Guest Post: Surviving Surviving

By Tim Kingston

I have been suffering from what could best be termed “temporal whiplash” lately.

I am part of a group that organized a June reunion of AIDS activists for the 25th anniversary of the VI International AIDS Conference, held in San Francisco in 1990. At that time, I was a reporter loosely affiliated with the AIDS Coalition to Unleash Power (ACT UP), the organization that planned and held a week of demonstrations the whole week of the conference.

The results of that reunion were not what I expected.



© Daniel Nicoletta

ACT UP changed the world; that is not hyperbole. Were it not for ACT UP, HIV treatment would be 10 to 20 years behind where it is now. If you don’t believe that just go ask Anthony Fauci, head of the National Institute of Allergies and Infectious Diseases the government agency that oversaw the federal response to HIV/AIDS. ACT UP was a group united in both anger and love, determined to save our own lives, our loved ones’ lives, and the lives of all people with AIDS and threatened by AIDS.

Needless to say we did not have time for grief—for about 25 years.

Grief? We were too busy for that; we had to be.

AIDS activism called and we were very good at it. We made a grinning, evil buffoon of an actor pay attention. We compelled a former spook to spend money he did not want to on AIDS. We forced profiteering drug companies to drop their prices.

Despite our efforts, hundreds of thousands died.

It isn’t right for twenty- to thirty-year-olds to see scores of friends and lovers die in a war that much of America refused to even acknowledge. That is something that should never have become the norm, but it did. We grew up accepting that if we had not heard from someone for a few weeks or months, there was a good chance they were dead. We checked with friends with AIDS: Did they want a public, political funeral with their ashes spread on a government building, or a private farewell?

We, of course, knew our grief was there, sort of. But we were too busy. We buried our dead and buried our memories and loss, did the work, and eventually moved on. Then it became the past.


In the course of organizing the 25th anniversary events for the reunion the group of the people organizing the event wound up talking to a reporter about that loss, almost by accident, and it started slipping out. One organizer called the grief an “HIV egg,” with a hard shell buried deep and safely away, inaccessible and nicely cloistered, like a dust mote becomes surrounded by a pearl, except less pretty and far bigger.

Others likened the grief to the floor of the San Francisco Bay, polluted with mercury by the gold-lust crazed miners, then buried by layer upon layer of soft sediment, hidden away for years.

Then we decided to have anniversary, because, oh fuck, 25 years? How did that happen? It did not occur to me or to many of us that a reunion would involve dredging the sediment. All that loss, angst and pain pulled from the depths would inevitably require attention. Who wants that?


Photo Credit: Tim Kingston

So we got to work. Yes, we are good at that. We put together a weekend’s worth of events that included What’s Your Damage, a night of performance and video accompanied by discussion of how art intersected with AIDS activism, both then and now; How AIDS Activists Crashed the AIDS Conference and Changed the Agenda and the World , a panel discussion on the actions themselves, a party and an amazing memorial When Our Comrades Fell organized by Grief Beyond Belief founder, Rebecca Hensler. Roughly two to three hundred people came from around the Bay Area, all over West Coast, the nation and even South Africa. So many people wanted to be there. So many people when they heard about it needed to be there.

In the course of putting all this together, the reunion organizers reluctantly realized we were all going nuts. Unexpected bursts of emotion. Tears. Tetchiness. Old and odd behaviors. Acting out. It was not like we did not know it, but it was still sort of unexpected. There was the quiet checking in with each other, the “Err, um, are you having a hard time with this too?”

The grief was leaking out. Containers were being breached. Walls crumbled. Waters muddied. How could it not be? Between the eight of us we have literally known hundreds who had died. Still this leakiness was not on the agenda, apart from the agenda of Rebecca Hensler who — having spent the past four years immersed in grief support — had a pretty good idea of what to expect. But even she got sandbagged by emotion during the memorial, literally dropping the mic when she tried to speak of a former lover and comrade.

And then there’s that temporal whiplash I mentioned.

It was like going back in time, but being right here. I was choking up in the middle of a workday for no good reason. I felt exhausted and emotionally drained like I had been running marathons. Then, as the reunion approached, it all accelerated. Not dread exactly, but more, “I will be glad when all this thing is over,” not realizing it wouldn’t be.


Photo Credit: Gerard Koskovich

How can I explain it, before during and after? There was the joy of seeing old friends; there was the sharing of memories, silliness, war stories of a kind, an impromptu demo; there was the sudden stabbing pain of loss, leaving you standing in the middle of the room where the memorial was held, stock still and unable to move or think. The photograph seen — not seen for years — that breaks a heart.

But that is not the weird thing. The weird thing is feeling like one is in the middle of a bombed out city that no one can see but you. Ruins all around, the devastation all around, yet everyone acting as if everything is just fine and life is good and goes on. It feels like two entirely different worlds and times jammed into the same instant. And no one around you notices.

It was completely crazy making.

Or as the man who coined the term ‘temporal whiplash’ put it, one minute he was hanging out with AIDS activist buddies like 25 years had never passed, then he was back with his husband and friends planning an evening dinner right now. Whiplash. Suddenly 25 years disappeared in an instant.


But we have all changed thanks to this reunion. We have all faced what we could not face alone, without being around our ACT UP family: Telling stories we have been holding close for a quarter of a century. Bringing friends back into our emotional lives for the first time in years, with all the good and difficulty that entails.

AIDS changed all our lives; then we went in different directions. Many, many of us died, or self-destructed, often in less clear-cut ways than deliberate suicide. The rest of us went on without thinking about it any more, incorporating the lessons of the epidemic and bringing them to the work we each do today. Now, with the reunion, AIDS and its toll is right back with us. But this time we can start to face it. So many people I talked to say they had not been able to approach their memories until this reunion.

The last time I approached this topic it took a significant amount of bourbon to start writing, and days of hurt followed. I was a little bit of a mess. This time — apart from one backslide that some of the organizers tease me about — I sit here, the day after the impossible Supreme Court marriage decision I never thought I would see, calmly writing about the grief that is part of my life. I think about how to honor it and the people l loved and missed, without walling them and that time out of my life; I try to figure out where to go from here and how to do that.

We ACTed UP. We changed the world. And we couldn’t have done it without both the people who are here and the people who are not. We honor those who fought and died and remember them. We tell their stories so they are not forgotten. But some things won’t change, not the least being they are gone. And it will always make me tear up when I hear, or read the ACT UP slogan, “All we want is a cure and our friends back.”

organizing committee

Photo Credit: Kanani Kauka

But now I won’t stuff it away. I will tell people and be proud and honored I got to be with them. I would prefer they were still here. Or, as Andy Ilves, an ACT UP member who flew in from South Africa paraphrased, “If you want a monument for them, just look around.” Look around and see how many more people are here who would not have been without what we did: ACT UP.

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