The first quarantine happened when I was fifteen and my white blood cells were raging in my brain. Autoimmune Encephalitis— abrupt and unrelenting madness caused by a finicky immune system and a leaky blood brain barrier. The world kept moving, and I was alone. This second quarantine happens when I’m twenty-one; a pandemic is raging outside, but my white blood cells have settled for three years. The world stopped moving, and I am alone.
I’ve spent the past two months reliving that first quarantine, but I don’t remember much. I remember my feet. They were always cold, always bare, always purple. I don’t know why I refused to wear socks, but I let my feet get so cold that they didn’t seem to belong to my body. I remember the taste of room temperature Arizona Green Tea that my father would bring home to me every night and how I eventually forwent a glass to drink it right out of the gallon container. I threw a half-full one at my bedroom wall, the sugar leaving a residue on the teal paint. I never cleaned it up.
Two weeks into high school, my neurologist ordered me to be quarantined. I accepted it immediately. I took life as it was and didn’t make a fuss. A life where I didn’t get sick didn’t exist, a life where I wouldn’t be sick was unimaginable. To feel any way about it was akin to trying to move a ghost limb.
I seldom got dressed. A pair of sweatpants passed down from my mother to my sister found their way to me, and I wore them each day until the fabric pilled and thinned, and then I wore them with the holes because no one was around to see them. Now I’m good at getting dressed. I’ve taken to wearing a pair of denim shorts that have gotten so loose they feel like pajamas. I follow a rule of not wearing the same shirt twice in a row. During the first quarantine, I gorged on food so much that I gained fifty pounds. I remember peanut butter sandwiches getting stuck in my gums. Now I feel shame when I creep into the kitchen at night to eat pineapple out of the can.
On the news, a reporter says they’re going to start trying pheresis on sick patients. It’s the same treatment I underwent— the draining of the blood in a car-sized machine, the purifying of the blood, the return. I change the channel. I watch Contagion again, as everyone seems to be doing. Encephalitis kills Gwyneth Paltrow. I turn it off. I play a childhood video game. The virtual cherry blossom trees make me think about the two in the front yard in my childhood home, and I consider how I would stare at them through my bedroom window. Did I long to go outside? Have I forgotten that? Or am I right, in which case I wouldn’t have stared, I would’ve glanced? I remember the terror that nestled itself beneath my skin, in the groove of my neck, in a tremor of my hands. I wasn’t ever able to fully get rid of that. My friend tells me over the phone that experts are predicting many will develop agoraphobia after this pandemic, that he could see himself being one of them. Another friend asks me why I haven’t been going on walks. I say that I have that thing about making my day better. He laughs, oh yeah, you do have that.
My head begins to hurt, and my eyes begin to well, so I bury my head in a pillow and imagine I am floating in nothing. This refusal to look, to allow myself to acknowledge the present moment, feels treacherous. I retreat to a place of oblivion where my emotions do not much exist. My mother comments that I’ve developed a constant shiver.
I made one friend during my first quarantine, a boy who had just attempted suicide. We went to middle school together, but all I had known him for were his sweater vests and the time he got off a bus home to comfort a girl crying on the school steps. I remember leaving dinner with my family early to sit in the restaurant parking lot under a neon sign to text him. How much kinder he was than me. His name was Ethan.
At that same time, my bedroom was a war zone. The encephalitis raged that summer, and I ravaged my bedroom— screaming, breaking everything I could touch until my father held my body against the ground. I slept on a blow-up mattress in my mother’s room for months. Even when the fire went out in my brain, I couldn’t control myself once I stepped beyond the doorway. I’d feel everything until I felt nothing.
I figured if friends were in my bedroom with me, I would have to radiate sanity in the den of a madwoman. I invited Ethan and two others, never once considering how disturbing it could’ve been for any of them. I don’t know if I ever thanked them for it. We sat in my bedroom, and we picked up the magazine cutouts littered on the floor, the torn up clothing, the broken piggy bank collection, counted the coins. Ethan sat on my bed. I was sharp, crass. My laugh was too loud. My hands shook. I remember looking up at his face. I was taken aback. I could see he saw through me. I was fourteen then, and for the first time, I encountered what it was to be so intimately known.
What I remember most about him is how he stared into his own condition. He never seemed to stop writing, painting, acting. I had quickly given up on my own life, from how I spent my mornings, to how I saw myself and others. He seemed to always be struggling, fighting, clinging to hope in anyway he could. As the year progressed, I began to hate him for it. I hated how he hadn’t been hardened, how it highlighted my own anger.
The night before was a windstorm. My mother and I can see branches littering the ground from fogged up windows. It rained too— there’s a puddle the size of a small pond in our neighbor’s yard. Neither of us heard the downpour. On TV a house is in flames, engulfed. Suspicions that the teen daughter must’ve done it; she had set her own hair on fire a few months prior. My mother talks about the house engulfed in flames a few doors down, back when I was five. My mother and sister went to watch the fire that could be seen for miles, but I sat in front of the TV, shook my head, said “I don’t want to look.” I wonder whether I was born with this proclivity to look away.
That night I can’t sleep. I imagine going out on my front porch and just sitting there, like how I would sneak out onto the roof as a kid just to sit, just because I could, just because it seemed better to me than sitting in my room. I still remember those nights— the skipped heartbeat when a neighbor would walk by, the soot perpetually clinging to my comforter, my thighs. I think about going outside in the middle of the night and listening for the fisher cats or the passing cars, but my chest seizes, and I lie back down in bed and try to will myself to stop longing for that. Why can’t I just go out on the porch? Why did I stop going out on the roof once I got sick again? Why do these small differences matter so much to me? I try to make myself consider drinking my morning cup of coffee outside. To consider anything more feels dangerous.
A month into quarantine, I stumble upon an article about COVID-19 and its neurological symptoms. I open it. The virus caused encephalitis in a third of hospitalized patients in Wuhan. I open another article. They’ve done spinal taps— it seems to be autoimmune. I open another article. A list of symptoms, nearly identical to what I’ve experienced for most of my life. I get up from the couch and leave my mother with no announcement. I walk to the bathroom, and I close the door. I get onto my hands and knees. I sob, my forehead against the linoleum.
After that, I stop getting out of bed, turning on the lights, changing my clothes. I hold off on plans to sign an apartment for the fall. I cry thinking about getting sick, I cry about losing more time. My therapist begins referring to things as a matter of life and death. She says I am not living in the same pandemic as my friends. She says I am in a state of survival. I cry some more because I do not want it to be true. I cannot accept it. I’ve forgotten how to treat it as a ghost limb. I begin to fear I will learn how to once again.
A few months after my first quarantine ended, I was in a month-long rehabilitation program in Minnesota. My psychiatrist had pulled my mother aside, told her I needed help. I had accepted my life as it was, and I didn’t see for myself a future.
I was there when Ethan reached out to me for a final time. He had tried to maintain contact between the two of us, but for months I had shut him out. He still texted me frequently, checking in. I never responded. I don’t remember what our relationship would’ve been for him to persevere like that. Or if he was just that kind.
That final time, he had said he didn’t know who else to talk to. He was in distress. His last text to me was Tess, please. I rolled my eyes. I didn’t respond. Four months later, he committed suicide. He was fifteen.
Illness is supposed to make you kinder. But it left me with a cruelty that I am still trying to reconcile. That year of isolation, the months of isolation that recurred after, have never really left me. I often still assume that I am on my own. At my worst, I believe everyone, like I believed of Ethan, needs to get by on their own.
I spoke to my high school therapist about Ethan only a couple of times. I remember one day, when I was sixteen or seventeen, she had handed me a tissue box. I held it like a mother with a newborn or a child with a babydoll. I said something about how I cannot seem to look away from the cruelty I displayed to him. “You were in a state of survival, Tess,” she said.
“But he had been too.”
The terror that hung from my shoulders was replaced by a damning guilt. I believed that I survived because I was cruel. I turned away from my own suffering, and by doing so, turned away from the suffering of others. Ethan’s longing for life, his kindness, did not save him. There’s no way to know if my own cruelty saved me. But the older I get, the less I want to believe so.
A friend of mine and I text each other about how the world is going through something so unprecedented, yet we are slipping back into the deeply familiar— the isolation, the uncertainty, the boredom of illness. How we feel like we’re losing something we’ve gained in these past few years of better health. How painful it is to see our peers go through what we did, only they’re not alone, the world has stopped with them, they haven’t been left behind. How we long to be living the same pandemic they are.
As I live closely beside my fifteen-year-old-self, I am trying to not let myself go cold. I try to feel the pain I didn’t when I was fifteen so I can also feel the hope that I didn’t when I was fifteen.
There’s no written record of what I felt. I didn’t want to remember what was going on. To write it down, to try to make a single day better, was an admittance of it happening. I’m better at writing now. I tend to write late at night, after my mother has gone to bed, after the day spent watching TV with her while she paints or chain smokes has ended— a day of repression, a day of ignoring, a day of retreat. A week ago I wrote:
I’ve been largely unable to do work, largely unable to write, think, feel. I’m so afraid of having another few months that feel outside of time that I barely remember, but there’s not much I can do about it.
I’m trying to accept the idea of everything I’ve built these past few years going away. I’m trying to gather the power for a relapse, for it to all happen again. To lose myself again. I don’t know if I can muster it.
Maybe I’ll drink coffee on the porch tomorrow.
It’s a sunny day, and despite the spasming of my chest I get out of bed. I go upstairs to the linen closet and pick out a red fleece blanket and one of my great grandmother’s gardening hats stored on the bottom shelf. I put my speaker in a tote bag, fill my water bottle, announce to my mother I am going outside to read. I put on shoes, no socks, and walk out past the barn, into the field that used to be farmland. I find the sunniest spot and lie down on the blanket, playing music softly from the speaker, not loud enough to block anything out but loud enough to hum along with. I watch a bird stand before a dried up thicket, and I hear an elderly neighbor woodwork.
I wonder whether I am doing enough for my friends who have never been isolated in their homes before, who don’t know how to get through it. I wonder what I would tell them. I remember the relapses in the rest of my high school years, sitting at home alone, just waiting for the day to end. I wonder about what I lost in the process.
I place my hand on my chest, and I breathe until my heartbeat begins to slow. I close my eyes, and I see pink. I let myself take solace under the sunny day. Away from my home, in this field by myself where once again I feel like I am floating in my own world, I allow myself to cry a little. I step out of retreat and let cruelty slip away from me for a second. I open my eyes to this boundless blue, and I let myself feel that I am here.
Image: “Looking Out the Window” by Chris Clogg, licensed under CC 2.0.