A long-term survivor in San Francisco reflects on undetectable, a changing city and a new era of HIV
Hank Trout, M.A. moved to San Francisco in 1980 from Chicago to experience the liberation and freedom our city is famous for—and for a coveted assistant editor position with Drummer Magazine. Just in time to witness the beginning of AIDS, Trout quickly saw his community decimated and a shift from freedom to terror. As he helped care for dying friends, his own diagnosis with HIV in 1989 “complicated matters” and he stopped writing professionally and for his own enjoyment.
Trout now identifies as a long-term survivor and is finding hope in a new era of HIV, solidarity with other survivors and joy as a writer and editor again. Along with other “last men standing” Trout shares his story to ensure that other long-terms survivors aren’t left behind or forgotten as the worst times of HIV recede into history.
BETA: Thank you for speaking with us, Hank. Before we talk about the past, will you catch us up on what’s keeping you busy these days?
Absolutely. My fiancé convinced me that I had to start writing again a few years ago. I wrote a poem, “Tornado,” about living in San Francisco in the 1980s, that was published in A&U: America’s AIDS Magazine in January 2016, and I’ve been writing for them ever since. Recently, I was promoted to Editor-at-Large for the magazine.
I’m curious about how it feels to be a long-term survivor in San Francisco these days. Do you think the community feels overlooked or invisible to the HIV community, or the larger LGBTQ community?
We withdrew for the longest time. I interviewed Cleve Jones back in November, and one thing he pointed out was that the generation of gay men that came up immediately after us turned their backs on those of us from the AIDS generation. I actually think that’s understandable—I’m not saying it as a criticism. It was a horrendous time, and they didn’t want to have to deal with it.
Then I think the generation after that—the guys who are now in their late 20s or early 30s, they’re interested. They want to hear what happened. They take inspiration in the way we came together to take care of each other.
HIV and AIDS has become less scary. We are less scary. I think one of the things that has helped is that long-term survivors are continuing to live productive, rewarding and satisfying lives. The past has helped change attitudes a lot. We’re no longer the lepers that we once were considered to be.
You were diagnosed with HIV in the late 1980s. Will you tell us more about what it was like to be diagnosed at that time?
I was diagnosed with HIV in 1989—everybody I knew was terrified. This was six or seven years before HAART [highly active antiretroviral therapy]. People at that time were being as careful as possible. When someone mentioned safe sex to me, when they first discovered that HIV was sexually transmitted, I started protecting myself, which is why I know I must have been infected in 1981 or 1982.
When I got the diagnosis, the biggest surprise to me was that it wasn’t a surprise. Like most people I knew at the time, I had expected the diagnosis for a long time. After eight years of seeing your friends seroconvert, it didn’t surprise us anymore. It still scared the pee out of us, but it didn’t surprise us.
My doctors tried really hard for me to take some of the earlier HIV medications like AZT. But everyone I knew who started those got sicker and many of them died within six month. There was something about the drug that scared me, so I refused to take it.
Fortunately, I managed to hold on until 1996, when the cocktails became available. I remember in August of 1996 my mother died. Before I went home for the funeral, I went to see my doctor who said that if I didn’t start medications I would be dead before Christmas. I didn’t have any T cells. My viral load was like 440,000. I thought about it and started taking medications. The difficult part of it was knowing I would be on this stuff for the rest of my life. The expense, the drudgery, the side effects. The side effects in those days were just horrendous. I was nauseous all the time. I was losing muscle density, getting weaker and weaker, too.
The HIV drugs are much better these days. What are the big differences?
When I started taking medications I was taking seven to eight pills three times a day. Now I’m on just two pills in the morning—and that’s it. There are virtually no side effects.
There’s a new campaign by Prevention Access Campaign called U=U, which stands for undetectable equals untransmittable. They’re spreading the message that if you’re living with HIV and have an undetectable viral load, you won’t transmit HIV to other people. Have you heard of it, and if so, what do you think about the campaign?
I actually helped promote the U=U campaign through the magazine I write for, and I’ve done a lot on Facebook for U=U as well. I think the message and campaign are terrific. It’s something that will help reduce HIV stigma.
The science was pretty iffy for a number of years. But in the last year or so, they’ve pretty much proven that undetectable equals untransmittable. The trick now is to change people’s minds. For 35 years we’ve been taught to fear HIV. And now we might not have to fear it quite so much.
What advice do you have for people who are newly diagnosed with HIV?
The most important thing I could tell anyone is, “Don’t try to do this by yourself.”
It’s still quite a blow to the head to hear that you’re HIV-positive. I think the biggest mistake anyone could make is to try to do it on their own. Find a support group. Go to San Francisco AIDS Foundation. Go to Shanti, or to AHP [Alliance Health Project]. At the very least, there are people you can talk to about what to expect and what not to do. There’s help out there, get it.
I was one of those crazy people who didn’t seek out help for a long time. About three years ago at this point I saw a postcard in the Castro for Let’s Kick ASS (AIDS Survivor Syndrome). Just seeing that made me think, “I’m not alone.” I’d lost so many friends from the ‘80s and ‘90s. I had become rather isolated.
I still had a few friends, and my fiancé, but in terms of my community, I had completely disconnected.
It was discovering Let’s Kick ASS that got me re-involved. Through it I found the Elizabeth Taylor 50-Plus Network. And found Honoring Our Experience at Shanti. When I tell people, don’t do this alone, I speak from experience. It’s much easier when you’ve got a support group.
There’s a danger to sitting at home and staying inside your own head all the time. Groups like that help us get out of our heads. It also feels good to know you’re helping other people. We get a sense of accomplishment every time we host a dinner for other people. Or help at an art opening, or a book signing. In addition to our own spiritual healing, it just feels good to know we’re doing something for the community. We haven’t left the community. We may be old and tired, but we’re still here.
You’ve been living in San Francisco for many years. What are some of the ways you’ve seen the city—and the gay community—change?
It’s hard for people to understand, now, how easy it was in the ‘70s and ‘80s to show up in San Francisco and find a job, find an apartment, find good friends and start making a life. That got much more difficult as years went on.
One thing that’s changed a lot is the way we connect with each other. When I first moved here in 1980, just on Folsom Street alone between 6th Street and 12th Street, there were something like eight or nine leather bars, not even counting the bars that were on the side streets. Now, in all of South of Market there are like two or three bars. The same thing has happened along Polk Street. From about Clay to Geary or Post, there were probably a dozen or so gay bars.
I don’t want to downplay the importance of the bars, but in a way it’s a very good change. We’re no longer reliant on bars for a place to meet and get to know each other. In the absence of LGBT centers, the bars were our center. It’s where we went to plan political actions and it’s where we socialized and found partners.
Partially because of AIDS, partially because of technology, the bars aren’t as important as they used to be. Online communications are filling the roles that bars used to. There are also social groups now that have nothing to do with bars. There are sports clubs, writers’ organizations and knitting clubs. We have groups like the Elizabeth Taylor 50-Plus Network that came into being because we recognized that we have a lot more to contribute to each other than just being drinking buddies.
For more information on social and support organizations for long-term survivors in San Francisco, check out the Elizabeth Taylor 50-Plus Network, Black Brothers Esteem, The Shanti Project, Let’s Kick Ass. Read more from Hank Trout, and others living with HIV, in A&U at www.aumag.org.