My Father Died of AIDS 22 Years Ago
…But This is My First World AIDS Day
The first World AIDS Day was held on December 1, 1988. I was ten years old. My parents had just gotten divorced and moved us out of the split-level house in our small Kentucky suburb where we’d lived for years, in the neighborhood where I’d spent summers digging for arrowheads, searching for crawdads, and riding my bike deep into dusk. My father now had a tiny, cement-walled two-bedroom apartment on the campus of Eastern Kentucky University, where he taught business law. My mother, a middle school teacher, moved my brother and me to a nondescript rental house. After years of family vacations, piano recitals, and Sunday mornings singing church hymns, everything in my life divided and contracted: our physical spaces, the time we spent with each other. We ran into my father at a discount store in one of the home aisles, shopping for dishes.
Before they split up, my parents spent hours each evening talking in their bedroom with the door closed, while I read or played kickball. I cornered my mother in the kitchen one night after one of those marathon discussions. “Why does it always look like you’ve been crying after you’ve talked to Dad?” I asked. I knew it was a naïve and childish question even then; I remember thinking that perhaps the naivety itself, a ten-year-old’s melodramatic wording, might endear her to finally offer some clarity. “Because I’m sad,” she said. Her usual vague way. I think by that point, I’d lived with the subtly discomfiting and uneasy currents coursing through our home long enough to know not to ask further.
He told my younger brother and me in the spring of my eighth grade year that he was HIV positive, and died five months later.
By the fourth World AIDS Day, in 1992, my father had died. Histoplasmosis, known as “caver’s disease,” caused by breathing fungal spores, had hit his lungs. It’s a common infection among AIDS patients. It moved on to his brain, where it created lesions; soon, he was suffering from dementia. During the winter of my eighth grade year, he’d started acting bizarre — a wackier, embarrassing, sometimes horrifying version of himself — then had brain surgery, then gone down, fast. He told my younger brother and me in the spring of my eighth grade year that he was HIV positive, and died five months later, a little more than two months shy of December 1.
I did nothing to commemorate him that World AIDS Day. A year prior, AIDS was something I heard about on the news or read about in the TIME magazines that arrived in my mailbox. Now, suddenly, those multiple acronyms drew my breath sharply in: could anyone see how I seized up when I heard them? I was a freshman at a high school where people drove to school with Confederate Flag bumper stickers on their trucks. The movie Malcolm X had just been released, and beefy football players wore rebel flag T-shirts reading, “You wear your X, I’ll wear mine.” After school, in a dark classroom, I confided in a trusted teacher about my father’s death, the way I’d been taught to do about Big Family Problems: addiction, abuse, assault. I told my sweet but slightly homophobic boyfriend. I told three other friends. Otherwise, there was no way I could risk my social standing with the news that my father had died of AIDS, or that he had been in the closet his whole life. Which was worse? At the time, they were both seen as equally shameful.
There was no way I could risk my social standing with the news that my father had died of AIDS, or that he had been in the closet his whole life. Which was worse?
For the next 21 years, I tiptoed around World AIDS Day. Sidled up next to it, felt it out, ran away. I couldn’t win. We had barely visited my father’s grave, and the guilt I felt over being a weak and negligent daughter tore me apart, leading me down several self-destructive paths in my 20s. What kind of a daughter — who supposedly adored her father — doesn’t try to keep his memory alive? Doesn’t keep photos of him in view? Doesn’t leave flowers at his grave? Every time I got close to his memory, I drew back, stymied by my own guilt, the complicated layers of shame I carried, overwhelmed by the darkness and unease I sensed in his story, and the fear that openly loving him would mean betraying my mother. Would I be hurting her, my remaining parent, who had her own heartbreaking story to tell? And World AIDS Day was larger than my father, too — it wasn’t just that it had impacted our lives so greatly, but that it had impacted our world so greatly. On some small level, I wanted to be a kind of an activist. Instead, I did nothing.
The feelings layered on top of me like multiple blankets, ultimately immobilizing me. And then it was December 2, and December 3, and December 4. There’s next year, I’d think, relieved. But what would that even mean? Go to a World AIDS Day ceremony? Read his favorite poems? When you’re told to forget, even something as simple as lighting a candle seems melodramatic, trite.
When you are asked to forget, even something simple seems melodramatic, trite.
In my early 20s, I met Alysia Abbott, a writer and memoirist, who had also lost a parent to AIDS. Alysia’s story is vastly different from mine — her father was an openly gay poet who raised Alysia alone in San Francisco — but here, finally, was someone else who understood.
Last year, after Alysia wrote an acclaimed memoir about her father, we decided to try to find others like us. We wanted to hear their stories. We wanted the world to hear their stories. We couldn’t be the only ones. Outside of World AIDS Day, we don’t focus much on the disease anymore in this country, in our haste to declare it no longer a death sentence, but in the American South, it’s not over. Among young gay men, it’s not over. For black women, it’s not over. There are many populations for whom it’s not over. And for families like ours, who grew up in the shadow of AIDS, even if we tried to forget, it was never really over.
For families like ours, who grew up in the shadow of AIDS, even if we tried to forget, it was never really over.
So Alysia and I launched The Recollectors, a website to recollect the stories of the parents lost to history, with oral histories, essays, excerpts, interviews and photos. In a culture that has swept AIDS under the rug, even the simple act of posting a photo of a lost parent feels like a small but powerful piece of activism.
I cried the first time we received an email saying “I’m one of you.” And then they kept coming. Mothers lost, fathers, stepparents, both parents. Proudly out dads, deeply closeted dads, half-closeted dads, addict dads. Addict moms. Parents who were hemophiliacs or had undergone blood transfusions. Children who didn’t know their parent’s real cause of death was AIDS until years after they’d died. Children who don’t know how their parent contracted the virus, and who don’t think the knowing is necessary. Children who are still too fearful about being out about their parent’s status, and fall back on the old standbys of cancer or leukemia. Children who said, over and over, “I’ve never met anyone else”; “I thought I was the only one.”
I cried the first time we received an email saying “I’m one of you.”
You are not the only one, we write back. And I am not the only one. This community that’s now 75+ strong has become a makeshift family. Oh, you were mysteriously warned to stay away from your father’s razors? Me too. Oh, your house was peppered with gay signifiers, a kind of homosexual seek and find that you were too young to understand? Me too. Oh, you had to manage your mother’s medical care, completely on your own? You had to fight fearful and homophobic doctors? You had to wade through complicated layers of secrecy and parceled-out bits of half-truths to figure out who to tell, and how, and when? And hope they would react kindly? We understand. Even though our stories are wildly diverse, there are so many similarities: the love for our lost parents, the fact that we all battled the isolation and stigma of this disease, the feisty desire to keep AIDS in the cultural forefront.
You are not the only one, we write back. And I am not the only one.
When Philadelphia was released, a year after my father died, I watched it alone on a VHS tape in the basement of my mother’s house when the rest of my family was gone. Even seeing the trailers sent me into a frozen panic, and I couldn’t imagine who I’d possibly ask to endure that with me. I could barely get through it. After that, I avoided almost all AIDS-related media — until this year, when I sat down to watch How to Survive a Plague, and thought, This is fine. In fact, this is necessary. Now it feels vitally important to catch up on what I avoided all those years. Even though I’m not positive, it’s still our history, too — because it’s our parents’ history. Maybe it’s just that I’m older; maybe it’s that my family is much more supportive. But I think it’s in large part because of The Recollectors: their grace, honesty, strength, activism and willingness to share. This last World AIDS Day was the 26th, and for the first time, I didn’t sleepwalk through it. I had a community of people with which to commemorate it, and their brave, complicated, necessary stories to tell.
This essay, originally published on December 1, World AIDS Day, has been updated since publication.
Whitney Joiner is a senior features editor at Marie Claire magazine and the co-founder of The Recollectors, a storytelling forum dedicated to remembering parents lost to AIDS and supporting the children they left behind.
