"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!