Almost exactly 30 years ago, in the fall of 1988, I was attending high school in a suburb of Los Angeles when I caught the acting bug. In that part of the world, wanting to be an actor was more of a rite of passage than a particular vocation. A lot of us went through some kind of acting phase. Nevertheless, I took myself quite seriously at the time, so I dropped out of high school, took an acting class, and landed my first paying gig saying two lines in a sex education movie for high schoolers and youth groups. While my performance was… ahem… not Oscar worthy, the crew took a liking to me and was generous enough to invite me to the movie set every day while they were shooting. One afternoon we filmed an interview with a man who would become the first person I would actually meet who was living with HIV/AIDS that I knew about. His story moved me, (and haunted me, and inspired me) in a way all the vague and ominous news reporting about this thing called “GRID,” the “gay cancer,” “ARC,” and AIDS had not. And it was a bout to cheange the entire direction of my life…
Even as a 17-year-old, something inside me shifted and I knew I had to do something to respond, there had to be some kind of action I could take. But the world was an entirely different place back then. Not only was there no internet to hop on and find the organizations in need of volunteers, but there was an extreme social and political climate surrounding AIDS. As late as 1985, a survey showed that a majority of people in the U.S. still favored a general quarantine of persons who were HIV positive. To be clear, this means a majority of US citizens said that they wanted to round up everyone with an HIV diagnosis and put them into camps. So even though a few years had passed between that time and the time I wanted to get involved, there still weren’t exactly a lot of easily accessible opportunities for a naive teenager from the suburbs to find a place to just show up volunteer like any 17-year-old could do today.
In the fall of 1989, I put off my “prestigious” acting career and enrolled in a small Christian college in San Diego. I asked the Spiritual Development office if they knew how I could get involved in volunteering with people living with AIDS. They really had no idea, however, they did have a phone number to a recently opened AIDS hospice and were willing to give me a $500 budget to try to start something, …honestly anything. It was one hundred percent in my hands and the hands of other students to figure out what to do and to make it happen. After very few phone calls the founders of the hospice decided they would love it if we just showed up and tried to be friendly, loving, and useful if/when we could. So one afternoon, I loaded up my Datsun, and my friend Sherene and I headed over to Ariel House, in Hillcrest, to just walk through the doors and, …well, show up.
It turned out the residents of the house were a little less thrilled about a couple of do-gooders from the Christian university showing up to accomplish, who-knows-what when the most publicized Christian voices were saying abominal things like the AIDS outbreak was God’s judgment on homosexuality. When we showed up we let the house manager, Joyce, direct us. In short, she told us to be nice, rub feet, and “don’t even cross the threshold of Carlos’ room.” …We did as we were told. (Joyce had a way about her).
Over the course of the next four years, I did not actually do very much. I wish I had done more. What we did do was rub a lot of feet suffering from neuropathy. I cooked a few terrible meals. I mopped some floors and spent a lot of time in some absolutely engrossing conversations. Dozens of students over four years would make the short drive to the house with the main goal of the three L’s, “to listen, to love, and to learn.” …and learn we did. Eventually, I would even cross the threshold of Carlos’ room. I cannot think of a regular participant whose life was not deeply impacted by our time at Ariel House. Some of us are still dear friends. The impact that time had on me can hardly be overemphasized. There is a kind of wisdom that settles in when someone has lived with their own mortality. It is a kind of wisdom good for eighteen-year-olds to hear. I still hear it.
In the summer of 1991, I was sitting on the hardwood floor, rubbing someone’s feet and watching the Tony awards. We watched as one celebrity after another appeared on screen wearing a small, yet distinctly red ribbon. It was the first moment it felt like people were paying attention to an absolute travesty that, to us, seemed very much like an apocalypse. That one little spot of bright red on a dress, or a tux lapel, made some of us begin to feel a lot less …alone. I know I did. That was the night red became our color and the general population began talking about AIDS as something other than a thing gay people had to worry about.
While doing all of these things, I continued to say an excruciating amount of good-byes. Entire apartment complexes in our city experienced complete turnover in a matter of months. Some neighborhood businesses closed their doors because they lost so many of their customers. Recently, my best friend asked me what percentage of my friends living with AIDS I lost during college. His question hit me in my chest and crept quickly upward to become a lump in my throat that honestly is still there, even as I write this. “All of them,” I told him, “one hundred percent. I lost them all…”
…Thankfully, That is no longer the story. People are thriving and living with undetectable viral loads. There are many people who didn’t expect to live a year who are now moving into their third decade after their HIV diagnosis. New approaches to treatment, prevention medications, and ongoing research have completely changed the face of HIV. “HIV-positive people are living increasingly long lives. Many people living with HIV can expect to live as long as their peers who do not have HIV.” What is possible today was only a pipe dream for us back then, and it is organizations like (product)RED, AIDS Services Austin, The Kind Clinic, Q Austin, and volunteers and donors like you that are rewriting the story today.
I didn’t know it at the time but 1988 was also the first World AIDS Day. Without realizing It, and even though I was too young to be taken seriously, I celebrated that first World AIDS day just by opening my heart and asking what small thing I could do. I think this is also a great way for you to join me in celebrating the 30th. What small thing can we do?….
psssst. Hint, sign the pledge ——->
Every year on this day I always experience a pretty wide mix of emotions. On one hand, the AIDS crisis will never be over for me. There are too many people I love that are gone from my life. People like Carlos, David, and Janitzio, and I have every intention of remembering them – which means choosing to endure the sorrow of missing them – for the rest of my life.
On the other hand every year I am reminded that my life is full of heroes who have doubled down on hope, friends who have mastered the art of caring for people who were dying, people who have diligently worked to educate people and raise money both for care and cure. Every year I am reminded of how many of my friends who have been HIV-positive for a long time and who are still around and valiantly sharing their own stories, or just shopping for shoes for that matter. Well done! Even at my job, without knowing my particular story, my colleagues at work have passed out red shirts, changed the color of some store signs, and taken time to tell thousands of customers about what (product)RED is and why it matters. Every year, I am confronted with hope. Thank you.
On December 1st, when you wear red or a red ribbon, when you learn about (product)RED and the global fund to end AIDS, when you buy a red Ubuntu “Love” bracelet (put it on your wish list), and when you donate to programs like AIDS Services Austin, or when you just pay attention and learn a new thing you can learn, you aren’t just preventing wounds of the future, in my case you are also helping to heal some of the wounds of the past.
It may not seem like much, but just like that first night on television in 1991, this one little bright spot of red ribbon we choose to wear has the potential to say to people all over the world living with HIV and AIDS today what we should have been saying all along:
You matter and you are not alone.
Take care of each other.