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With emotional Instagram memorial, AIDS victims' stories reach new generation

The AIDS Memorial Instagram account pays homage to those who have died of AIDS-related illnesses and ensures that their memories live on.
Debbie, Tommy Grella and Boris Maldonado.
Debbie, Tommy Grella and Boris Maldonado.The AIDS Memorial / via Instagram; NBC News

Nearly two decades after Bruce Bozzi Jr. lost his first love to AIDS, he revisited their love story in a social media post shared with tens of thousands of strangers.

"On a super hot day in July, we decided to meet on the corner of 14th Street and 5th Avenue," Bozzi, 54, a restaurateur, wrote in the caption, paired with photos of a striking man in his 20s. "Tommy stood there with his jet black hair, his eyes brilliant with shades of green and blue and that smile you can see in this photograph. Being gay back then was hard, exciting and complicated."

"Tommy, I think of you every time I stand on 14th & 5th no matter what season it is in New York and much more than that. I guess it's not the amount of time but the quality that is so important," Bozzi's message said. "No matter, we were robbed of you too early! Tommy Grella, January 18, 1963 to June 24, 1992. You never forget your first loves, now do you?"

Bozzi is among thousands of people who have shared memories of loved ones on The AIDS Memorial Instagram account. While remembering those lost to AIDS is often relegated to World AIDS Day on Dec. 1, this social memorial honors them year-round. Every post on the Instagram page tells a heartfelt — and often heartbreaking — story of someone who was taken too soon as a result of the disease, which has claimed more than 32 million lives since the start of the epidemic.

Preserving a hidden history

The AIDS Memorial — created by Stuart, who is based in Scotland and asked that his full name not be published to protect his privacy — has shared more than 7,000 stories and amassed over 150,000 followers since it debuted in April 2017. The posts use images of those who have been lost instead of quilt squares or statistics to put faces to the epidemic.

Stuart said he gets submissions from around the world, although the majority (75 percent to 80 percent) are from the United States. He speculated that Americans are "more open, more forthcoming" about sharing personal stories. Regular submissions also come from England, Australia, Canada and Brazil.

Ron Sese, a volunteer for The AIDS Memorial, said preserving history was among the memorial's inspirations.

"If the history books won't write about us, how do we tell our stories? How do we share our stories? How does the next generation learn about the generation that came before them?" he asked.

As the account's submissions and followers grew, Sese said, "we started to see a community build."

"We started to see someone submitting a post about a sick father, a dear friend, and people who knew that person would then reach out in the comment section," he said. "There would be a reunion of sorts, and that value is hard to come by — especially in a social media age."

Sese said part of the beauty of The AIDS Memorial is that it's bringing a rich and important history to younger people exactly where they are: social media.

"There is an entire group of people who don't know life before the internet — they've never known a life without a timeline," he said. "If this is where people are sourcing information and this is where people are learning day to day ... then this is where we need to meet them and present them that information."

'The saddest I ever felt'

Most of those who submit images and share stories, like Bozzi, are loved ones of those lost to AIDS. Some share paragraphs, while others post just a few words.

On Nov. 21, which was Transgender Day of Remembrance, Marie Jose shared the story of her Uncle Boris, who died in 1996 at age 30. Jose was just 7 when Boris, an Ecuadorian immigrant who lived in Queens, New York, died of AIDS-related complications.

"This is my uncle Boris who was the best dressed, most fun and irreverent person I knew growing up. I wish I'd gotten more time with [her]," Jose wrote in the caption, along with a slideshow of images showing Boris donning attire spanning the gender spectrum. "Boris had a magic to [her] that continues to cast spells."

"Boris had the best, loudest laugh that sounded like a Times Square 90s bruja," Jose said, using a Spanish word for "witch." "Boris also went by Exotica, [her] performer name and [she] used to wear nipple tassels and the most snatched outfits. She dressed for the gawds." (While Jose used male pronouns to refer to her uncle in the post and noted that her uncle used male pronouns while he was alive, she requested that female pronouns be used in this article.)

At the end of the caption, Jose recalled the day of Boris' funeral and how it "rained a monsoon."

"I still remember [her] queer childhood friends from the block, 3 of them, holding hands around [her] tombstone, crying. They were the last ones to leave," she wrote. "I remember feeling the saddest I ever felt in my whole little life, watching them thro the car window, they were standing through the storming rain and saying goodbye to no doubt, another chosen family member lost to AIDS."

'Lying there in my "deathbed"'

While most of the AIDS Memorial posts are about loss, some are about survival and perseverance. Texas native Aaron Holloway's post, shared on Oct. 11, National Coming Out Day, is one such example.

"I was diagnosed with end-stage renal failure. The nephrologist proclaimed that my kidneys were 'gone' and I would never urinate again," Holloway wrote, adding that he was just a college senior at the time. "Afterwards, I was simultaneously diagnosed with AIDS by another physician in the presence of my mom and thereby outed. I will never forget what the physician said to me, 'Wake up! It's AIDS. Are you surprised?'"

"I never told my mom I was gay and she did not know," Holloway said. "Lying there in my 'deathbed,' I believed my mom would abandon me. She did not."

Holloway said that after he was given just a month to live in March 2008, his kidneys "miraculously" regained function. Not only did Holloway finish his bachelor's degree — cum laude, no less — but he also went on to get a master's degree.

'Afraid to be forgotten'

Most of the stories shared on The AIDS Memorial are those of LGBTQ people, as men who have sex with men and transgender women are disproportionately affected by HIV and AIDS. That having been said, the memorial includes many stories about non-LGBTQ people, too.

"It reminds you that this isn't something that just impacts gay men," Sese said.

One such person is Debbie, a West Virginia woman whose daughter, Renee Taylor, shared a memorial post on Aug. 5, the 17th anniversary of Debbie's death.

"My mom Debbie's last words that she wanted read at her memorial were 'I love you, be strong and never forget me,'" Taylor wrote.

"I don't think my mom was scared to die," she continued. "She'd been preparing for death for 11 years. When she was diagnosed with HIV in 1992, it was still considered a death sentence. There was a lot we didn't understand."

Taylor expressed gratitude that she and her mother "spent a lot of quality time together."

"Even though I was a bratty teenager, I understood how precious our time together was," she wrote. "I tried my hardest to make it count."

Taylor's post ends with a poignant thought that encapsulates the mission of The AIDS Memorial.

"I think my mom was afraid of being forgotten, so I share her story," she wrote, with the hashtag #WhatIsRememberedLives.

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