This weekend would have been my father’s 67th birthday. He passed away in 1995 from AIDS related illnesses just a couple months before the life-saving proteas inhibitor cocktails were ok’d by the drug administration. I don’t usually mark anniversaries in his memory. I am usually a little melancholy around the anniversary of his death, but do everything I can to not make it “a day”, because I hate the idea of commemorating one of the worst days of my entire life. Some years I manage to not remember the date at all, some years I feel a little twinge, and some the grief hits me like a wave as if it were fresh. His birthday is usually a day that I pause and take note of, but again there is no ritual or ceremony to marking it out. The closest thing I come to with this is Passover, which is so intrinsically tethered in my heart to him, the incredible meals he and Rick would make, and the celebratory occasion-ness of that holiday. It is a holiday centered around the principle of not forgetting, of remembering things hard and painful, so that we can both appreciate the good we have and prevent repeating or inflicting pain on others. It is also when we ritualistically note plagues – in the written ceremony the ten plagues God visited upon the Egyptians, but most families also add modern troubles that plague the world. AIDS is not surprisingly a part of that list in our household each year; along with the erosion of public education, corporate greed, racism, domestic abuse, sexism, intolerance, complacency, conformity, sex trafficking and modern slavery, and poverty. This feast, that I’ve been hosting for almost two decades, is my annual homage to my father.
So I surprised myself when this year I made the choice to watch a documentary on KQED that I normally would have avoided, as a purposeful gesture of honoring my father for his birthday. “We Were Here” is a series of interviews about people who were here and in some way part of various aspects of advocacy, health care, or are typical of people who lived through the AIDS epidemic in San Francisco.
I was here. I was ten when the disease first made real ripples through the gay community in San Francisco. I remember very vividly the first time I became aware of it as an identifiable thing. Before that, I’d heard hushed worried conversations, sensed tensions and wariness, but nothing concrete enough to really catch my attention. My parents were hosting a party in the backyard of my dad’s 17th street apartment. The backdrop of which was the side of the Castro Theatre. I was, as was typical, the only child present and was, as was also typical, fully encouraged to participate in the conversations. I wasn’t shuttled off to a corner and expected to play or keep myself occupied while the adults talked. If I chose to do that, it would have been my choice – and also odd, because I rarely was more interested in toys than I was in being with the adults. My step-father, father, and one or two others were talking and something in their tone caught my attention. Someone in the urban family I was closer to than my blood family was sick. They were worried. There was “something” making people sick and no one really knew what or why and most troubling the doctors were baffled and the government was doing nothing. It wasn’t long after that party that I started to see my community wasting away and dying with alarming speed.
I don’t think I can ever adequately convey what it was like to be a child and teenager in the midst of a medical crisis that was killing people you loved in painful, horrifying ways – watching their bodies wage war against them, watching them go through the telltale stages from healthy and vibrant to skeletal and ghostly – all while the public increased and intensified the homophobia that already existed and made it that much worse. The general apathy toward the illness, the derision and disgust toward the victims, the fear and irrational ignorance about it, and the seeming approbation of the devastating affects on an entire community was chilling and maddening. I was helpless and angry – deep down in my bones angry.
I don’t know how many people I lost, I stopped counting pretty early on and at some point began to assume everyone I knew and loved and even didn’t know and didn’t love was going to succumb to this awful little virus. Hope was something I gave up without even knowing I’d given it up and maybe not even remembering what hope was. When hope returned in 1996 as the cocktail appeared to be working, I don’t think I was prepared for the pain and rage I would feel realizing that I’d lost hope – that I’d given up on … people and their chances of survival … on the future … on my future.
I still find my chest tightening a little bit and my jaw tensing when I think about it in any detail. I survived, some very dear people to me survived and I am forever grateful that they did, but the scars are as real and as deep as any physical wound, and I miss all of the people who didn’t survive – even the ones who were just familiar faces I passed on the street all the time. I have my coping mechanisms, and (because this isn’t about how scarred and damaged I am) I have processed and dealt with most of the demons. I came out of that experience with a steel-rod core of strength, a lot of wisdom, compassion, and with a kind of pragmatic optimism. I live a full and participatory life. But I have triggers – as I hope would be expected.
Don’t get me started on those paper toilet seat covers in public restrooms (seriously – symbols of homophobia and AIDS-panic and most people are totally clueless about why we have them or the fact that they are completely useless). Images of skeletal people – be it from famine, illness, or extremely thin models – tends to make me feel anxious, and my own weight loss – even when I’m doing it on purpose – eventually sends me to the refrigerator and junk food. For years I hated answering the phone and hearing it ring would make my heart race. The names Ronald Reagan or LaRouche send a surge of hatred through me. People with rattling deep coughs bring back very bad memories. Men wearing colorful, thick, elegant soft wool scarves make my heart hurt and a million images of gentle, energetic, creative men flood my brain. And though I didn’t make the connection until this weekend, I won’t sit in seats labeled 5A or 5B (the famous AIDS ward at General Hospital).
i remember when Philadelphia (the movie with Denzel Washington and Tom Hanks) came out, someone asked if I wanted to go see it. I snapped at her, “I don’t need to see it. I’m not the audience that needs to see it.” I avoided the plays, the books, the movies that centered on the disease. Most of them trying to make sense of or educate or gain some kind of catharsis for this experience.
One New Year’s day a few of us went to see Boys on the Side, which had just come out, and had not been advertised accurately – the distributors had been afraid people wouldn’t see it if they let on that one of the characters had AIDS. It was at that point still being advertised as a feel good road-trip adventure movie with an all female cast. So the women in the family decided to go see it as a break from hospital visits and etc. Hoping for a temporary escape. Within the first scene I realized what it was about and became paralyzed with the horror of what was going to unfold on that screen. I remember thinking as she pulled out the box of pills in the restaurant’s bathroom “please let it be cancer, please let it be that she has cancer,” knowing full well that it was AIDS. I could truly not escape from this nightmare disease. My aunt making the same immediate connection asked if I wanted to leave – in retrospect I wish she’d forced me to – but I couldn’t think or move and I shook my head violently. “I’m ok.” I wasn’t though. I jammed my knee into the armrest – which was an old style seat with a bolt right at knee level – gripped the armrest like my life depended on it, and breathed shallowly until the movie was over. As we left the theatre, my knee had a deep indentation from the bolt, my lower leg was numb because I’d been cutting off circulation, and while I was standing in line for the restroom I nearly fainted.
The only time I remember watching something intentionally was the premier of the KQED documentary “The Castro” at the Castro Theatre, but that was curiosity. When I’d gotten the fundraising letter to fund the documentary, I’d written in and asked if they were interested in talking to someone who had been a child through it. They wrote back and told me that they had someone and thought I would be pleased to hear a peer’s voice in the story. I was curious who it was. There had only been a handful of kids in the neighborhood and I didn’t know any of them. I had been a pretty free agent and had spent my days visiting people who worked in the shops and making friends with adults rather than trying to find playmates. I satisfied my curiosity and because the movie was about the neighborhood and it’s entire history, not just the 80s and 90s I was able to make it through that part of the film.
While I no longer run away from or adamantly avoid those kinds of stories and movies, I don’t generally seek them out. So when we saw that “We Were There” was on, my initial reaction was to leave the room and let mom watch it. We share the scars from that time. I often wonder how she copes and remember with a surge of affection and gratitude how she was one of the many many women who faced the crisis head on and cared tirelessly for their friends. And I realized, I was missing an opportunity to share this with her. I was so young for the early days of the epidemic that I don’t remember everything and didn’t know the big picture, so maybe – with the advantage of a couple decades and more distance and an adult mind – it would be interesting instead of painful – or maybe both interesting and painful – to watch. I decided that it would be fitting to mark Dad’s birthday hearing our story from strangers who could never truly be strangers.
It was painful, especially seeing so many familiar faces in the pictures. Some of them I had actually known, some were just men I’d seen around the neighborhood. The people who were interviewed were mostly unknown to me, but two of them were immediately recognizable. One of the hardest moments – I wanted to jump up and leave the room – was seeing ward 5A/B. But I stayed and the patchwork of my earlier memories is a little richer and more complete and I was surprised at how cathartic it was to hear those shared experiences, to validate the powerful emotions, and remember that while it tore through and devastated the community, there was a community that lived through it and it’s not as solitary a memory landscape to have as it sometimes feels like.
Two of the things that I always think about when remembering or talking about that period of my life is one, the epidemic isn’t over, and two, as horrific as this was for me and those close to me it can only be a drop in the bucket compared to those nations that were (are) truly ravaged by the disease, with much fewer resources and much bigger hurdles. Watching and listening to those stories, to my story, our story, the most powerful and lasting impression was of how courageous, generous, and determined people can be to make positive change in the face of tragedy. It’s hopeful.