.” There is a very large Roman Catholic church in the Castro. Many of the congregants are LGBTQ but he’d asked me not to have his memorial there. Unfortunately the place he’d asked me to have his memorial was booked up for several months and I was strongly advised not to wait. So with hopes of forgiveness from beyond the grave his memorial took place at the Catholic church anyway. When Bob passed away there was a memorial for him in Trenton where he’d grown up. I didn’t attend that one; I wasn’t invited and I assumed his siblings would NOT be happy to see me. But there was a memorial for him in DC which I did not organize but which I flew back to DC for. It was held in the very room where I’d attended my first 12-step meeting.
At some point I found that I simply could not tolerate any more memorial services or funerals. The impact was so severe that even now I avoid those things unless I feel that I absolutely must be there.
So what did I do instead? I volunteered; I also in a manner of speaking donated my body to science.
The San Francisco AIDS Walk debuted in 1987. In 1988 Mario and my mom and I walked together. Mom continued walking until she’d completed 22 AIDS Walks; she became my inspiration. I walked a few times more but then found other ways to volunteer and fundraise. When the Names Project AIDS Memorial Quilt was displayed in full for the last time on the National Mall in 1996 I was a volunteer. I spent time giving information, helping people find quilt panels for their loved ones, holding them while they cried and finding panels for friends I had lost touch with. That was the hard part but it was well worth it.
Even before HIV came along I had taken part in a medical study. In 1978 I was recruited by the volunteers at New York’s Gay Mens’ Health Clinic (which I guess has been absorbed by Gay Mens’ Health Crisis or GMHC) to take part in a clinical trial for a vaccine to prevent Hepatitis B, which at the time was endemic in the gay male community. For the next six years I had blood drawn quarterly. After I moved to DC the blood specimens had to be shipped back to New York as there was no study arm in DC. It was a double-blind study and nobody knew whether they had received the actual virus or not. It turned out that I initially received a placebo but the vaccine turned out to be spectacularly successful that the study was unblinded and all of the participants who’d gotten the placebo were vaccinated. Being in that study turned out later on to provide me with so much beneficial information.
When I got tested for HIV in 1985 it wasn’t because my doctors thought I had AIDS. In May of that year I’d been hospitalized for a flare-up of ulcerative colitis. My doctors wanted to assess my treatment options and needed to know my HIV status. The test had been released merely weeks before. “HIV status” was not even a concept at the time. My initial results were lost; I got better on the standard treatment for ulcerative colitis though it took a while. My doctor asked me if I wanted to get tested again just to see what the results would be and I decided to go ahead with it. That’s how I found out I had HIV. There were no protocols for delivering test results at the time. He called me at work to tell me the news. At the time it was believed that possibly as few as about 15% of people who’d contracted HIV would progress to AIDS and that’s what he told me. That rosy view was abandoned by the end of the year.
After I moved to San Francisco I enrolled in a study at UCSF Medical Center designed to determine the effects of stress on immune function among gay men with HIV. The study was not really a medical one; it was run by two therapists, both gay men and both HIV-positive and ran as a support group with various activities (there was a weekend retreat, yoga classes, and a few other things I’ve since forgotten). The study was created before the first effective medication for HIV became widely available and the study was part of an effort to find non-medicinal ways of improving the chances for survival with HIV. In the end it proved that stress reduction was helpful in immune system function though only as part of a broader strategy when it came to managing HIV. Of the fifteen people in that study I believe that I and one of the people who ran the study are the only surviving members.
When AIDS first appeared some of the Hepatitis B vaccine study centers, notably UCSF and UCLA, conducted organized studies of the vaccine trial cohort to trace early HIV infection. The New York branch of the study didn’t do any organized work with vaccine study participants but were willing to test participants specimens at their request. I happened to be in New York and visited the trial administrators, the New York Center for Blood Diseases, now know as the New York Blood Center. They gave me the protocol; I wrote them a letter. A few weeks later they sent me a letter stating that the first positive blood sample had been drawn on May 29, 1981. I didn’t realize until quite a few years later that the flu I thought I had had in December 1980 was most likely the effects of contracting HIV.
I was reluctant to go on HIV meds. Mario had been put on AZT immediately after testing positive. He didn’t like it. There was nothing else. After a couple of years and finding an HIV specialist to serve as my primary care physician I was told and shown that my numbers were declining so I reluctantly agreed to start on AZT sometime in 1991. I actually tolerated it reasonably well and did provide a noticeable benefit.
Studies for protease inhibitors began in 1993 or thereabouts, not long after both Mario and Bob had passed away. My doctor recruited me for a study on first protease inhibitor to be approved for use, a drug known as Saquinavir. It involved taking six large softgel capsules four times per day. Though there weren’t any food restrictions which was good. I took the drug for a year or so after it received full approval. It was considered somewhat weak and in fact was one of the reasons why a “cocktail” of HIV meds became the standard for a number of years. I switched to another more powerful protease inhibitor called Crixivan. Its side effects were rather unpleasant; they included facial wasting, constant feelings of thirst, and kidney problems. People on Crixivan wouldn’t get kidney stones so much as “slush” that was less painful than stones but most definitely problematic. I didn’t take it long enough for that to happen to me.
One of the more interesting drugs I began using while it was still in trial was Sustiva which I began taking after going off of Crixivan. Every month I’d go to my doctor’s office and pick up my supply, along with the amino acid L-Carnitine which was supposed to mitigate side effects. Sustiva actually worked spectacularly well; it was the first HIV treatment known to cross the blood-brain barrier and is the reason why a form of dementia someone common on those who developed AIDS early on has subseqently disappeared. It also was the first drug to be able to bring HIV viral loads to the undetectable level. I took it for over fifteen years. It had some odd side-effects that included intense and constant dreams. Some people, particularly those particularly prone to severe anxiety, couldn’t tolerate it. The side effects eventually had me stop it in 2015. By then there were replacements that worked at least as well.
Before Crixivan I had enrolled in a study for a drug called Preveon. 1998 was another pivotal year for me. I came down with some sort of viral pneumonia in June while I was already on Preveon. I managed to recover in time for a long-planned trip to Europe; first Paris because...well...it was Paris, then Amsterdam for the Gay Games and finally Barcelona. I was still getting better when I departed. Because I’d lost a bunch of weight my doctor only half-jokingly recommended that while I was traveling I have dessert with every meal. I wasn’t going to question her expertise, right? The trip was a good one but towards the end I felt almost like the pneumonia was returning. I went for a blood draw my first full day back home; the following day the study folks called and told me to stop taking Preveon immediately. I was on the verge of kidney failure. The study was terminated not long after due to the kidney toxicity failure. Once off of the drug I felt better within a couple of days. The drug was later approved at a much lower dosage for treatment of Hepatitis B.
The angst over having been seriously ill for the first time since the 1980s prompted me to make some serious decisions, the most important being, as it turned out, signing up to participate in the 1999 California AIDS Ride. As many here know I have seldom been off of a bicycle since then.
I retired at the end of 2015. The plan had always been to retire as early as I thought I could afford to but in addition I’d noticed some changes in my thinking. My professional license required me to take continuing ed classes periodically. The final round of them I found challenging because I couldn’t retain the content the way I’d previously been able to; that was the final straw. I let my license lapse rather than do another round of classes. That had been the plan all along but I now had additional reasons. The following year I was invited to take part in a study on cognitive impairment among long-term HIV survivors, a somewhat common issue. That involved a rather extensive cognitive evaluation. At the time they told me I didn’t show any evidence of measurable impairment though that didn’t mean I didn’t have any. I received invitations to be tested again; the third time, in 2022, I tested as mildly cognitively impaired. Apart from minor memory issues I seem to have lost some of my problem-solving capacity. Some of it is simply aging; some of it is not. Fortunately HIV-related impairment tends to plateau after a while and for most people is not severe. Still it bothers me.
Finally, there is my big, big volunteer effort that began in 1998 and continues up to today. That first California AIDS Ride turned into what amounts to a second career. In 2002 the California AIDS Ride became AIDS/LifeCycle. I’ve participated every year except for that 2002 ride. I’ve raised a ton of money (almost $210,000 at the moment). I’ve helped lead training rides every year since my second year. In 2020 I trained until COVID canceled training and the events and managed to keep raising money even though there was no actual ride. In 2021 I participated in a substitute event called TogetheRide that involved a self-challenge to bike a certain number of miles and using that to raise money. Because I turned 70 that year and because not that many people took part I was a very successful fundraising guy that year. In 2022 I returned to riding though I managed to contract COVID during the week of the ride. In 2023 I rode again, did NOT contract COVID, and found myself on the list of top fundraisers. And of course I’m riding next year and I want you to donate on my behalf. Here's a link to my fundraising page.
All of this happens because it’s the best way I can think of to deal with the griefand trauma, of losing so many people I cared about in the 1980s, 1990s, and even the early 2000s.