‘We Are Still Sick, and We Are Ready to Act’ A Covid Community Struggles to Be Born.
We write from the strange world of coronavirus recovery. Relapse. Recuperation’s false dawns. We write from healing timelines wagged by long tails. A process that can feel raw, ridiculous, bewildering. Scary. Safe. Or not.
We write from this time when Covid-19 in the past tense does not yet apply and uprisings demand a reckoning with centuries of white supremacy, structures of anti-Black racism, and vectors of violence and inequity.
We – the Covid-19 infected – inhabit the upside-down space of getting better without a map. We occupy and probe our new reality almost always on our own. We do this as we are sick. We do this without universal healthcare. We do this with rent coming due. Past due. Not canceled. We do this as we are socially distanced from friends, families, and doctors. We do so in fear of the ventilator. We do so while mourning our dead. We do so while caring for someone else.
We self-monitor for symptoms. Often what we feel and what our bodies tell us are not marked on the official but changing symptoms list. We don’t have a fever. We can breathe, albeit worse than when we were healthy. Now our breathing is tight, partial, maybe with a rattle. If we have an inhaler we hit it. Again. We take a Tylenol and a nap. Another day survived, another day when we didn’t succumb to what we know can be so much worse.
With Covid-19 it seems that sometimes there is no easy past tense, only a long and frustrating lingering. This means living with the virus’s episodic and unsettling resurgence. Trust and optimism easily erode here. Confusion reigns in this dispiriting place and time of coronavirus recovering. Health feels unfinished, uncertain, incomplete.
In early March, Pato had a sore throat, sneezing, a cough with phlegm (not dry). At the time these were deemed signs that he was not infected. How little we knew. How much I would learn.
Soon sleep unfriended me, no matter how much NyQuil or melatonin I offered in seduction and supplication.
By April I stopped taking sleep aids because they made one part of me stumble toward collapse while my lungs clenched toward constriction. Late at night I’d be yanked between these extremes, needing desperately to sleep but unable to because my body anxiously wanted to breathe freely.
In the bed I developed elaborate positions on my side with head elevated on multiple pillows, spine extended straight toward my feet, a cushion between my knees, free arm propped on hip away from weighing on lungs, torso torqued toward the ceiling, all in the hopes of inviting an open passage of air. I was exhausted during the day, and I dreaded the night.
In spring my emotional watershed was also reconfigured. I cried more than ever, weeps into sobs into hiccups into hopelessness. Patience, compassion, empathy, and generosity feel harder to come by now – for self, toward others. I’m regularly frustrated yet too tired to be enraged.
There have been neurological logjams as well. Focus, motivation, and cognizance have all been adversely affected. Short-term memory can be a struggle, trying to summarize what happened last week or even last night. Thoughts slide off the road and into the Covid-19 fog.
Word recall gets jumbled, too. Once, in mid-June, I tried to order mapo tofu for my partner. It came out Maputo, the capital of Mozambique, where I was scheduled to contribute to a global HIV prevention summit in late March. That historic gathering of activists was canceled due to Covid-19. Sometimes it feels like my mental dexterity has been too.
This unevenness is distressing. Old symptoms come back to say “hi” again. These symptomatic spasms add to Covid-19’s emotional and psychic stress, its emergent and persistent scars.
Prior to getting sick, Alex never knew her lungs were loose, fleshy, supple, porous until they weren’t. For over two weeks, my lungs felt like they were made of Styrofoam or asbestos. Flinty. Tight. Rigid. I never know my lungs had depth until I couldn’t access them. I’d take a deep breath, and it just stopped half way, like there was an artificial cutoff point just under the line of my breasts. I felt no pain; I kept breathing in and out; I went about my daily life, reduced.
So mostly, I was riddled by bouts of paranoia, fear, and self-doubt. Was this, right now, a turn for the worse? Was my breathing different? The stress of these thoughts would produce the very symptom under intense self-scrutiny, leading to a spiral of panicked breathing that most people with Covid-19 also list as a shared and gruesome, debilitating symptom. This wounded place is where our experiences align with but also differ from those who have been very ill. And the anxiety is shared with those who are hoping to never catch the coronavirus. We must all contend with the virus.
But here’s one surefire way to close down any possible connection:
“You’re still sick?”
We are still sick. Maybe better for now. Or perhaps feeling worse today. What helps in this state of ongoing recovering is your love and support, the soothing balm of mutual care. Regular, healthy meals. The oximeter. Cloth masks. Herbal tea. Tinctures. Ginger remedies. Fresh vegetables. Dried mushrooms and herbs for soup. Special biscuits. Chocolates. Recipes. Handwritten cards. Stickers. Texts, DMs, and emails (but without any pressure to respond). Forwards. Resources. Links. Video serenades. Video sillies. Video caresses. Essential oils. Tarot readings. Poems. Drawings. Zines. Money. Voice memos. Offerings of tenderness, encouragement, guidance, reassurance. Invitations to connect, to someday come and stay, to convalesce, recharge, replenish, prosper, play.
We are both longtime AIDS activists, artists, and organizers. It was early AIDS activism that produced and then refined the rubrics, community, and analysis through which HIV disclosure was understood as political, strategically useful, and supported.
Yet it seems that in this still-nascent stage of the Covid-19 crisis, many people infected are not disclosing. They worry about worrying others. They worry about being shunned and further isolated. They worry about stigma. They fear losing their already tenuous jobs. Or not finding a new one. Still other folks are unable or afraid to test. For some, transportation is unreliable or altogether unavailable. Some fear surveillance around immigration status. Many are overwhelmed by the waves of questions, scrutiny, and criticism that might come their way. And while some among us are diagnosed with Covid-19, others are not, while others are misdiagnosed, and then it’s not even clear what a diagnosis might mean.
All of this is turbocharged by the raging pandemics of poverty and racism. Covid-19 is disproportionately impacting Black, Indigenous, and Latinx communities. Pato and compañerxs have come to call it livin’ la COVIDa loca.
We must learn to speak, represent, and connect by first finding one another, even as we don’t yet fully understand our illness or recovery, or perhaps because we can’t yet know. As more people who are infected with the coronavirus are comparing experiences, gathering in online support groups, exchanging insights and sharing resources, speaking out, could this be the start of what Covid-19 communities look like?
Might this social medicine be a key ingredient for our recovering? “Are we still sick?” can be more than a wobbly, worried question. It must also be a disclosure of awareness. A declaration of love and action. A shared invitation to be well. We are still sick, and we are ready to act.
Pato (Patrick) Hebert is an artist, teacher, and organizer. He is chair of the Department of Art and Public Policy at Tisch School of the Arts, New York University.
Dr. Alexandra Juhasz is distinguished professor of film at Brooklyn College. Her new book, written with Ted Kerr, We Are Having This Conversation Now: The Times of AIDS Cultural Production, will be published by Duke University Press in 2021.
Photos by: Pato Hebert.
This Urban Matters is excerpted, with permission of the authors, from a longer article that originally appeared in the Summer 2020 issue of the quarterly BOMB Magazine, which has also granted permission for this republication. Further work by the authors is to appear in the journal Critical Inquiry.