Tez Anderson: I walked back out of the clinic. It felt like I was walking into Oz like I've walked down from Kansas into that clinic and came back out. It was like Oz, everything was electrified, the sounds are brighter, a lot louder, the sky was bluer. The greens were greener, the birds were chirping a little loud. Much later on, I realized that was shock.

Melissa Harris-Perry: This is Tez Anderson. He's one of the more than a million Americans currently living with HIV. He was first diagnosed positive in 1986, and that was a time when on average, an AIDS patient died within 15 months of diagnosis. Tez was only 26 years old when he received the news that made the world feel like Oz, buzzing with shock. Nearly 35 years later, Tez Anderson is still living, loving, and working.

Today, the landscape of HIV is quite different. With the right medications, long-term treatments, and moderate lifestyle adjustments like nutrition and sleep regularity, people with HIV can expect to live just as long as their counterparts who are negative. New anti-retroviral therapies or ART can make HIV viral load undetectable, meaning that someone who's HIV positive cannot pass the infection to others.

Together with the effective use of prep for prep medications for HIV-negative individuals, HIV is no longer a death sentence or a sentence to loneliness. For those who survived the most brutal decades of the pandemic, there are costs to surviving, the loss of so many friends and loved one's years spent preparing for death rather than building a life, and the challenges of living to an age you never thought you'd reach. For this installment of our Takeaway series Aging While Queer, we spoke with Tez and began with the shock of his initial diagnosis.

Tez Anderson: Everyone was dying. The fact was that 10 years later, I realized that I actually seroconverted and became HIV positive in 1983 because I was dating a guy that died from something mysterious, we didn't know what it was and we lost touch because he was out of town. He was having somethig to do with analysis of his blood, and he sent me a letter saying, "I'm going through some changes lately" to the tune of about 35 pounds less.

That was the last letter I ever got from him. I remember that summer was when I had all the symptoms of seroconversion, but it took me a long time to put that together. I was diagnosed at '86, I've been living with the viruses since 1983.

Melissa Harris-Perry: Here you are decades later, not gone. I'm wondering if The Oz Effect is still in effect may be particularly in the moment of the pandemic crisis. I'm wondering about whether or not there was a renewed sense of shock and terror.

Tez Anderson: At the beginning of the COVID pandemic, there was a little bit of echoes in the early days of the HIV pandemic. It's funny I was in Washington, DC this weekend, especially, and the [unintelligible 00:03:20] about, "Ending the pandemic." I'm like, "Which one?"

[laughter]

Because I've lived through two now. At first, there was shocks in the early days of AIDS because no one knew how it was transmitted, and that sort of stuff, but that didn't last very long because they're very different viruses to this. Also because when HIV first arrived, no one noticed, no one gave a damn. It was buried on the back page of the New York Times and it was very small news.

With COVID, everybody was involved, it was much more infectious, of course. There's similarities, but there's very big differences too. At the beginning, yes, I was like, "Oh my God, here we go again."

Melissa Harris-Perry: I actually turned in those early days to some of my friends and colleagues who are HIV positive to ask them specifically about how to think about and talk about what it meant to be in a contagious public health crisis. Given literally some of the players on the national stage like Fauci were the same actual players. What we needed to be thinking about and looking for that maybe we missed in the '80s.

Tez Anderson: The thing was that there really is no group of people who know more about surviving a pandemic than HIV long-term survivors. There's 1.1 or 1.2 million people in the US now living with HIV. Over half of them are over 50, a quarter of them, 25% are long-term survivors like myself who were diagnosed at a time before there were effective medications.

In fact, when I was diagnosed, there were no medications and people were dying. I think the swimming upstream, feeling that people were getting during COVID, and the panic and the sheer confusion and terror that they were feeling was something that we were familiar with and had navigated our way through most of us. It's interesting how in the early days of the COVID pandemic, it brought up a lot of stuff in the early pandemic. For me, when I first thought I was positive, I decided to be the best dying guy in the world.

I bought books on death and dying and I plunged myself into the idea that I was going to die. I lived that way for 20 years. I went back to the doctor after the first two years, and he said, "Two more years." I was like, "Okay, well, we're just there." We did that for a decade. I finally said, "You don't really have any idea what you're talking about, do you?" He said, "Well, not exactly." I said, "Well, then stop telling people they're dying, because they may plan to die and not plan to live." At some point, that very dying, I can die, heck around my brain around because it was logical.

We were put on earth for one reason, to eventually die. What we do with that time is ours, but I'm just saying that we all got the same endpoint. For me, I realized that I had to, I don't know, step up to the plate and live as well as I could live. I was ill-prepared for aging with HIV. As I started approaching 50, I went into a bad rabbit hole. It was about five years of a dark night of the soul.

That's a pleasant way of putting a nervous breakdown because I was having all these things going on. I was scared and depressed and couldn't sleep, I was having nightmares, and was suicidal. I was isolated and had very negative thoughts. Apparently, I was very, very, very, very, very angry and unpleasant. I didn't really know how much I was, but the idea that living with HIV was a big upheaval as learning I was going to die, was what was the origin for AIDS survivor syndrome.

Melissa Harris-Perry: When you say that you were ill-prepared to age with HIV, walk me through that a little bit more? Certainly, part of it is about losing others being a survivor, but what's making you angry?

Tez Anderson: I blamed myself, I felt stupid for not having-- For instance, dead guys don't need 401(k)'s whatever they are. I spent my life not planning, I didn't save for retirement because I wasn't supposed to retire. I wasn't going to live to see 30. The ways in which I was like, "You bought the lie." I was telling myself these things. The paradox of it is that those things were true because I was losing. I lost so many loved ones to AIDS.

The thing that made me angry is, I think it was Thursday, I was on the first trials for AZT, the first medication. I was able to trials for the 'D' drugs which was short-lived but effective, but they started causing neuropathy. Neuropathy is the numbness and pain in my feet and hands, especially my feet, but I wasn't as physically able. I always say 60 is the new 80 when you had HIV for 38 years, we're aging faster.

There was the loss, the sense of loss of self, the ability to do things I wanted to do. I used to love to take hikes, but I can't do that anymore. There's so many things I'd given up.

Also larger than that, I wasn't living fully. I thought I was living fully, but I wasn't because I was living with this time bomb in my head. Like, it will all end. Every time somebody would die, I think, I'm next. I'm next. You live that way for a while and you learn to live in the short term.

For me, the anger I think came from watching people taking aging for granted. I know that aging is a privilege and I know there's so many of my friends and loved ones who didn't have that privilege. I also know that aging as Bette Davis says is not for sissies. She was wrong because I was a sissy. I'm doing it okay, but some days I just have to stay in bed all day. I also have luck because I have been able to form a community around the idea of long-term survivorship and finding other people. I thought the stuff that I was going through when I was talking about AIDS survivor syndrome that was only me, I thought I was the only one going through that stuff.

Once I started explaining it to other people, other survivors, people that I had lost touch with and started getting back in touch with, it was the same process I did when I was going to die. When I began to realize I was going to live, psychology had always been a hobby of mine, books, and reading, [unintelligible 00:10:36]. I began looking into this idea of what's going on? Why am I having all these things? I was seeing therapists who were very qualified people, who were treating me for depression, anxiety, and sleep disorder, but they didn't see the bigger picture.

It was about the torrents of surviving AIDS for so long and all those losses. The loss itself, the loss of the body, loss of sexy, where's that belly coming from and I think as a queer person, as a gay man, we put so much stock in the way we look. It took me some time to embrace the grey and accept the fact that I was going to be older. I'm happy with it now because I've got a good life, I don't make any money but I had a good life otherwise, I have a husband, a dog, and friends.

As I say, I've been worthy, it means something to me. I feel very lucky that I have all that, that AIDS taught me to take your situation and turn it into activism and turning into a purpose. I always watched Oprah and she was talking about find your purpose, find your purpose. I kept looking, I'm like, "I'm looking, I'm looking, I'm looking." It never showed up. My purpose found me in a very unexpected, very awful way, I wouldn't recommend it to anybody. On the other side of it now, it was the most amazing gift ever.

Melissa Harris-Perry: Tell me how do you kick ASS? In other words, how do you and the others who you were working with and in community with, how do you push back against the AIDS Survivor Syndrome and find that joy in aging and in surviving despite the horror of the losses?

Tez Anderson: How do we kick ASS? We kick ass by coming together, supporting each other, accepting that what we live through and what we are dealing with now and the post-trauma, post-resilience age of it is a perfectly natural response to an extraordinary event. We're dealing with ageism now something we never expected to deal with, that thing of being so old that you're invisible to the people, again. It feels like a bitter pill sometimes, but if you make enough noise in others' share--

Melissa Harris-Perry: Tez Anderson, thank you so much for joining The Takeaway.

Tez Anderson: Thank you, Melissa, it's lovely to be with you.

[music]

Melissa Harris-Perry: Now before we go, we want to leave you with the words of our own David Gebel. He's a gay man living with HIV, he is a vital member of The Takeaway team and actually, of the entire WNYC team. He's a true inspiration to all of us.

David Gebel: It has gotten tremendously easier, the first decade or so was lots of unknowns, lots of medications, lots of changes, lots of running to the doctor. Truthfully, some of that stuff remains, I still go to the doctor a lot, I still take pills, I still have to be sure I have health insurance. I am grateful that I am here, I am healthy, I have a non-detectable viral load, which means I can't pass it on to anyone.

All that's terrific. It still is something that people are surprised to hear, it certainly hasn't gone away. There are a whole bunch of us who lived through it and are here to tell the tale.

[music]

Melissa Harris-Perry: You're a part of this conversation too.

Darrell: I am calling about the question about living with HIV. My name is Darrell, I'm in East Texas. I'm okay, I'm very grateful for how far science and medicine has come and the ability to live a manageable disease with a manageable illness today. I don't know what you're asking but it is possible to live a full life. I'm so grateful for that.

Derek: This is Derek from Vegas and I'm thriving with HIV. I don't let HIV get me down. It has opened me up to a whole new community of people, who are dealing with the same issue. It's been life-saving that I have found the community folks. HIV ain't getting me.

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Melissa Harris-Perry: Now, if you have anything you want to share with us or you have show ideas, give us a call at 877-8-MY-TAKE, that's (877)-869-8253, or send us a Tweet at The Takeaway. We always love hearing from you. Thanks so much for listening, I'm Melissa Harris-Perry, This is The Takeaway. Come on back for more tomorrow.

[music]

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