Making the Bed After COVID-19 Helped Me Through ‘Long-Haulers’ Syndrome
At the writing of this, 140,000 new cases of COVID-19 occur each day in the U.S. This is my story.
I’m tired. I don’t want to. Do it anyway. Who’s with me? Let’s make the bed. There, it’s done. Now what? Iron a shirt? Take a shower? Make some tea? God, anything but sit down to write. Every morning it’s a tug-of-war and by nightfall, well, depends on the day, or the week. Sometimes I’ve strung together many words, some of which might even be useful. However, these days, it pains me to admit, I’m simply not doing enough of it. What’s enough? Enough to make a living, which is how I’ve been making my living for the better part of a decade. And now I’m not.
Last January COVID-19, then known as the novel coronavirus, struck me down for nearly 10 days. While there were no tests at the time to confirm it, the attending physician at the urgent care facility believed I was infected with this new virus and diagnosed me with ‘viral pneumonia’ — the thing doctors were calling it before it had a name. Since then I’ve seen my GP and according to her, the specific set of symptoms I experienced then and now are consistent with COVID-19 and with what researchers are now calling ‘long-hauler’s’ syndrome, patients who have recovered but still experience symptoms. Scientists estimate that at least 10 percent of COVID-19 patients experience lingering symptoms months after recovering from the acute phase of the illness. No one seems to know why or what makes one more susceptible to this. Additionally, they don’t know if you’re immune to reinfection. Cases of reinfection have been documented, though it’s unclear how common the occurrence.
Most conspicuously I’m winded easily just walking up a flight of stairs and can’t even get through a 30 minute yoga routine without gasping for air and sweating in that way you sweat when you’re sick — a cold, clammy I-have-to-lie-down-now sweat. Also, memory loss. I’ll get to that.
At the time however, I’d no idea what was going on. By day six I took myself to my local urgent care facility because I could barely breathe and had nearly passed out from a coughing fit. The attending physician asked me if I’d been in contact with anyone from China or if I’d been traveling overseas. “Yes and no,” I answered. “Yes to being in contact with people from China and no to travel.” He immediately ordered a CT scan, gave me an antibiotic and asked if I needed an ambulance to get me to the hospital. I thought he was overreacting. “This is just bronchitis, probably,” I gasped. I like to do that, tell my doctors what I have when they tell me something I don’t want to hear.
“Humor me,” he said. “Please get the CT scan. Can I trust you to do that?”
“Yes,” I lied. I went home and directly back to bed. The antibiotic did a little, or it didn’t. It’s hard to know. I turned a corner, and began to gradually improve over the next several days. “Thank, God,” I thought. “Just a bad bout of bronchitis.” Yet it was not like any bronchitis I’ve ever had. It wasn’t like anything I’ve ever had. And I’ve been hospitalized with scarlet fever and bedridden for a month with mononucleosis. What’s more, the months that followed were disorienting, frustrating, exhausting and at times, terrifying.
I lost memory. Significant chunks of knowing slipped away into the night. I go to the place in my brain to find a thing I’ve known about for years, and it’s gone. I know I knew it. That’s the strangest part, knowing you knew it, but you can’t find it, anywhere. Just emptiness where once something stood. I can’t even make out its outline. It’s somewhat like getting up from your desk to get something in the next room only to forget what it was once you arrive, which also happens, nearly every time I get up from my desk. I’ve taken to writing everything down. I use a day-of-the-week pill dispenser because I forgot, several times whether I’d taken my anti-depressants. Also, don’t break my train of thought, I’ll never get it back. If my husband interrupts me, a thing we both used to do with regularity, one of us would say to the other, “Sorry, you were saying?” Now, however, I have to respond with “I’ve no idea.” Because I don’t.
I get words mixed up. I couldn’t remember the word I wanted when I said, “It’s about ______ing your expectations,” a phrase I’ve used for years. I tried it out the other day and couldn’t remember the key word. It starts with “m,” ends with an “ing.” “Mitigating?” I thought. My brain started throwing all kinds of random two syllable “m” words at me to add “ing” to. “It’s about messaging your expectations. Massaging your expectations. Measuring your expectations.” OK, so I just re-read that and realize only now that “masturbating” fits too. That also is not the word I wanted.
Everything is hard, including and especially writing. I’d estimate I lost ten years of technique, style and vocabulary. About a third of my hair fell out. Just came out in clumps after every washing, during every brushing. I’m very gentle with what I have left. I get rashes, little red bumps on my arms, then elbows, knees and knuckles. The doctor is concerned I’ve developed an autoimmune issue. I’ll go for more blood tests at the end of the month.
Fatigue chews at the edges of my focus and I get confused. There are days it devours my attention and ambition. I’ve heard other long haulers describe it as “brain fog,” perhaps as good a description as any. Except it doesn’t account for the fatigue, which feels like the driver of all the other symptoms. All I want is my bed, which is why making it feels like such an accomplishment and an act of defiance. “I’m not giving up.” It says. After I make the bed, I walk. I wish I could tell you that making the bed means that you don’t go back to it. But it doesn’t. Yesterday, I struggled through my walk. When I got home I went right back to bed and watched Buffy the Vampire Slayer on Prime until dinner. 10 hours of bad 90s fashion and angsty Sarah Michelle Gellar may have cured me of my 90s nostalgia forever. But I got stuck and literally couldn’t force my way up to horizontal for more than a few consecutive minutes at a time. Certainly not enough to have a day.
Well, there are good days too. Like today, which I thought was going to be a bad one. Yesterday’s failure hung heavy on my psyche. The unmade bed formed a gravity well that nearly sucked me back in. Instead of sticking around, I threw on my walking shoes and jogged out the door. Feeling better upon return, I made it. Which, I think, brings me to the point. It’s in making the bed that makes me feel like I’m choosing the land of the living.
Don’t get me wrong. Making the bed doesn’t necessarily anything else easier, like writing or emailing, or walking. Sometimes making the bed is just making the bed. But when you do it everyday, you start having days that are different from nights and weekends that are different from weekdays. It’s an action that draws a line between Sunday night and Monday morning. Before you know it the nights feel appropriately proportioned to the days.
When something goes wrong, it is the small acts of self-care that we abandon first, even when they are the very things that have the power to heal us….Carve out time to make the bed. In doing such a simple task you learn how to untangle the complexities of life. It is no coincidence we find our best ideas while thinking lightly.
These are two quotes that occur in separate chapters and I believe that last sentence is my paraphrase. I can’t verify that because I only have the audiobook and it doesn’t offer a search feature. At the time I didn’t even have the ability to read text. I’d try and start sweating and get nauseous. I purchased the audiobook after seeing Sieghart and others read selections of it in a on YouTube at an even called The Power of Poetry. He does this thing in England called, The Poetry Pharmacy. He sets up a tent and people sit with him and tell him what ails them. He then prescribes a poem for their specific woe. So, he put the poems together for the book and called it by the same name. The Poetry Remedy is the U.S. version.
This book has been my lifeline. I’ve followed Sieghart’s baritone British accent back to the land of the living. His soothing presence in my ear this past year has felt like an anchor during the many storms of 2020. If anyone doubts that poetry can heal brain trauma, I challenge you to try this book for anything ailing your mind, body or soul. Because it’s not like it was just COVID, but the longest and most deadly fire season in California, where I live, lockdown, and, of course, the daily, waking nightmare that was the Trump presidency. I’ve been white-knuckling life for the last four years. I don’t know if I remember how to relax. Collapse in an exhausted heap or pass out in a drunken stupor, sure, but relax?
That’s perhaps why making the bed has felt like such a significant act. I haven’t been sleeping that well, nor have I been hoping that well. It feels a little shaky to hope, like stepping into a boat that may or may not be leaking. You won’t know until you get in. At least I’m writing. If you’ve gotten this far, thank you. I think what this whole post-COVID thing has taught me is how to prioritize, and how to manage my expectations. Hey, I remembered it! MANAGE. Yes, that feels like the old me a bit. There may be an upside to this, I’ve stopped expecting everything from myself and started appreciating all the things I never valued. Like playing with the kittens, grocery shopping and doing laundry. That’s the new normal, that I actually enjoy domestic chores and that they feel like acts of self care. A thing that would have sounded utterly absurd to me pre-COVID.
The rashes have subsided and my hair is growing back. I take supplements now and don’t drink, well, don’t drink as often. I believe it’s working. Every improvement is so tiny and incremental, but it’s a marathon, not a sprint. And I’m writing most days, sometimes only a couple of hours, but it’s a hell of a lot better than melting my brain on 10 hours of Buffy or whatever. And while I wouldn’t say I’m remembering how to write, I would say I’m forgetting less. Which is the point about making the bed. It reminds me that today is a new day, a different day, a day with possibilities different from yesterday’s. I may or may not discover them all, and maybe there are only one or two, but if I hadn’t made the bed, I wouldn’t have discovered them at all.