When I began writing this novel, I was interested in answering a question: Do we remember epidemics best when we’re kids?
Every generation has a disease that shapes it. For my grandparents it was the measles. For my parents, polio. When I spoke to my mom recently about this, she said,
Funny, I remember the polio scare so much even as young as I was. I remember my parents arguing with my teenage sisters about not going swimming or to movies . . . no kissing. There was so much fear about how it was spread. At one point it was thought to be spread by flies . . . So all these businesses started giving away fly swatters with their names on them.
I was born during the height of the AIDS epidemic, at a time when the medical community was starting to think it might have all the world’s great diseases licked. (Smallpox had just been eradicated, and they thought polio was next.) HIV/AIDS is the disease I grew up with, or rather alongside. In childhood, it was a bogeyman that kept company with Freddy Krueger and the Marshmallow Man. The Star Stealer in Rainbow Brite scared the shit out of me, but she had nothing on Philadelphia. I remember the fears (you contracted it from a toilet seat, from kissing), and the rumors (it originated in Africa when a man had sex with a monkey), and I’d like to think all this was so exaggerated because I was hearing it on the playground from other kids who were as scared as I was. But I know it was just as bad among the sane, educated adults they were getting information from.
I do think it was scarier back then.
The disease was a lot easier to catch before the medicine got better (after 1996), before HIV-positive people were walking around with undetectable viral loads. We didn’t know how it was transmitted. We couldn’t even test for it for a long time. And, in many ways, the bogeyman of HIV/AIDS was all the more terrifying for me because I was coming to terms with my sexuality. This monster was specially tailored for me.
Even as my Freddy Krueger and the Marshmallow Man retreated, AIDS remained very much a fear until I was well into grad school. Slowly, I learned all the ways you can contract it, or not contract it, and in what circumstances. It’s more complicated than you might think. I spent one of the worst months of my life on a post-exposure prophylaxis (PEP), back when I thought there was a fraction of an infinitesimal chance I might have been exposed, back when taking the drugs meant swallowing dozens of horse pills on a schedule timed by a stopwatch. The twenty-eight days of treatment included night sweats, fevers, nightmares, nausea, fatigue, and lightheadedness. I left work more than once because I couldn’t make it through the day. I woke myself up one night barking like a dog. But unlike people living with HIV, I could stop after twenty-eight days. The dreams stopped, and the fevers.
I slowly had to teach myself to worry about it in an informed, contained way. Over the past decade, as I’ve made friends with people living with HIV and dated some—as the medicine has made enormous progress—that monster has been tamed. Antiretrovirals and protease inhibitors (the drugs used to treat HIV now) have made enormous strides. Today, most people infected with HIV in the First World will no longer die of AIDS but of something else entirely, many of old age. Serodiscordant couples (couples in which one partner is positive and the other is negative) are now remaining serodiscordant for decades. And, to not a little controversy, many gay men are now taking medication preventatively (PrEP) and embracing unprotected sex, something that terrifies me.
It’s been a long forty years.
I recently attended an exhibit on the first five years of the epidemic in New York at the New York Historical Society. There, in one video I watched of a now-famous press conference, Health and Human Services Secretary Margaret Heckler announces the discovery of the virus that causes AIDS as well as of the impending release of an HIV test. In the next beat, she explains how they are hopeful a vaccine will be available in a few years. Though a few recent bone marrow transplants have stunned the world in inadvertently curing three people of AIDS, at the time I’m writing, there’s still the feeling that we are looking for that light switch in the dark.
But my nephew’s generation gets the antibiotic-resistant infections and Ebola. It’s an uncanny historical coincidence that the first outbreak of Ebola and the HIV epidemic that would take off in the U.S. (there have been several epidemics, of different types) happened about the same time, in the same location. We know Ebola first occurred in 1976 in Sudan and Zaïre, and though HIV is an old disease, all signs point to the AIDS epidemic gaining traction around the same time just south of this in Kinshasa (also Zaïre). When I began writing this novel in 2011, Ebola wasn’t a real thing to most Westerners. It was a popular disease for fiction (The Hot Zone) and movies, because it’s quick and it’s gruesome. On page 1, someone’s coughing, and on page 20, his skin is peeling off. I began writing about it (a plotline that I eventually abandoned) because in many ways, Ebola seemed to be HIV’s polar opposite.
We now call HIV a “lentivirus,” meaning slow virus, because it takes a person (untreated) an average of ten years to get sick. (Once you started getting sick, though, it snowballed.) And each person who got sick (not many do in the West these days) did so in a different way—the syndrome in AIDS meant that it looked a little different in everyone, and that meant that it was hard to pin any one pathogen on one source. The cause of AIDS wasn’t even discovered until 1983 in large part because HIV is a retrovirus, meaning it’s “reverse-transcribed” onto RNA—disguised more or less as the infected person’s own DNA. And we weren’t even sure retroviruses could exist in humans until the discovery of HTLV-I in 1977.
Ebola was the shock-and-awe of the medical world. On the surface, it was a much scarier disease. It spread rapidly and killed quickly in the most gruesome way imaginable. The symptoms always looked the same. And the virus was named and discovered within months of the first outbreak. When you have a virus that incubates and spreads so quickly, it burns white-hot and bright for only a short time, and then people get wise and the problem is contained. In other words, if you can ascribe a personality to a disease, it’s not in a pathogen’s best interests to kill quickly. HIV was so successful (successful in a biological and epidemiological sense) because it operated so long behind the scenes, undetected.
That’s why Ebola is in many ways unsuited for the United States. I imagine, and hope, it will be contained here fairly quickly. Still this new outbreak—these thirty-eight years later—seems like just one more reminder that we don’t have things figured out. And when we don’t have things figured out, it becomes very easy to point fingers at groups of people on the fringes of society. An Onion article from July 30, 2014 ran under a headline that says it all, Ebola Vaccine at Least 50 White People Away.
The bogeyman has had a makeover, but he’s returned.
Besides Ebola and HIV, there was one more disease that was destined to challenge the hubris of the medical community in 1976. Legionnaires’ Disease, which ultimately killed only twenty-five mostly white, mostly well-off, men after a Legionnaires’ convention in July that year, kind of perfectly encapsulates how class, social status, skin color, and sexual orientation can determine the attention a pathogen gets. Epidemiologists then were under immense pressure to find answers, and they did, in less than six months. Although HIV/AIDS was not nearly as easy to identify pathologically, early HIV/AIDS researchers had to fight tooth-and-nail to get funding, to get electron microscopes, to get any kind of media attention for what was originally named GRID (Gay-Related Immunodeficiency). An article, under the headline “Rare Cancer Seen in 41 Homosexuals,” was the first article to appear in the New York Times on Kaposi’s Sarcoma (an opportunistic infection and one of the manifestations of AIDS) on July 3, 1981. And President Reagan—the “last great” president—didn’t even utter the word AIDS until a press conference in 1985, after 20,000 people had already died.
You don’t have to look far to see the way disease gets mapped onto social paradigms.
So why Dracula?
Of course, Dracula is a bogeyman. Like disease, he’s shaped us and reflected our fears. The vampire Bram Stoker wrote about 127 years ago isn’t the sort of vampire we know from movies and TV today. When he picked a victim—Mina (the character who inspired Mike in my novel) or Lucy—the transition from human to vampire was not the neck-snapping, blood-exchanging rapid transformation you can see in The Vampire Diaries or True Blood. Stoker’s transformation was so horrific, in part, because it was slow. Dracula’s victims journeyed from full health to death only after a long series of blood transfusions and attacks (most of which happened off the page). They rallied, they got better before they got sick. And if you read the original, you’ll notice that there’s no clear-cut process for conversion.
I’ve always loved vampire stories, but it was only in the last couple years that I read Dracula for the first time. What struck me immediately about the story was how similar it was to what we know of HIV and AIDS, and what we saw when nobody knew what was making people sick in the late 1970s and early 1980s: people infected with the virus were getting sick slowly—at first it wasn’t clear just how slowly because there were still so many yet to show symptoms.
The more I wrote the more I began to see more similarities, not just between vampires and HIV, but between the homosexual of 1976 and the “vampire.” Like homosexuals, vampires would have to live in isolated pockets, closeted, and secretive. I wanted Dens to be his own kind of vampire, a “Wiedergänger,” and to feel an antagonism toward other vampires. Just as there are countless ways of being gay, I thought, so, too, would there be countless ways of being a vampire. And for a segment of society that lived in the shadows, it seems logical to infer (using homosexuals as a model) that there would be vampires bent on not just destroying humankind (heterosexuals in this analogy) but also themselves. As it was for homosexuals of the twentieth century, the idea of a “cure,” the very possibility of one, was a source of contention in and of itself.
Dracula can be read, in part, as a commentary on the limitations of science and medicine. Before the 1900s, when it was written—around the time when the Smallpox Hospital was built—illness was widely believed to spread through bad air or vapors, not through germs as we understand them today (though smallpox is airborne). This explains why the hospital was built with hollow walls, intended to function as ventilation ducts and bring fresh air to the sick. In Dracula, no matter what medical miracles its characters try out on Lucy, then Mina, nothing works. While we have made enormous strides in medicine since then, it still amazes me how little we understand of what’s happening on a microscopic level as our bodies come into contact with the world around us.
In writing this novel, I read a lot and researched everything I could research, trying to stay as true to the era I’m writing as possible. Willowbrook was a real school, crammed wall to wall with orphaned children in deplorable conditions. On Rivera's website, you can see some pretty terrifying footage from his exposé. New York was a gritty, dangerous place, and the subways even more so. In 1975, disgruntled police officers and firefighters put out a pamphlet called “Fear City,” warning visitors to stay off the streets after 6 p.m. and to—for no reason—ever take the subway.
Bryant Park really was called “Needle Park” by New Yorkers, and heroin was the hot drug. Click the image below for some more photos from NYC in the 1970s.
I originally created a character based on Gaëtan Dugas, a historical person, a Canadian flight attendant who was featured in Randy Shilts’s seminal book on the first years of the plague, And the Band Played On, as a sexually promiscuous “patient zero.” The more I read about and discussed this figure, though, the more I learned that Dugas was a human-turned-metaphor, and at worst, a publicity stunt that Shilts came to regret.
A few years after the uprising at Stonewall, gays and lesbians were just beginning to gain some rights and visibility. Promiscuous, anonymous sex, in part, became an extremely liberating force for people who’d lived in the shadows for so long. Telling this story without the that thread of sexual freedom felt like an incomplete history, but I didn’t and don’t wish to perpetuate the idea that this (or any) single man was the source point of an epidemic that has killed millions, just as a single blood donor like Lucy isn’t responsible for singlehandedly infecting all hemophiliacs. The truth is we don’t know where and when HIV first came to the United States, though that hasn’t stopped many loud people from pointing fingers.
For the scientifically minded, Jacques Pépin’s book The Origin of AIDS does a fine job of tracing back the different viral strains to different parts of Africa, then Haiti, and then New York, proposing along the way different start dates, transmission routes, that range as far back as the late nineteenth century (for HIV I, the most common and deadly type of HIV) in the central African areas of what is today Cameroon.
We know this virus has been in primates and prosimians for tens of thousands of years, maybe more, and except when it crosses species, it doesn’t make them sick.
Scientists theorize that the virus has been jumping species for a long time in isolated cases and could be connected to any number of strange deaths spanning the “dark continent” and beyond. The River: A Journey to the Source of HIV and AIDS, a beautifully written but exhaustive book by journalist Edward Hooper and now out-of-print, explored the theory that polio vaccination campaigns in Africa in the mid twentieth century could have been the spark that started the fire of the epidemic. He proposed that the vaccine was attenuated through chimpanzee organs, chimpanzee organs infected with the Simian Immunodeficiency Virus (SIV, the precursor to HIV), and then administered to humans on a massive scale. The book presents some fascinating early case studies of patients believed to be the first to die of AIDS: “Robert R.”, a sixteen-year-old boy who lived in St. Louis and died in 1969 from a host of infections that mystified his doctors; “Arvid Noe,” a Norwegian sailor, and his wife and daughter; and several others. You can also read more easily digestible versions of their truly fascinating stories on Wikipedia (click the hyperlinks on their names).
Although Hooper’s vaccine theory stirred a lot of controversy and has since been discredited, scholars can agree something changed in the twentieth century in Africa that made the world predisposed to this disease. Tinderbox: How the West Sparked the AIDS Epidemic and How the World Can Finally Overcome It by Craig Timberg and Daniel Halperin explores how, through colonization, the great European powers dramatically changed Africa—from the systems of roads, to sexual practices, and a major shift in circumcision practices—all setting the stage for the spread of the virus. Many Westerners are unfamiliar with the genocide that took place in the Belgian Congo in the first half of the nineteenth century, and with the way imperialists harvested rubber by making slaves out of natives, in many cases cutting off their hands and facilitating the spread of diseases like sleeping sickness. Curious readers should look at Adam Hochschild’s King Leopold’s Ghost.
Unfortunately, the time period following colonial rule was, in many ways, just as tumultuous. As authoritarian leader of the country from 1965 to 1999, Mobutu enforced an ideology of Authenticité, an Africanization that tried to eliminate every last vestige of colonial influence, terrorizing the Europeans who lived there and renaming nearly everything in the country—from cigarettes to gasoline—with the name Zaïre. One such change was that “citoyen” replaced monsieur and madame as the forms of address. Citoyen, which literally means “citizen” in French, was meant to convey that all citizens were equal and was mandated in Zaïre.
This all seemed only natural then when my book began taking shape as a kind of Heart of Darkness or Dracula for the age of AIDS. Except in my story, the “savages” weren’t the Africans, with dark bloody rituals and heads on pikes—or Eastern Europeans flooding Westward—but homosexuals living un-Christian, mysterious, sinful lives in the underbelly of the world’s great cities. In the United States: New York and San Francisco.
In my story, this seemed like a perfect entry point for the Dracula-inspired Dens, the personification of the disease, but even more than that, the personification of how the disease (and epidemics before it) have functioned in society: marginalizing groups of people on the basis of “immoral” or “unclean” behavior. Immigrants packed bed-to-bed, isolated on Blackwell’s Island, in the sordid first floor of the Smallpox Hospital are a reminder of the years when pathologists were burning their clothes after autopsies, hospitals were not admitting patients suffering from AIDS, and cemeteries refusing to bury them.
Roosevelt Island (also once known as Blackwell’s Island and Welfare Island) is an interesting case study in the treatment of people at the edges of society. At the end of the nineteenth and beginning of the twentieth centuries, it was home to a penitentiary, a lunatic asylum, a charity hospital, almshouses for the poor, and the Smallpox Hospital.
The poor were, just as Dens says in my novel, crammed in like sardines on the ground floor, while the wealthier patients were kept on the upper floors. With millions and millions of people on a few densely packed islands, New York City needed a place to fence in the sick, the crazy, and the criminal, and for $32,000, it found it. If the insane asylum hadn’t already been torn down at the time my novel takes place, it’s not hard to imagine a character like Lucy locked up there. At some point, the island was re-envisioned as Roosevelt Island—a place dedicated to helping the less fortunate, the sick, rather than containing them.
Where the history books were silent, I’ve taken artistic license. The Smallpox Hospital, still standing, is an unstable structure, fenced off, and monitored round the clock by the police. Signs around the property warn no trespassing. structure unstable. And the whole thing is currently held up by a skeleton of supports and scaffolding. Even if I’d been able to get inside, though, so much of the structure has collapsed and made way for weeds and wild flowers it’s difficult to imagine the people who once suffered and worked in it, or whether in 1976 Dens would have been able to set up shop there the way he does in my novel. Although a dumbwaiter could very well have functioned as a freight elevator in the hospital, I wasn’t able to determine whether one existed there. Nor was I able to determine how many staircases might have once been built or what material they would have been made of.
My cluster chart is a bit simplistic. I’m neither a graphic designer nor an epidemiologist. This is what the real thing might have looked like.
I’ve taken quite a bit of liberty with the weather. Though New York City got hit by a major blizzard in February of 1978 and upstate New York by another in 1977, snowfall, moon cycles, and thunderstorms in my novel are meant to convey atmosphere more than history. Hurricane Belle really did hit the Eastern Seaboard in 1976 but not hard enough to knock out Cape Cod the way it does in my novel. The flamethrowers were a fictional device, one that I’ve been told stretches the imagination, and most of the feminist protests against the Miss America Pageant occurred in 1968 and 1969, not 1976.
The Roosevelt Island Tram, which did begin operating in May 1976, was originally intended as a temporary mode of transport until a subway could replace it.
It became so popular, however, that it runs to this day, offering incredible views of the East River, Manhattan—from the Freedom Tower to the Chrysler Building—all for the price of a Metro Card. Finally, the blackout of 1977 was very much a historical event, and the headlines from the last chapter are real.
I take any and all blame for historical inaccuracies. I hope readers who lived through this era as adults will forgive my historical mistakes. I hope readers personally familiar with the DRC and historical Zaïre will likewise forgive my oversights and my very Western descriptions. I’ve tried my damnedest to correct them, but they’re there, I’m sure, in my blind spots. I do not intend to convey a single vision of Africa. It's difficult enough to write about a place you've never visited; it's even more difficult to write about a place that's been so misrepresented for hundreds of years. (See also "How to Write About Africa" by Binyavanga Wainaina and Chimamanda Ngozi Adichie's brilliant TED Talk, "The Danger of a Single Story.") The details I used are often gleaned from historic accounts and documentaries. While I do not wish to paint Zaïre as a dismal, primitive place to have lived in 1976, I understand that it was, in many ways, (and is even more now) a dismal place—thanks to Mobutu, the legacy of imperialism, and the ongoing wars playing out there between Rwanda and Uganda as the Western world plunders it for coltan (a material found inside your cell phone).
I don’t imagine that all of Africa is starving, but there were many very hungry people in Kinshasa in 1976 as the economy contracted dramatically. Writing them out of any story seemed to me just as untrue as creating a cartoon of them. That doesn’t mean I don’t see beauty in this part of the world or in its people. I’ve written about Zaïre through the thoughts of my characters. Their shortsightedness and fears are largely intentional, though in some cases a disguise for my inability to hop on an Air Zaïre flight back in time. I had many conversations with people more familiar with this part of the world than I, many discussions about when it’s appropriate (adjective) for a white American to appropriate (verb) or set a story in such a location, how a white man should write about people of color, and I often left those conversations with more questions than answers.
In the end, I am a storyteller more interested in trying to start a conversation rather than end one. I hope this book inspires a few.
For me, the questions, and conversations remain: Do kids remember epidemics the best?
I would say yes. As I was finishing this piece and this novel, I came across a great quote from Nick Cutter's recent book The Troop that seemed to be tailor-written for me.
Adults didn’t believe in old wives’ tales. You didn’t see adults stepping over sidewalk cracks out of the fear that they might somehow, some way, break their mothers’ backs. They didn’t wish on stars: not with the squinty-eyed fierceness of kids, anyway. You’ll never find an adult who believes that saying “Bloody Mary” three times in front of a mirror in a dark room will summon a dark, blood-hungry entity. Adults were scared of different things: their jobs, their mortgages, whether they hung out with the “right people,” whether they would die unloved. These were pallid compared to the fears of a child— leering clowns under the bed and slimy monsters capering beyond the basement’s light and faceless sucking horrors from beyond the stars. . . . . That’s what’s different about kids: they believe everything can happen, and fully expect it to.
After writing about this disease for four years, I would say that imagination, and the capacity for terror, makes an epidemic, and some of our strongest memories are carved out of terror. And how did HIV/AIDS shape my generation? I’m sure there’s some sort of postmodern answer in here about the complexity of the virus, about the way it disguised itself so well, the way it really had no identity in and of itself but rather just invited other infections in. But I think that's dangerous metaphorical territory we're best to avoid (please buy a copy of Illness as Metaphor and AIDS and its Metaphors by Susan Sontag if you haven't read it).
I would probably just say that it scared the shit out of us. It changed the way we thought about sex and, for many, the way we thought about our sexuality and our families. And when it wasn’t scaring us, I think, it brought out our courage, resourcefulness, compassion, and wisdom.
And isn’t that just what a bogeyman is meant to do?
(TOP PAGE IMAGE: The crowd assembled at Manhattan vigil in May 1983. Photo by LEE SNIDER / COURTESY OF NEW-YORK HISTORICAL MUSEUM & LIBRARY)