A PERSONAL STORY OF LOVE, LOSS & DISMAY ABOUT TODAY’S LEADERSHIP
Photo by Everton Vila on Unsplash
In the 1990s I led an HIV Support Group that was officially part of my church and comprised of an evershifting number of men I loved best of any motley crew I’ve ever known. They were of every known religion and degree of irreverence. Jim, the last surviving member of the clan, died of natural causes last year, having dodged AIDS along with his partner; partner Richard was lost to a freaky post-surgery accident more than a dozen years ago.
Every new disastrou healthcare headline reminds me of Jim.
Jim was the #1 source of my pandemic survival. Having lost my husband in 2019, not that long after Richard had died, the two of us found a spectacular anti-loneliness mechanism for negotiating those pandemic days . . . and eventually, years.
Mobility-challenged from a long-ago case of Guillain-Barré Syndrome, Jim was pretty much confined to the third floor apartment he and Richard had shared for decades. As it happened, their place was on one of the steepest blocks of San Francisco’s Mason Street, making its front window almost level with the sidewalk a few yards uphill. I would stand precariously on the sidewalk while he leaned out his window; he always promised to call 911 if I lost my balance so they could dredge the Bay for my body after it rolled downhill and into the waters.
To be confessionally honest, toward the end of the pandemic I did sneak inside a couple of times for us to remember what indoor face-to-face encounters had been like in days gone by.
In those olden days Jim and I had witnessed the worst of the AIDS pandemic and, finally, its slow but eventual end. We remembered one longtime member of the AIDS Group who said, at what would be our last formal gathering, “I’ve spent more than a decade focusing on death; now I just want to focus on living for a while.”
That shift from death to life was thanks to development of antiretroviral therapies that slowly transformed HIV from a death sentence into a manageable chronic illness. It was work that required public and private cooperation and the dedicated efforts of local, state and national agencies. It led, eventually, to San Francisco’s being at the forefront of a global challenge to “Get to Zero” — zero new HIV cases, zero deaths and zero stigma. In three decades there has been almost uninterrupted progress toward this lofty but attainable goal.
The current administration has thrown everything into reverse.
Some $8 million have been stripped just from local agencies doing this humanitarian work. If you can look up the chain to the destruction of science-based agencies and communities all the way to the formerly unequalled CDC without tears you must be without a heart.
Our old HIV Group had one confirmed curmudgeon who regularly proclaimed there was no hope for himself or the world. Everybody else would find something that made that one day worth living and would wear ourselves out saying “C’mon, Tom. One day there’s going to be a cure. A vaccine. A treatment.” Tom died early on, angry and cursing fate as with so many young men who had good reaason to curse.
When Jim and I talked about those olden days, as we invariably did, we often joked about how Tom had been proven wrong, because vaccines and treatments were indeed on the way to eradicating the scourge of HIV-AIDS; and how Tom would’ve scoffed and said, “Just wait. Something’s going to screw it all up.” I sorely need a chance to joke around with Jim today.
So where, in this column that regularly looks for good news, is the good news for the future of American health?
“Don’t quote me,” said another old friend recently — so of course I’m quoting him, “but there are sane scientists everywhere who are just waiting out the ignoramuses in charge of our national health today. We’re still moving forward. Despite the tragic losses of the last year, science is still science and those of us comnitted to it are not going to give up. We’ll get to zero.” He teaches at a prestigious California university. He’s tenured. He believes most who have lost their good jobs will come back once U.S. healthcare gets back on track.
RIP Jim and Richard and Tom and so many beloved others. We’re on a dark detour but we’ll still Get To Zero.
We had our business, Nancy’s originals at 1425 Haight St in those days, when good friends were sickening and dying. Our synagogue started preparing 5 star dinners once a month and delivering to Aids victims, delicious enticing meals. Gradually the tide turned and we were in fact delivering food to survivors. As a deliverer I got to know the long term survivors and their caregivers. I pray that the underground clandestine scientists are concocting and stockpiling antivirals just in cause. I will be happy to deliver that with the chicken soup.
But really it’s like a recurring nightmare these days.
Oh, I remember that Good Neighbor project of Sherith Israel! The love & support of so many got so many AIDS sufferers through those terrible days. I’m having that same nightmare with you now. Just hope we’ll one day wake up to a return to sanity.
I remember those nightmare years when I would hear from a mutual friend that someone was HIV-positive, and six months later I’d hear that person had passed away. I also remember the climate of fear (can I get it if I share utensils with my gay friend?) and stigmatization (it’s a “gay disease”!). It hit me most personally, though, when a dear friend–a cisgender woman–told me that she’d been HIV+ for several years, a secret she learned the hard way that she had to keep from employers.
That friend is still living; the antiretrovirals came along just in time. Far too many others were lost.
Yeah, I remember the wild stigma too. Hope we can keep enough scientists balancing the crazies until everything’s moving forward again into the light.