When I was in college, World AIDS Day and Day Without Art were an important part of my college calendar. It was a day to raise HIV/AIDS awareness on campus, and mourn the loss of many artists. I had friends who were equally passionate about the issue and as devastating as it was I remember how we’d come together and the somewhat hilarious times we had trying to blackout the art around campus late into the night in prep for December 1st. Even though my campus days are long past, every year, in some small way, I try to participate in World AIDS Day. This year it is with offering this remembrance.
The first time I ever sold a piece of art was on December 2, 1990 at the ACT UP Auction for Action. It was a cheerful watercolor of a yellow freesia. My parents were contributing to the auction and my mother suggested I donate too. I have a very distinct memory of her sitting me down at our black and white dining table and putting my procrastination to an end with a simple command, “Paint!” My mother framed it and by the time I arrived at the auction that night it was if by magic that a piece of my art hung on the gallery walls.
As nonchalant as my involvement in the auction felt ahead of time, I was forever changed from witnessing it. During the live auction, I remember vividly the room being taken over with emotion and erupting into chants of “ACT UP! FIGHT BACK! FIGHT AIDS!” when a Keith Haring painting sold for thousands of dollars. Haring had died of AIDS earlier that year making the sale even more poignant.
All these years later, I can still feel the electricity of that night and the power of the people in that room. The sheer determination to beat AIDS, against all odds. In 1990, there were no effective medications for treating HIV. Even though I was young, I understood the gravity of the situation. I cried standing there listening to those chants, overwhelmed with the understanding that someday, painfully soon, many in that room would no longer be with us. People I loved, I feared, would be gone.
At the time, I was living in-between worlds. On the one hand I was your average rebellious teenager, on the other hand, I was a kid watching the AIDS crisis unfold and devastate my father’s circle of friends. This was around the time that Tony, my dad’s boyfriend, met me – at 16, when I was the worst version of myself. In the backdrop of my life was the AIDS crisis. In the forefront was supposed to be high school but it seemed really pointless to me. I was falling apart, acting out, and all around obnoxious and disrespectful.
But Tony was still caring and kind to me and his presence was very stabilizing. And while he mostly steered clear of parenting-like behaviors he would chime in when he was concerned for me. I have this fond memory of him sending me back to my room several times before I left the house one time. In the dead of winter, I was wearing a t-shirt and refusing to wear socks and he didn’t want me to catch a cold. At the time I’m sure I responded with the perfect teenage exasperation but even in the moment I felt his caring.
I got to watch and learn from my father and Tony as activists. My father would warn me of things like, “I might get arrested at this protest tonight.” Or “There might be a death threat on the answering machine but don’t worry about it.” I admired his strength and his courage (still do.) I admired them both for their commitment, ability to organize, and to have fun even when it was a fight for life.
Tony died in 1997 after a long battle with AIDS. In the pamphlet my father put together for Tony’s funeral, my father wrote: “Tony was known to many in the New York AIDS activist community as “The little guy with the big voice at demos” his enthusiasm and general warmth were matched by his sense of fairness.” This, and his contagious laugh, are how I remember him most.
I remember being at an ACT UP demonstration on Wall Street with him in the fall before he died. He was weaker in physical form by that point but just as committed to the fight as ever. As we marched through the streets someone in the crowd began a chant, “We’re here, we’re queer, and we’ve come to storm the market!” Tony didn’t like that chant and said, “We’re not all queer.” This wasn’t about being upset by the word. Queer was commonly accepted as a reclaimed term by that point. What bothered Tony was that this wasn’t a gay issue, this was health issue. I had been schooled about this from him and my father in our living room so I knew how important this distinction was to both of them. ACT UP, at its core, was about getting medicine in bodies, it was about fighting for life.
My heart ached to be able to do anything for Tony given how sick he was, to make things better for him in any small way and so I tried to change the chant, I shouted, “Health Care is a right! Health Care is a Right!” and Tony joined in, the crowd followed and dropped the other chant. That memory is important to me because it feels like the only thing of importance I ever gave Tony. When he was weak, I helped him with his big voice.
One day, I was home making food in the kitchen when Tony came in. He was a bit upset but it wasn’t until he bumped his head on the freezer door that it became one thing too many and he started to cry. He said, “I’m losing my hair.” He had been doing chemo, “I’m just not ready for that.” We hugged and he told me that he loved me and I told him that I loved him too and then he went into his room. When I saw him later he had regrouped. He wasn’t cheerful but he was himself, present and engaged in enjoying what he could.
I only stayed in the hospital with Tony one night. It was a few nights before he died. My dad was exhausted and had hired a nurse to stay the night in case Tony needed any help getting medical attention. I stayed to be a familiar face because between the illness and the pain medication Tony could be confused. We watched a little T.V. but mostly Tony was in and out. When he slept, I’d wander the halls. What used to be the AIDS ward of Roosevelt Hospital was now half empty. Protease Inhibitors had been released the previous year, a revolution in treatment, a break-through. Tony’s immune system had been too depleted by the time he got on them. It was a painful reality that he missed them by how long? 6 months? But my father has said that Tony wasn’t resentful about that. That Tony wanted to focus on the time he had instead of being bitter about the time he didn’t get to have. That’s just who he was.
What I will never forget about the night I stayed with him was how he was in dying as he was in living. Even in dying he was thoughtful and kind and appreciative of life. At one point in the night he woke up and in the dark room asked for a sip of water, he took a long sip and let out a small “ahh” and said, “You know how sometimes water just tastes so good?” I had to choke back tears and look away because it was so wrong that someone so good was going to die. As a clear dawn broke, the nurse’s shift was over and as he went to leave Tony stopped him at the door, “Don’t forget to take an umbrella.” He said. He was delusional yes but even his delusions were thoughtful. He was in life and death a model of humanity.
I looked out the window that morning and the sunrise was peeking out from around the buildings and I promised Tony in my heart, I would make something beautiful for him. I didn’t know what or how but I promised him that his death wouldn’t be in vain. I was 23. It was an arrogant promise. It was a misunderstanding of legacy. That we are better people because of having known him is the beauty of his life. A far more profound gift than anything I could create. He was a teacher about gratitude and appreciation of life until the very end.
A lot has changed since those early days of the AIDS crisis but it is not over. The protest I mentioned being at with Tony in 1996 was to protest against pharmaceutical companies price gouging life-saving drugs. That was nearly 20 years ago, you would hope that this wouldn’t still be an issue but just this year we saw Martin Shkreli raise the price on an HIV medication 5000% from $13.50 per pill to $750 per pill.
According to the World Health Organization (WHO), in 2014 an estimated 36.9 million people were living with HIV worldwide. In 2014 1.2, million people died of AIDS. There were 2.0 million people newly infected in 2014.
Today we remember, mourn, and celebrate those we have lost. Today we resolve to do the work that is still left to do.