One of the most powerful HIV anti-stigma campaigns on social media is the Digital Living Quilt/AIDS HIV Survivor Living Memorial. The Digital Living Quilt is an ever-growing series of photos of people living with HIV. Each photo includes a frame (a social media filter) created exclusively by Zee Strong (aka Michael Zalnasky), containing HIV anti-stigma messaging such as, "HIV Undetectable; HIV treatment works," "Crush Stigma," and my favorite, "I want people to look at me and say, 'Because of you, I don't hide my HIV status.'" Strong has also created frames for occasions such as World AIDS Day, National HIV Testing Day, Trans Visibility Day, and the United States Conference on AIDS.
The handsome, silver-maned Zee Strong started working on the frames for the quilt in the week leading up to World AIDS Day in 2017. "I referred to it as seven days of chaos," he said, "because this thing went viral like overnight!" Once the original 2017 World AIDS Day frame came out, Strong got bombarded with requests to have him frame photos for people. "I mean, it was message after message, from people all over the world asking for frames. I was working nonstop, like 23 or 24 hours a day. It was crazy!"
Strong was diagnosed in August 2014. In fact, he'd been sick and losing weight and strength for several months, but as a straight, 54-year-old, white man in middle America, HIV was not on the forefront of anyone's mind. "I thought I had throat cancer, because I could barely talk," he said.
After several months of suffering with little or no relief, the 6-foot Strong fell in the shower, which convinced him to go to the emergency room. "Imagine, I'd been like 220 pounds, and when I got into that ER, I was lucky if I was like 130," Strong said. "I was so weak. I couldn't talk, I couldn't do anything." He told the emergency room attendants that he was there because of rapid weight loss, and they didn't think it was HIV. "Seriously!" Strong said, "It's 2014, and the alarms didn't go off?" The doctor told him he was anemic, advised iron pills and vitamin B-12 supplements, and scheduled Strong to return in three weeks for a colonoscopy.
It was at that invasive test that Strong's skin-and-bones frame was noticed while in a hospital gown. "This really cool doctor says to me, 'Has anyone questioned your weight?' And I looked at him and I said, 'The only one who is concerned is me.'" The doctor conducted several tests, concluding that Strong had Candida esophagitis.
"I wake up in my bed, and there's all this paperwork beside me. So I take my trusty iPhone and Google Candida esophagitis," Strong said. "And that's when I read that it's commonly found in persons with HIV."
Strong's diagnosis was more than just HIV positive; His immune system was so compromised that it had progressed to AIDS.
It was a long, rough road for Strong to get on the proper medications and get healthy. Like many with a dramatic diagnosis, he lost his job and his whole life changed. He moved to Florida, and about a year after his diagnosis, a friend got him to start bicycling.
"Everything I have, everything you see, came from riding a bike," Strong said. "I was dying -- literally wasting away. Someone challenged me to a bike ride, and it changed everything."
"I was someone who couldn't even look at a mirror," he said. With the antiretrovirals, good eating, and exercise, his health and mood improved. "I went from someone full of self-pity who couldn't even look at myself, to someone riding down the road taking selfies."
He started using an Apple phone app to enhance his own photos. "I started playing around, adding little slogans like, 'I am HIV positive.' That's all I would say. And I'd put it out there on my [social media] profile." It was from these messages on his own platforms that the idea started to expand. Since the world already has the AIDS Memorial Quilt, honoring those who passed away during the crisis of the '80s and '90s, Strong started creating a way to honor those living with HIV right now, while also shattering the stigma associated with HIV: the Digital Living Memorial Quilt.
"It has just snowballed!" Strong said. Right now, there are over 1,600 members on the Facebook group page. "And that's not counting the non-members. I've made friends with a lot of non-members."
The campaign is not only seen on Facebook, but also has a growing Instagram presence as well (search using #digitallivingquilt or #aidshivsurvivorlivingmemorial). "What's amazing is that people think it's this huge operation," Strong said. "I'm one man and a freakin' cell phone! I don't even have a computer." Strong said that he can't afford to buy a computer. He's tried to raise money through crowdfunding but found it challenging. "For now I'll just be me," he said, "alone on my bed, making frames for everyone on my phone."
One of the things Strong is most passionate about is that the quilt is for everyone. "I don't care who you are," he said. "I don't care if you're gay or straight. I don't care what your religious beliefs are. I don't care who you vote for, what your gender identity is -- trans, whatever." Strong added, "I'm probably the queerest straight guy you'd ever meet! I've been in the community for 25 years. It's my family. It has always been my family."
Strong hopes that the quilt will continue to grow and inspire people and has ambitions to see a gallery showing of prints from the kaleidoscope of people across the country and the world who are participating in the quilt. His current phone has over 59,000 photos of Living Quilters. "I'm trying to hold all my originals intact, because," Strong said, "someday this quilt is going to make a difference in the world."
It already has, Zee. It already has.