Guest Post: ‘My Covid Brain’
By Deborah Fallows. This is the kind of story we'll be telling about these times.
I met Deborah Zerad, as she was then, on a blind date when we were both 18. We were married at age 21, nearly 52 years ago, and have been together ever since. As everyone who knows us points out, I am very fortunate.
Deb has a PhD in theoretical linguistics; she is the author of several successful books; she was the fully involved mother of our two sons, who now are raising our six grandchildren. Over the past ten years she and I have traveled the United States together for the Our Towns book, HBO movie, and foundation.
Six months ago, Deb finally got Covid. I had succumbed a few months earlier. Here she writes about her long Covid trail.
My Covid Brain
By Deborah Fallows
I often imagined that I operated like an air traffic controller. In my amateur status, I could manage layers of family, household, and professional tasks at once, in my head, and frequently without lists. I could guide along my to-do’s like incoming aircraft of different types, at varying altitudes, speeds, degrees of separation, through their landing paths to touchdowns. They rarely crashed.
Then, a few months ago, while standing in the vitamin aisle at our local pharmacy, something hit me like an open door slamming shut from a gust of wind. From the shelves of options, I couldn’t make the simple choice of a daily vitamin. There were too many brands, too many sizes, too many prices, too many colors, too many labels. I put down my basket and ran out of the store.
The pharmacy trip was my first in months, after I first tested positive for covid around Thanksgiving last year. My case was relatively short and mild, after vaccinations, boosters, and obsessive masking. I took no paxlovid, and over a few months was slowly recovering strength and stamina toward my normal lifestyle. Show me a pool, and I could swim a mile. Put me on a bike, and I could ride ten. Yoga and walking were kids’ play.
Life reversed course after that visit to the pharmacy. Multiple tasks or multiple steps in a task overwhelmed me. How do I make egg salad? Should I toast the bread now? Words and names (never a strong suit) hid from me. I couldn’t make decisions. “You choose,” I would tell my husband. Life exhausted me. I slept 10 hours straight, and woke up groggy and slow. My days felt very short. My husband gently confirmed that I seemed “one beat behind.”
I consulted my own doctor and every other doctor I could track down: doctors who were friends, and friends of friends. They listened and talked. I read everything I could about long covid and compared notes with a few friends who also had symptoms. An MRI showed my brain “normal for my age,” a scary concept in normal life but which I now found hugely reassuring. Since every day was blurring from one to the next, I began to record notes about myself. These helped me keep track.
For the next two months or so, here’s what I have noticed:
‘My broken brain’
My broken brain, and a new brain. If I couldn’t multi-task anymore, I daresay I could sometimes read, write, think, even sleep better. Without the background noise of distractions in my brain, I could compartmentalize, a trait I always admired in people but was never able to do myself. For an hour or two at a time, I could read about and absorb difficult things, like how to connect details of Confucianism to China’s contemporary culture. Or even write something that seemed– at the time at least– not bad. I had a creative epiphany on how to pull together the threads and frame some work I was supposed to do.
But every day brought a new version of me. Even throughout the day, I never knew who would show up or how long she would stay. I panicked at surprises, even small ones. We were out of milk! I felt like a token in that old childhood board game, Chutes and Ladders. I would climb and climb, then suddenly tumble down.
I became very deliberate at following, even verbalizing, every move I made. First, remove eggs from fridge. Place them by the stove. Get small pan. Put eggs in pan. Add water. Put on stove. Turn on stove. Do not walk away from stove, etc. etc. I was behaving like the sitcom character reincarnated from days of yore: Dobbin the Counting Horse. And I was also clumsy. It was a victory to hard boil eggs without dropping them first. I upended a smoothie onto my laptop.
I understood that the doctors, while generously listening and offering me interpretations and vocabulary in return (“paralysis of choice” resonated), didn’t have much experience or research to offer me. We are all too early in the covid experience.
Workarounds. So I developed some tactics to keep functioning. I transferred anything that flew into my mind onto my whiteboard. Bank. Lightbulbs. Call Mom. (Mom, if you’re reading this, I am sorry that I haven’t told you before. I didn’t want to worry you.)
I paced my day carefully, calibrating my actions in a micro sense and following the arc of my day in a macro sense. I would abandon (and then often lose) emails mid-sentence when my brain began to give out. I would go outside, seeking peace with space, air, and birds. It felt primal and healing. I avoided anything categorized as toxic: alarmist talking heads, mean people, or sad stories I could do nothing about.
I tried yoga positions, especially with my head hanging down, which seemed to bring my brain back within reach and into sync with my body.
Adrenaline. A few times, even for a few days, there was something important (always family) where I could kick back in. I spent a few days in Florida with my mom, consulting with doctors, lawyers, accountants, and caregivers. I don’t know how I did all those things, which I could have formerly done on autopilot.
As one doctor said, for high-functioning people, no one will likely notice. I could hardly believe that. Since I felt like I was watching myself perform, and I could see right through myself, couldn’t others as well? When I was finished and returned home, I completely crashed for several days.
As I look back at my journal, my tracking looks like a sine wave, although with smaller ups and downs now. A good day, a bad day. The peaks and dips correlate with my records of hours of sleep. I am improving; I can get by now on only eight or nine hours of sleep.
Recovery: It has been months now since the door slammed shut on my brain. And then, in the last several days, I’m carrying everything I’ve described above with a lighter weight. I sense a recovery, sometimes fog drifting in like Sandburg’s, “on little cat feet,” but more frequently drifting out. My body and brain are meeting up with each other again. I’m starting to think about the future.
Was this covid brain? One neurologist friend delicately suggested my recovery points to coincidence rather than to covid as the source. I don’t know. Who knows? I’m not a doctor; I’m a linguist and a reporter. I don’t know why it happened, especially so suddenly, and I don’t know why it is receding.
But I can tell you after living in this body and brain my entire life, my meta sense and my observations trace a through line from the beginning of my covid experience to today.
Hi, Deb: What you described sounds awful. We live in our minds, so without clarity and energy, our worlds dim.
Good choice about postponing jury duty. There will always be a new need for jurors. Our last trial, which Gail will conduct, was scheduled to start yesterday, but the judge postponed it. When we take on a case, we commit to finish it, and several of our cases have each lasted ten years or more, so we worry about retaining the mental clarity and fortitude to meet our commitment. In the age of covid, Gail has worried about remaining able to try our last case, a racial discrimination case against a large Texas oil and gas conglomerate. So far, we’ve dodged the virus, but we know it’s always lurking nearby. Now, at age 74, I might be losing my grip on middle age (which I dispute, vigorously), but I won’t take on any more cases. It’s time to start a new career, while I’m still young.
I rarely respond to Jim’s and your reports, but I always enjoy them and admire your wonderful work and insights. Though we no longer see each other, I treasure our friendship. I hope you both keep writing about this troubled world. You two are needed. My very best wishes to you both, Jim
Just a quick note to add my support. I'm so sorry this befell you and wish for your speediest and complete recovery. I'm such a fan of both of you, as you know. Heartfelt best wishes. Oh, and if it helps to hang out in Maine for a while to assist in your recovery, my place there is yours whenever.... Dan