In 1987, when I was eight years old, the same age my daughter is now, my father—a vibrant, 37-year-old gay man—was diagnosed with AIDS. He was already sick, though not so sick that he couldn’t function. At first, I had only hints at what was going on: the carefully organized pill bottles that appeared atop his tall dresser; the anxious conversations amongst his friends outside the market in Fire Island Pines on weekend mornings; the new dentist because my father’s old one would no longer see him.
Then one night, my dad sat me down with an issue of National Geographic that detailed the AIDS crisis, and he told me he was ill. “Most people do die,” he said. Yet he tried to instill a sense of optimism in my very young mind, showing me a photo of the virus and telling me that the receptors inside his cells could be “blocked” by endorphins—meaning the more joy he experienced, the fewer pathways the virus would have to infect him.
As an adult, I would realize the tactic was meant to remind me of the importance of joy even in the face of death; it was, I believe, meant to empower me, to give me a weapon against a disease for which there was no viable treatment. As a child, it seemed a vague proposition, with no way to quantify results. I was unsure how to create joy when all I felt was fear and sadness. Even joyful activities became increasingly tarnished by the limitations of my father’s disease. A bike ride in Central Park ended with him unable to keep pace. A trip to Europe was cut short because he was running a fever. Joy, it seemed, was not a cure.
It took five years for my father to succumb to AIDS, his body ultimately ravaged and wasted by Kaposi’s sarcoma, which left him unable to walk for months before he finally died. He was hospitalized multiple times with infections, each one bringing the specter of his death ever closer. Each goodbye carried with it the possibility of never seeing each other again. Each hug felt like it had to convey the vastness of our love for maybe the last time. I had my first panic attack in the hospital visiting my dad; he was getting a transfusion and the IV became dislodged from his arm, drenching the bed linens in blood.
During those years, many colleagues and friends of my parents’ who worked in the arts in New York City also lost their lives. The terror that imbued that time was very real, spurred at first by a lack of information—it took time for people to understand that AIDS was caused by a virus, that the virus was transmitted by the exchange of bodily fluids, that it was initially spreading through unprotected sexual intercourse between men, that it was preventable. Later it was spurred by the fact that AIDS was almost always fatal and, as even I understood, the government didn’t seem to care.
The panic and stigma associated with the disease led people to lose their jobs, to be ostracized from their communities, to be feared simply for breathing the same air, occupying the same space. I weathered my father’s illness in isolation and in shame. Afraid I would be shunned, I never spoke about it with friends, or even my parents. Instead, I stared at the phone in my darkened bedroom at night, afraid it would ring with news he was gone. I bargained with a god I didn’t believe in, begging for a miracle. Knowing that my father was vulnerable to infection, I came to see the world as toxic and dangerous. And my father’s eventual death on some level told me: those fears were warranted, and I had failed. I was not able to save him.
With the arrival of COVID-19, I felt agency I didn’t have then. A week before it was mandated, I pulled my young kids from their school. Just by walling ourselves off, I told them, we could be saving lives. I reframed this experience around a positive message of care for others. My father’s death, I had explained in December, on what would have been their grandfather’s 70th birthday, was rooted in the lack of such care. I had revealed then that a strange sickness appeared and began killing gay men. I told them our government didn’t do enough to stop it. I expressed my outrage over this loss and they mirrored it back—how dare they let grandpa Charlie die because he was gay!
Recently, I’ve nearly come to regret telling them the story. I spent years of my childhood grappling with the impending loss of a parent—with death that comes after a long and difficult period of uncertainty. Why couldn’t I have spared my children this bitter reality a while longer?
Yet they would have known anyway. Of course, the truth is there is no scenario in which my kids would be totally OK right now. Children know what they don’t “know.” Just as I knew the truth of my father’s situation when I saw the pill bottles on the dresser, our children know, no matter how reassuring we think we are being with our words. I’ve lost track of the number of mothers in my Facebook groups posting about their children having tantrums, resisting bedtime, acting out. We rushed my own daughter to the ER four weeks ago because her pediatrician was convinced she had appendicitis. She didn’t. She had severe constipation most likely brought on by stress.
Yesterday she and her five-year-old brother constructed a hospital in our living room where they treated a doll named Lily who was suffering from appendicitis and a broken leg. After some “blood work,” Lily was revealed to have COVID-19. As I watched my children lovingly fashion an IV out of a science kit test tube and piece of packing tape, I was reminded how desperately we all want to solve this. We want a way to fix it and make it go away—or to pretend it’s not so bad.
Yet one thing the AIDS crisis taught us is that the denial of the truth only makes the reality worse. The first cases of the virus that causes what would become known as AIDS appeared among gay men in the late 1970s. By 1982, roughly one thousand gay men had died and the Centers for Disease Control had coined the term “acquired immune-deficiency syndrome” (AIDS) to describe the final stage of HIV infection. That same year, President Ronald Reagan’s press secretary, Larry Speakes, dismissed questions about the growing epidemic, saying the White House knew nothing of the “gay plague.” The current CDC director Robert Redfield—key to the nation’s efforts to contain the coronavirus—was also part of the AIDS denial movement in the 1980s, helping to establish bigoted HIV-policy within the U.S. Army where he was a researcher. It was not until 1985 that Reagan first publicly acknowledged the AIDS crisis, at which point more than 15,000 Americans had died, most of them gay men.
Today, we are witnessing another kind of bigotry leading to disproportionate loss of life: entrenched inequalities make it harder for people of color in the US to work from home, make it less likely for them to have adequate health care and coverage, and more likely that they have serious pre-existing conditions. In Chicago, black Americans account for more than half the COVID-19 cases and nearly three quarters of deaths, even though they comprise less than a third of the city’s population. Disproportionately black counties have accounted for 60% of coronavirus deaths so far.
As with AIDS, this pandemic reveals not only the reality of our universal mortality, but also the lack of a cohesive social fabric. The rallying cry “we’ll get through this together” demands we embrace togetherness while highlighting our failure to forge true togetherness. Yet it has become the only truth I can offer my kids, a truth radically embraced and lived by gay people as they watched their world permanently altered by leaders who did not deem their lives worthy of sufficient intervention.
In the face of death, we tell stories of what we hope we can be. Just as it is powerful to think joy might stop HIV from binding to a cell, so too it is galvanizing to imagine that this virus might lead to a deeper togetherness—the most vital remedy we could manufacture, if (as history suggests) the most unlikely. Lately I’ve been reading John Ashbery’s stunning AIDS poem, “How to Continue,” an elegy to members of the Fire Island gay community of the Pines and Cherry Grove, where I spent summers as a child, many of whom died at the virus’s peak: “And when it became time to go / they none of them would leave without the other/ for they said we are all one here.” If only it were so. Maybe one day it will be.