Listen to an audio recording of this blog.
My initial thought when I sat down to write this blog was how much I appreciated what Paul Kawata and NMAC have done in the fight against HIV in the United States. Saying “thank you” was on my mind, and the title of a movie that I still adore popped into my head. My impulse was to title this blog, To Paul Kawata: Thanks for Everything! All of Us, but then I realized that reference may not be immediately recognizable.
I’m learning more and more that my cultural touchstones are from a different era, and many people just don’t understand them. (If you didn’t get the reference, keep reading. All will be revealed.)
The number of people in my life who have ever seen Sixteen Candles, or know the chorus to “Rock Lobster,” or remember how it felt to take over the streets and march with thousands and thousands of Act Up demonstrators has dwindled. The feeling that many of the experiences I’ve cherished in life are foreign to most other people around me is just one aspect of aging that I wasn’t expecting. Experiences that were defining moments in my time—or central parts of shared experiences for my peers and me—just aren’t significant or meaningful to others.
I’ve been surprised to discover just how isolating that realization has been, and how much it is driven by the fact that so many of the people who could be part of my life today are dead. Almost an entire generation of gay men—men who would have gotten my references and my humor—just disappeared during the first 15 years of the epidemic. When I bring up something funny from a favorite movie, or reference a favorite song or anything important that happened in the ‘80s, I sometimes feel a little more alone and a little less relevant today.
Last month, I turned 53. At this point, I have to accept that I am clearly, firmly, and undeniably middle-aged. I am incredibly grateful for the 23 years that I’ve lived since I was diagnosed in 1994—years my partner, John, didn’t get. He died within three years of his diagnosis. When I was diagnosed, the reasoning half of my brain (as well as my early lab results) suggested that I was on that same fast-track to “The Exit.”
But the other half of my brain—the intuitive side—believed that I could live much longer. At that time, I believed the key to survival was learning as much as I possibly could about immunology, experimental treatments, alternative therapies, etc. In short, I felt like I had to try to be my own doctor.
When you are racing against time—and that’s how it felt in the years before effective treatments for HIV became available—it’s all about surviving. You do what you have to do to keep putting one foot in front of the other, and you never stop to let yourself catch your breath.
Because if you did, you might fall down and never get up again.
But this past year, I noticed that I was breathing again—and that I was feeling the weight of the emotional baggage I had accumulated over 30 years+ starting to fall away. As it did, it dawned on me that I had been carrying emotional scars and still-open wounds from fighting a plague for decades. I had not always been consciously aware of those wounds, but they were still there. Now, I felt lighter, happier, and more willing to engage with others.
Many of us living with HIV who are in our 50's and older endured multiple losses, feelings of helplessness, sadness, and our worries and fears about what our own futures might hold. If you were HIV-positive, you were constantly asking yourself, “Will I die before a cure is found? Or will I be one of the lucky ones who survives?” If you were HIV-negative, you were constantly asking yourself, “What will happen if this partner is HIV-positive and doesn’t know it? Or what if the condom breaks?!”
All of these unprocessed feelings from decades ago have started to catch up to me as I get older. I’ve started to recognize that more and more people in my life know about the early years of the HIV epidemic from books or movies and just can’t relate to what it was like. And I can’t always instantly understand their experiences or all of the meaning in the ways they express themselves. If it wasn’t for Google (and Urban Dictionary) I’d really be lost when it comes to pop culture!
It’s not that I want to sit around and talk all the time about HIV in the 1980s. I don’t. I do, however, feel that I can rarely share important memories from that period and have people know exactly what I mean. Or to have some sense of how it felt at the time, and how it has affected me since then.
But I felt a little less alone when Paul Kawata, the executive director of NMAC, took the stage at the U.S. Conference on AIDS (USCA), and sat down in a big red patio chair. He acknowledged his age and what running a meeting as large and as important as USCA takes out of him. Paul, who has been an active and visible leader in HIV/AIDS since the 1980s, spoke about meeting with USCA attendees who were 50 and older. He talked about their sadness, their sense of isolation, their economic and professional challenges, and their desire to make a better life for the next generation.
And Paul acknowledged some of the physical problems that can affect older adults with HIV. These issues have been on the national radar recently, as we observed National HIV/AIDS and Aging Awareness Day in September, and as more studies, like those presented at the 8th International Aging and HIV Conference earlier this month, are showing the long-term impact of HIV even on those who have responded well to treatment for the virus. This growing body of research and the attempts to address the psychological and physical challenges of aging with HIV are encouraging—but there is a need to do so much more.
And then Paul talked about his own life experiences. He talked about being an older gay man who survived the worst of the epidemic, when he was attending a funeral almost every week. He shared his memories of visiting hospitals and holding the hands of AIDS patients he didn’t know because they had no one else to comfort them as they died.
He also spoke about how hard life had been in so many ways for those of us who are long-term survivors—not just because of HIV, but because of the losses we’ve experienced and the stigma and discrimination that some people continue to attach to having HIV or being a sexual minority, a transgender woman or man, or having some other characteristics that sets one human being apart from others who are seeking to maintain or enhance their own positions.
Listening to Paul, I heard so much of my own life story. I’ve realized recently that one of the ways I have coped with both my past and the aging process is to keep other people out. I’ve always been a bit of a loner, but now I’m like Fort Knox when it comes to my heart. In that sense, I know that at some subconscious level, I’ve closed myself off to protect from the possibility of even more losses in my life.
And that’s where my cultural reference at the top of this post comes in. When I was trying to think of a catchy title for this blog post, I wanted to settle on one that was a takeoff on the name of the 1995 movie, To Wong Foo, Thanks for everything! Julie Newmar. It came out at a time when deaths among people with AIDS in the United States were at an all-time high. The film chronicled the adventures of three drag queens on a cross-country road trip. It’s a hopeful story about people who are different believing in themselves and letting others see them as they are, rather than conforming to the expectations of others. It’s about embracing the fun and the joy in life (even when the going gets rough) and reaching out and becoming friends with people, regardless of how different they might be from you.
I see this as one of the challenges I face as an older gay man living with HIV. Embracing and celebrating myself while my body (and sometimes my mind) shows signs of wear and more than 20 years of living with HIV. It is about being authentic, about the challenges and the difficulties, not being too proud or afraid to let others see that everything is not perfect.
And it’s about reaching out to others, letting others in, having some fun, and doing the things that bring us joy and give us the energy to recharge our bodies and souls so that we can be our best possible selves and live the lives that we were meant to live.
If you are aging with HIV, there are many resources available to help you. Here are just a few: