My Year of Rest and Relaxation

It's been a year since I contracted COVID-19 and developed Long COVID. I've had to face my worst fears, but I'm still here.

Before I ever contracted SARS-COV-2, I had already learned all I could about COVID and Long COVID. I spent my days scouring the internet for new research papers, googling scientific words I didn’t know, and listening to the stories of patients who’d been sick for a year, then two years, then three. I launched this site in late 2022, a year before my first infection, because I was angry. I was already very angry, then. And I remember telling my friends how badly I felt for those who’d been disabled by the states’ lies, by its negligence. “I’m mad now,” I’d say, laughing though it wasn’t funny, “I can’t even imagine how mad I’d be if I had Long COVID.”

I remember reading about The Physics Girl, Dianna Cowern, who contracted COVID shortly after her beautiful, dreamy wedding in summer 2022 and went on to develop severe ME. Years later, she is still bedbound. At the time, it scared me the way she struggled to recover following her infection, then went downhill months later. That ended up happening to me, too.

I read so many similar stories of people who “fell by the wayside,” people with far less support than Dianna. People who lost their jobs, could no longer pay their bills, fell into homelessness. People whose relationships fell apart, whose families refused to mask and reinfected them. People who’d thought themselves entirely financially set, but who found out that $30,000 or $50,000 or even $100,000 or more in savings quickly becomes $0 when your income is $0 and your prospects are 0 and your ability to get out of bed, year after year, is 0. Other people who didn’t have a dime to begin with and couldn’t miss a shift and, because of that, pushed themselves from mild to moderate or moderate to severe.

Long COVID is scary, cruel, painful, upsetting and stressful.

We’re dealing with an illness that we don’t fully understand, but it’s not only us, the patients, who don’t understand it. Our doctors don’t either. If we’re lucky, we have doctors who admit this, are curious, and are interested in learning more. If we’re unlucky- and we’re Long COVID patients, what are we if not unlucky- our doctors are arrogant, stubborn, and mean, fobbing us off with useless or actively harmful instructions about getting more exercise.

Since developing Long COVID, I’ve had four different doctors try to send me to physical therapy. A reminder that the top hypotheses for the pathogenesis for Long COVID are viral persistence, immune dysregulation, and neurological damage. Multiple studies have found mitochondrial damage in muscles following physical activity in Long COVID patients with PEM, which half of us- including me- have.

Strange symptoms turn our bodies into upside-down, inside-out versions of the ones we’ve come to know. Exercise makes us sick? Movement makes us worse? It’s so unintuitive, it’s easy to push too hard and injure ourselves again and again and again. For many of us, it takes becoming homebound or even bedbound to finally understand the signals our bodies are sending us. For me, it’s still confusing. How do I know how to stay in my “energy envelope”? In September, I felt better, and made a few short forays out of the apartment. However, I then crashed again throughout all of October and November. Should I not have done more activity? Or was it random?

That’s another aspect of Long COVID: the uncertainty. Will this go on forever? For every patient who went into spontaneous remission, there’s another who’s been bedbound for four years. And what about the possibility of persistence? What is the virus potentially…. doing in there? Are we sustaining silent organ damage? My doctor noted that I have elevated liver damage markers, so I now have to get a liver ultrasound. I’m not too worried about the current state of my liver- the markers are only slightly elevated- but I am worried about the long-term. Will the virus continue to damage my liver? What about my other organs, my kidneys, my heart?

Along with the disease being straight-up bizarre, it’s undeniably miserable.

Experiences and symptoms are as various as the cell types SARS-COV-2 invades and the organs it likes to feast on. I imagine the virus ordering up combinations of our components the way I’d check off rolls on a sushi menu. Me, I’ve got fatigue, PEM, POTS, and the delicacy known as recurrent, intractable migraines. In all my reading about Long COVID, I had actually never heard much about migraines as a symptom. A bit of a wild card, although now I’m well aware that COVID can both bring on and worsen migraine disorders. I also wasn’t aware how difficult migraine disorders can be to treat and control.

I currently take Topomax for prevention (affectionately nicknamed Dope-o-max by its fans and detractors for its major side effect, a sense of feeling “doped up”), Ubrelvy as an abortive, and Propranolol, a beta blocker, which helps control my absolutely bonkers heart rate and also doubles as a migraine preventative. I still get migraines.

I also take Magnesium, every supplement that has ever been recommended for Long COVID, drink water like crazy, have a cold cap, and recently begged my parents for the FDA-approved trigeminal-nerve-targeting Cefaly device as my Christmas gift this year (they obliged). All I want for Christmas is migraine relief, truly.

We’re living with a virus no one fully understands, grappling with strange symptoms and, oh yeah, feeling like shit, and on top of that, we still have to exist in the same capitalist hellscape that disabled us (or further disabled us) in the first place. Just because we’re now sick doesn’t mean we’re excused from paying bills! I haven’t been able to work full time since January, which has meant a constant added layer of stress and anxiety. I’m well aware that I’m luckier than most; I had savings, I had this Substack as a side-hustle, I was even fortunate enough to receive a grant for The Gauntlet this year.

But through it all, I’ve remained conscious that my life savings are running dry, while the money from the newsletter remains a fraction of what I formerly made as a full-time consultant in progressive politics. There are weeks when I’m too sick to work; inevitably I lose subscribers, and inevitably I panic about when I’ll be able to write again. I don’t want to imagine what would have happened if I hadn’t already been writing about COVID when I got sick; my network, my audience, my disability justice education, the way I’d already constructed a COVID-safe life; all of it has been critical to my survival for the past year.

On top of it all, Long COVID patients have to worry, constantly, about reinfection. Prior to getting sick, I simply avoided healthcare like the plague (ha). Now, ironically, I’m forced to continue to return to doctor’s offices and hospitals, where unmasked healthcare workers and sick people do their best to test the limits of my N95 at every appointment.

Before the pandemic, I thought of myself as having hundreds of friends. I travelled, I bartended, I worked on campaigns; it came easy to me. I spent most nights socializing; I was rarely home. Nowadays, I have just a small circle of trusted friends, all of whom mask in indoor public spaces, but most of whom aren’t quite as safe as I am. We keep tabs on each other’s risk factors; who saw their in-laws, who had to go to a big family event, who flew, who unmasked for a big work presentation, who saw friends who don’t mask. How many days ago. We test. We track wastewater. It’s tiring. I don’t know what will happen to me if I get COVID again. I know it will not be good.

I’m no longer well enough to leave home much, so, in a strange way, one Long COVID accessibility issue (being homebound) is cancelling out another Long COVID accessibility need (requiring masks). I guess it’s a convenient out for all the so-called inclusive groups that never bothered to make their spaces safe for us. We’re too sick to participate, too sick to protest, too sick to object, too sick to demand our seat at the table. Why demand a seat for someone too sick to sit up? Some of the same people who proudly defend the inaccessibility of their spaces mock us for being trapped at home, then turn around and call themselves socialists. It depresses me.

It’s a vicious cycle; people attend unsafe events. They become disabled with Long COVID. They’re too sick to attend events. They’re too sick to demand safety and accessibility. Events remain unsafe. More people are infected and disabled. More people drop out of public life.

My home has become my world. I live in a one-bedroom apartment, and I spend 99.9% of my time here now. My calico cat, Beatrice, is a fan of the arrangement. At one point I turn to Reddit to ascertain whether I would be considered “homebound”. After all, I can leave home, to go to doctors’ appointments, when I have to; it’s just that I require someone to drive me and also I need to be wheeled to the office and also I need to lie down in the office and also I crash for days afterwards. I’m shocked when I discover that some of the fellow Long COVID-ers online consider me, not only homebound, but even bedbound. Well I’m not bedbound, I reason, I spend most of the day on the couch.

Along with spending 99% of my time at home, I do now spend 99% of my time horizontal. On very good days, I can sit up for an hour or two while I write. Very, very good days, like today. But a typical day for me involves exchanging bed horizontal (nighttime) with couch horizontal (daytime). This is the big activity that marks the passing of time. The worst days are those without couch visits. When my fatigue and migraines are too severe for me to make it to the living room, that’s when the reality of the situation gets to me. When I’m not well enough to even watch TV or listen to audio books or podcasts, but simply have to lay with my eye mask on, I often do nothing but cry.

It’s a reminder that art- books, movies, podcasts, and TV shows- is lifesaving. Because on days when I’m just a tiny bit better, even just laughing at an old episode of 30 Rock is enough to remind me that it is good, in fact, to be alive. And on days when I’m able to read, I no longer feel confined by my one-bedroom apartment, but free, commiserating with my chronically ill comrades, Kafka and Proust. How can I feel confined when Proust, too, was bedbound by the end of his life? When he used his years at home to write In Search of Lost Time? Could anyone argue that his life became small?

It’s strange to reflect on the years before my infection, on how I feared and expected this very outcome. How did I know this would happen to me? It’s less spooky when I remember I had underlying conditions that made me high-risk. It’s spookier again when I recall that I didn’t, at the time, know that EDS and POTS were risk factors for Long COVID. But I think it all falls under the broad umbrella of Disabled Wisdom. I’d spent my entire life learning not to be arrogant about health. I’d learned, many times, that my body would fail me, that it couldn’t “push through” and that working it harder wouldn’t produce the results others achieved with punishment or even discipline.

Disabled people tend to know that health is not earned, nor irrevocable, that it is fragile, that it is temporary. From the beginning, I respected COVID-19 because I knew my body was no different from the bodies of the dead being thrown in mass graves in Italy, or the bodies in trucks stacked and frozen in Manhattan, or the bodies struggling to breathe in Wuhan, recorded on someone’s cell phone, smuggled out as an act of solidarity, of kindness, of warning, of love. My body, just a body, full of blood and ACE-2 receptors, full of endothelial lining and mitochondria, just like everyone else’s. My body, worth protecting, though the US government didn’t think so, though the CDC didn’t think so, though people I once called friends didn’t think so.

While abled people scoffed and continually listed the ways they differed from the dead, I never felt the need to do this. I still don’t. I simply mourn them. I think most disabled people do.

Before I got sick, I used to wonder how people could spend weeks, months, and years, in their homes, in their apartments, in their beds. Now I know. They just…. do. A day goes by. Another. Before you know it 2023 has become 2024 and you’re staring down the barrel of 2025. You spend a year in your bed because the alternative is dropping dead. And you want to live. On your couch, in your bed, with your cat, with your books, with your dear friends and your writing and your tears and your laughter and the new episodes of What We Do in the Shadows and delivery from your favorite Chinese restaurant. You see a sweater you like, but you don’t buy it because you’re out of money and anyway, you have nowhere to wear it. You buy yourself flowers. yellow roses, even though you’re out of money, because they make winter more bearable.

You spend $8 on Korean skincare masks because they leave your skin softer.

You sit up when you’re well enough, and it feels like a victory.

You pet Beatrice, your calico cat, and you think about how happy she is that you never leave home. She purrs, loudly. You smile.

You read The Voyage Out, by Virginia Woolf, and two nights ago you felt so well you accidentally stayed up past midnight reading, not noticing the hours tick by. You write The Gauntlet, and when people share your articles and say your work means something, you realize you care more about this job than any job you’ve ever had in your life. You realize you’re a writer now, accidentally, on purpose, the thing you dreamed of being from the time you were six years old, when you carried around a little book and pencil to write stories for your proud parents. You realize that yes, you’re living your worst nightmare, and also, somehow, suddenly, you’re living your wildest dream.

I guess life is funny like that.

It’s been a year since I caught SARS-COV-2 and developed Long COVID. A year of fatigue and migraines, and of lying down and crying. A year of questions without answers and symptoms without explanation. But it was also a year of being supported and sustained and saved by community. Everything I know about this disease, I know because patients and researchers taught me. Every good day I have, is because others before me shared. And although I miss the security I once had, I’m glad to be making my way as a writer now.

I know how people survive for years in their apartments, in their beds now. They just do. With art, with love, with books, with cats, with flowers, with joy. With friends. With comrades. With networks of care. And I will too.