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  • Writer's pictureJena Ball

"Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain." - Vivian Green

The numbers are staggering.

  • 32 million dead since the beginning of the HIV/AIDS epidemic

  • Approximately 37.9 million infected across the globe

  • Infection rates that continue to climb in 50 countries including Russia, South Africa, and Kazakhstan.

  • 37,832 newly diagnosed case of HIV in the United States in 2018, and the infection rate isn't falling.

But numbers aren't human. They're countable pieces of information that allow us to talk about something without having to feel - with so called objectively. This, I've come to realize, is how human beings keep from being overwhelmed by situations and events that seem beyond our control - that clamor for gut reactions and threaten to rip our hearts out. Caring - and by definition being concerned about the health, happiness, and well-being of those closest to us - is hard enough. How are we supposed to find the emotional bandwidth to care about people we don't know? Especially people whose beliefs and lifestyles are not ones we share?

I first started asking myself these questions back in 2008 when working as the creative lead on the National Library of Medicine's HIV/AIDS education project (Karuna) in the virtual world of Second Life. Today, as the COVID-19 pandemic rages on, I find myself asking them again. This time, however, there is no blaming or stigmatizing any one segment of the population. Oh, I know some are trying, but this virus doesn't discriminate. It's an equal opportunity infector, and I'm beginning to realize that's the point.

My questions today have to do with how to move forward. How do we help everyone heal? How can we make that healing universal and applicable not only to human beings but other living creatures and the planet as well? Because let's face it. We've been doing a pretty poor job of taking care of one another and Earth. We need new, more compassionate, and life-focused ways to move into the future.

Back in 2008, the answer to my questions was story. Human beings are storytellers. Narratives help us make sense of our world and others. They help us understand and dispel our fear of differences, take down walls, and find common ground.

I used story as the foundation for two projects in Second Life. The first was "The Uncle D Story Quest," an immersive 3D environment that allowed participants to walk into and explore the life of a man named Uncle D, a 40-something man living with HIV. There, they could visit his summer cottage (pictured above), hear his journals read aloud, play with his cat, and listen to his phone messages. In another part of the build, they could visit his office at the school where he taught and the medical clinic where he received his HIV treatments. At the clinic, they could examine his medical records, learn about the drugs available to treat HIV, and ask his doctor (a chat-bot) questions. Watch the video we made about the project here. In this way, participants learned to know and care about Uncle D as a person - to see him as more than a condition or a number.

The second project I created was the 3D AIDS Quilt (watch the video here). The tree in the middle contained a concert hall, an education center - where you could see a 3D version of the virus replicate itself (scary), and private meeting rooms for support groups. At the base of the tree was a garden

surrounded by the quilt itself. The quilt consisted of 60 rooms, each containing a 3D story about some aspect of the HIV/AIDS epidemic. Some participants chose to tell the stories of individuals. Others, like the HIV/AIDS orphanage in Africa, told the stories of whole groups of people affected by the epidemic. Each was unique and deeply moving. We had dozens of musicians and presenters use the concert hall to give performances and raise money for various HIV/AIDS related groups.

But the bottom line - the thing that connected both projects to the larger mission of Karuna was story.

Applying Lessons from the Past

Fast forward to 2020. I believe that story is the solution to many of the pressing questions we are asking one another today. We must find ways to connect with and comfort one another; to say the names of those we've lost and preserve their lives in story. But commemoration is not enough. All around us people are stepping up to the plate in extraordinary ways - doctors, nurses, food banks, teachers, performers, delivery people, farmers, and grocery clerks. Their generosity, courage, and commitment to others are stories with lessons that need to be heard, celebrated, and integrated into our collective awareness.

But even those stories are not enough. We must find a new story to tell about humanity as well. We must re-imagine how we interact with one another, with other living creatures, and the planet. We must acknowledge that we are just a tiny part of an enormous interconnected and interdependent web of life. We must tell these stories as if our lives depended on them, because they do.

P.S. I have an idea about how we might begin to accomplish this. Stay tuned!

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  • Writer's pictureJena Ball

“I write not because I have the strength to write, but because I do not have the strength to remain silent.” — Rav Avraham Yitzchok Kook zt’

In my last post I introduced you to an extraordinary avatar named Namav Abramovic. Namav's adventures and the impact he had on others in Second Life embody what I have found to be true about my own virtual experiences. Virtual reality is as real and relevant as our physical lives. In some cases it even empowers us to be more than we thought possible. That was certainly was true of Namav. But I'm getting ahead of myself. Back to the story...

Having accepted Namav's invitation to dance and talk, I changed back into human form and we headed to a quiet ballroom. There, I learned some important facts:

  • First, Namav's real name was Nick Dupree. He and his younger brother, Jamie Dupree, were born with a rare neuro-muscular disorder that left them unable to breathe or eat on their own. At the time we met, Nick was living in rural Alabama with his mother, brother, and grandmother.

  • Second, Nick was not shy or secretive. You could ask him just about anything as long as you were prepared to be asked anything in return.

  • Third, Nick was intensely curious, well-educated, and could talk about everything from healthcare, politics, and disability rights to music, the Torah, and poetry. He was an excellent writer and artist, with a goofy sense of humor. If you doubt me, look up "Superdude Comics - Bunnies in Space."

  • Fourth, Nick was a fighter, and a very articulate one at that. When he realized that he would lose access to funding for nursing care when he turned 21, he launched "Nick's Crusade." The campaign resulted in a program that allowed 30 ventilator-dependent Alabamians to continue home care after they turned 21.

  • Finally, Nick would not tolerate pity, He'd lived with his condition since birth and had long ago accepted it. His focus, as he often said, was on having a life. He never stopped looking for ways to move beyond the confines of his ventilator and wheelchair. That's one reason he cherished Second Life.

As impressed as I was that day, I had no idea how many people Nick had touched and how deep their concern was until I got an invitation to a fundraising event. Entitled "New Worlds for Namav," its purpose was to collect the money needed to relocate Nick from his home in Alabama to New York City. Both the organizers and Nick felt that being in New York would greatly improve his life. But to be honest, this was a big ask. Moving Nick across the country was not a simple matter of packing bags and loading up a car. He needed a ventilator to breathe and medical staff to ensure that he arrived safely.

Despite all this, the Second Life community came through. We raised more than $15,000 at the fundraiser and got Nick moved. I couldn't have been prouder had I driven to Alabama and helped with the physical move myself.

In New York, Nick did indeed thrive. He made new friends, went to museums, and continued to create quirky drawings for his comic book series. He also married the woman he'd fallen in love with in Second Life, Alejandra Ospina. In Second Life, every avatar who had watched their romance blossom and contributed money to Nick's relocation celebrated. It was great to see his hopes and dreams come true in physical reality.

I wish I could say that Nick got his happily ever after life. But after seven years and eight months of marriage, the couple began to quarrel about issues related to nursing care. Eventually, Nick made the difficult decision to move to a hospital - a move he'd fought to avoid all his life. There he contracted pneumonia, developed bedsores, sepsis, and heart problems. He passed away on Saturday, February 18, 2017 at 4:30 am just five days shy of his 35th birthday.

In Second Life, those of us who knew, loved, and championed Nick's right to have the life he so desperately wanted were devastated. Not long after hearing the news, a group of us gathered to share memories and say good-bye.

I didn't have a lot to say at that gathering. A part of me just couldn't believe he was gone. The best I could do at the time was contribute a song that expressed how I knew he would want to be remembered:

Now, however, as I prepare to launch another project designed to help others embrace and find comfort in virtual reality, I wanted to share Nick's story. His life was living proof that we can indeed transcend our limitations and find ways to let our souls fly free. He was both an inspiration and a good friend who could always make me laugh. I miss you Nick. I hope you have finally found peace.

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  • Writer's pictureJena Ball

"Virtual Reality is not a fantasy. It's just another place we go to explore what it means to be human," - Jenaia Morane

Yesterday I stumbled on an obituary written by Uccello "Blue" Poultry for herself. She knew she was dying of COVID-19 and had some things she wanted to say to those she was leaving behind in virtual reality. Blue became a resident of Second Life (SL) back in 2006. She was introduced to SL by an astute therapist who suggested that Blue could practice much needed social and life skills there. Thus began an extraordinary, 16-year odyssey. You can read her final letter here: .

But today's post is not about Blue, whom I regretfully never met. It's about a young man she reminded me of - Namav Abramovic. In his real life, Namav was a disability rights activist, a writer, and a Talmud scholar. But his real passion was helping the disabled make their way into Second Life.

Namav wandered the metaverse as a camel trader, offering encouragement and advice to anyone who needed it. I met him shortly after changing my avatar to a border collie. After the novelty wore off, I realized there wasn't much to do as a dog in Second Life. The only thing I really enjoyed was chatting up strangers and making new friends. So when a dark haired avatar sporting a beard and a turban asked if I'd like to join his group, the "Open Gates Peer Support Community," I said yes.

Namav was a good teacher and it wasn't long before I was doing what therapy dogs do - providing unconditional love and a listening ear. The one thing that puzzled me was how slow Namav was to respond to my questions. Sometimes it would take him days to get back to me, and long minutes would pass between texts when we were working together. It finally occurred to me to ask one of the other volunteers why he took so long to reply. "Oh, I thought you knew," she said. "Namav is on a ventilator 24/7, and the only part of his body he can move is his thumb."

Surprised doesn't begin to describe my reaction. Shocked, impressed, and intensely curious would be more accurate. I already liked and admired Namav. He'd shared some of his poetry and we'd had a couple of good discussions about relationships in Second Life. But this was almost unbelievable. I texted him and asked to find a time to talk. "Sure," he replied. "Wanna go dancing?"

Dancing?! Suddenly that delightful ability in Second Life took on a whole new meaning. What was it like to be able to dance, fly, drive a car, surf, and take long walks on the beach when your physical body was so immobile? Would Namav be willing to talk about all this? I switched back to my human avatar and accepted the invitation. This was going to be a heck of a conversation!

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