Every day when I look at the two-inch gashes in my kitchen counter, I remember my fight with the coconut. I had been stuck in the quicksand of a prolonged recovery from COVID-19; I was a “long hauler.” Although I was doing everything my doctor recommended to feel well again—a restricted diet, rest, cryotherapy, a burdensome regimen of daily supplements—my body and mind, still weak and foggy two months after my positive COVID test, remained strangers to me.
I felt certain that this fresh coconut, if I could just whack its top off with my big kitchen knife, would make me feel better. But I couldn’t crack it open. I hacked madly. Pieces of its brown shell splintered off and flew around my kitchen. I didn’t care that I kept missing the coconut and chopping into the pretty, white faux-marble countertops we had just installed last summer. This was extremely unlike me—I’m patient and careful, not the type to fly off the handle in a moment of frustration. Later, I chalked it up to “brain fog,” a common post-COVID symptom that’s a catchall term for the inability to think straight.
Before my bout with COVID in July 2020, I had been a fairly positive, often goofy, fifty-year-old writer who liked to wake up early, ride my bike to Mount Bonnell, drink wine, do handstands. When the pandemic hit, I doubled down on my efforts to keep life lively around our house in Austin for my husband and two kids, singing songs about our dog over breakfast and other good nonsense. I felt more thirty than fifty. I was pretty certain I could keep feeling thirty if I just tried hard enough.
But after COVID, no matter how hard I fought it, I felt like a depleted old woman, fuzzy in the brain and low in spirits, crippled by a virus that had not killed me, but had rewritten my life nonetheless. Fatigue, a primary symptom both during and after COVID, is a flimsy word to describe the bone-deep exhaustion I often felt. COVID’s brand of fatigue deserves its own German compound word, something that means “the sensation of being wrapped in a lead blanket while the thought of doing anything makes you cry.”
Similarly, “brain fog” doesn’t do justice to the cognitive distortions I experienced. At times after COVID, I felt like a lobotomized Jack Nicholson in One Flew over the Cuckoo’s Nest, only capable of staring into a void. Often in the middle of the night, insomnia and anxiety, also common with long COVID, would sit on the edge of my bed and taunt me. Forever imprinted in my memory is the endless night when the clouds, visible from my bedroom window, transmogrified into the gruesome Goya painting Saturn Devouring His Son. I was not in control of my mind. Writing, my job, was almost impossible.
Other COVID-specific vocabulary I hadn’t known became far too familiar. Words like “oxygen hunger,” when you feel like you can’t get enough air and are suffocating. “Aphasia,” when your words and thoughts don’t correlate. Say “pulse oximeter,” however—the name of the medical apparatus you put on your finger to check your blood’s oxygen saturation—and I feel a warm buzz; my pulse oximeter became a dear friend in the darkest days of constant shortness of breath. The gadget let me know that I was still getting enough oxygen and didn’t need to go to the hospital.
When I told my primary care doctor how exhausted I still was six weeks after my COVID diagnosis, she suggested that perhaps I was “out of shape.” I was not out of shape. I was falling asleep in my car at streetlights.
I found a new doctor, Dr. Theresa Pugh at Central Family Practice in Austin. She looked at me through the computer screen during our first telemedicine appointment and said the words I needed to hear: “You will get better.” The relief was immediate. I’d been afraid I might be stuck here forever—there was no one to tell me otherwise—and now I had hope that there was a way out.
Pugh introduced me to my embattled mitochondria, which, as I vaguely recalled from high-school biology, are the “powerhouses” of our cells. She explained how my mitochondria had been fighting a major tug of war with the virus. Now they were very, very tired. Because I kept trying to live my former life—the one where I could ride bikes and work and invent songs about my dog—my mitochondria were not getting to rest. The tug of war was ongoing, and my body couldn’t heal.
My former life needed to be put on hold. If this were the 1800s, and we had the means, we long haulers could be like characters in a Jane Austen novel, sent away to convalesce and do nothing all day but drink tea and take the occasional stroll. But there is no retreat for the long haulers of today. Most of us need to keep on working and driving the kids to baseball. We have had to figure out our own way to convalesce.
Long-COVID recovery, I quickly learned, requires mental rest as well as physical. This became much too clear one day when I was trying to answer my eleven-year-old son’s questions while also trying to remember which supplements I had taken and what to pack for a weekend trip. To my son’s horror, when I tried to answer his questions with an “I don’t know,” I got stuck on the first word, repeating it over and over in a stutter that refused to relent. My son thought I was having a stroke. I was not, but I was in total mental shutdown, literally rendered speechless. Pugh would later explain this incident to me with yet another useful metaphor: I’d had too many computer screens open on my weakened post-viral “memory.” My hard drive could no longer compute.
More than her metaphors, I loved that Pugh had a plan. Yes, plenty of the line items on this recovery plan are not available to all—for example, paying for expensive brain supplements and regular visits to a damn good acupuncturist. But most of the changes I had to make were less about interventions I had to add in and more about practices I had to give up. At the top of the list were caffeine and wine. The fact that I could easily relinquish these two longtime loves demonstrated the depth of my desperation. Also critical to eschew, she said, were other inflammatory foods: dairy, gluten, sugar.
But the most important thing I had to give up was my autopilot preoccupation with productivity. I began to call it the “chill the f— out” approach to recovery. This meant lying in my hammock during work breaks without guilt. And it meant a new practice, easy for anyone to do, called yoga nidra, in which I lay on my back and let a soothing voice on YouTube or a meditation app lead me through an attention-focusing exercise. More than anything, it meant getting over the idea that I was so important that the world couldn’t do without me for a few months.
Six hard months after my COVID diagnosis, I found out that Pugh was right. Gradually, I began to make it through the day without having to lie down. My brain could follow my friends’ conversations again. I could ride my bike without feeling dizzy. I could go to sleep without fear of middle-of-the-night insomnia and anxiety. All of that has gradually—maybe not entirely, but mostly—faded away.
I was lucky to have found Pugh. Many Texans are stumbling through long COVID without medical care. When I posted on social media about my long-haul tribulations, I heard from others who were also caught in a prolonged recovery. A friend of a friend called because she couldn’t make it through a workday and was wondering if she should ask for medical leave. I had long conversations with someone who couldn’t shake the blues that the virus had brought on and was worried she might never get her life force back. I talked to a friend’s thirty-something daughter who was scared to take on a new job because she still couldn’t walk around the block six weeks after COVID.
The medical community has become very clear on the need to take long COVID seriously. While research is just beginning to emerge, early estimates find that 50 to 80 percent of patients still have COVID symptoms three months after the onset of the disease. Since nearly 2.5 million Texans have had confirmed cases of COVID, that would mean more than 1 million of us have lived with lingering symptoms.
In response, specialized post-COVID care clinics have opened across the country; in mid-March, Baylor College of Medicine in Houston opened one. When I called to make an appointment just two weeks after its official opening, the wait time was already over two months.
Dr. Fidaa Shaib, associate professor of medicine at Baylor and a primary organizer of the clinic, says she knew it would need a multidisciplinary team—gastroenterologists, cardiologists, psychologists, and many others—to tackle the Hydra-like nature of long COVID. While patients span the age spectrum, the majority in the Baylor clinic are in their thirties and forties.
“It’s really a privilege to listen and tell people that they’re not the only ones who are going through this, and that we are committed to getting more information about long COVID,” says Shaib. “People really want to be heard.”
I asked her the question I’d been mulling for a while: how much of my lingering forgetfulness, aphasia, and mental fog—what my children call “COVID brain”—can I actually blame on COVID? Sometimes I wondered if my more minor symptoms were just a normal part of getting older.
Shaib told me I should come in for testing. “With COVID, there is concern about microvascular disease, how the smaller vessels in the body are impacted; that might be part of the cognitive dysfunction,” she says. “So, part of our assessment is testing patients with any cognitive impairment by psychologists who are focused on that specific area.”
Although Baylor’s formal post-COVID clinic just opened in March, Shaib and her colleagues have been treating post-COVID patients for over six months, enough time to determine if patients are actually improving—and they are.
“I have a patient—and I’m very confident about this—she is one of my asthma patients who’d had pain in her chest that was very worrisome,” said Shaib. “But I just saw her in the clinic and she is much better. . . . People recover at different paces; you know, not everybody’s going to recover in three to six months. But there is reason for hope.”
Despite everything, my shadowy excursion to the land of long COVID is something I’m grateful for. I write this cautiously, because you can’t say that a disease that has killed almost three million people and decimated livelihoods has an upside. But now that I am better (and I can only say this because I am better), I see what the illness gave me. Because it took away so much of who I thought I was—active, mentally able, energetic, positive—I had to figure out what was left when all of that was gone.
I felt a surprising awe when my son, exiled from the house when I was still contagious, came to talk to me through the shut window. Although I was too exhausted to project my voice enough to be heard through the glass pane, I could see his face, and it was indisputable that the freckles on his eleven-year-old cheeks are nature’s most beautiful work.
I felt it again when an acupuncturist friend, Sandra, showed me acupressure points via Zoom to help my lungs. It was so tender, the way she showed me where to press in my chest, my wrists, my solar plexus. Seeing my fear through the computer screen, she said in her gentle voice, “Clayton, don’t be afraid.” Illness can be so lonely, and the people you trust are a lifeline.
I felt it also when I was too tired to do anything but lie on my bed and listen. To squirrels on the roof. To the neighbor washing his car. To the creaky way the old door to my fifteen-year-old daughter’s bedroom thuds into place when she retreats to her teenage chamber. Such a familiar sound, but in my delirious exhaustion, it was unbearably sweet. Life was out there.
One day, filling out an online long-haul support group’s research questionnaire, I was pleased to find that one of the possible symptoms listed was “post-viral euphoria.” That’s what it was, I realized. There were these rare moments amid the frustration in which I felt inexplicably, deeply in love with the world. Maybe because the me that had been perpetually rushing had receded, and the me that remained could just settle in and marvel.
The other day, at an outdoor yoga class, my yogi friends were talking about their side effects from the vaccine: the shivering, the fever, the exhaustion, the four-hour naps, the loopy feeling. Their accounts gave me a surprising buzz of connection. It’s not that I wanted them to feel bad. But knowing that they’d had a small taste of these strange, unpredictable symptoms gave me the sense that they had come to visit me in the foreign country where I’d lived for six months, without most of them even knowing I had traveled abroad.
Now, as vaccines become more accessible and some of us are resuming aspects of our former lives, I am wondering what I want to take with me from all of this into a post-pandemic world. I look to the gashes in the kitchen counter. They remind me to not be seduced by the myth of my own invincibility, to not slip back into what a friend calls “the unconscious arrogance of the healthy.” It’s inevitable that I will not feel like a thirty-year-old forever, and that’s okay.
If you are reading this, you have struggled your way through this pandemic, too. Those gashes tell me that I can get through hard things. We all can. The gashes also remind me that the world can reveal its charms more when I am not torpedoing through it with such self-involved force. Maybe that’s the biggest gift here: the freedom that can come when you finally see, in the healthiest possible way, that you’re not as big of a deal as you thought you were.
