I’ve known my best friend Charles for more than 40 years. He knew me when I was HIV negative, for goodness sake. That’s how long we’ve been besties. When Charles was interviewed recently for a story about my advocacy, he said something that surprised me.
“Mark almost never talks about HIV around me or our friends,” he reported, adding that we’re much more likely to discuss movies, our cats and mid-century houses. He thought that was an important clue to how I maintain a balanced, relatively sane existence.
I didn’t realize how rarely the topic comes up, but Charles is right. He points to something that was once a deliberate choice of mine – to build my interests and social network in ways that push HIV from the foreground – that has become integral to my life. Yes, I carry my status like a billboard most of the time, and that’s a choice, too, because of the vocation for myself I have chosen. But cats, tennis and the latest scary movie take up most of my social life’s bandwidth.
A lot of us don’t have that luxury, true. Living with HIV can be all-consuming when you’re juggling medical appointments, medications, and the other minutiae of having a chronic condition, all while dodging the slings and arrows of social stigma. Contentment depends on so many factors, privilege chief among them. It’s important to make that distinction when talking about how to create and enjoy a life that lifts us up and beyond our HIV status.
These issues were on the minds of the thoughtful people at The Reunion Project when they designed their most recent virtual town hall event, “Creating a Life Beyond HIV.” I was an enthusiastic co-chair for the national event, alongside Cecilia Dennis, and it was moderated by the lovely Bridgette Picou.
The mix of speakers and aspects of creating a life beyond HIV – and one that is aging, for many of us – was handled terrifically by a diverse team of presenters.
First, Vince Crisostomo and Paul Aguilar of the San Francisco AIDS Foundation showed the kind of easy vibe that comes from being close friends as they discussed how they make time to take off their HIV Pro hats and enjoy life.
Next up, a great panel of long-term survivors, including someone living with HIV since birth, discussed the things they need in life in order to build something beyond HIV. This panel couldn’t go wrong, considering it was made up of Porchia Dees, Achim Howard, Barb Cardell, and Dr. Joyce Turner.
Finally, practical tips for building a life beyond HIV came flying out of AARP representative John-Paul Hayworth. Have your notepad ready to take advantage of a slew of helpful links John-Paul provides.
Here’s the video of the town hall:
Here’s a breakdown of the video, so you can go directly to any section that interests you:
0:00 – 24:00
Welcomes and Introductions:
24:00 – 1:05:00
“Friendship, Work/Life Balance, Finding Fulfillment”
Vince Crisostomo and Paul Aguilar
San Francisco AIDS Foundation
1:05:00 – 2:02:40
“What We Need to Live Beyond HIV”
Porchia Dees, HIV Survivor since birth
Achim Howard, DC Trans Men Rising
Barb Cardell, Positive Women’s Network USA
Dr. Joyce Turner, founder of Aspirations
2:02:40 – 2:38:00
“Practical Tips for Aging with HIV”
LGBTQ+ Audience Strategy Director, AARP
As always, my thanks to the folks at The Reunion Project. Another great way to build your social support networks is to volunteer. I’ve made a lot of friends that way. Get in touch with The Reunion Project if you’d like to help out with their next event. A lot of the work is virtual, so you help out from anywhere.
Thanks for checking this out, and please be well.