In the summer of 2016, I had my cancerous tits cut off and began six rounds of chemo to catch any stray illness my body might still be secretly housing. Because chemotherapy works by killing perfectly good white blood cells along with the cancerous ones, the chance of getting seriously sick from a typically mild virus skyrockets. To combat this, my doctor prescribed a self-injected white blood cell booster called Neulasta, with the warning that it “might cause a little bone pain.” What it caused was 12 hours of torment I’ve yet to recover from and still cannot adequately describe. Every bone in my body felt as if it contained a lit match, and the fire pulsed outward, biting at the inside of skin that seemed seconds away from bursting open. Simultaneously, my ribs felt as if they had collapsed inward to squeeze my lungs so that I was no longer doing what I would define as “breathing” as much as I was letting breath escape in short rattles. My legs stopped working on my way from the couch to the bed, so I crawled for several minutes before giving up and lying spread eagle in the hallway, whispering “please” to no one as my dog whimpered in sympathy beside me. I’m crying now, four years later, from the remembering required of my attempt to explain.
When I told my doctor about what she labeled “some pain,” the suggestion was to take a Benadryl with the next injection. Instead, I decided to stay inside for the next two months of chemotherapy in self-quarantine, watching the world through my window and finding the solitude both terrifying and lovely.
Right now, the U.S. government is asking people to self-quarantine if they pose a risk of infecting others but haven’t tested positive for coronavirus. A self-quarantine isn’t anything like the pure isolation of medical quarantine, attended by suited professionals and often leaving sick people isolated in small, solitary rooms. Self-quarantine means sticking out what the Centers for Disease Control says is a 14-day incubation period within one’s own home and limiting contact with the outside world. This incubation period is a game of wait-and-see, where the prize is nothing happening.
But the waiting plays tricks, creating a fine line between sickness and imaginary malaise, during which a sneeze becomes mors vibrabit, and a toothache sets one googling how to smuggle ashes on an airplane and texting friends tips for clandestinely spreading human remains in the Gardens of Versailles.
Dying in the head before the body catches up isn’t a new notion. Fifteenth-century plague treatises warned that the Black Death started in the mind, long before it started in the body: “Simply thinking about the plague makes one infected,” one such treatise read.
But dead-bolted inside 900 square feet of my Brooklyn apartment, there wasn’t much to do but stand in front of a mirror, swallowing the light from my cellphone and inspecting my throat for redness, or periodically testing out a little cough to see if it sounded wet enough to call someone. My father hates hypochondriacs, and when I was a child, he often instructed me to “stop that fake coughing,” leaving me always unsure of which illnesses were real and which were performed, never quite knowing where the line was between wanting attention and requiring it. But during my self-quarantine, I was sick: I had cancer, and real medical doctors wanted frequent reports of any sign of illness, which they promised to sort as real or imagined on my behalf.
In 1636, the Privy Council issued orders concerning a plague outbreak to the mayor and alderman of London: “the Master of euery house, assoone as any one in his house complaineth, either of Botch, or Purple, or Swelling . . . shall giue knowledge thereof to the Examiner of health within two houres after the said signe shall appeare.”
One day I found a red bump on the inside of my arm. It itched a little and burned some. I’ve had shingles before, down my spine when I was 10, and thought I remembered the sensation. “I think I might have shingles?” I emailed my doctor. “Come in immediately,” she replied. In her office, I proudly presented my infection to my oncologist’s physician’s assistant, a dime-sized carbuncle filled with yellow-ish goo. She said it didn’t look like shingles, but came back with a prescription for Valtrex after my oncologist told her to just give me what I asked for.
That night, the sore had grown and was wet at the edges. I had taken to sleeping on the couch with the TV playing softly in the background and woke to find a fat brown spider crawling across my pajamas, dropped down from a wooden pallet I’d made my partner bring in off the street so that I could hang some sets of deer antlers wrapped in artificial flowers to brighten up the apartment. The physician’s assistant laughed with me when I showed her the pictures I’d taken of the pallet and the giant, pus-brimming sore at my next chemo appointment a week later. “I’m so stupid,” I told her as we joked about it. I did not tell her that I had also been stupid and bored enough to sterilize a safety pin with a lighter and stab it, probably posing much more risk to my immune system than the spider bite ever had.
A few weeks later, my shingles scars burned, and I could feel the ghosts of the old bumps looking to resurrect themselves now that my defenses were down. Or at least I thought I could. Once again, I kept this information to myself and just took the Valtrex as directed, too embarrassed by the false alarm of the spider bite to cry that particular version of wolf a second time.
To combat the Black Death in the mind even as they had no cure for the Black Death in the body, medieval physicians often recommended staying cheerful, even in times of mysterious pestilence. From the Compendium de epidemia of the Faculty of Medicine of the University of Paris (1348): “Since bodily infirmity is sometimes related to the accidents of the soul, one should avoid anger, excessive sadness, and anxiety. Be of good hope and resolute mind: make peace with God, for death will be less fearsome as a result. Live in joy and gladness as much as possible, for although joy may sometimes moisten the body, it nevertheless comforts both spirit and heart.”
Baking is a cheerful activity that can kill hours, even weeks, of seclusion. There’s also a deus ex machina element to it, something gratitude-inspiring that has to do with watching yeast using its death knell to rise flour. I frequently gave thanks to the single-celled microorganisms I killed daily, the oven when the hot-cross bun or dampfnudle turned out alright, and maybe just to the idea of a time-consuming ritual that yields something sweet and soft. There’s a reason bread comes second on the list of things to be thankful for in the Lord’s Prayer, right after living another day.
Loneliness, of course, comes with the circumscribed territory of self-quarantine. Those playing wait-and-see with coronavirus most likely won’t receive many visitors. During plague years, visiting a house under quarantine was punished by locking the visitor inside, which most likely curbed the practice. Even in the 20th century, as recently as the 1930s, those confined to a Louisiana leprosarium called Carville, on the banks of the Mississippi outside Baton Rouge, said they were only allowed to leave the grounds twice a year or so.
Within the walls, patients waited all year for Mardi Gras, that annual Louisiana celebration of decadence before deprivation. The Carville lepers had their own ball in captivity, dressing in costumes to parade around the grounds, watching each other pretend to be people moving about freely in the outside world.
“I decided I would masquerade as Mae West,” one resident said of the Carville Mardi Gras. “I wrote to my sister Myrtie in Texas and she helped me get the necessary paraphernalia together. My sister made the dress and bought me a wig and all the accessories I needed to get my act together.”
Sometimes, in the bathroom, I also often got my act together by taking out my makeup and pretending to be other people. I took the fact that the poison in me had rendered my body completely hairless as an opportunity to draw dark dashes across my now-vacant brow ridge and a weensie little Clara Bow pout over lips I erased with concealer. Sometimes I rubbed spirit gum over my hairless face and pressed on craft glitter, admiring the glint off my stark cheekbones in selfies I deleted as soon as I took them. I always washed my face before my partner came home; these performances seemed silly if there was another body in the vicinity.
Of the Carville Mardi Gras, folklorist Marcia Gaudet says the “opportunity to engage in normative behavior,” is critical for those labeled “abnormal.” Perhaps that’s why during my self-quarantine I sat in a recliner by the window for hours every day, the thermometer’s ping keeping the only time that mattered, and watched Gates Avenue between Bedford and Nostrand in Bedford-Stuyvesant, Brooklyn as if it were a parade intended purely for me. In the brownstone across the street, one half of a couple may have been having an affair, or at least they had a lot of fights on their stoop about the possibility. Another time, I had a mystery infection that made my teeth and gums throb so badly that eating soup required a Percocet, and I was up with a temperature of 101 at 4 a.m., compulsively testing because 102 was the danger zone. Young people in party clothes spilled out of a different brownstone, two upright bodies clutching a collapsed one between them.
“Call an ambulance,” I mouthed to my closed window. Minutes later, the ambulance arrived and the limp body disappeared inside. A half an hour after that, the body emerged, walking now and drinking water, like a magician’s trick. But even when it wasn’t dramatic, the parade was always engaging: people walked cute dogs, kids played in an open hydrant, an old woman yelled at skateboarders and I cheered her from my chair. The couple in the brownstone that fought on the curb always eventually went back inside, having decided to live together another day.
There were all sorts of things I meant to do while I was in self-quarantine: write another novel, read up on writing a screenplay, use the expensive set of oil paints and half dozen canvases I ordered once in the middle of the night from Amazon, finally get around to the two dozen books languishing on the bookshelf, spines uncracked. But mostly I just baked and watched the street and occasionally put on makeup I washed off a few minutes later. The bookend dates of my first and last chemo seemed endless in both directions as I whiled away the time between, certain that I’d always be trapped, and therefore I’d eventually buckle down and do something productive. But the last chemo came, and all I had to show for my time on the inside was knowledge of the exact ratios of flour to moisture to yeast for basic bread dough and a general idea of what I might have looked like as a flapper.
Anthropologist Victor Turner calls carnival “the denizen of a place that is no place, and a time that is no time.” In my 2016 quarantine apartment, I rarely bothered with lights and my chemo sweats meant that the window units were always full-blast. On the occasions I went outside, the summer heat felt strange, the sun more aggressive than I remembered. Indoors, I’d forgotten that seasons changed whether I felt them changing or not. Likewise, it seems odd to be writing about my two months at home from four years later because that time doesn’t seem like the past. The summer of self-quarantine doesn’t feel like a time at all, but a place I visited once—dark, yes, but also oddly lovely, cool, and quiet.