Ed Barron Is Not HIV Positive, He's a Person Living With AIDS and Complications
May 2, 2014
Ed Barron has had his share of challenges in life. After being honorably discharged from the U.S. Navy for being gay, and after the dissolution of his last major relationship, he was diagnosed with HIV in 1986. He has since survived anal cancer and hepatitis C coinfection. Ed is the picture of resilience in the face of adversity. The key to his success is a great relationship with his doctor, who he says "won't co-sign my crap."
Now, as Ed looks back in his life, he has taken on a new role: activist. He has joined ACT UP and began a new period in his life in which he is giving back. Ed's story is enthralling and full of passion and a true inspiration to anyone living with HIV, or, as Ed would put it, living with AIDS and complications.
Ed, can you start by describing how you found out that you were HIV positive?
It's a long time ago, Mathew: 1986. I was living with two men that I had met in San Diego. But they were from New Jersey. I moved back to New Jersey and moved in with them. We had played around. And they suggested that I go get tested, because they both had just recently tested positive.
I went to their doctor here in Manhattan and the test results came back positive, on my 30th birthday.
HIV tests were kind of new in 1986 -- or they hadn't been around that long yet.
They hadn't. And we didn't know what they were going to do with the test results. So our doctor did not report to the CDC at that time; he kept it in his safe on West End Avenue, until the day that he retired. I'm sure of it.
What did you think, and how did you feel, when you first heard that you were positive?
I was scared. I didn't know anything. I had lived on the West Coast, and I had heard about the gay cancer. We laughingly said, "Well, we live in San Diego. It's five years behind everything. So we don't have to worry." So I really didn't know much about HIV until I was confronted with it in my life. I hadn't done any reading on it. It was just something superfluous.
It was new. I wasn't even sure how it was being transmitted at that point. We just knew that we were at risk because we were gay men; because we were promiscuous -- multiple sex partners; and I had a history of IV drug use.
People have asked me how did I get the virus. Take your pick, you know? It could be any one of numerous ways.
Did you go on AZT [Retrovir, zidovudine] when it first came out? Are you one of the people who couldn't take it?
I didn't go on it right away. At the time, we weren't measuring viral load yet. My T cells were pretty strong. I was up around 700, 800. I elected not to take the meds, just because we didn't know. And there were rumors that it was toxic, because people were dying even though they were on AZT. So what was the point for me, at that point, to take it?
I didn't take meds until my T cells started to drop, which was probably in 1989. I was getting ready to move out of this house, because I couldn't deal with death. I watched a man my size become emaciated -- wasting syndrome, sunken cheeks -- taking meds.
It was too much for me to handle at that time, because I was afraid that was going to be me. Because, back when I tested, they said I had five years to live. And here, I watched somebody die within a year. And here's another one, three years into it. And it's like, when's the shoe going to drop on me? So I ran.
Somewhere in that period my T cells took a bit of a dive and I decided, "OK, maybe I should try this AZT." But they had already reduced the dosage.
To make it less toxic?
So it wasn't quite as toxic. And there were a lot of stories that AZT was killing people. I didn't believe that to be true. In my heart, I just felt that we were so sick that there was nothing. Because we didn't know. We didn't get diagnosed when we had [pause.] You know, something happened to make us go get tested, whether it was social conscious-issue pressure, or we just figured we lived the lifestyle that maybe we should.
There was no resource available for somebody that did test positive. We had the Healing Circle, which was conducted in a church or school auditorium. And we tried that, all three of us. I got nothing from that, because I didn't understand. It was about "mind-body," you know? It was hocus-pocus, as far as I was concerned. I wanted science. And there was no science yet.
Do you remember some of the first things that you did that kind of helped you come to terms with your diagnosis? Because I know you said after you were diagnosed that you didn't know a lot about HIV, and stuff like that.
Well, it just became a part of our daily lives. I was living with two men that were positive. I was going to a doctor that had a predominantly gay following. I was in the health care system -- because I had problems with my teeth because of my drug use. So I started to see dentists. And, of course, the dentists were putting covers on everything, double-covering everything and sanitizing.
I lived through that whole period, where even the doctors were scared. I wasn't in New York, but I came to New York for services because I couldn't find anything in New Jersey at that point in time. So for me, I was embraced by the gay community in New York that was more knowledgeable.
We would go to these Louise Hay's things, and there would be hundreds of men looking for an answer. You know? And so there was a camaraderie. We would have house parties, and most of the people would be positive. And there would just be kind of emotional support. But there was no structure like there is today, with support groups and long-term survivor groups, and stuff like that. So we found our way. It was all trial and error.
Who was the first person that you told about your diagnosis?
Wow, that's a tough one. I would guess it would be my mother. And I swore her to secrecy ... much the same that she was the first person I told when I admitted that I was gay -- in my family. I mean, friends knew. But I came out to her about that, and I came out to her about my HIV status.
Separately, or at the same time?
My siblings did not find out until many years later, when I was sitting at a diner and my buzzer went off, because it was time for my 2 o'clock dose. I took the pills out of my pocket. My sister asked me: What was that? I said, "Oh, they're my vitamins."
And she said, "No. No, no, no." So I had to tell her that, yes, I was positive. I was fortunate in that I've never been ostracized by my family. Certainly, other men. I fought the stigma to where I would go out to dinner with somebody, and I would tell them on the way to dinner that I had just tested positive; and they would turn their car around and drive me back home, saying they couldn't deal with it.
And then, four years later, I would see them at Gay Pride, and they'd come running out onto Fifth Avenue and say, "I tested positive!" It's like, so what do you want me to do? Where were you when I needed you? My empathy wasn't that great because I was fighting, you know? I wasn't ashamed of being HIV positive. But it wasn't -- you know, much the same as I didn't have a sticker on my forehead that says I'm gay then. Today, that's what I do. Because my acceptance is totally different today than what it was. I was never ashamed of being HIV positive.
I know now you disclose to everyone, and you're very public -- but how did you used to decide whether to disclose your HIV status to someone?
When I was HIV positive -- and I am no longer HIV positive; I'm a person living with AIDS, and complications, so I can't not disclose that. But back then, if I were intending to get physical, or intimate -- and by intimate, I don't necessarily mean having sex -- but if I'm planning on dating somebody, I would have to broach the subject. I would ask them if they were aware of what their status was.
Regardless of what their answer was -- because, even if they were negative, they'd say, "I'm negative. How about you?" -- then I would have to divulge my status. But I would usually be the one that would instigate the conversation. Because I wasn't about to get involved with somebody, not telling them, and then have to tell them, and have them feel that I lied to them if I didn't tell them the truth. There is a difference, I guess, between lying and omission -- a sin of omission, I guess, it's called.
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