June 5, 2022

Weird Covid

I tested positive for Covid on January 20, 2021. This was before vaccines were available beyond healthcare workers and the very elderly, at a time when all you could do was hope you didn’t need medical care, and right at the highpoint of Mexico City’s scariest surge. My WhatsApp was full of people desperately seeking oxygen for their critically ill family members, people were dying outside of packed hospitals, and seemingly everyone in my apartment complex was sick. A few weeks earlier, my husband and I had watched our neighbor’s corpse being carried out of her apartment in a body bag. Now many people were struggling to climb the stairs, dragging oxygen tanks behind them. And then my husband got a fever.

We both tested positive via PCR1, and he could barely get out of bed for weeks. Meanwhile, I felt fine—fine in terms of Covid symptoms at least. I didn’t have a fever or a cough, no shortness of breath, not even any particular tiredness. I was as terrified and stressed out as I had ever been in my life, so I wasn’t doing great, but on the Covid front I was asymptomatic. I kept cooking and (kind of) cleaning, walking the dog and checking emails; I even wrote a news story. Part of this was a necessity—there was no way my husband could walk the dog if he couldn’t even sit upright, and I refused to require delivery workers to enter our obviously dangerous building. Part of it was a kind of ableist fugue state, in which I continued to manically go through the motions of my life in order to cast a spell ensuring everything would be ok. Resting would be proof that something was seriously, dangerously wrong, and I couldn’t allow that to be true. Not when there were no doctors, not when we had been so careful, not when needing help could kill somebody.

Of course, something was seriously wrong. About ten days after the test, when I was expecting to exit the infectious period and be able to relax even if just a tiny bit, I started feeling some fever-y muscle aches, though I didn’t have a fever. My skin was suddenly extremely sensitive; scratching an itch would lead to pain blooming throughout the whole limb. I developed a fatigue that went far beyond tired; there were days it felt like there was no qualitative difference between being awake and asleep. My head ached constantly. I could walk around, do the bare minimum of household tasks, re-read books, and have what I think appeared to be relatively normal conversations. I couldn’t look at screens or think big thoughts or write anything beyond some very pared down newsletters (see again: ableist fugue state). This lasted about a month.

Then the brain fog really set in. I wasn’t as tired, and the headaches weren’t as bad, but it was like I was operating in a language I didn’t speak. I mean that very literally; my version of brain fog felt almost exactly like living in Mexico before I spoke Spanish very well, except this time in English (and also Spanish). It went beyond forgetting words—it was like I’d never known them. I’d start sentences with no idea if or how I would finish them, hoping my subconscious would find the right path before I needed to take it. Other people’s reactions were the only clue if I was making sense or not, and if I wasn’t, there wasn’t much I could do about it. Luckily, walking into the fire of Spanish immersion is one of my most formative experiences and cherished memories, and in some ways I’ve spent the 15 years since trying to get back to that feeling of maximum uncertainty and total exhilaration. Brain fog brought it back, and my positive associations prevented me from fully freaking out. It wasn’t, however, conducive to writing in the way I was both professionally obligated and personally desperate to do.

Like learning a new language, my brain fog slowly improved with time and patience. At the very end, I only noticed it when I was doing crossword puzzles. I’d read a clue, go to the cabinet in my brain where I knew the answer should be, open it, and wait for the word to appear in the empty space. Feeling like I was physically repopulating my brain like this was honestly extremely cool and satisfying. All told, from my husband’s first symptoms to my last remnants of brain fog, it took three months. Professionally, Covid delayed my book’s completion by a lot longer than that, and the experience continues to limit how much work I can or want to take on. Psychologically, I’m still processing what happened and what it meant, and I probably will be forever.

Did I have Long Covid? I’m still not sure. The CDC would say yes (symptoms lasting over a month), the WHO would say no (for them, it starts at three months). I was obviously what researchers would call cognitively impaired, though I had another frame of reference for it. I didn’t really have post-exertional malaise, nor do I think I had the heart arrhythmias, blood-pressure swings, or chronic shortness of breath than can result in drastic drops in mobility. My experience wasn’t linear or predictable, but it was constantly changing, and eventually, I did get better. Sometimes I call it Long Covid. Sometimes I call it Medium Covid or Weird Covid. But really, I think I should simply call it Covid.

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If you’ve talked to me one-on-one since I got sick, you know I can’t stop talking about my Covid experience, even over a year after my recovery. But I haven’t written about it publicly until now. At first, I didn’t want to perform a very confusing illness and recovery on the internet, especially not in real time. Then, as my social world got vaccinated and sometimes breakthrough-infected, my experience stopped seeming relevant. It seemed like it was moving into the past, becoming a relic of the pandemic’s worst winter and a place most people I knew wouldn’t have to worry about visiting. I thought I would never write about it, that I would keep it for myself.

Then people I know, especially in the US, started getting Weird Covid, just in the past few months. Some of them identify their experience as Long Covid; some of them don’t know what to call it, just like I didn’t. In every case it’s far stranger, less predictable, and worse than they expected Covid to be, especially with all the experiences and immunity available to us in spring 2022. Covid still has the power to destabilize people’s realities, to limit the immediate circumstances of their lives and abilities while simultaneously exploding the horizon of possibilities they expected to experience. And yet, the only stories we’ve found to offer about its not-life-threatening form are, “over in five days, back to work!” or, “lasts forever, you will never be yourself again.”

Those stories may both be true, for some people. Many (most?) of us, however, will find ourselves somewhere in the messy, confusing middle, with few models for understanding what we’re going through. This narrative failure is, frankly, unconscionable. It leaves people just as unprepared as I was for what Covid can be like, a year-and-a-half later and a pandemic universe away. Worse, it opens the door for ableism to rush in from both directions, forcing us back into the shapes capitalism demands from us. Get better in five days and you’re a good worker and a valuable person; stay sick and risk being treated like the opposite. Because of this oppressive and incorrect binary, we’re so scared of not being better in five days (five days!) that, just like I did, we deny ourselves the rest that would actually help us recover. We cling to the prejudicial illusions that health is a moral imperative and disability a personal failing, and we use those false beliefs to create a reality in which everybody is all but guaranteed to get sick. And after all this time, after everything we’ve learned, we still refuse to see what Covid is telling us about our categories of “healthy” and “sick,” “able-bodied” and “disabled”: That they aren’t separate, permanent categories at all, but rather a spectrum all of us are always moving along.

For over a year now, I’ve been gobbling up Covid stories, hoping to find my experience reflected somewhere, anywhere. I have yet to find it. I’m not even sure that what I’ve written here captures it; deep fatigue and non-linear illnesses have a way of evading language and narrative in a way that hovers between frustrating and mystical. Maybe all Covid stories are cursed to feel earthshaking from the inside but look cliched and superficial from the outside. I’m willing to take that risk, if it helps someone make sense of their Weird Covid in a slightly different way. I’m not presenting my story to negate anyone else’s experience, much less as a lesson in what to do or not to do. I don’t offer it as a corrective, but as an addition to a Covid canon that is becoming increasingly rigid and unforgiving, and that continues to leave countless people on the outside, wondering what’s wrong with them.

Having Covid sucked, and I’m still doing a lot to try to avoid getting it again. But experiences don’t have to be pleasant in order to be revelatory. It was staggering to see the outlines of my own ableism so clearly. I learned how common—and how nonsensical—it is for our public narratives to snapshot a slow recovery at its most difficult moment and present it as static, lifelong tragedy. For the first time, I experienced what it’s like for people to imply that my life was their worst nightmare—a shockingly painful aggression that’s unthinkingly lobbed at fat and disabled people every day.2 I was cognitively impaired, and it was fascinating. I was sick, and I got better, and I will never be the same.

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