After my father died in October 1995 from AIDS-related diseases, my world, understandably fell into a sinkhole. Most of which was in my stomach, it was like I couldn’t put enough weight on to insulate myself from the world. I couldn’t eat enough to fill the emptiness and anger inside. In January of 1996 the protease inhibitor “cocktails” were approved and the first people started taking it. My step-father was among them. Since we were essentially preparing for his imminent death, it was shocking to see how quickly the treatment started working. He traveled from near-death to relative (relative) health with remarkable speed. I cannot say how much of a relief that was. I also can’t express how much rage I felt. Rage at the world. Rage at the society that tormented, taunted and jeered at people who were dying from AIDS. Rage at people hiding behind their religion standing at the edge of AIDS walks and candlelight vigils yelling at us that they all deserved to die. Rage at the nature of life and death in general. But mostly at myself.
I’d given up hope. I didn’t even realize it. It had happened so slowly and so steadily that I didn’t even know that I’d decided that there was no end to this. That my life was going to be nothing, but a horrific nightmare as more and more people would succumb to this disease. It seemed inevitable that I would too. I’d already known dozens and watched hundreds more succumb to the disease; wasting away, steeped in illness, sorrow, fear. Lived in a community shell-shocked and emotionally beyond exhaustion. So to suddenly be handed hope … so casually and without fanfare. It was like I’d been floating in a zero-gravity chamber for a decade and someone suddenly turned it off. It was painful and disorienting.
It took years for me to be able to even begin to relax into something like a normal inner-space again. It’s taken decades to recognize how many ways the trauma of all of that affects me (you want to talk about fears of abandonment, I could write a book about that). It’s taken decades to patch over and fill in that sinkhole. As I watch the country (world) careening toward so many different kinds of disasters (health, water, food, disease, economic, human rights, climate crises) that our current leadership seems hell-bent on crashing into, I’m aware of small, familiar, and seductive patches of numbness inside. Resignation hovers like a constant threat. Part of me feels like I cannot possibly face more loss on that scale – whether it’s physical loss or societal or psychological.
I read a quote from Bernie Sanders that “despair is not an option,” and I thought about the power of hope, the necessity of it. I am terrified, angry, exhausted, but there’s hope too; like a steel rod that runs through me and nothing is taking that from me again. My wish for anyone feeling similarly is that they grab onto whatever hope they have inside and don’t let go. Let it fuel you as you make calls, write letters, protest, have difficult conversations, read depressing articles, hear hateful ignorant rhetoric, start (if you haven’t already) to see people you love impacted by bad policy and volatile situations, or when people tell you that “it won’t work” “don’t bother” “it doesn’t make a difference”. Hold onto it, not like your life depends on it, but like the person you love the most in the world’s life depends on it. Hold onto it and make it your secret superpower.
Categories: Personal Essay