Ed Barron Is Not HIV Positive, He's a Person Living With AIDS and Complications
May 2, 2014
Two days later, I'm walking down the hallway and I'm praying. I'm saying, "God, why am I still here? Why have I made it when all my friends are dead? I'm the oldest living fag I know." It's true. I was. And I'm standing outside room 212, and here's this poor man, fumbling through a file folder. Now, he hasn't been in physical therapy, or anything, because he can't do it.
I go in. I knock on the door. I say, "Hey, how are you doing?"
He said, "Not so good."
I said, "What's the matter?"
He says, "I've been here all day." I know he's been there three days. "My family doesn't want to be around me because I'm so sick. My friends have disowned me."
I say, "I understand."
He said, "How could you possibly?"
I said, "Because I have AIDS, too." All of a sudden, I was his best friend. Somebody got it.
I sat with him. I fed him. He hadn't eaten in three days because he gets nauseous. I learned when my friends were dying, when you see a plateful of food when you're that sick, you get sick. In the hospital, you've got the luxury. You've got that cap on the food. So you take a bite. You put the cover on it. You eat it. All right? Then you take it, and you take another. And it worked. I got him to drink two Ensures, which he hadn't.
The nurses laughed at me. "He won't drink that."
I say, "Come on. You've just got to show him some love." And, sure enough, he made it through the night. I didn't think he was going to.
I sat there and held his hand. One of the nurses came and gave him his meds. One was Xanax [alprazolam]. I knew that in a half hour he's going to be out.
I went to leave and he grabbed my hand and he said, "Please don't go." So I sat with him till he fell asleep. Every hour when they woke me up to take my blood pressure or change my drip, I would run down the hallway to make sure he was OK, and he was breathing. It's like, ohhh.
In the morning, he was moving. I said, "Oh, damn!" When I went back later on, they were sanitizing his room, and I was upset. I thought he died. He didn't. They moved him back to the hospital because they couldn't show him the kind of attention I showed him.
So as soon as I left, I got a hold of my case manager, my medical case manager at Ryan White, and I said, "Rob, what happened to the buddies program?"
"What happened to the mentoring program?"
"No money. Is there a need?"
"Yeah. How do you do that?"
He said, "You've got to get involved." And that, compounded with seeing United in Anger, brought me into New York, because that's where ACT UP is. I wanted to meet the guys that saved my life. I wanted to meet the Pete Staleys, and the Jim Eigos, and the Anthony Autoharp -- I don't even know if that's his real name. I wanted to meet these guys and thank them. And Mark Harrington.
And I've had that opportunity. I consider them to be friends now. These people, without them, I would have been one of the casualties back in 1988, 1989. But I survived the plague, the plague years. So I have an obligation to carry forth. Because they're getting old.
I have the utmost respect for my predecessors. But it's not over yet. That was the message at United in Anger, which was put on by Visual AIDS. And now I have friends in Visual AIDS because they moved me. Their message was, "It's not over yet."
So everything I do, I remember what it was like. And I always end it with, "It's not over yet." We've still got a lot of work to do, you know?
VOCAL-NY today just got the rent cap. Is that awesome?
That doesn't impact me. I live in Jersey. But it impacts me because thousands of my fellow men and women with HIV and AIDS in New York will be able to have a better quality of life, because they won't pay 70 percent of their Social Security toward rent.
And I know those people by name. How is that possible? You know? I'm blessed. I know you! And you're a special man. And I'm not blowing smoke up in the camera. I believe that about you. I've always thought that about you. That's why I bring you falafel.
Well, since you are talking about today and, especially, the rent cap, what do you think are the biggest issues that need fixing in HIV today? Or what are the biggest obstacles facing the community?
The outreach to the at-risk population. I don't see anything in print out to the masses anymore. I don't see banners on the subway about knowing your status. See, when I was kid growing up in New York -- and I was born and raised here -- I used to take the subway, the IRT, the 4, 5 and 6 line down Lexington Avenue. Every sign was in Spanish and in English. And it usually had to do with birth control, because that was the big hot-button back then -- and abortion. That's how I learned Spanish. Because I would sit there, and I had the visuals.
Why can't we do that today? I see that there are some buses up in sections of Harlem that have banners on the side. Where is the city's response to getting out to the gay black youth? They have their own stigma associated because of how it is perceived. What was that thing last week about, "We stone faggots"? Or "We stone homos"? In 2014, really? What are we doing to reach out to them, to the transgendered community (which is ostracized)? Even within the gay community they're discounted because they're different. How dare we? These are our brothers and our sisters. They need us to nurture them and bring them into the fold.
With the Affordable Care Act, we've got that opportunity to get people into care, to get people to get tested. That's the challenge that we have. The government's going to do what the government's going to do. We have to push them.
ACT UP was instrumental in getting -- and I was part of that protest -- getting the Department of Health and Mental Hygiene. And that worked. Direct action will work.
How do you get people motivated? And that has to come from within.
We had two wonderful movies that came out: United in Anger and How to Survive a Plague. That was good for those of us in. Now we've got a movie out called The Dallas Buyers Club. Middle America is talking about it again. Whether it's fact or fiction, it doesn't matter. At least it's on the table.
How do you think having HIV has changed you?
In which decade? It's made me more compassionate toward other people with disabilities. See, I don't consider myself to be disabled. I am on SSDI; I'm handicapped. I can't physically do what I used to do. And that's, strength-wise, because I've been inactive. So now I'm going to start going to the gym. I can get back on a bicycle. They told me I'd never ride a bike again. And I had massive -- my nephew used to comment -- I used to have massive thighs because I rode a bicycle all the time. So that was taken away from me.
I refuse to live by that, and now I'm back on a bicycle. So it's made me more compassionate for people that have physical challenges, that maybe have mental disorders. I have had numerous therapists and psychologists who want to put me on psych meds. They say I'm bipolar because I have mood swings, ups and downs. And it's like, listen. You take 18 pills a day. You get up some days and don't want to put your feet on the floor. You're not going to be in the best of moods every day. Don't give me medication to mask those feelings. I'd rather feel them and go through them than try to hide them.
So I've become more compassionate, more understanding. I'd like to say more tolerant, but I'm not. I'm still a very intolerant person. I get offended easily. I wish I had a thicker skin. But I allow people to intimidate me. I wish I was stronger. That comes with knowledge. So the more knowledge I gain by following the Mark Harringtons, and the Tim Horns, and the Mateos, and the different bloggers out there, the Jeremy Hobbses, and keep my ears open, and try to gain more information, the more educated I can be, the more secure I can feel about the information that I'm disseminating.
You know, ignorance is not bliss when it comes to HIV. Everybody has a responsibility to know their status, to do what they need to do to protect themselves if they are negative and if they are positive, to get into health care.
What advice would you give to someone who just found out that he or she is positive?
Seek out a good doctor and support group. Don't be ashamed. It's a virus. It's not a moral deficiency, OK? It's just like everything else. Today, it's not a death sentence. It's treatable. You can live a long productive life if you take care of yourself. But you can't do it alone. You have to have the support group.
If you need psychological help to get over the trauma, then seek it out. Open yourself up to all the resources, particularly in New York, that are available to you. And yeah, there's a lot of crap. You've got to jump through a lot of hoops. But your life depends on it. Your quality of life depends on it.
And get involved with other people that are in the same situation as you. Look: I'm a member of ACT UP. Not everybody in ACT UP is HIV positive. They're just people that care. There's a lot of people like that. Not everybody in my life is HIV positive, but they're compassionate people.
And those that are haters, are haters. Haters are going to hate.
So there are still haters out there. But being HIV positive is nothing to be ashamed of. And there are resources available to you. There's tools available that weren't there then, because everybody was scared.
The leather community, you asked me about that. The leather community was decimated by HIV, and they went underground. Nobody wanted to talk about it. Thank God, those dark ages are over with.
The truth of the matter is, we're all responsible for our own well-being. But we also have a greater responsibility to the community at large. And that's to know our status, to be involved in health care. That's the message I would say to anybody that tests positive: Get into the system. Watch out for yourself.
This transcript has been lightly edited for clarity.
Mathew Rodriguez is the community editor for TheBody.com and TheBodyPRO.com.
Follow Mathew on Twitter: @mathewrodriguez.
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