The Prisoner

After spending a month in a crash, I'm ready to admit I have Long COVID

Like the rest of the world, I became a Chappell Roan fan this summer. And while, in the six months since my first COVID infection, I’d learned the hard way that I could no longer use the little off brand stairmaster in my apartment, I’d begun to enjoy my gentle evening walks in the neighborhood with Chappell as May passed, and June.

I’d wait until 8 pm or 9, because in DC this late in the climate crisis it won’t drop below 90 much earlier than that. I’d coat myself in high-percentage DEET bug spray, the greasy, deep-woods stuff, none of that all-natural nonsense that well-meaning moms use to protect their kids and the local wildlife (including the mosquitoes).

And then I’d take a walk, a simple thing that had become a not-so-simple thing.

A walk feels less simple when you haven’t been able to walk much at all since November. When for months, walking triggered shortness of breath that lasted days and left you tearfully asking Reddit when it would end (answer: never and soon and wait and see). When for months after the shortness of breath months, exercise triggered migraines that lasted days, weeks, that ended in the emergency room, that ended in IVs full of steroids, that left me feeling drained and defeated and dull.

A kind doctor joked to me, “I want to open a Long COVID clinic- I’d get rich!” At least he believes in Long COVID, I thought to myself, and readjusted my mask. The IV fluids made me feel cold and strange. He brought me a blanket. I felt alone.

But another month had passed, and finally I was in a routine. It wasn’t every day I felt well enough to walk; maybe three or four days a week. I’d worked up from 15 minutes, then 30. Now I aimed for 45 minutes, even an hour. And I was grateful.

You’d have to stop the world just to stop the feeling, sang Chappell.

I was walking but it felt like dancing. I was looking at the world but it felt like drinking, my eyes thirsty for anything that wasn’t my books, my tv and my cat. I was smiling at the people who passed but it felt like laughing. Like I had a secret, have you heard the good news? I can walk! I can walk.

Then, my birthday.

I turned 38. My friend Yesenia and I went to a nail salon (in our masks, of course). We sat by her pool. We went late in the day to avoid other humans and the heat, but it was still quite warm, which I think was a bit exhausting for my body. Combine that with a good amount of walking throughout the day and having 2 or 3 cocktails (my post-COVID body does not like alcohol), and I woke up the following morning in a crash.

The crash went on for 3 days, 4, 5. Finally, the following Friday I felt well again. I wrote an article, and I went for another walk. An hour. 6,425 steps.

You’d have to stop the world, just to stop the feeling.

The next morning, the crash returned. This time it didn’t end. My migraine came back, and that didn’t end either.

A month passed.

At first, I couldn’t do anything but move between bed and couch. How to describe this sort of fatigue? Like being dragged under? It’s the fatigue of enchantments and curses; it feels otherworldly, like a spell. I am Sleeping Beauty, I romanticize. How can you sleep for 14 hours and wake up more exhausted than before, I wonder. I feel like a light is on in my brain that can’t be turned off. I feel angry. I feel enraged. I feel sad. I feel like dying. Is this living? Am I alive? I turn to the oracle, Reddit. Someone got better. Someone got worse. Someone took an $86 supplement, and it worked. Someone else took the $86 supplement and it didn’t work at all. I buy the supplement.

I am taking maybe 16 supplements. I don’t believe they do anything for Long COVID. But I do think one of them is making my skin glow. Maybe the calcium?

My bank account is dwindling. I lost my day job back in January. I recently received a grant for The Gauntlet (I’ll be announcing it more formally soon), which will float me for a few more months, but it’s critical that I maintain my writing schedule. The crash doesn’t care.

No reading, no writing. Certainly, no leaving the apartment. Laundry piles up, and the trash, and dishes, which I hate. Friends pick up my prescriptions from the pharmacy, three blocks away. When I run out of cat food, my friend Charlotte picks it up - from the front desk downstairs. I’d ordered it from Amazon, but don’t have the energy to go to the elevator, or carry it, or open it, or feed the cat. She does it all. I find myself wondering what I’d have done without community, without support. It scares me.

Two weeks into the crash, I start a new medication and the migraines finally subside. I begin to read again. I am back with Proust in his own sick bed, where he obsesses over the movements of his wayward girlfriend, whom he fears is running around with girlfriends of her own. I feel very close to Proust, who I suspect, based on his inability to get out of bed at this point in the books, had ME/CFS. Book five is called The Prisoner.

At week four, last week, I write my first article since the crash began, about Biden’s COVID hubris and the end of his ill-fated re-elect campaign. I am glad to see the back of him. His maskless face and the longest crash I’ve experienced to date are both receding. Good riddance.

By week four, I also leave the apartment, finally. I’ve walked short distances in the neighborhood several times now, to the coffee shop, the bagel place, the pharmacy. I’m cautiously finding the limits of my energy envelope again. I now know hour long walks aren’t within it; at least, not on a regular basis. I am also finding my gratitude again; this time for things like “I walked to get a coffee” and “I stood up and did the dishes.”

And in particular, “there are people who love me, and wear masks for me, and run errands for me, and believe me that I am unwell.” I know so many people with Long COVID and ME/CFS are not so lucky.

But the fear is closer to the surface now. Thin ice is the phrase that comes to mind. I see myself outside on a frozen lake, face drinking in the sunlight as before, but below me, icy cold fatigue, miles and miles of it, waiting to submerge me, drown me. Sometimes it pulls you under and you don’t come back up. How do I care for this body that has become more fragile overnight, in ways I do not understand, in ways perhaps no one fully understands? How can I be sure not to crack the ice again?

There is the fear of sending myself into another monster crash, and then there is the greater fear: that I will get COVID again.

Right now, about 1/40 Americans have infectious COVID-19.

That means that anywhere I go, anything I do, if my mask doesn’t fit perfectly, if I happen to sit in the wrong seat, if I wanted to see a play, or go to a movie, or travel across the country, I face a high risk of being reinfected. Don’t even get me started about the doctor’s office and the ER. The entire world has become a hot zone and I’m COVID’s most Dangerous Game.

I think of how much smaller my life has become after one COVID infection. I cannot workout anymore. I cannot drink alcohol. I can’t drive long distances. I cannot spend a day walking through a museum, or the zoo. I am not sure whether I could tolerate a day of travel, and it would be a pretty high infection risk for me to consider flying. My world has shrunk.

What would the next COVID infection take from me?

My ability to walk down the street to buy a coffee? My ability to spend time with Proust, commiserating about his cheating girlfriend? My ability to write this Substack, and earn any income at all? My ability to spend the day laughing with my friends, even if I’m lying on the couch the whole time?

COVID can take your life in an hour, a day, or a week, or it can steal your life by degrees. Many of us are trying to rebuild our lives with the pieces COVID has left us, only to have the virus barrel through and destroy those fragile new lives in their infancy; as long as COVID is spreading out of control, we are building on sand.

I am keenly aware that it is not COVID that has made me a prisoner in my home, but our failed public health policy that has made COVID a guest of honor at every table, in every home, at every event, in every nation. Most people would rather act neighborly toward their new friend COVID, than to a disabled person in a mask. It is a policy of ignorance, ableism and denial, and it is malicious.

COVID takes, and continues to take, from me, from others. I can’t know how long I’ll be able to avoid crashing, and to avoid reinfection, in a world that is hellbent on denying me safety, at shrinking my joy, silencing my anger, erasing my existence.

But as of today, I am writing, and as long as I have the ability to write, I will write. I will exist, joyfully, loudly, inconveniently, angrily.

You’d have to stop the world, just to stop the feeling.

Good luck, babe.