Illustrating an Odyssey — Three Days in a Life with Long Covid

​

A note on diagnosis and treatment: Though I still have no formal diagnosis, it appears that Covid triggered a condition called Mast Cell Activation Syndrome (MCAS), which falls under the umbrella of Dysautonomia, a dysfunction of the autonomic nervous system. The autonomic nervous system is what it sounds like: it regulates bodily functions that happen automatically, like heart rate, blood pressure, digestion, and temperature control. Dysautonomia International estimates that 70-80% of people living with Long Covid will develop dysautonomia. H1 and H2 anti-histamines like Claritin and Pepcid can treat MCAS. So can Low Dose Naltrexone (LDN), a miniscule dose of what is given in much larger doses to those with opioid or alcohol addiction. People with dysautonomia often struggle to get appropriate medical care. That has certainly been my experience.

 

“You have memories to look back on today.” Facebook: drug dealer and scrapbooker. I click on the light blue notification with the cartoon Polaroid icon. One banner whispers in grey “On this day” while the other announces in large black type “4 years ago.” The post is from February of 2020, an iPhone screenshot of the Eighth Circuit Court of Appeals opinion in United States of America v. Taleb Jawher. It was the first case I argued before the Eighth Circuit, and I won—my client’s conviction for being an alien in possession of a firearm was set aside. But what strikes me more than the reminder of my legal victory are the first two lines of the post: “This month has been a difficult one. I’ve been sick for most of it and am still recovering.”

 

My first positive Covid test was not until April of 2022. My Long Covid symptoms started a month later, right after I began a new job. I largely experienced the standard brain fog and fatigue, which would wax and wane over the next year and a half. I pushed through my symptoms because I had to work, didn’t I? I pushed because pushing—pushing through, pushing down, pushing away—was an old skin I was still trying to shed. I pushed out of blunt necessity after I woke up to an intruder in my apartment, promptly moved back in with my ex, we broke up again, and then our friends, my best friend included, chose her. I probably pushed through reinfections.

 

In the final months of 2023, my symptoms mutated and escalated. Any assumptions I had about how my body operated, even with the brain fog and fatigue, were alarmingly upended. I had episodes of heartburn that felt like a heart attack. I had downward spirals triggered by a new allergy to alcohol. I had insomnia and restless leg syndrome and couldn’t regulate my body temperature or my mood. Maybe worst of all, my nervous system seemed adamant that we were under near constant attack. There’s a bear! it exclaimed. We need to stand guard! We need to stay awake!

 

There was no bear. Long Covid was the bear.

 

Finally, at the beginning of 2024, at the prompting of my boss of all people, I began four months of medical leave. Here are three days, days I chose at random to record my experience. They are not special, but they are emblematic.

 

~~

 

When I comment on my dream-filled sleep and drowsiness, a nurse practitioner at the Living Well Center, Washington University’s center for lifestyle medicine, suggests that I try going off of the LDN prescribed to me by my parents’ doctor back in November. (None of my own medical providers thought to treat me with LDN.) She is pretty in an understated way, like an organic skincare model—minimalist makeup, long light brown hair, green eyes, perfect teeth, and shimmering skin. Her brow furrows with empathy. Even through the prism of Zoom, she is earnest and warm. I want to believe her that this is a good idea.

 

Night three is a disaster.

 

Saturday, February 10, 2024

 

2:14 a.m.

 

I am running through dark woods. The blue black of night has swallowed all the other pigment. The brown of the dirt and the tree trunks is blue black. The green of the leaves and the grass is blue black. Maybe it is raining. My desperate limbs catch on branches, on shrubs and brush. My perception is altered, by the dark, but also by other forces. I trip, faceplanting into an assault of cold mud, and hurriedly pick myself back up. All at once, a dreadful epiphany plucks me from oblivion: I am being hunted.

 

The nightmare cuts to a different scene. Now, I can see the night sky directly above me. I can feel the dirt below me. My peripheral vision registers the walls on either side of me, bits of root protruding from the uneven earth. Now, there is a different kind of rain; a handful of particles sprinkles my face, smelling of coffee grounds. Then more. And then more. As the particles collect, I begin to panic and find that I am paralyzed. I mentally thrash but my body lays fretfully still. The particles are a face mask now, obscuring my vision and impeding my breathing. This time, I am being buried alive.

 

My eyes shoot open.

 

But waking does not save me. My muscles are buzzing. Terror is stewing. I notice a pinch in my left shoulder, and then another in my right knee. For the first time in a while, I can’t get back to sleep. I crash in and out of consciousness.

 

8:58 a.m.

 

Two minutes before my alarm is set to go off, I wake up for good. After a night of broken sleep, I am a wind-up toy someone forgot to wind.

 

Why did I plan an open house for literally everyone I know to meet my new kittens this afternoon? How will I possibly make it through? I thought I was being clever, accommodating to my Long Covid, by inviting everyone to come to me. I curse the naïve hubris of my past self with the force of a cornered animal.

 

The simple task of refilling my pill box is riddled with human error. I open all the translucent yellow plastic doors labeled with the day of the week and MORNING. I’m supposed to put two smooth, sand-colored multivitamins in each mini container. But my eyes and my mind get increasingly tired of focusing, leaving my hands to their own devices.

 

Like a snap bringing me back from hypnosis, I re-focus. I’ve lost time, zoned out in my semi-conscious stupor, a not-quite sleepwalking. My eyes zoom in again on the details of the pill box. Some days contain a single multivitamin; others contain three. Exasperated, my window of tolerance paper-thin, toddler-worthy, I rush to erase all evidence of my unconscious errors, slipping and sliding the capsules chaotically along the container walls to redistribute them.

 

I recommit to the task at hand. Focus I think. I watch my hands, my fingers, like a diligent, insecure auditor, like they are not mine, but someone else’s. I empty several Claritin into the palm of my left hand. My right is the claw machine. Slowly, deliberately, I cinch the little white pharmaceutical dot between my fingers, rotate my forearm, and then release, dropping the pill into invisibility, blending as it does with the white background, somewhere in its MORNING bay with the beige multivitamins.

 

My success, and focus, is short-lived. The chunky magnesium capsules and the Pepcid tablets shaped like a loaf of bread, just a little larger than the Claritin, won’t abide my fumbling digits, won’t go where they’re supposed to, beneath the blue doors labeled NOON. I fair no better with the green bays for EVENING. Multiple redistributions are necessary. A double- and triple-checking. I think about all the cover letters I’ve written advertising my “attention to detail.”

 

11:37 a.m.

 

I decide this is a failed experiment. I take an LDN pill with my NOON magnesium and Pepcid. I try not to feel like I am the failure—me—this body I don’t understand anymore, this body I don’t want to get to know because I just want to get better. I discover that I’m disappointed I’m not well enough to go off of the LDN. I blame myself for acquiescing to the suggestion when my gut said it wouldn’t go well. I think Three more weeks and I’m halfway through my leave. What happens if I really don’t get better? I imagine trying to work again in this condition. Impossible.

 

Sunday, February 11, 2024

 

9:55 a.m.

 

After doubling up on the LDN, I sleep like a cherub, like baby bunnies have replaced politics and war, for my usual ten hours. With a good night’s sleep under my belt, I decide to try halving my Claritin dose—an alternative we discussed to going off of the LDN. I don’t have a pill cutter so I use a knife and cutting board. I swallow the slightly bigger half.

 

I’m nervous. Back in the final weeks before starting my medical leave, I had to move back in with my parents. In their 70s, they essentially waited on me while I marshalled what remained of my dwindling resources toward wrapping up work. I tried taking half a Claritin then. The millisecond my body registered the lesser dose, there was the Long Covid bear, roaring on its hind legs. Thoughts raced. Tears streamed. Muscles twitched, and twitched, and twitched. All I could do was accept the panic. There was no comfort, no reason. I made it two hours and then took the other half.

 

But that was then. Maybe this time will be different.

 

2:40 p.m.

 

The first thing I notice is my energy. I’m not dragging by the afternoon. I feel a little achy, but it’s a picnic compared to, for example, halving my morning dose of caffeine. In conversation, I still struggle to follow what others are saying and to formulate my response. But the world is a littler clearer. And I just feel … happy? I can barely recognize the feeling. All the activities that still bring me happiness—going for a walk, going to a yoga class, meeting a friend for coffee—have fatigue as a constant companion. This disease has not robbed me of happiness, but, I realize, even happiness I have begun to associate with exhaustion. I wonder if the Claritin is now causing more symptoms than it’s alleviating. It was practically a miracle drug when I first started taking it at the suggestion of my massage therapist, the first person to tell me I probably have MCAS because she has it too.

 

10:17 p.m.

 

I have some trouble getting to sleep. I worry I spoke too soon. But eventually I drift off.

 

Monday, February 12, 2024

 

4:48 a.m.

 

I wake up only once, crawling out of bed to go to the bathroom, mostly so I can walk past the clock in my kitchen and see how long I’ve slept. I observe, triumphantly, that it is close to 5 a.m. I’m able to drift off again.

 

11:30 a.m.

 

My psychoanalyst is back in town after being out for a conference. Avoidant, I wait until 11:32 to open Facetime. I tap “Gail Therapist.”

 

When her window blooms open, all I see is flesh and part of a ceiling.

 

“It’s not working again, so I had to go grab my iPad.” Gail is walking into her home office. The view is very Blair Witch—shaky, under-chin forward. Highly sensitive to even the smallest shifts in our routine, a flush of irritation perches at the edge of my chest. My avoidance was justified. This is not the reunion I wanted.

 

“Okay,” I say reflexively, a smile spreading across my face before I can stop it.

 

After a minute or so, Gail gets settled. I place her on my window ledge. Instead of laying down as I usually would, I stay seated on the near end of my cheerful vintage four-seater couch. I’ve learned that, after an absence, laying down right away is a mistake, a disavowal, an insistence that everything is business as usual when it very much is not. I test out opening with the plain truth, in defiance of my congenital instinct to perform the opposite:

 

“I’ve missed you so much.”

 

As I say it, I feel it, already beginning to cry. I think about the failed experiment, the house calls from the bear, feeling plateaued and dejected in my recovery: all that I’ve endured. “But I’m mad at you and so I don’t even want to tell you that,” I continue, before I lose my nerve. “I don’t want to tell you anything. I want to punish you for leaving.”

 

“I understand,” she says, her voice sprightly but gentle. After nearly a decade together, I must know that she does. Otherwise, I wouldn’t show myself in this way.

 

“I always want to avoid seeing you when you come back. It’s like I think there’s going to be relief, and there’s some of that … but I don’t want to have contact with you. Because when I have contact with you, I have to touch into how hurt I’ve been, how angry I am that you’ve been gone.”

 

“It’s like —” she starts.

 

“The feeling is —” I start.

 

“Go ahead…” I say.

 

“If I really loved you, then I wouldn’t leave.”

 

The words sink into me and pour out of me, primal and cathartic.

 

1:07 p.m.

 

My system is delicate today, rebalancing on a tight rope, but doing just that. The tightness in my body begins to unscrew. I wonder how much of the past week’s suffering is attributable to my attempt to go off of the LDN, and how much is simply a function of my poorly wired nervous system going through all the stages of abandonment. Gail goes to a conference. I feel as though my mother has dropped me off at preschool for the first time.

 

Glass half empty: I wouldn’t have this disease if I didn’t have such severe attachment trauma; I should have healed myself earlier. I wouldn’t have this disease if I hadn’t gotten black-out drunk freshmen year of college and woken up in a puddle of defrosted ice pack to my roommate informing me that I dove head first into concrete steps. (A different nurse practitioner, from Washington University’s Long Covid Clinic, told me that people with a history of concussions or brain injuries seem more susceptible.)

 

Glass half full: It’s like Gabor Maté says—this is the wake-up call of a system that has been too overwhelmed for too long. Sometimes I think the Long Covid is teaching me how to take care of myself after nearly 40 years of living in freeze or fawn. You can’t see it when it’s your normal. But Long Covid exaggerates, brings into sharp, painful focus. You are tired. You are scared. You need to slow down. You need comfort. You need safety. You need rest. You need healing.

 

8:59 p.m.

 

My two new four-month-old kittens swat at each other, Ozzy from his seat on the couch, and Violet from her perch on her hind legs on the coffee table. She looks like a grey Baby Yoda with her eyes dilated and her ears pinned back. They are the tiniest, most adorable boxers. Maybe it’s Gail being back. Maybe it’s endorphins from the yoga class I went to (even though I had to do most of the poses on my knees). Maybe it’s because I passed some turning point on some curve and it turns out that the Claritin is more trouble than it’s worth. But I laugh deep, authentic, energetic belly laughs at my little fur baby rock ‘em sock ‘em robots. I still worry that I might be allergic to them with this new body that seems to reject so much. But not tonight. Not now.

 

~~~

 

I will go on to crash from halving my Claritin dose. First, I will try three quarters of a Claritin. Then, I will concede defeat and go back up to a full pill. I will spend the rest of the month recovering.

 

I am straddling the line between stubbornly persistent post-viral symptoms and a chronic autoimmune condition. Treatment is a lonely, incremental, non-linear path of perilous trial and error, full of disillusioning advice, gems from unexpected reservoirs, and learning to listen to a body that is crying out for care. I try not to be seduced by the good days, or the bad ones, into thinking I will recover, or I won’t, though I’m rarely successful. At times, I have cried out with necessary rage, that familiar refrain of the human ego: This isn’t fair! Why me?! I was an ostensibly healthy 37-year-old before this. I now identify more with the capacity of people in their 80s.

 

I’ve learned that the only certain thing about this illness is uncertainty. When will I recover? Will I recover? Will tomorrow be a good day? Or a bad one? Will I be able to go back to work? Will I have to go back part-time? To quit? The truth: I don’t know. Set to some kind of dry run for old age, my body constantly reminds me, with a perverse wisdom: Things come together. They fall apart. Things change. They are uncertain. We are fragile.

 

~~

 

On the heels of a flare-up, I blink open my eyes in the midst of an afternoon meditation. Ozzy plops down against the bedroom wall. Violet races in, cartoonish, hot on the trail of a ball that, to her great dismay, disappears irretrievably under the dresser. I watch them lodge into their nearby spots, two arrows on a compass with me at its center. A vague, all-encompassing emotion winds its way through me, settling into a swelling behind my eyelids before heaving and crowning into tears trotting down my face.

 

I need to tell someone. I want to tell Gail. When I’m sure the kittens have drifted in their dream worlds, chasing their imaginary insects and rodents, I tiptoe to retrieve my phone from a kitchen drawer and text:

 

My body is finally starting to

rebound … I watched Ozzy saunter

over to the sun spot in the bedroom,

his back slick with light like an

orange seal. And I watched Violet

fall asleep with her paws under her

chin in the exact spot where her little

blue ball went under the dresser. I

felt how I can hardly bear how much

I love them, how much I love the

world and this life, and how much

grief there is, how hard it is to live

through a disease that fills me with

fear and robs me of my life force. I

feel so overwhelmed sometimes by

what it is to be myself, to let myself

feel, to touch how much I care, how

sad I am, and how in love. It feels so

impossibly vulnerable.

​

This is the smallness, and the bigness, of my life now.​