HOW AIDS HAS AFFECTED ME
& books and movies that have given strength


I am the man, I suffer'd, I was there.
 [Walt Whitman]


May you of a better future, love without a care and remember we loved too. As the shadows closed in, the stars came out. [Derek Jarman]



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Hugh Steers (1962-1995)


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Blue Rug 1994 Hospital Bed 1993
Een kruisje voor Willy,
die de twintig niet eens haalde
Een kruis voor Andre,
de koningin in al z'n majesteit
Een kruisje voor Nono,
die zei, o nee, ik krijg het nooit
Elk van hen gedood door liefde
Maar nog niet iedereen was dood
En ik had het overleefd
In m'n droom had ik het overleefd 		A little cross for Willy,
who had not even turned twenty
A cross for Andre,
the queen in all his majesty
A little cross for Nono,
who said, o no, I will never get it
Each one of them killed by love
But not everyone had died
And I had survived it
In my dream, I had survived
I don't quite know how to describe how the deaths of friends and others have affected me personally. And also not how to express the deep hurt and rejection I felt (again) because of the realisation that I belonged to a marginalised group whose members' deaths didn't matter to most in society. Faced with the contempt unleashed by the AIDS epidemic I tried to be brave and with a gay flag and a smile I faced the bigots who argued that I deserved to die. I pretended that their hate didn't affect me, but that wasn't quite true.
What made it all especially hard was the feeling of incredible injustice that this tsunami hit my generation (especially the guys a bit ahead of me) after we had endured such a tough struggle growing up gay and when "in search of love ... at last [we had found] that low door in the wall, ..., which opened on an enclosed and enchanted garden, ..., not overlooked by any window, in the heart of that grey city." (From Brideshead Revisited.)
And I also do not know whether I can describe what it was like in terms of the fear of becoming HIV positive myself for at least fifteen years (although I do hope to add that story to these pages). I dated and had sex with men who I knew were HIV positive and had sex with many of whom I didn't know their status. I had a slow start, but I had became promiscuous when I moved to San Diego. Moreover, I was often single after my Pittsburgh days. And after working hard during the week I wanted to wake up next to somebody on Sunday morning. This meant going out Saturday evening which actually was quite nice in San Diego, also because as a tourist town there were always new faces. And all but one of the many relationships I was in during my California days were not exclusive. Infection rates were so high in San Diego, that my Pittsburgh friends warned me I was moving into a war zone. Completely safe sex is tricky, and the anxiety during the two-week waiting period following the biannual tests was excruciating. Every single time.
One day, I might find the strength and energy to write about painful memories. For now, those are summarised by just a poem and some paintings. The poem is from the death notice card of a Dutch friend of mine, René van Krimpen (apologies for my translation into English). Hugh Steers' paintings are beautiful, but also an insanely touching visual representation of the love that accompanied the suffering (unfortunately for quite a few there was just suffering). I own one of his paintings, Fallen Armoire, and that is my most treasured possession. Hugh was just a couple weeks older than me which brings out a bit of survivor's guilt. So many loving, wonderful, beautiful gay men who were better persons than me. All dead. So many.
Understanding what we went through is probably impossible when you didn't live through it. I still carry it with me; at times writing down names in Facebook or Google and then getting upset that nothing shows up. As a way of remembrance, I still feel the need to get drunk (occasionally), listening to the "Theme of the Elephant Man" on repeat, the song that gave comfort to fellow Apollo member Frans Stein during the last year of his life (1988). Soldiers may understand what it means to see so many wonderful young friends die, although a soldier's death is typically not accompanied by the yelling of religious people that they are sinners and that they deserve this suffering. For those who want to try to understand, I would recommend "Body Counts" by Sean Strub or the much more comprehensive "How to Survive a Plague" by David France , which is an excellent book despite its stupid title.

Mama's Kitchen, the San Diego charity for which I volunteered throughout the 90s delivering food to People with AIDS every Friday evening. 		*
For many years I did a North Park route with Dennis (my friend and mentor from whom I learned a lot about AIDS). Next, I did the same route with Felipe for a couple years. Felipe was the first friend whose (unofficial) gay marriage (with Jeff) I attended. Then I did this route by myself for a while (kind of tough).
The people we brought food to were referred to as "clients" which I always found weird. Calling them patients would be worse, obviously. But referring to them as clients wasn't right. You don't cry when it is a client that doesn't show up on your route sheet anymore. But I guess they didn't use a word like buddies to limit this kind of impact. Anyway, for lack of a better word, I'll keep using clients.
AIDS and HIV affected some very close to me just like it did to all gay men of my generation. But being a bit younger (and never had that many friends) I didn't experience what some experienced like going to a funeral on a weekly or monthly basis. So although crises did hit me, there were also tranquil periods. Then, I would spend most of the week in a straight environment in which AIDS almost never came up. And a week could very well mean going to the gym, surfing, perhaps falling in love or being lonely when the search for love had let to nothing yet again, and of course teaching. And a lot of hours doing research to further my career. So all quite "normal." Nevertheless, there was always Friday evening when I would do my route. At least in the first half of the nineties, our "clients" were mostly guys who were a lot like me: gay, reasonably well off, and usually single. Most were around my age or a few years older (I was in my late 20s going on early 30s) but some were a lot younger and some older. Although they resembled me, I knew their life had been so different during this past week and so would be their weekend. And in the back of my mind, I always knew that being careless for a brief moment (which wasn't likely for me but had happened) or little "accidents" (which also had happened) could very well mean that I would be really just like them.
The resemblance changed a bit during the second half of the nineties when protease inhibitors started to do their magic. The fraction of "gay guys like me" became smaller and there were more poor clients. In the first half of the nineties, our clients would often be quite fragile and if they were not at home it usually meant bad news. In the second half of the nineties, they could simply be out and about; even though it always was the case that you were only eligible if you had been seriously ill at some point in time. And since we were not allowed to leave the food outside, it meant that during my last couple years I often brought some meals home which on Friday included a goody bag for the weekend.
At times, Mama's kitchen pulled me into quite unfamiliar environments and then I am not talking about fancy fundraisers in La Jolla with top restaurants participating. The following I remember well. One evening, very late, Dennis wakes me up with a phone call. One of Mama's Kitchen's clients had been arrested while traveling from Arizona into California while carrying the ashes of his partner or perhaps a friend (I forgot which). Apparently there is (or was) something illegal about taking ashes across state lines, but there may have been some issue with marijuana as well. In the course of the evening, he had been released with the urn. But he had no way of getting home (a poor dude with no money for a cab and apparently no friends with a car) and he was sitting in somebody's home where he couldn't stay for the night. It sounded very weird to me, but Dennis was the kind of person who simply says yes when asked to help out (he had been contacted by somebody from Mama's Kitchen). You might think that picking up this man is a one man's job. But there was a complication. Dennis' former partner had died not that long before. In fact, I think he was the first person I met in San Diego who was dying of AIDS. Dennis had used the inheritance to buy an insanely expensive Mercedes; a white sports coupe (I think he spent more than $100k but maybe I am making the story juicier than reality). And our friend in need was waiting in a very bad San Diego neighbourhood! And although Dennis was a pushover who couldn't say no, there was no way he would drive his baby to that neighbourhood. So he needed me to drive him. In my car! Nothing eventful happened. The lawbreaker turned out to be a friendly hippie who was immensely grateful to us and sat in the back of my car tightly holding a bag with the urn on his lap.
As a young kid, I was happy, optimistic and self confident. That changed in my mid teens (yes when I discovered I was gay). Since then I have been the kind of person that worries about everything and becomes easily depressed. So interacting with PWAs didn't come easy and volunteering took its toll. Of course, there were quite a few rewarding moments. And it was nice to meet other volunteers. I think I was most impressed by lesbians who really stepped up to the plate. A big motivation for me was that it could have been me who had become infected and I would have wanted to see queer brothers and sisters at my door. So in some sense a bit of a selfish motivation; willing to care for those like you. Interestingly, there are other selfish reasons to volunteer. I started with Mama's kitchen because my friend Darrel asked me to take care of his route when he was out of town (and as soon as I set a foot in the door they convinced me to stay). Darrel was a pilot in the Air Force and we had dated a bit. But he wanted to get out of the Air Force and do an MBA at Stanford University. He thought that his application would look better if he had volunteered a bit. And it did work since he was admitted to Stanford. To be honest he did have many other good qualifications. He also took one of my courses at UCSD and I wrote him a reference letter. Conflict of interest? Yes. But once in your life you should be able to break the rules for somebody you care about. While Darrel just volunteered for a couple months, I got stuck for years.
Finally, something interesting for my economist friends. Mama's kitchen had zillions of volunteers (definitely more than one hundred, and I would think more than two). In memory serves me well, then they only had four paid employees: the director, the cook, the clients coordinator, and the volunteer coordinator. Except perhaps the director, they were part-time jobs and none of the four were well paid. As for every charity, fund raising was a major concern. So now and then the question came up whether it would be worth it to hire a professional fund raiser. The drawback was that a good one would ask for an annual salary of at least $100k (say a quarter million in today's money). But it was believed that such a person would easily earn their own salary. After all, there were lots of filthy rich people in San Diego and even more in La Jolla. For me this was a no brainer and I always supported hiring such a person. But the overwhelming majority of volunteers was against. They were uncomfortable providing their services for free when somebody in the organisation was making so much money. So it didn't happen, at least not during my time at Mama's kitchen.
The AIDS crisis isn't over yet! At some point during the 90s, the protease inhibitor cocktail began to keep most PWAs from dying in the western world. But not all; illnesses during earlier years and the side effects of the earlier heavy medication can take a toll on a human's organs. And so there was one more casualty in the early naughties among my friends.
But what is even worse is that even in the rich developed world people still die of AIDS. Reasons are lack of knowledge (e.g. about the importance to get tested) and HIV stigma which prevents people getting tested. HIV/AIDS comes in very many forms and it is possible that you are basically healthy and then suddenly get hit by an infection which becomes fatal because you have virtually no T Cells left.
In 2021, a very sweet Dutch friend almost succumbed to the disease with less than a handful of T cells having never spoken to anybody about this and having never taken any antiretrovirals. Why? Possibly because it is just damn hard to have lived through the AIDS crisis, lost your lover, and never really have overcome the stigma of being HIV positive and/or gay.

What is essential now?
  • Get tested! Just google "STD testing near me." It is even possible to do some STD tests at home. HIV is no longer problematic if it is detected and treated. In fact, the drugs are so good that it will no longer be possible to infect another person as long as you keep on taking the drugs. That is, at some point the viral load is so low that your are "U=U," that is, Undetectable means Untransmittable. There are several drug combinations possible so if a particular drug gives you unpleasant side effects, then you can switch.
  • Check whether PrEP is right for you. PrEP (or pre-exposure prophylaxis) pretty much eliminates the risk of becoming HIV infected. AND IT IS AVAILABLE FOR FREE IN THE UK.
  • Reduce HIV infections by standing up against HIV stigma.
  • Support AIDS organisations to eliminate AIDS worldwide.
Educate yourself about HIV

AIDS FACTS (as of 2022)
  • Since the beginning of the epidemic,
    • around 85.6 million people have been infected with the HIV virus and
    • around 40.4 million people have died of HIV-related causes.
  • In 2022,
    • around 39 million people globally were living with HIV,
    • around 630,000 people died of HIV-related causes, and
    • around 1.3 million people became newly infected with HIV.