Stories of Hope
Battling the Stigma
Story & Recording by Hernando Umana
This is by far the most important, scary, liberating post of my life. Here we go — 10 years ago, at a young, young age of 20, I was diagnosed with HIV.
I’ll never forget the moment they told me. It wasn’t possible — I had only slept with three people in my life! This can’t be true.
The first words out of my mouth were, “How long do I have to live?”
That’s how uneducated I was about. it. It had been drilled in my head that gay people get HIV because of wrong-doings and they deservingly die from it. Well, I’m here to shut that shit down.
There is nothing wrong with me, and I am healthier than I’ve ever been. In the last 10 years, I’ve met countless of HIV-positive men. Some of these men are so affected by the stigma that they don’t tell a soul about their status, even go as far as not taking their medication.
In our extremely privileged community, the stigma is more dangerous than the disease. We still have a lot of fighting to do for the people who don’t have the privilege of cost-effective medication.
So I stand on the shoulders of people like @staleypr, who risked his life for us. I stand on the shoulders of the millions of people who had to suffer and die from this disease. I stand on the shoulders of the gay men who were forced out of the closet in such a scary time. These men and women fought and died to get to where we’re at now: To take a pill at night and never have to worry about dying. To get the disease to a point where it is impossible to transmit (undetectable).
How can I be ashamed of this? I honor their legacy by telling my story. So let’s talk about it. Let’s ask questions. Take your PrEP. Use condoms. Be safe. Let’s end this stigma forever and eventually end HIV forever!
To those who have questions: Don’t feel dumb asking anything about it. It’s not your fault there’s such a lack of education out there.
To those who are afraid to talk about their status: You’ve got at least one guy right here 🙂 You are loved. You are beautiful, and there is nothing wrong with you.
I, Hernando Umana, am a proud gay man LIVING with HIV. Fuck, that feels good to say.
POZ magazine: Help, Hope, and HIV
Story and Recording by Sean Strub
I’m Sean Strub, and in 1994 I founded POZ magazine with the tagline “Help, Hope, and HIV.”
Hope was important. At the time, not many people believed there would be many survivors, if any, of the epidemic. And while the media context at the time was AIDS was inevitably fatal, dread disease, terminal illness, no treatment, no cure, no survivors – I was living in a world full of people with HIV who were living vibrant lives, raising their children, making art, going to school, creating businesses, engaging in activism, going to demonstrations, caring for others, despite this tremendous health challenge that was likely and only did kill most of us.
It was important to show the example of people who were leading vibrant and full lives, despite that challenge – especially for people who were culturally and geographically isolated and didn’t have the option of going to an ACT UP meeting in the Village and being surrounded by that kind of support.
At the time when we started the magazine, we had a number of, sort of, rules. When we had science coverage, we made sure that a person with HIV was quoted in the first few paragraphs of the story. We didn’t want to hear just from scientists or just from the clinicians; we always wanted to hear from people with HIV themselves.
We sought to make stars. We put people on the cover no one had ever heard of. They weren’t famous; that’s not why we put them on the cover. They were doing really important and inspiring work, and we wanted to bring attention to what it was that they were doing.
The idea of the magazine was to strengthen our community, foster empowerment, resistance and pride, and give that example of survival and hope to people anywhere who read the magazine.
Our first issue featured Ty Ross on the cover. Ty was a very attractive young man who was the grandson of famously conservative presidential candidate Barry Goldwater. He was interviewed by Kevin Sessums, who at the time was the top celebrity interviewer for Vanity Fair magazine. Hollywood photographer Greg Gorman took really great pictures of Ty, added to the appeal.
Frank Rich was a columnist for the New York Times, and he called POZ “easily as plush as Vanity Fair, and against all odds, the only new magazine of the year that leaves me looking forward to the next issue.”
We were criticized, even for the fact that we had high production values and glossy paper and beautiful photography. As if somehow people with AIDS had to have a publication on newsprint with typos, or something. I never understood that criticism. At the time, the publisher of The Advocate said to a trade publication he didn’t understand why anyone would ever advertise in a magazine with such a grim topic.
In those first years, every month, we ran my lab work — the actual scan of the report from NetPath or Quest or whatever the lab was — and explained each of the different things on it. And then we had different physicians and experts comment on my health.
One of my very favorite ones was when my CD-4 count was down, I think, to 1 and my viral load was in the millions. And one doctor looked at my health records and said: Sean is in very serious shape, he is at great risk at becoming ill, and what he needs to do immediately is A, B and C.
In the next paragraph was a different doctor, also an expert, and said: Sean’s situation is dire, but what he shouldn’t do is A, B or C. He should be doing X, Y and Z.
And it wasn’t about trying to call out one doctor or the other. That was the reality at the time is that people were getting conflicting advice even from people who were expert and well-meaning, because so little was known about how best to treat the disease and the opportunistic infections that arose from it.
We were also very focused on the Clinton administration and their failure to support syringe exchange programs when the science was utterly clear that they were incredibly effective at reducing HIV transmission. And that became a campaign that went on for several years. And we were a thorn in their side.
Bob Hattoy, who worked in the White House, used to surreptitiously report to me what people were saying at meetings when the topic came up or things about the epidemic came up.
A year or so after we started, my health had really plummeted. I had spent the money I had saved in my life; I’d sold my insurance policies to fund the magazine. My CD-4 count was almost non-existent, I had pulmonary Kaposi’s sarcoma in my lungs, and I had lesions all over my body. But we carried on, and we found a path through to a point where POZ became the most trusted information source for people with HIV.
In survey after survey, done by us or by government agencies or even the pharmaceutical industry, found that people with HIV trusted POZ more than they trusted even their own personal physicians or any non-profit organization. The only category of information source that they trusted more were their personal friends who were also living with HIV.
In 2004, I sold the magazine and it found a new life online with a much broader audience around the world.
I’ve done a lot of things in the epidemic. I was involved with ACT-UP, co-chaired the fundraising committee, raised a lot of money. I was at demonstrations at St. Patrick’s Cathedral, climbing on the top of Jesse Helms’ house, putting a giant condom over it, working with the People With AIDS Coalition in the early ‘80s even before ACT UP was around, running for Congress as the first openly HIV-positive person to do so in 1990. I produced David Drake’s hit play The Night Larry Kramer Kissed Me, and in 2014, I published a memoir called Body Counts.
But POZ holds a very special place in my heart, because of what it came to mean to so many millions of people living with HIV and affected by HIV in the U.S. and around the world. And I’m proud that it endures and our community endures.
New Arrivals
Story & Recording by Ed Wolf
A friend says 2020 is the year that won’t stop taking, and I feel it too, a deep sadness.
When I worked on the AIDS Ward at San Francisco General Hospital in the mid-1980s, I had a constant heaviness in the center of my chest. It was always there and difficult to know what to do, what to say, where to go.
Sometimes, when patients were feeling it too, we’d go upstairs to Labor and Delivery. We’d stand outside the nursery window and watch the new arrivals.
Years later, when AIDS finally came into my house and my friend Bob had only a few months left, my nephew Tommy was born.
I remember one day, we drove out to the East Bay so Bob could cradle Tommy in his arms. On the way home, Bob wept so deeply.
“What is it?” I asked.
“I wanted to hold someone,” he said, “who has just come from where I am going.”
Tom Rolfing, 1949-1990
Story & Recording by Ralph Bruneau
Dear Tom Rolfing,
It has been such a long time since you’ve been gone. I honor your life, death and the years we spent together. You were my first real love and biggest loss. I am forever in your debt. So much of who I have become is due to our time together.
We were: Summers on Fire Island, cocaine and Scotch, Upper West Side and West Village, sexy boys, quaaludes, Cartier roll rings, Studio 54, ordering in Chinese food, Levis and white tees.
Then AIDS came and we were: Kaposi’s sarcoma, doctors and hospitals, ACT UP, funerals, terror, wheelchairs and hospital beds — and then you were gone.
I want you to know that I’m still here and fighting. I am well and able to love in a way I couldn’t have imagined back then. You are still in my thoughts and in my heart. I think, I hope, that you would be proud of me.
I remember you. I remember us. I love you.
A Mother’s Unconditional Love
Story & Recording by Aaron Holloway
I never even told my mother I was gay and she didn’t know. While lying there in what I perceived to be my deathbed, I thought that my mother would abandon me. She never did.
I was a graduating senior at Prairie View A&M University in Texas and on my spring break visiting my mother when I was diagnosed with AIDS and end-stage renal failure. When I arrived home, I was greeted very warmly by my mom. Her retirement party was that night. Over the weekend, my health continued to deteriorate. On March 10, 2008, the anniversary of my father’s passing four years prior, my mom insisted on taking me to the emergency room. She drove us to the hospital, where I was born and where my father passed away. I was beyond terrified.
After check-in and having my vitals taken, the nurses began taking several laboratory tests. Within 24 hours, I was checked into the hospital and had an AV fistula implanted into my heart. I was diagnosed with end-stage renal failure. The nephrologist assigned to me was shrewd and proclaimed that my kidneys were “gone” and I would never urinate again.
The same general physician I saw previously in the presence of my mother informed me about my AIDS diagnosis, and thereby outed me — twice. I will never forget what that physician said to me.
“Wake up! It’s AIDS. Are you surprised?”
Miraculously, during one of my dialysis treatments over that summer, my kidneys regained their proper function. I was able to return to my undergraduate studies.
In May 2009, I graduated cum laude from Prairie View A&M University with Bachelor of Business Administration in Management degree. I also graduated cum laude from Texas A&M University – Commerce with a Master of Science in Technology Management degree.