LIVING WITH THE PLAGUE, THEN AND NOW
COVID-19 is called “novel” because it’s a new pathogen that made its unwelcome debut in 2019. Its novelty notwithstanding, the global pandemic caused by the crown-shaped bug feels familiar—in some ways—to me and Rob, my partner of 38 years. Now in our 60s, we became a couple in 1981, just as another worldwide plague, AIDS, was emerging. We heard the news about the strange new malady on the radio, as we were driving over the Golden Gate Bridge on our first vacation together, in a city famous as the epicenter of gay life in America. Soon, San Francisco was to become an epicenter of a disease that came to be identified with homosexuality itself—AIDS originally was called GRID, gay-related immune deficiency—and that would change gay life forever.
If you were an urban gay man, you were affected by AIDS even if you were not infected. You saw people you knew suddenly get sick, often horribly so, with bizarre conditions like oral thrush (a thick layer of whitish fungus that left ugly lesions inside the mouth), or toxoplasmosis, a common parasite that wreaked havoc on the brains of people with AIDS, causing seizures and blindness, and Kaposi’s sarcoma, a cancer that previously affected mainly elderly men of Mediterranean descent but whose ugly, disfiguring manifestations were becoming more common among young men who inevitably were described in medical literature and news stories as “previously healthy.”
Funerals became a common social ritual, gay newspapers were full of obituaries. Am I next? We all asked ourselves. Did that guy I fucked with last week, last month, last year at the bathhouse have it? Oh my god, what is this new blemish on my leg? Did you hear about Mike and Tony? Both sick. Then, both dead.
In January 1988, I sat by the hospital bed of Jose’, my partner before Rob, who had gotten sick the previous fall. A brilliant scholar who had just completed research for his PhD at Yale when he fell ill, Jose’ was reduced to a skeletal body, unable to see or speak, his continuing brain seizures barely controlled by medication. He died in the hospital having never regained consciousness. A close friend of his, also an academic, promised to complete Jose’s dissertation from the detailed notes he’d left. Less than a year later, that friend also was dead.
The freewheeling sexuality of the recent past came to be questioned, criticized, condemned—and not only by our enemies, the Reagan administration, the Catholic Church and most Christian denominations, political conservatives, the families that rejected us—but even by ourselves. Was our post-Stonewall liberation from sexual repression into a world of casual, “recreational” sex a false freedom? Is the rectum a grave, as the attention-grabbing title of a 1987 essay by Leo Bersani wondered? Bersani rejected the “redemptive reinvention of sex,” the idea of sex as a positive force for personal and political liberation, and instead highlighted its “anticommunal, antiegalitarian, antinurturing, antiloving” implications.
The gloomy musings of academic theorists seemed to mesh with the realities on the ground. In the summer of 1985, Rob and I spent a weekend with another male couple, Brett and Bill, who had rented a bungalow in the gay enclave of Cherry Grove on Fire Island. We were sunning ourselves on the beach when I remarked that there seemed to be much less nudity, cruising, and sexual play than in summers past. “The party’s over,” Bill replied.
During the worst years of the AIDS epidemic, the horror of the syndrome itself was amplified by the social stigma we gay men felt. The scientists had changed the acronym of the new syndrome to reflect the reality that “anyone” could contract the pathogen that caused it. But to most Americans, AIDS was a gay disease. It was first identified among us and we bore the largest burden of illness, even as it became clear that HIV was being transmitted also through infected syringes and heterosexual sex. We felt alone and abandoned; straight people seemed to care about AIDS only if they thought it might be a personal threat. It became common for gay men to feel we were in the midst of a war, even a holocaust, while the rest of the world went about its business as if nothing extraordinary were happening.
But we rallied, drawing on our own strength, our own resources, our love and anger. We created education and support networks, healthcare organizations, and activist groups. We invented the concept and practice of “safer sex,” we protested government indifference and malfeasance, we took care of each other. Then, the medical breakthroughs arrived, first in the mid-90s, with new antiviral drugs. The drugs got better and better, to the point that people with HIV could achieve “undetectable” infections with which they could live, instead of dying within weeks or months of being diagnosed. With the virus under control, HIV/AIDS was no longer a death sentence, at least not for those who had access to the wonder drugs and to health care.
Now, in 2020, the coronavirus pandemic has Rob and I and gay friends thinking about our experience of AIDS; what is reminiscent of those days, what’s different. The sudden and rising tide of illness and death and the resultant fear, apprehension, horror, and sorrow; yes, we’ve been through that. The anxiety evoked by every new story about the wiliness of COVID-19; its ability to kill young, previously healthy people; the varied ways by which the virus does its damage—pneumonia, heart and kidney problems, blood clots, strokes; and the desperate hopes for a vaccine or at least effective treatments: this all feels too familiar. As do some of the social and political sequelae of the virus—governmental incompetence and demagoguery; bias and violence directed at people, now Asians, whom bigots blame for the disease; and disproportionate impact on certain classes of people, the poor and people of color.
What’s different? Although we gay men often felt alone during the AIDS epidemic, we were not socially isolated from each other or from the rest of the world (unless we chose to be). We worried about who we had sex or did drugs with, but we didn’t need to worry about casual contact with others. Early in the AIDS epidemic, crazy fears circulated that an “innocent” person could get infected by being in the same room with a gay man. With COVID-19, a stranger’s sneeze or cough—or maybe just droplets floating in the air?—can bring sickness and death. “Anyone can get AIDS,” a claim that sometimes informed public information campaigns, was true only in a limited sense—anyone who had sex or shared drug equipment with an infected person could be at risk. With the novel coronavirus, we really are all at risk.
The ways Rob and I coped then and now are likewise similar and different. When gay night life began to suffer as AIDS became more widespread, we went out less and I cooked more, for us and for friends. (Now, I’m in the kitchen every night, and as much as I enjoy roasting a chicken or making one of our favorite pasta dishes, it’s getting old.) We both tested HIV-negative, to our immense relief—and surprise, given our histories. I joined ACT UP, the AIDS Coalition to Unleash Power, attending the activist group’s marathon Monday night meetings, working with its media committee, going to demonstrations. (Today, mass protests are constrained by the coronavirus, except for members of Trump’s MAGA cult who heed his call to “liberate” themselves from necessary public health measures.) When life changed because of HIV, we adapted to new circumstances. But if we were more homebodies than gay men out on the town, we weren’t forced to be. Less sociable maybe, but not socially isolated.
As I write this, in late April 2020, we have been confined to our one-bedroom apartment in Queens, New York, for almost two months. Our only company has been our two cats, who by now seem used to having us around all the time. Interaction with other humans is limited to social media and phone calls with our siblings.
I should call my parents, now 96 and 94, more often. The children of immigrants from Campania and Sicily, they lived through the Great Depression and a world war; they experienced childhood poverty, the premature death of parents. They know about deprivation and loss. I want to talk to them about what Rob and I are experiencing here, in New York City, the epicenter of the US pandemic. About how scared, depressed, and often hopeless we feel. But they, with memory loss and dementia, aren’t capable of the kind of conversation I’d like to have with them. They are still in their Connecticut home, cared for by live-in aides, and their life revolves around meals and medications. They are only vaguely aware that something terrible is going on in the world outside the house they’ve lived in since 1962, where they raised me and my brother.
During the worst years of the AIDS epidemic, they were terrified that I would get sick and die. The film “Philadelphia” was a distressing experience for them. (I was surprised, and pleased, that they had seen it.) My parents are reticent people—Rob has always said that they are the quietest, least demonstrative southern Italians he’s ever met—but back then they let me know, in their way, of their fears for my and Rob’s health, our lives. Now, with a disease far more difficult to avoid than HIV, and us living in the most affected borough in the most affected American city, they don’t ask how we’re doing. That saddens me. It also evokes a surprising, childish feeling of being neglected—you don’t care about me! My conversations with them are rushed and disjointed, with me having to repeat myself often to cut through the dementia and, in my father’s case, hearing loss, too.
You have to accept that your parents aren’t the people they were, Rob tells me. If for us, he says, every day feels like the movie “Groundhog Day,” with its repetition of an unchanging present, for your parents, the time loop repeats every five minutes— “Dad, I just told you about Rob’s job!” “You did?”
But unlike us, they don’t chafe at their diminished lives. My father may occasionally wonder who took his car keys— my brother—but my mother doesn’t like to leave the house anymore. My parents also don’t worry about the future, while we, locked down in a wounded city whose recovery seems distant and uncertain, live in fear of what it might bring. The one certainty we have, as during the last plague years, is that life will never again be what it was.
Bio:
George De Stefano is an author, journalist and blogger living in New York City.
OVUNQUE SIAMO 