Humans of TCGMC: HIV Dialogue – RESPONSE

Humans of TCGMC: HIV Dialogue – RESPONSE World_Aids_Day_Ribbon

JOSH: CARLOS, ONE THING WE HAVEN’T DISCUSSED YET IS THE LOVE AND SUPPORT YOU RECEIVED FROM THE COMMUNITY WHEN YOU CAME OUT AS POSITIVE.

Carlos: After I found out I was positive, I reached out to was a friend I met in rehab who does a lot of work in public awareness and education around HIV. While I was sitting in that room [at the doctor’s office] alone, I texted him, even though he lived on the other side of the country, just to say “Hey, I found out I’m positive, I’m kind of freaking out.”

And he inundated me with resources, and even said, “I’m sending you one of my, ‘No Shame About Being HIV+’ t-shirts, and you’re going to be fine.” I knew a lot of people who were HIV-positive and living very healthy lives in recovery. I immediately leaned on all that support. I was connected to care immediately and I had an appointment with my HIV doctor the very next day. She has become my primary physician that I still see today.

I also got connected to resources like the Minnesota AIDS Project (now JustUs Health) and the Aliveness Project. I was instantly part of a community of people who were saying, “You are okay. Everything is going to be okay.” I needed that, and I needed to dive right in, because I did not feel okay. The friend asked me to write an article about my experience of getting diagnosed. That article was published for World AIDS Day on their website and then I linked it on Facebook. I wasn’t okay with my diagnosis, but I had hope that I would be someday, and I felt compelled to share that through writing that piece. “So here’s this article I wrote. I’m HIV-positive everyone.”

Glenn: This was how long ago?

Carlos: December 1st was World AIDS Day, and I was diagnosed July 21st [2014]. And I did that very intentionally. Today, there’s virtually no shame, but that was obviously not the case when I was first diagnosed. And I thought, “This will be great practice of just putting it out there and letting it be.”

JOSH: ON DATING AND SEX APPS, YOU HAVE THE OPTION OF LISTING THAT YOU’RE POSITIVE. WE’RE SINGING A SONG CALLED “I’M CLEAN” WITH THE IMPLICATION THAT BEING POSITIVE MEANS YOU’RE DIRTY. CARLOS, HAVE YOU ENCOUNTERED THAT PREJUDICE?

Carlos: Yes. Not a whole lot. I also became abstinent for a very long time. Not that I was afraid of transmission, but I just wasn’t ready to have the conversations yet. It took me a while to get there.

JOSH: WHAT ABOUT YOU, DAVID? HAS ANYONE SAID YOU WERE DIRTY? WE ALL KNOW YOU’RE ABSTINENT.

At this point, there is a brief pause, followed by an eruption of laughter from all. 

David: Mhmm. Usually it’s, “Are you clean?” On all the sites, I always put that I’m positive, and I usually respond, “Yes, I took a shower, and you need to read better!”

JOSH: I’M GOING TO GO VERY DARK FOR A SECOND. WHAT IS THE WORST THING THAT HAS HAPPENED TO YOU AS A RESULT OF YOUR STATUS?

Carlos: Kevin takes the prize [for getting diagnosed his senior year at the US Naval Academy, and becoming ineligible to continue in the US Navy]. But I feel as though my HIV diagnosis was a gift that gave me more of a voice, and I’m actually really grateful for it.

Kevin: Sure, it sucked for a while, but it also gave me a community to fight for. A cause to advocate for. I largely feel at peace with my status. I know my self-worth. As a person, it’s made me stronger. More resilient.

Glenn: Well I have the exact opposite. The Minnesota AIDS Project was around in the early days, but I did not take advantage of any of that. I went the opposite way. It wasn’t a cause, it was “How can I keep this information to myself?” That was my whole M.O. for a very long time. The hard part for me was telling my family and convincing them I was still going to be around. Everybody thought I was going to die the next day.

David: Can I tell a story on you?

Glenn: Sure?

David: We were at a party, and you asked if you could talk to me. And you said, “I need to apologize to you. I should’ve sung with the Positive Voices at GALA [2012].” I looked at you with a bit of shock, and you said, “You do know I’m positive, don’t you? And I was like, “NO.” And you said, “Oh, I thought you knew that…”

Glenn: And I apologized to each of the 5 guys that sang. I felt horrible. I know one of them came up to me after, and I was sobbing. I should’ve been up there. I’ve forgiven myself since, but…

Kevin: Well I don’t think there was much to forgive. It’s everyone’s individual decision to make. And no one should feel pressured to be out to the whole world about their status. It’s your own private medical history. Not everyone’s journey ends in being “out.”

Glenn: But I’m jealous of the two of you [Kevin and Carlos] who have made it a cause. I know I couldn’t, but I wish I would’ve done that in the earlier days.

Carlos: I also have a lot of gratitude for the people that I was able to lean on, and I feel that’s something I want to do for others, pay it forward, regardless of whether I know you’re benefiting from my disclosure and my openness. Because I’m so grateful for the support that I had.

Glenn: The way you’ve explained it, Carlos, makes sense. If you’re out, just like when I talk to you, then it gives people the opportunity to talk to it about it.

Carlos: There are moments when my openness is challenged, where I don’t speak up. Very recently, I was facilitating a new hire orientation at work, and one of the things we have to talk about is bloodborne pathogens – treating all bodily fluids as if they could be potentially hazardous. One of the new hires, who was an experienced EMT, said “Oh yeah, you always treat all blood like AIDS blood.” And I didn’t say anything, because I didn’t know how to address that in the moment.

An audible gasp.

Kevin: Carlos talked about wanting to be a visible person for someone who just got diagnosed, and wanting to “pay it forward” in a sense. I feel that, and I also feel, as someone diagnosed in 2014 – and I want to preface that this is a personal decision that I feel is right for me, and others who are diagnosed as positive should not necessarily feel the same obligation – I want to be not only there for people who come after me, but also paying back the generations who have come before me. Both long-term survivors and everything we’ve lost. I view my openness as the next chapter of building on the legacy of what some may call the “AIDS Generation.”

JOSH: YOU MADE ME THINK OF ONE FINAL QUESTION, KEVIN. THANK YOU. HOW DO YOU EACH OF YOU PLAN TO PAY IT FORWARD?

Kevin: What does that mean? I want to lightly challenge the assertion that we necessarily have to pay it forward. Do I pay it forward to whom, or… I don’t believe that any of us has an obligation to anything but taking care of ourselves and living the lives each of us is meant to live, with or without the virus, that is the way for each of us to pay it forward, and to pay it back to those who came before.

David: That’s my reaction to the question. I won’t pay anything forward, but I will try to live authentically. Hopefully I do that in a variety of ways so people get to know who I am. I don’t feel the need to get on a soap box, but I also don’t want to be hidden. I just want to be authentic.

Glenn: The last couple of years, I’ve been more open with friends and people around me, and not making it a big deal. It shouldn’t be so much of the “let’s sit down and have a serious talk.”

Kevin: It’s interesting when you bring it up casually. I’ve tried to do that more. But again, the onus shouldn’t be on us to be leading everyone. Many of us will be the leaders in this, but…

David: My HIV med is not the only pill I take in the morning. I’ve got one for this, I’ve got one for that…

Glenn: Welcome to old age!

Carlos: I do like the notion of living authentically, and cultivating more love and self-advocacy.

David: And it’s not your job or our job to save the world.

Kevin: We all need to remember that we can’t always worry about someone else’s sexual health. My point is, we shouldn’t concern ourselves with someone else’s sexual, physical, and mental health more than we think about our own. We’ve got enough to concentrate on when it comes to our own health without worrying about others’. It’s about self-care – self-love.

David: If we’re not talking about it, very few others are. I get very upset when we don’t have red ribbons on during our concerts. There’s nobody else putting ribbons on for HIV. We need to remember that we do have that responsibility as gay men to keep talking about it – not just for the gay community, but for a larger audience.