“It is bad enough that people are dying of AIDS, but no one should die of ignorance.” - Elizabeth Taylor
I can’t speak for other writers but I am moved to put pen to paper by things that bring me to tears - the people, circumstances, and events that simultaneously draw me out of my cocoon of “self” and evoke emotions we all share. These are the stories I want to create and explore - the stories that weave between us like invisible threads reminding us of all the ways we are the same, how important we are to one another, and that each and every one of us is required to bring our collective narrative to completion.
The story of HIV/AIDS is one such story. I first heard of the mysterious illness that was afflicting gay men in 1982 as I was graduating from college and preparing to leave for Japan. There my new best friend - a chain-smoking, coffee-guzzling gay man with carrot red hair and a goofy sense of humor - brought me up to speed on what was happening from his perspective. It was eye-opening, tragic, and terrifying.
Watch this short video listing the films being produced about AIDS pandemic that we were watching: https://www.imdb.com/title/tt0089069/?ref_=tt_mv_close
By the time I’d returned to the States and was hired to work on Karuna - the National Library of Medicine’s HIV/AIDS initiative in Second Life (SL) - testing positive for HIV was no longer a death sentence. Medications to treat HIV were far more effective, and the previously horrific side effects had been drastically reduced. The focus had shifted to prevention, and the National Library of Medicine wanted us to focus on disseminating facts while debunking stereotypes and stigmas and allaying fears.
It was the latter part of that equation that proved to be problematic. The Consumer Health Librarian assigned to the project was doing a great job creating and making slideshows, pamphlets, displays, and posters available. She held office hours, meet-and-greets, and regularly presented lectures on HIV/AIDS prevention. But there was one thing missing - a way to address the emotional issues associated with HIV/AIDS.
Realizing that our traditional approach to education (the passive dissemination of information using words) was both ineffective and a poor use of the tools inherent in virtual reality, I decided to create an immersive, interactive story. An immersive and interactive story is a 3D environment that allows participants (represented as avatars) to walk into and interact with elements of a narrative. The story is non-linear and not delivered passively. Participants must walk into, explore, and engage with the parts of the build to gather the information they need to piece the story together. Ultimately, all participants acquire the same basic information, but their versions (ie experiences of and feelings about) the narrative differ. I called this 3D story, The Life and Times of Uncle D.
Since The Life and Times of Uncle D disappeared from Second Life (SL) in 2010 after funding ran out, I’ve been dreaming about how to bring it back. Not just replicate it, but improve and find ways to share it with those who will never set foot in SL.
And so, on December 1, 2023 (World AIDS Day), I created an HIV/AIDS Tree at Arbors (pictured above). The inside of the tree looks like the inside of an artery carrying blood and contains replicas of the HIV virus circulating throughout the space. Each virus contains information about some aspect of HIV/AIDS - history, detection, symptoms, prevention, treatment, etc. Clicking on the viruses causes them to deliver links to videos and websites.
All around the edge of the tree’s inner circle are hundreds of people of all ages, races, persuasions, and genders each with a colored, glowing ball over their heads. The balls represent their spirits/souls and are a symbol of both the lights we’ve lost to HIV/AIDS and the hope that burns bright in every person affected today.
The HIV/AIDS tree is also a portal to the recreation of The Life and Times of Uncle D story. In addition to the story being available to avatars wanting to visit, I will be chronicling the story here in Substack so that those who are not able or simply aren’t interested in becoming an avatar can experience it as well. To be clear, the two experiences will be very different. There is no substitute for entering the 3D story, but I am hoping that I can tell the story using video, photos, audio recordings, and music well enough for my Substack readers to get a taste of the project. The first installment of the story should drop at the start of 2024, so stay tuned.
If you are not yet a paid subscriber, I hope you will consider joining us. Doing so will enable you to take part in the creative exercises I have planned.
Questions? Feel free to reach out to me at JenaBall at CritterKin dot com.
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This is so interesting! Thank you. I remember Klaus Nomi, a rising pop star in Europe who died of AIDS shortly after his 1st album... And I remember my lovely gay best friend Hubert when I was in pre-vet in the south of France in the late 1970s... Later he told me that all his gay friends who partied in Paris in the early 1980s died of AIDS. 😶😢
He survived because he stayed in the south of France where it hadn't arrived yet at the time...
Amazing! What a tremendous endeavor.