Solid Ground

A little personal essay about where I've been these last three weeks

A few years ago, I learned that a person who is drowning doesn’t appear to be drowning. A drowning child generally won’t flail wildly and scream for help; instead, you’ve got to look for the silent kid. All the remaining energy of a drowning person is being used to keep themselves above water, until nothing remains.

When I’m having my better days, I’m able to write. Not just here on Substack, but on twitter, on Instagram, on every fresh newborn Bluesky and ancient moldering Facebook. Occasionally, reluctantly, I make a TikTok video, although I dislike being on camera. When I’m working on a reported piece for The Gauntlet, I’ll have dozens of tabs open- studies, articles, commentary from researchers, my twitter bookmarks (chock-full of more studies, articles, commentary from researchers). In my way, in all the ways I know how, I’m trying to get some help.

Even on my good days, I’m mostly homebound and rarely out of bed. But when my symptoms are cooperating, I am at least able to read, write, watch videos, and share information. I like to think of my mother telling me, “You might as well do something while you’re doing nothing,” and I do.

Although I am sick now, I am still the advocate I was before I developed Long COVID, before I ever contracted COVID. The advocate I was because I knew then what I know now: that letting the virus spread unchecked is unsustainable, based on a poor understanding of what we know about SARS-COV-2, unjust, and morally wrong.

But when my symptoms become too severe, one by one, you can watch the lights go out on my accounts. The Gauntlet, being the place that requires the most work and energy, is the first to go down. Know that when I can be, I am here. Know that when I stop screaming for help, I am drowning.

My most recent good day was a little over a month ago, on September 20. On that day I left the house, had a coffee in the park with a friend, and had a conversation with Walker Bragman on this platform. That Friday capped three weeks of relatively improved health for me; I was cautiously optimistic. But toward the end of my 90-minute talk with Walker I began to feel tired, distracted, and headache-y. I lay down, but the next morning I woke up back in a crash.

For the next two weeks I continued writing as my symptoms worsened. For me, Long COVID manifests as a mixture of otherworldly fatigue and endless headaches. I have the dreaded symptom called “PEM” or post-exertional malaise, which is characteristic of ME/CFS and afflicts about half of people with Long COVID. PEM is easy to explain but difficult to understand and harder to navigate; essentially, any exertion (physical or mental) leads to a worsening of symptoms, usually 24-48 hours later.

Finally, during the week of October 7, I didn’t have a single day with a few hours’ worth of energy to give to sitting and writing. “I’m no longer asking,” said my body. Teary, pouty, angry, an absurd, wrathful fetal position-ball with a bright pink migraine cold-cap on my head, I admitted defeat and stared at the wall. “You can’t hurry recovery from PEM,” goes the old saying, “no, you just have to wait.”

On October 11, I made the mistake of going to a doctor’s appointment while still in my crash. October 12 and 13 were some of my worst days yet, with severe migraine that wouldn’t respond to my top-shelf migraine abortive medication, Ubrelvy, and fatigue that left me fully bedbound. Last week a friend did my laundry for the first time, then my dishes, and took out my trash. While she cleaned around me, I lay in my bed, in my strange mix of feelings: gratitude and love for my friend, fear for my future, defeat for my present, plus a weird swirl of humiliation that is, I suppose, internalized ableism.

Long COVID crashes turn me into a detective, a researcher, an archivist. I remember the days I did and didn’t get out of bed, the days I did and didn’t have a migraine. I develop theories and debunk them, read the studies coming out and try to understand them. I update my friends about my condition in minute detail, the way people talk about their new baby or their dog (if they’re a little too into their dog). I know I’m probably boring them. I think they miss the me I was before, and I miss her too. I miss being able to dress up. I miss being able to have a cocktail. In my crash, I can’t even have caffeine, and I long for the simple comfort of a hot cup of coffee in the morning.

It’s important, they say, to relax when you’re crashing; I worried about everything. If you engage with Long COVID spaces at all, you’ll know there is always a contingent of patients scolding people for “negative thoughts”, and I had negative thoughts about those people. On top of my worrying, I worried about my worrying; what if it really is making me worse? Should I really be on a no-carb diet? (Way too hard, I decided; half my calories are coming from energy bars). I worried about how sick I am, I worried about how long it would be until I could leave my home again (I still haven’t). I worried about my finances. And relatedly, I worried about when I’d be able to write again. I’m not well enough to have another job nowadays.

At one point I turned to twitter, migraine and all, to beg for advice: I asked whether anyone with PEM had improved on any medication, and if so, what med? I also asked if anyone knew of Long COVID competent doctors in DC who accept insurance. Most of the responses were kind, but of course, there’s no magical cure for PEM, only people who seem to have improved somewhat on medications that may or may not work for others. One person tells me to pace, and I explode in frustration. “All I do is lie in bed all day! I can’t pace more than I’m pacing!” He then recommends thinking good thoughts, and reader, my thoughts are not good. Desperation pushes me once again to buy supplements that, I’m reasonably sure now, are doing nothing. I’m still waiting to see specialists, who are booked out for months. My PCP is caring, and listens to me, which is a best-case scenario for Long COVID. She orders tests and follows up on them. I don’t get any better.

This week, for some reason, I’ve slightly improved. Rather than attributing it to any foods I ate, thoughts I thought, or expensive supplements I’ve added to my 15-supplement regimen, I know now to blame it on nothing more than chance, and likely rest. I have rested, but I don’t feel rested; more like I’ve been struggling on the open ocean when suddenly, miraculously, and utterly randomly, I find myself washed up on the shore of some desert island. Beaten up, bedraggled, bedridden still, but suddenly breathing.

I am not well enough to walk and get a coffee, or do my laundry, or leave my apartment. But I’m well enough to shout for help, so I’m here. Thank you for being here too.