The AIDS Memorial Instagram

December 1, 2018 marks the 30th anniversary of World AIDS Day. Every year since 1988 we as a global community on this day show our support for those living with HIV and remember those we have lost due to HIV/AIDS. It’s a day to wear a red ribbon, donate and participate in activities that focus on remembrance and continued support.
Words by Alexandria Deters

REMEMBERING THE PAST, WHILE LOOKING FORWARD: WORLD AIDS DAY AND THE AIDS MEMORIAL INSTAGRAM

For many people, such as myself, remembering the people we lost too early and supporting my positive friends is a daily occurrence and a part of my life. Whether it’s friends discussing the multiple medications they are taking, watching your favorite queens discussing the importance of PrEP, seeing signs in the subway for GMHC or memorials dedicated to the lives of those taken too early.

It is through this general awareness that I discovered the The AIDS Memorial Instagram, an account where people can submit photos and memories of people, no matter their age, race, nationality, gender or sexuality that have been lost to HIV/AIDS. There may be a post of a celebrity such as Freddie Mercury, but more often than not the posts are of everyday people; cooks, chefs, students, activist etc. By reading the memories of people’s sons, daughters and lovers we are able to keep their memory and spirit alive.

The founder and curator of The AIDS Memorial Instagram (founded April 2016), Stuart, who prefers to remain anonymous agreed to featuring his work and recommended four contributors who had submitted memories to his page that I could reach out to and interview. Thank you Richard Jonas, John D’Amico, Amy Zeis and Mark Quigley for sharing your stories with us.

REMEMBERED BY RICHARD JONAS

When did you discover The AIDS Memorial Instagram?

I had friends who followed The AIDS Memorial and told me how much was to be learned and remembered there, so I started following it. Now I read the stories every day. Some really move me, some echo my own experiences, some teach me something completely new. I try to respond. Hundreds of people have written to me based on the four men I memorialized and it meant so much. 

 

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Part 3/3 . “It was a dark autumn; every day dusk came earlier. We kept going. . Tommy recovered and — it was his choice; who can argue with it, now or then? — pretended everything was all right and that he hadn’t stared death in the face. There was nothing to do then; no treatment, let alone a cure. AIDS was a death sentence. If Tommy denied it, including to his family that never acknowledged his illness or his homosexuality, that was his business. . After a time of recovered health Tommy died. John was left alone – as forlorn as an abandoned child. I’m sorry I didn’t help as much as I might have; the love of my life was dying of AIDS at the same time, and my heart went to him first. I called John regularly; we’d talk a long time. His grandmother was his caretaker. John died too — everyone died. . Years later the phone rang. “Is this the Richard Jonas from Columbus?” a young woman’s voice asked. “Is this the Richard Jonas who knew John Davis?” It was Holly, John’s daughter, grown up and living in New York herself. . For awhile I saw a lot of her. The first time we met she asked me, broken-hearted: Richard, why didn’t my father trust me? Since John had never talked to her about AIDS, Holly thought he distrusted her, but the reason – as with so much John did – was Tommy, who insisted John keep their secret. When I explained that to her, it seemed a weight lifted off Holly. I told her that John had loved his children so much, been so proud of them. . One day, later still, I was walking along Christopher Street. I’d never walked this stretch of the West Village with Tom, but suddenly I had a vivid flash of him, more real than the people walking by. Tommy and I were dancing to “Lady Marmalade” at the Saint again. I felt the whirl of motion and sound, the long-dead excitement of those days. I heard his voice, as clear as the sounds of the Christopher Street traffic: “You’ve got to throw down for all of us now,” he said. . I’ve dreamed of other people after they died, sometimes with such clarity that I felt the texture of skin, saw the freckles on a hand. As long as we remember the people we’ve lost, they’re still alive. We are family” — by Richard Jonas @uncs.rich

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What made you want to submit? 

I originally wrote a short biography of the man I loved most, Alan Goebbel, to accompany a panel his mother made for the AIDS Quilt. 

I lengthened it and submitted it to The AIDS Memorial 20 years after he died. Then I used my memories of my old friends, Tom Mitchell, John Davis and of my best friends, Hank Purvis to write memorials of them. It has been wonderful for me to remember and feel them close — though very sad too, deepening my understanding of what I lost when they died. 

I think we have to remember that hard and horrible time — and the beauty, courage and grace sometimes found there. A whole generation doesn’t remember first-hand. We can’t let the world forget. 

What is one of your fondest memories of John?

I remember John always being a dreamer, a sweet and loving man to his children and to his friends. He had a sense of playfulness in him and it showed in his laughter and his affection. 

 

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— “#AlanGoebbel was the man I loved, from 1978 until 1990. We are pictured together the photo above circa 1980. He’s the man I love now. . Children of pop culture, we spoke in lyrics from pop songs. Alan, realizing he loved me at last and after all, said: "I’ve been looking around, And you were here all the time,” — quoting Patti Labelle’s “You Are My Friend.” I held close to the promise, "Dreaming of the pleasure I’m going to have, Watching your hairline recede, My vain darling, Watching your hair and clouds and stars," — from Joni Mitchell’s “Just Like This Train,” not knowing we would not have that luxury of time. . Graduating from high school in Columbus Ohio, Alan went on to study at Arizona State University, the Design Center Los Angeles, Ohio State University and in Paris. . Other people have the right and the words to write about Alan. He touched other lives, won other hearts. But now when I remember him as vividly as I knew him 30 years ago, I only know a few people who share those memories. . Alan was the handsomest man I’ve ever known, with Apollo’s beauty, a sculptural quality to the bones of his face, a strong man’s body, the quiet sex appeal of a young father in an advertisement for American cars or shirts. . When he tested positive for HIV, Alan entered the last and, surprisingly, most rewarding period of his life. He was active in a support group for people with AIDS and made a large new circle of loving friends. Asked to speak to a group of volunteers who would soon be working with people with AIDS, he started with a joke. "When I found out I had AIDS, I asked God to give me more time,” he said. “So now every morning I wake up at 4 a.m.” He loved it when they laughed, and when they learned from him. . Alan died in Newport Beach on February 26, 1990, five months after his 35th birthday party attended by dozens of friends. His mother Marjorie and sister Karen took tender care of him in his last months. . A year after he died, a close friend gave birth to a son she named for Alan. Before she died, Marge Goebbel recalled her son as “the bravest person I’ve ever known. My test and my treasure was Alan." — by Richard Jonas @uncs.rich

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DOUGLAS TREZZA BY MARK QUIGLEY

When did you discover The AIDS Memorial Instagram?

I’m not exactly sure when I first came across The AIDS Memorial account, but I think it was probably sometime in 2017.

What made you want to submit?

When I discovered the account on IG, I was moved not only by the tributes themselves but by the fact that, after all these years, those who suffered and died from AIDS related causes, many of whom were ostracized and treated as outcasts while sick, were finally being honored, regardless of gender, race or sexual preference. In 2015, on the anniversary of his death (July 30), I posted to my IG account a short tribute to my boyfriend Douglas who passed away from AIDS in 1985. And on World AIDS Day last year I posted another more detailed tribute to Douglas shortly after midnight on 12/1 and tagged The AIDS Memorial, hoping that Stuart would post it to his account. I’m not sure but I may also have sent Stuart a DM asking him to repost the tribute. And I remember waking up in the morning pleased to see not only that it had been reposted but had received at that point over 1000 “likes” and many heartfelt comments that moved me to tears.

My reason for posting was to tell Douglas’ story and honor his memory. Also to share the heartbreak AIDS brought into the lives of so many, including my own. On the anniversary of Douglas’ death this year, I finally read, after 33 years, the journal I had kept for five months in 1985, between his diagnosis on Valentine’s Day until he was admitted to the hospital for the last time in early July of that same year. It’s a harrowing read as it’s all there in print, starting with the disbelief at the diagnosis, the denial, thinking and hoping perhaps Douglas would be the one to survive, convincing ourselves that every slight improvement was a sign that he was getting better. The pain and distress that comes with watching the man you love suffer and disappear before your eyes, morph from being fit and healthy by all appearances to a skeleton who could barely walk without assistance in a matter of months. The anger that comes with feeling out of control and helpless, wanting so desperately to make Douglas well and failing at it. And finally the fear that comes with knowing that I too was infected with HIV and would most likely soon suffer the same fate as Douglas.

 

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🔻 . “I honor and remember with love my first love, Douglas Trezza. We met in the pool at the Westside YMCA in Manhattan in July 1982. After showering, chatting and well, cruising each other while drying off, we walked back into the locker room, only to discover that our lockers were right next to each other, clearly a sign of things to come. . Since we lived in the same neighborhood, we continued to get to know each other while walking uptown to our respective apartments. I was completely smitten. Douglas was not only beautiful to look at but it became quickly clear that he was just as beautiful inside. When we approached his apartment on 75th & Broadway, he invited me in. I jumped at the chance yet somehow knew that this was not a typical hookup but something very different. . And I was right. When we got upstairs to his place, Douglas was a perfect gentleman. First he planted a delicious kiss on my lips and then asked me on a date two days later. I of course said yes and the rest is history. . We were pretty much inseparable for the next 3 years until Douglas succumbed to AIDS on July 30, 1985, a few days shy of his 30th birthday and just 5 ½ months after he was diagnosed. . Honestly, Douglas suffered terribly and never stood a chance against HIV. Unlike today, there was no medication to keep the virus at bay. I watched it ravage his body, trying against all odds to do whatever I could to prolong his life while at the same time being scared shitless that I would soon suffer the same fate as Douglas, as I found out I was HIV positive about the same time he did. . To this day, I don’t know why I survived and Douglas didn’t. I never got sick although I lived for years waiting for the other shoe to drop. I am one of the lucky ones. Being such, I will never forget those who weren’t so fortunate, like my beloved Douglas.” — by Mark Quigley @markquimark . #whatisrememberedlives #theaidsmemorial #aidsmemorial #endaids #neverforget

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The photo you submitted to The AIDS Memorial, of Douglas rowing a boat, can you tell me about that memory?

The photo of Douglas in the rowboat that accompanies my tribute was taken by his older brother Mark, who dabbled in photography. Douglas and Mark lived together when we met and their sister Laura lived in an apartment building just across the street on the Upper Westside of NYC. The three of them had a great relationship, although Douglas was especially close with Laura. The photo was taken in the boat pond in Central Park.

To be perfectly honest, I don’t think I was there when it was taken because I had a full time job whereas at the time, Douglas and Mark were both waiters and had days off during the week. As you can tell by the photo, Douglas was a strikingly handsome man, to such an extent that folks often asked if he was a model, which he wasn’t.

But since so many people thought he was, we thought, well, why not get a portfolio of professional quality photos together and shop them around to some of the modeling agencies in NYC. It would cost practically nothing with Mark taking the pics and the worst that could happen is that Douglas was not hired by any of the agencies. For the purposes of the portfolio, Mark shot Douglas not only in the boat pond but also on the roof of the Beacon Hotel on West 75th Street, the building in which they were living at the time. As a rule, the roof was a not accessible to the tenants of the building. Except for Douglas and Mark, who had charmed the super into letting them plant a garden there.

Mark took some gorgeous shots and the best of them, including the boat pond photo, were compiled into a portfolio and shown to the modeling agencies that Douglas visited. After all was said and done, if I remember correctly, the consensus was that although Douglas had the face for modeling, he wasn’t quite tall enough for the runway. I still have the portfolio of pics and will cherish it forever.

“I think we have to remember that hard and horrible time — and the beauty, courage and grace sometimes found there. A whole generation doesn’t remember first-hand. We can’t let the world forget.”

MY SON MASON BY AMY ZEIS

When did you discover The Aids Memorial Instagram?

I’m not sure how I found The AIDS Memorial Instagram. I believe I was searching Instagram for things related to HIV/AIDS and found it. I read story after story, thinking how scary it must have been to have been diagnosed in the early years. My heart ached for them and their loved ones. A part of me became angry at Mason for not taking his medication. It was so confusing. He did tell me that the man he was with recommended vitamins instead of his medicine. I don’t know if it was that or if the PML affected his decision making. Mason living in Las Vegas Vegas and me living in KY didn’t help.

What made you want to submit?

I wanted to submit his story because I’m terrified he’ll be forgotten. My job as his mother is to keep his memory alive, telling his story was a wonderful way to help me keep him alive. I had to have him cremated because of expenses and couldn’t afford a proper funeral. His dad and I divorced when Mason was 8.

I have a tree planted for him at a local cemetery but it’s not the same as someplace with a headstone so it’s very important for me to tell his story. Also, I’d like for people to learn from him and to know just how strong he is. 

 

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— “My son Mason was 19 years old when he was diagnosed with AIDS and progressive multifocal leukoencephalopathy (PML). His ID DR was able to determine that he probably contracted HIV around the age of 14. Mason later admitted that he knew when —he had met an older man online. . Mason later told his Grandma that he always felt like he had the flu but he never complained. That was Mason . . . sweet, kind, a pleaser. His friends told me that he was always there to cheer them up, the life of the party. He had a contagious laugh and the most beautiful blue eyes. He had a glimmer in his eyes like he knew something the rest of us didn't. He was smart and funny. He helped his Great-Grandparents with their groceries, mail, and garbage. I remember my little boy with the nicest hands to hold, always a little sweaty. . Mason was hospitalized for the last time on February 9, 2016 after he had moved to Las Vegas. He had been there less than a year, hadn't seen a doctor, and stopped all medication. His CD4 count was 3, he had three different types of pneumonia, his body was covered with Kaposi's sarcoma lesions. . It was later discovered that the lesions had moved into Mason’s tracheobronchial tree and stomach, he was dependent upon life support. He had lost the use of his legs from PML and was slowly losing the use of his arms. He weighed 80 lbs. . Mason fought until March 20, 2016. The nurses said he was tenacious. He never complained. Needle stick, after needle stick. Surgery, after surgery. Spending days without visitors because his dad and I couldn't stay the entire time (we live in KY so we flew back and forth). He never complained. . Mason passed on March 21, 2016 at 12:35 in Las Vegas as I read him Harry Potter and his Dad read Twas the Night Before Christmas. . Mason still has the nicest hands I'll ever hold.” — by Amy Christine @amyz72 . #whatisrememberedlives #theaidsmemorial #aidsmemorial #endaids #neverforget

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What was the one thing that always made Mason laugh?

One thing that always made Mason laugh was ticking his feet. He couldn’t take it! Oh, he had the most infectious laugh. It was hard not to laugh when you heard him laugh! 

My son made a mistake by stopping his medication, but at the end he decided that he wanted to fight. By that time it was too late. But he fought. I had to look him in the eyes and pretend everything was ok while I made the decision to remove him from life support. But he fought. As the nurse was giving him something to help him fall asleep before they removed life support (which he didn’t know) he looked at her and mouthed the words, “how are you?”.

My baby, my only child was a fighter and I’ll never let him be forgotten. Thank you so much for your time and your interest. 

NEVER FORGET BY JOHN D'AMICO

When did you discover The Aids Memorial Instagram?

My memory of when I first discovered The Aids Memorial Instagram is a bit fuzzy.  I know I had been reading it regularly for 3 months ? 6months? Longer? Before I sent my first post in December 2016. Looking back at the archive, I see that I commented on a post about a friend Gil Quadros on 8/4/16 – who was a poet and a writer.  

“Gil was an amazing guy.  Like a fierce hot wind that warms an already hot night.”

 And in December 2016, I sent my first memory – of my friend #DarrylBrantley – (you can search for it on the site).  

What made you want to submit?

I remember in the early days of reading the site, I would regularly feel this incredible surge of hope and sadness. Sadness at the tremendous amount of loss of so many young, young, young people. People who seem even younger now than they did then. And hope about the openness with which contributors share their stories, their rage, their loss, their love. So many memories of the late 80‘s and 90’s, for me, living in West Hollywood, gather themselves around the unexplained and the incomplete.  People regularly disappeared into a general category of “Died of AIDS” and yes, of course they were so much more for me and for so many others, but nonetheless they were gone and the explanation was the story. 

Stuart has broken that open, not just for a new generation, but for those of us that lived daily life in the time of AIDS.  I love him for his vision. I have written four memories of the more than 75 people I have known that have died of AIDS. 

Darryl Brantley, Steve Small, Tony Vito Anthony Gramaglia and Patrick Snyder.

 

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. . Steve Small (1962 - 1994) . "I remember the first time we kissed. It was seconds before I snapped this picture. . We were sitting on the hood of my ’79 Fiat convertible. We had just met, we were outside Gelo’s bar on Paradise Road, the sparkling city beyond. I opened the trunk. "Here hold this clock,” I said, "I want a picture of you with this clock." I leaned in and kissed him, stepped back and snapped this picture. . It was Las Vegas, the late fall of 1985, and those lips, soft and willing and like mine wanting attention. For that moment, I think we could only see each other. "We’ll remember this time,” he said, pointing at the clock face, "Get it?” I got it. . We kissed again. I played with his tie – unbuttoned his shirt. We talked about art. And English literature. And the empty fullness of Las Vegas. . We went on some dates. His floppy hair and sweet voice that would tell me stories of poets and poems and new thing I never knew I needed to know. He worked in a local hospital. He would visit me at my job at a downtown coffee house. . One weekend in early 1986, all bundled up, we drove to LA with the top down to listen to Pierre Boulez's "Repons" at UCLA. I was transported by the music. And him. He pressed his knee against my leg. He always smelled like fresh laundry. We walked along Melrose. We ate hot dogs at the Tail of the Pup. And then we drifted apart. I can’t remember why. It happens. It happened. . I finished college and moved back to Los Angeles a few months later. I heard that he’d died from a friend of a friend. In 1994. When so many others were dying. When I was caught up in the facts and fears and features of my own life. . I’m glad I have this photo of Steve and these memories. Look at him in this picture, that dreamy hair and those eyes and that Adam's apple. So happy. He had soft skin. And a flat stomach. And such a sweet grin. He was a regular nice guy. . I love this photo. I have kept it all these years. And now it’s kept here too and you have a copy . .” ― by John D’Amico. @ourweho . #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids .

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If you were able to take Steve to Las Vegas today, where would you take him and why?

My story about Steve Small took a turn I never expected when Stuart reposted the story –  his niece (@chrissy_ob) saw his picture and read my story about him quite by accident on the site and shared the post with her family. She wrote: “I started following this page after @andersoncooper posted about it in the hope that I would one day see a story about my Uncle Steve. This made my year. ❤️”

She also shared [the post] with her family including Steve’s sister @msmichelebrown, “Thank you for describing my brother so lovingly! We miss him and every artist taken by AIDS. He was my best friend.” I wrote back: @chrissy_ob, “1985/1986 was a long time ago and I can still remember moments and feelings and the way he showed up fully and how he was patient, caring and fun. 
I remember how super smart he was and his love for music and poetry and how he would write letters to poets because he believed in this crazy simple idea that people should connect. And did. And he did. 
I’ve always loved the singularity of this photo and how time plays a character and your Uncle Steve is the star and the background lights are the timelessness of memory. It’s the only picture I have of him and it holds a complete story. 
For me, AIDS has a way of distilling lives into an elixir that can be potent, mesmerizing and heartbreaking – and this site has delivered many people I’ve known, many years ago right into my handheld and into my heart – and I’ve tried to bring some of that laser hot light into the memories I’ve shared including those of your Uncle Steve. Your family lost a really great guy. As I wrote above…he was a regular nice guy (and a good kisser).

The idea that I could take Steve somewhere is dwarfed by the reality that I cannot. That time, that innocence, this world no longer contains that place. The world is no longer flat. But I welcome his memory and the memories of all the people I’ve known and meet here on The Aids Memorial Instagram site. They all spend a little time in the world I’m living in as I look back into the one they left.

“On the anniversary of Douglas’ death this year, I finally read, after 33 years, the journal I had kept for five months in 1985, between his diagnosis on Valentine’s Day until he was admitted to the hospital for the last time in early July of that same year.”

Showing 3 comments
  • Mark
    Reply

    I’m moved and honored that my tribute to Douglas was included in this beautiful piece. A big thank you to Stuart and Alexandria.

  • Amy
    Reply

    Thank you for choosing to share Mason’s story. I read each contribution and my heart aches. I wish I had known everyone. Sending love. Mason’s mom, Amy

    • Alexandria
      Reply

      Thank you Amy for sharing Mason with us and letting us being able to see a small glimpse of the wonderful person he was.
      Thank you <3

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