BY Lynne Tillman in Opinion | 19 MAR 17
Featured in
Issue 186

Lost Souls

How remembering the AIDS epidemic helps endure the crises of today

BY Lynne Tillman in Opinion | 19 MAR 17

When I was a small child, I was very frightened of death. Not unusual, I know. At five, I begged my father, who tucked me in at night, to make sure that, if I died, I’d be buried with my pillow and covered with my blanket. He said he’d take care of it. He must have been afraid of death, too, I thought later, because he was very understanding. My BFF Jill – tight from kindergarten through fifth grade – was also afraid. She would sit under her dining-room table, her hand over her heart, and listen to it beat, worried it would stop. Maybe she infected me, or I infected her.

Lately, death has been calling on too many friends and people I never met who were important to me – as thinkers, writers, artists. Mostly, cancer, vicious types, pancreatic, brain. But not only – heart, stroke, aneurysm. It’s the march-of-time kind of death, shocking – death is always – but not beyond one’s ability to comprehend its arrival.

It’s not the AIDS epidemic. Not that terrifying, uncurable, unstoppable disease’s onslaught of slaughter. Unimaginable dying. People in their 20s. And death’s scythe was sharp and fast. Guys in the neighbourhood I knew casually and to whom I’d say, ‘Hi, how are you?’ – from one week to the next, they would disappear. ‘Oh, Keith. He’s gone,’ people would say. Not, ‘He’s dead.’ Just gone. No need to explain. Anyway, nothing could really explain it.

Several close friends learned their fate, and it was a very cruel fate, and I did what I could to be there. They had watched their friends die, they knew what would happen. It was only a matter of time. 

I don’t know how to write about that time. And, I don’t think those of us who lived through it, some with HIV or AIDS who survived long enough to be saved by protease inhibitors, or those of us who weren’t infected, have found a way to talk about it. I mean, that time comes up, then there’s a kind of hopeless silence. And the people who survived it, because of the meds, experience a perpetual guilt.

I looked at Daniel Defoe’s A Journal of The Plague Year (1722) – a brilliant, unique, investigative novel – for succour and help, for perspective on the epidemic. I read two books that do represent this 20th-century plague accurately – that’s not the best descriptor – most exquisitely: Edmund White’s novel The Farewell Symphony (1997) and Cynthia Carr’s Fire in the Belly: The Life and Times of David Wojnarowicz (2012). With different approaches, in different ways, White’s and Carr’s books made me feel as if I were again living through it.

I’ve read both books twice, and it’s curious how they affected me each time I read them. I suppose time changes one. And, one changes with time. There’s context, always. Still, the boom drops, the stage goes dark. 

Reader, you may wonder why this epidemic is on my mind. Which reminds me of being on the last New Jersey Transit train out of Penn Station, the 9:07 am to Princeton Junction, on 9/11. Last train, though I didn’t know it at the time. I was reading the newspaper, when I heard two men talking about the World Trade attack in 1993. I wondered, why are they talking about that now? I looked in their direction and, behind them, in the distance, I saw one of the towers on fire. That was why.

I’m remembering the AIDS epidemic to find a way to get through, to imagine another future than today’s human-made political disaster, which affects everyone in the US and the rest of the world. Or, ROW. That’s how White House operatives write it. ROW. Punchy, right?

Here, monied survivalists plan their getaways. In Silicon Valley, tech giants, as they’re always called, stockpile food, buy real estate and private jets. They’re ready when IT happens, to escape with their families. Survival at all costs, that’s their cry. It reminds me of another famous cry: ‘Are we not men?’, which rang out in the 1932 movie Island of Lost Souls:

Beasts (in unison): Are we not men?
Dr. Moreau: What is the law?
Sayer of the Law: Not to go on all fours, that is the law. Are we not men?
Beasts (in unison): Are we not men?
Dr. Moreau: What is the law?
Sayer of the Law: Not to spill blood, that is the law. Are we not men?
I suppose that depends on your definition of ‘men.

Lead image: Erle C. Kenton, Island of Lost Souls, 1932. Courtesy: Getty Images

Lynne Tillman is a writer. Her most recent title is Mothercare (Soft Skull Press, 2022). In 2025, Soft Skull Press is publishing a book of her selected stories titled Thrilled to Death.