A couple years ago, the internet discovered the Japanese word tsundoku – the universal habit of collecting of so many books that there is little hope of ever reading them all. Like millions of others on Pinterest, I looked at the listing towers tucked around me and thought, same. There are stacks and piles in every room – on shelves, on counters, behind toilets. Our clutter is made up of our bursts of creative energy, pretty rocks, and books. There is one on a shelf upstairs that has been on my mind this week that has just cut to the front of the line – David France’s How to Survive a Plague.
As I have been researching past coronavirus pandemics (SARS in 2003 and MERS in 2012), my mind keeps wandering to other infectious disease outbreaks. Zika and Ebola are two of the more recent diseases to leave their mark on humankind – that we like to talk about. The havoc these diseases wreak on the human body is gruesome and for the most part, happens elsewhere. We sit safely in our homes, watching as other parts of the world deal with these emerging pathogens. It was not our mothers and sisters bleeding through old army cots to stain the earth; it was not our babies born with microcephaly. It was not our friends, our favorite waitresses, our pediatricians who were dying from just doing their jobs. It was not our nieces and nephews unable to prevent mosquitos from taking blood and leaving the virus. We watched as black skin bled and brown mothers cried, greedily eating up the images. It was proof that it wasn’t happening to us. They ate weird animals, bush meat, we said, as we sucked the ketchup from our quarter pounders off our fingers. No wonder they have crazy bugs, look at their garbage problems, we said, as we packed 13-gallon trash bags with plastic and wasted food.
And those were the diseases we cared about; the shock value of the footage of these ravaging viruses made us feel like infectious disease is a rarity. We felt safe. Even when Ebola made its way to American shores, we didn’t feel like it would affect us, it wouldn’t reach our families. And for the most part, it didn’t.
Most infectious disease transmissions never make a blip. There is no BREAKING NEWS ticker for cholera. Tuberculosis doesn’t ping on our radar. Swaths of people have the privilege to ignore the history of medicine, declining to vaccinate children from things like measles, so sure that the risks of adverse effects of the vaccine are so much worse than the disease itself. We blow off the flu vaccine as if 35.5 million people didn’t contract it in the 2018-2019 season, as if 34,200 people didn’t die from it.
We always think we are safe, that we won’t be touched by death’s ungloved hand. It’s always happening to someone else.
The AIDS epidemic changed things, for a while. Young men started dying of pneumonia in Los Angeles. The first case report made sure to include in the very first line that all five cases were “active homosexuals.” After publication in June 1981, reports began to come in from major metropolitan areas with similar men dying of the same pneumonia. You can read the very clean Sparknotes version here. The CDC (disclaimer: an organization I would LOVE to work for someday) wants a pat on the back for having guidelines established in 18 months for the “prevention of sexual, drug-related, and occupational transmission based on these early epidemiologic studies and before the cause of the new, unexplained illness was known.” By then, over 1100 people – mostly gay men – had contracted the mysterious illness, and over 500 people – including over 20 children – had died. Before the virus responsible was found and named, the illness became known as “gay cancer.” In the years that followed, nearly 800,000 people have died from AIDS, and more than 1.1 million are living with HIV. These numbers are for the United States alone. Globally, there have been 75 million people infected with HIV and 32 million AIDS-related deaths since the start of the epidemic.
AIDS hit home. The nightly news squawked about it, helping to spread false information, a trend that continues today. White families that lived in quiet suburban neighborhoods didn’t want to admit it. The government, which now glosses cleanly over its inaction, didn’t want to admit it.
A generation of young men were lost. Thousands of people who society didn’t care about – sex workers, people using IV drugs, and poor people – died. Others with no “moral failing” died as well; those who had received blood transfusions that carried the virus, or babies born to mothers who were unaware of their status. And beloved icons like Freddie Mercury died. Most died alone, and afraid.
And still it was not the government who stepped up. It was not treated as the public health crisis it was.
If you are still reading this, I implore you to go and read Vito Russo’s speech from 1988. He said it best:
“living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you’ve lost more of your friends, but nobody else notices. It isn’t happening to them. They’re walking the streets as though we weren’t living through some sort of nightmare. And only you can hear the screams of the people who are dying and their cries for help. No one else seems to be noticing.”
The situation today feels somwhat similar. Different, of course; only certain religious figures (including an advisor to the president) are blaming the gays this time, and it’s not just the unworthy who are dying. The coronavirus is reaching into homes across the world and leaving few families untouched in places like Italy and Spain. Only now, only the past ten days or so, has the majority of our country seemed to pick up on the fact that this is happening. All the talk about “flattening the curve” has given way to the grim realization that it will never be flat enough for our hospitals to not become overwhelmed and for our lives to go on as normal. There is no normal anymore; we will never return there.
People in hospitals are dying alone, afraid. Extreme measures must be taken to keep others from the same fate, but at heartbreaking cost. Families are separated; I’m hearing of paramedics sleeping in their cars, I’m seeing my coworkers send their family members away while they work in Covid units. Field hospitals are going up across the country, and across our county. The deaths of doctors, nurses, and case managers only a few hundred miles away are shake the voices of their steady-handed counterparts. Watching in horror at the events unfolding in New York City, we begin to gird ourselves for battlefield triage and for the trickle of patients to become a deluge. We cannot stop it.
The AIDS crisis took years to be taken seriously. The communities affected can never be made whole. For queer folk, healthcare has always been political. We need to remember our history and keep fighting to ensure something like that never happens again. When the surge fades, we need to keep acting, keep caring. There will be more waves; we need to make sure that no one gets left behind.
The coronavirus response has been delayed from the beginning, and we are still going to see unprecedented morbidity and mortality. But if there is any hope to be had, it is that we have learned from the AIDS epidemic that we are not safe from infectious diseases. They happen, not just elsewhere, but right here at home. If we don’t believe we are safe, maybe, just maybe, people will be willing to listen, and policies and behavior will change. How many HIV infections have been prevented since the advent of needle exchanges, condom use and availability, and PrEP? How many deaths prevented since blood has been screened for disease before transfusions (don’t get me started on the FDA restrictions right now)?
How many infections and deaths can be prevented if we keep washing our hands and keeping our distance?
We are not as safe as we want to think we are. This is happening here, to us, to everyone. We are not so special that we won’t be affected.
Stay the fuck home, friends.