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.
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?
We're going to switch tracks to talk about your health. Actually, you have talked about what your health has been like since your diagnosis. But can you talk about how you found the HIV specialist that you have now, and what your relationship is like to your doctor?
I have gone through many HIV doctors. Joseph Cronin, who was world-renown, was my doctor in San Francisco. Hated him! Sorry.
The doctor I had here in New York when I tested positive I was turned on to accidentally by my roommates.
He was a wonderful man, and I watched him nurture my friend until my friend died. So I was blessed.
So I had this doctor here in New York, Daniel Brook, over on West End Avenue. I moved to Philadelphia and I got hooked up at University Hospital down there. I had a wonderful ID doctor down there.
Then I moved to San Francisco, and I had Dr. Cronin, but I didn't like him, because he was big business -- because he was world-renown. He had this huge practice. I never really got to see him. But through him, I met this other doctor. And it wasn't the doctor; it was the physician's assistant. That was the case in Philadelphia, as well -- it was never the doctors; it was the physicians' assistants. It was the support team. They're the ones that tried to help me.
They all knew I had a problem with drugs. They kept asking me, "Do you think you have a problem?" Of course, I was in denial and I was saying, "No, no, no. I can handle it. I've got it under control." Meanwhile, I'm putting needles in my arm like five times a day.
I come back here, and there's a conglomerate of infectious disease doctors out where I live. I go, and they want to be the top 100 ID doctors in the country. That's their role. I'm not there for them.
They weren't centered on the patient.
Right. They were thinking: the prestige. Because they want to be leaders in HIV. Because, all of a sudden, there were a ton of ID doctors. Didn't mean they were all qualified; they were just caught. So it wasn't working for me. I had one of the five doctors in that group that I got along with really well. It was a female doctor. I seem to do well with female doctors. But it was getting old. It was getting harder and harder to make appointments with her because it was such a large practice.
And I had heard about this woman called Dr. Renee Frankel. She calls me her miracle patient. I went to see her. My insurance changed. I went out on disability. I was still HIV positive, but I was sick. I had second-stage syphilis. So I had to walk around with a pump for 10 days, getting IVs, and getting blasts every four hours. I switched doctors. I switched medical providers.
So I went to this new doctor. And the first day I met her, she looked at my chart and she said, "Aha. You're one of those."
I said, "What's that?"
She said, "You like to play by your own rules." She said, "I'm here to make you get well. If you want to die, go find another doctor." She said, "If you don't follow my instructions, I'm going to kick you to the curb."
It was like, "All right, I can deal with that." Because that's what I need. I need somebody that's not going to co-sign my crap. And she hasn't. She got me through some of the most difficult times that I've had physically.
After two-and-a-half years in remission they tell me, "You're as healthy as you're going to be." I go out, and I'm getting rejected because I wear diapers. It's like, "Well, screw this. I'm going back to what I know, where all they care about is how high I get." Right?
So I relapse, and I'm afraid to tell her. But I don't have any choice because I've done such a bad job that I wind up with all these bacterial infections and C. diff [C. difficile infection]. I'm in the hospital more than I am at home. And she's nurturing me. When I relapse and I tell her, I expect that she's going to go ballistic. And she doesn't say a word.
So the second time I see her, I say, "What's the matter? You didn't give me a hug."
She said, "I understand addiction, Ed. It's another disease. But that, I can't treat you for. That's self-diagnosed and you have to find your own way through that disease. I can treat you for hepatitis C. I can treat you for HIV/AIDS. I can treat you for every other physical malady. But I can't treat you for psychological addiction. You need help, and I'm not going to kick you to the curb for that. I'll kick you to the curb if you don't take your HIV meds."
So she's not only my physician, my infectious disease doctor, but she has steered me to a team of other specialists. I have the best team of doctors that anyone could imagine. And now I'm moving to Asbury Park, and all that's got to change. But through her, and her network, and knowing what I need, I'm sure the transition will be smooth.
That's great. What HIV meds are you on currently?
I also have to take Valcyte [valganciclovir] to prophylax for CMV, because I have chronic CMV. That was something that was found out when I had the anal cancer. I take Bactrim [trimethoprim/sulfamethoxazole], which is not an antiviral; but I have to prophylax for PCP, because my T cells are so low, and because I have herpes. So I take Valcyte for herpes and CMV. When my T cells go up over 250, I can stop taking Valcyte, because I don't have to prophylax for CMV. But I have to take Valtrex for the herpes. And then I have to take meds for my digestive system. So I take 18 pills a day.
Do you get to go off the Bactrim after you've hit a certain CD4 count, also?
Yes. The same thing with the Valcyte. Once I'm over 250 -- actually, for me, it's 200 because of my history -- once I get up over 200, then I can change the remedy; I can change the medicine.
What's your most recent CD4 count and viral load?
My viral load is undetectable. It has been for six months. My T cells, on the other hand, were at 210; then they went to 189; and now they're down to 149. I will see her next week and we'll try to figure out: Is it malabsorption, because of the stuff I take for my digestive tract? Because if I don't, I wind up with diarrhea, and then I wind up with C. diff, which puts me on antibiotics. So it's just -- it's a nightmare.
I get offended when I hear, "HIV is one pill a day." It is for those early detected. But for somebody that's been through the plague years, somebody that's had the virus since before protease [pause.]
I read an article today where a gentleman takes 32 pills a day. That's my story. It doesn't have to be everybody's story. A lot of young people don't want to hear my story because they consider it to be a war story. But that doesn't mean that it has any less validity. I'm grateful that the younger generation, the newly diagnosed, don't have to go through what I went through. But I also want to say we didn't know any better when this first came about. We were caught off guard.
How do you access your meds? Through private insurance? Medicaid? ADAP?
I have very good insurance. I have Medicaid, and Medicare. So I'm not impacted by the Affordable Care Act. The only reason that I have Medicaid is I'm on what they call the WorkAbility Program. As long as I stay employed, I will have Medicaid. If I stop getting a paycheck, then I'll lose Medicaid and then I'll have to apply for the Affordable Care Act, or ADAP -- I'm sorry, no; it's expanded Medicaid.
I have been on ADAP in the past. I've been on PAAD, which is the [Pharmaceutical Assistance to] the Aged and Disabled, because my income level would be too high. I've also utilized HOPWA, which is also Ryan White-funded, a housing opportunity for people with AIDS. In New York, it's called HASA, I believe.
In New Jersey, it's called HOPWA. But I've transitioned off of them because they are programs of last resort and I do my best to stay productive in society. I have part-time jobs. I don't like them, but I have them in order to be able to do what I want to do, which is come to New York, attend meetings -- ACT UP, TAG, VOCAL, all the groups that are leading the fight for people like me. Whether it's in New Jersey or New York, it doesn't matter. We're all in this together.
This is a cheap plug for Mr. Friendly. [Editor's note: Ed holds up the necklace he is wearing.]
You can hold it up a little bit. Yeah.
Mr. Friendly says that whether you're negative or positive, we're all in this world together. I actually have a pin for you, Mateo, if you'd like it. A friend of mine who is HIV negative fell in love with a guy that was positive. And for two years, all he heard was, "Why? Why? You're going to turn up being positive!"
And the guy that was positive kept hearing, "Why are you letting this guy get close to you? You're going to wind up converting him to being positive! Don't you guys have any morals?"
For two years the guy that was positive refused to let this guy in. But he was so persistent that they finally got together. They've been together seven years. And the one guy is still negative. Because they know the risks. They practice safer sex. So they got tired of hearing it.
They came up with this campaign. I was introduced to it last year at Gay Pride New York. I marched. We started on, I think it was, 49th or 39th, and Fifth Avenue. We started out there with 30 of us; by the time we got to Washington Square Park, there were over 200 people that fell in behind us. Because it's fighting this stigma.
Everybody talks about the stigma associated with HIV, and it's still very real. So by me being out about my status, that's what I do to fight the stigma. I'm not some kind of freak, some antique. I'm a live, viable guy that still has those desires that everybody else has. I just have a virus.
A lot of what you have been talking about, and just did talk about, was kind of your foray into activism. When would you say you started claiming that label as an activist?
When I saw United in Anger.
That's right. I'm sorry. You did say that -- when you saw United in Anger.
I had gone to a workshop by a group called The Body Electric in Philadelphia, and it was a rebirthing. For me, it was taking a look at all the baggage: the fact that I have cancer; that I have hepatitis C; that I have AIDS; that I have herpes; that I was abused as a child -- all this crap that I lugged around on my shoulder, feeling sorry for myself. I realized that all those things that I'm looking at in a negative light, I could turn around into a positive light. And they've made me the strong guy that I am that can fight HIV for 28 years. I've had the virus half of my life. I don't remember life before HIV. What I do remember is mixed with a lot of joy, and a lot of sadness, because that's when my relationships ended. Both of those gentlemen are dead from the virus.
And I watched the one guy. I went back to visit him and he was on a drip. His house reeked of feces. He was half the man that he was when we were partners. That is burned into my memory.
I did this Body Electric workshop. I go to Asbury Park and I meet these guys that don't care that I have to run off into the bathroom and change my diaper three or four times throughout the course of the night. They're embracing me. They're lifting me up.
Then I see United in Anger. And I go to the hospital. I'm in the hospital one last time. There's this gentleman, laying in the hospital bed. And the nurse, her name is Joy. I love telling this story. Her name is Joy, from French Guiana. "You've got to go talk to the guy in room 212."
"I don't want to talk to nobody. Just give me my meds. I want to go home."
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.