Ed Barron Is Not HIV Positive, He's a Person Living With AIDS and Complications
May 2, 2014
How have your relationships with your family and friends changed over the years? Do you still talk openly with your family about HIV and how you're doing? Or do they not want to talk about it?
I only have one sibling left. I had three siblings, and aunts and uncles. They all knew my status. But it wasn't something we talked about because it wasn't their reality; it was my reality.
They would ask me, "How are you doing?" And I couldn't go, "Well, my viral load is down, and my T cells are up." They don't care.
My sister has been a staunch supporter of me in all that I've done. But, again, it's not her reality. She has three lovely children; they have known since the day they were born that Uncle Ed is positive. They are now in their 30s. One just turned 30. So, from the time she's been cognizant, she's known that Uncle Eddie's been on medication. They are more than willing to talk to me about hepatitis C and HIV. Because they know that I'm knowledgeable about it. And they have friends that are finding out that they have hepatitis C. "Uncle Eddie, what do I do?"
So, because of my transparency about my own journey with my family, they all know that I'm a recovering drug addict. I can't hide that. And I don't want to hide that. I don't want anyone to go down the path that I've gone down.
How long have you known that you were living with hepatitis C?
I was in San Francisco, so it had to be 1999. I have been unable to address it because I'm not stable with my HIV. I have been up and down. I've had other opportunistic infections: PCP and HPV, which manifested itself as anal cancer. It was stage 2, which means I'd had it for a while.
So I've gone from having undetectable viral load to having two million replications. I've gone from having 300 T cells down to where I am now, which is 150. We keep tweaking medication to try and keep me stable. Now, with the new non-interferon-based remedy for hepatitis C, we can start to look at that -- if I can stabilize with my T cells.
Are you still battling anal cancer?
Actually, Thursday I will be seeing my oncologist, and the good news will be four years in remission.
It was a very tough struggle because of the compromised immune system. I took extra doses of radiation -- 15 doses of chemo; 20 doses of radiation; a 30-day stay in the hospital; and still scheduled for a colostomy. And the day of the second surgery -- the first surgery, I was too sick; the colorectal specialist wouldn't touch me, so they put me in the hospital. Twenty-eight days later, I was scheduled for the second surgery. I was all shaved and ready to go and my ID doctor came in, looked at the CAT scan and called a gathering and said, "Why are you carving open my perfectly healthy patient?"
It took 28 days, bedridden, for my body, my compromised immune system, to let the radiation do its job. So I lucked out on that.
Are you in a relationship now?
Are you open?
I have not been. I am open, yes. Not always the case. I've had two intense relationships in my life. The last one ended in 1985. It hurt. It was very intense, a very deeply connected relationship. It was with a man I refer to as my daddy. I'm a member of the leather community, and he was my dad, my sir. We were very committed to one another. When that ended I swore that I would never feel that pain again, and so I closed myself off. I got caught up in drug addiction to mask the feelings and hide everything. I didn't know I was doing that at the time, but hindsight is 20/20.
I came out of that stupor just prior to the cancer diagnosis. As I was going through the therapy for the cancer, all I wanted was for there to be somebody there to say, "It's going to be OK." And there wasn't. There was, but they weren't my ideal. They were supportive. They were friends. They weren't friends with benefits. I had intimate relationships with these people, but it wasn't the same. It was just loving, nurturing people in my life.
Can you talk a little bit about the leather community, and what it's meant for you?
Well, it's funny. After the chemo, radiation, I'm in remission; I'm going to the doctor. I'm somewhat stable with my viral load and my T cells, but I hit a hiccup because of the damage done, the colitis from the radiation. I have to take these meds that line my intestinal wall, which makes it very hard for the ARVs to be absorbed.
So now my viral load is spiking, my T cells are dropping and we can't figure out why. And then we finally figure it out. I'm sorry, I forgot the question!
It was about the leather community.
Oh! So my doctors tell me to go out. I'm as healthy as I'm going to be. And, go out! I go out and one of the side effects is I wear diapers for the rest of my life, as opposed to a colostomy bag. It's all about vanity: "Listen, I got some baggage. I got AIDS. I got hepatitis C and, oh, don't mind this!" I refuse to do that.
I would go out on dates with guys and they would laugh. And so I would just shut down.
Then I came across this group of men and women in the leather community in Asbury Park, New Jersey. They embrace me, and lift me up. They don't care. They don't judge. I find out that they are also activists. Not all of them are positive, but they've been around long enough, and they're a large enough group to where they have people that are struggling with cancer. They have people that are struggling with HIV. They have people that are struggling with hepatitis C. And they don't care. They just embrace one another, and lift them up.
And they do fundraising. They just opened a new LGBTQ youth center in Asbury. They support a home for people with AIDS in Asbury. So they're like the hub of activism in New Jersey. And that's what I like to do. I like to give back now. Because I've been given this gift. And, no, HIV is not a gift; I'm not saying that. I've been given this gift of clarity -- that that's why I'm still here, 30 years later, is so that I can help. And I can work with ACT UP.
I went and I saw United in Anger. I walked out of that place, and I thought to myself, "These are the people that saved my life." They're the ones that went to the CDC, and NIH, and all of that, and got the protease brought to market. Not even the protease; they got ddI [Videx, didanosine] and d4T [Zerit, stavudine]. I've been on all those meds. And we never would have gotten them if it weren't for the activism that was done.
And so I feel today my responsibility is to carry on that mission, till we find a cure, till we find a vaccine. You know? I'll be happy with a vaccine. I don't know that somebody that's had this virus for 30 years can ever be cured. It's manageable. Hiccups along the way. Right now, I'm struggling with a hiccup.
But there are new meds coming out. So I have an obligation to do my part, to help stop the spread that is now back to the levels it was during the plague years.
Apart from being part of the leather community, you're also a U.S. veteran?
Yes, I am.
Can you say what branch of the armed forces?
I was in the Navy.
1976 till 1978. I was discharged because I was gay. It was before "don't ask, don't tell." I had to write a letter to our commander-in-chief, which was Jimmy Carter, the president, and explain to him I had top secret security. I was a very good sailor. But as soon as they found out that I had this attraction to men, they decided that they wanted to discharge me. I was caught with another man. He got a less-than-honorable discharge. But I had top secret security.
So you got an honorable discharge?
I got an honorable discharge, because I fought. That was the beginning of my fighting for my rights. I fought. I told them, "This is a problem you have. I'm a good sailor. You don't want me because I happen to be gay." I said, "So you're the one missing out, because I do a very good job." My record proved that, so I was granted an honorable discharge.
I'm very interested in this story because the '70s were a very different time than what we're living in now. I mean, Stonewall had happened. People knew gay people existed. It was in the conversation, but I feel like also AIDS activism caused people to talk about gay people even more and that had not happened yet.
No, it hadn't.
When you were in the military, there were still very few rights to talk about.
I witnessed homophobia. I was on board ship with people from Arkansas -- nothing against Arkansas, and Ohio, and country boys -- and to them, homosexuality was wrong. You know? It was disgusting. It was filthy. It was dirty. So I had to hide that from them, until I was caught -- although there were members in my division that knew, because they weren't homophobes. I boarded with them. I was on board ship with them. We were out at sea together. We would stand watch together and we would start talking. They would tell me about their girlfriends. It was like, "I can't identify, because I don't date women."
But when they found out, they were going to send me on a North Atlantic cruise; and I vehemently said no. Because word would have gotten out. And there's not a doubt in my mind that I would have been thrown overboard, in the middle of the Atlantic Ocean, because of the hatred.
So when I came out, I came out to the people that I had to come out to in the service. It's not like everybody on my ship knew, everybody on the base knew. My commanding officer knew. My division officer knew. My chief knew. My supervisors knew. My coworkers knew. But the other men on the ship didn't know.
So then who caught you?
I wasn't caught on board the ship. I was caught at the commissary. It was a known "tea room." There was a sting operation. They arrested 36 of us in 18 days -- everywhere from seamen (no pun intended) to admirals. And every one of them were disciplined.
They gave me the opportunity that if I said that it was an isolated incident and I would never do it again, then I could stay in the Navy. I said, "No, I can't. Because that's a lie." So that was like my coming out. I had just come out to my family six months before that. So, I was 19 when I came out to my family?
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