Long-Term Survivor of So Many Things
Today, June 5th, is HIV Long-Term Survivors Awareness Day. It even has a hashtag because, of course it does, it’s 2021. #HLTSAD. The SAD is not lost on me. This was an error on the part of whomever decided the name of this day as they clearly weren’t forward thinking enough to realize that everything will, eventually, become a hashtag. It’s all good though. #IAGT. We’re all hashtags now. #WAHN. I am just so grateful to be here, twenty-nine years–and counting, after my own HIV diagnosis, to be boiled down to a hashtag, happy or sad.
This poster from the San Francisco AIDS Foundation came out the same year that I was diagnosed. 1992. I managed to get a copy of the poster and have schlepped it around to every place I’ve lived since then. It gave me hope. It still gives me hope. At 57, I don’t know if I’ll be here for the cure but I’m here for life with what is now considered a chronic manageable illness. In 1992, I definitely didn’t think I would, but I am.
Still here.
Honestly, I’m amazed. As a long-term survivor with HIV, this day does make me sad because I’m reminded of all of the beautiful souls I’ve met who are no longer here to become hashtags. I miss them. Okay, maybe not all of them, but so very many. Too many.
The kicker is that on top of HIV, I’ve also survived COVID-19. I have a tendency to minimize my health issues so I’d convinced myself that since I was never hospitalized, and I’m still alive, unlike the 600,000 American souls who’ve died from this virus, that I wasn’t really sick. That too is an error. Not as egregious as the hashtag problem, but I digress.
I was sick. And more than a year later, I am still dealing with the aftermath. I had eye surgery to remove a retinal membrane which formed as a result of the inflammation due to COVID. I’ve had a headache since May. May of 2020, that is. My chest hurts on the left side and we’re still trying to figure out why. But I’m alive.
Today, I’m a COVID long-hauler and I’m glad because I like saying that. It makes me feels like maybe I’m a trucker or a long-distance runner. (I am neither.) I count myself so lucky. Luckier than the estimated (probably underestimated) 3.72 million souls around the world who died due to COVID. They will never become hashtags either. And that sucks.
Today, June 5th 2021, also marks the 40th anniversary of the first reported AIDS cases in the United States. I’ve only been living with HIV for about 30 years, so I can’t claim that hashtag, but it gives me pause. I realize that my students may have no idea of what happened then, of the AIDS-epidemic, and the extraordinary people who gave everything to fight. They fought for their lives. They fought for their rights. They fought the systems, both health and governmental. They fought for me. And I am so grateful.
If there is one silver lining to this current pandemic (aside from working from home via Zoom and wearing comfy clothes) it is that we’re putting many of the lessons learned from the AIDS pandemic to work in combating COVID. We learned so much the hard way, that it is gratifying to see the rewards finally being reaped and advances being put into service of yet another global crisis. Those of us who are Long-Term Survivors of HIV are still relevant. We still have much to offer. Our stories matter. Our collective wisdom can help future generations. We are more than hashtags. We’re still here. I’m so so lucky.
Surviving HIV and COVID is so much more than surviving a virus. It means surviving all of the fears and stigma and uncertainties that go with severe illness. It’s a lot. And if you’re dealing with this, or any other illness or challenge today, I salute you. You’re still here. You’re not alone.
(Originally posted on June 5th, 2021 on martina-clark.com)
