My long COVID odyssey

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Jonathan Garfinkel’s latest book is In a Land Without Dogs the Cats Learn to Bark.

I always knew if I got COVID it wouldn’t be easy. In part it was the diabetes. It takes me longer to recover from things: viruses, flus, infections. My travels – from the jungles of Mexico to the mountains of Afghanistan – have done their share of damage, including dengue fever and giardia. In recent years I managed to take care of my compromised immune system through a disciplined diet, good blood-sugar control thanks to an insulin pump and a continuous glucose monitor, and a lot of exercise. Triathlons and yoga became part and parcel of my self-care regimen. I was a passionate long-distance cyclist and swimmer.

In August, 2022, when I finally caught it in Italy, I had been led to believe – like so many of us – that COVID wasn’t so bad. And it’s true, the virus itself wasn’t anything I hadn’t experienced before. It felt like an intense flu, a raging fever and horrible cough that lasted five days.

Then the exhaustion set in. It took me 10 days to muster the energy to board a train home to Berlin. It was a trip I barely remember (it’s amazing what the body can do when the mind is absent). When I arrived back at my apartment, I crashed, hoping I would soon pass through the worst of it. I had plans to travel that fall for work, to visit family and to finish a new book, a PhD and memoir about living with Type 1 diabetes. After a few weeks languishing in bed, it became clear that I wasn’t going anywhere: I had the dreaded long COVID.

Of course, I didn’t call it that. I couldn’t admit it was happening. I just knew I was tired in an unfamiliar way. But to call it fatigue didn’t seem right either: It was a shattering of everything familiar. My body was no longer my body. The things that used to help me get by in a day – walking, exercise, rest – didn’t make a difference. In fact, they seemed to make things worse. What people call “brain fog” also seemed inadequate. It felt like a cognitive disability making itself known through a persistent dull headache. It felt like concussion, a state of permanent hangover. My memory was shot, I couldn’t remember where I’d put anything, inducing a sense of panic. Often, in the middle of the night, I’d find myself searching for my passport, as though looking for a clue to who I was. I craved order, though I didn’t have the energy to create it.

If I read or even tried to write, I’d have to sleep the rest of the day – perilous for a freelancer. For months I couldn’t walk more than five minutes without needing to rest. Groceries had to be delivered by supermarket or friends. Sometimes I stubbornly (and wrongly) believed I needed to train myself back into exercise. In October, three months after I had contracted COVID, I decided to walk to a literary reading 20 minutes from my house. The journey took two hours; I had to pause at park benches every few minutes (I took a taxi home). I spent the next three days in bed recovering. The fact I’d done a half Ironman a year previous wasn’t lost on me. I wondered: Am I even the same person?

***

For a time, I called my illness “Post-COVID,” then “Longish COVID,” then “Longer than I’d like to have COVID.” It didn’t matter what I called it; the symptoms remained the same. But the imprecision of language made it hard for me to grasp exactly what I was up against. The diagnosis of what we call long COVID is so unclear that words have failed us; even the term was created by the patients who live with it. When I went to see my diabetes doctor on Week 12 of my symptoms, she said she felt unqualified to help me, so she directed me to the Charité Hospital long COVID clinic in Berlin, a leading European research centre. When I downloaded the 20-page form for admission, I didn’t have the capacity to read through the document, let alone fill it out. I felt overwhelmed by the smallest things: making breakfast, running a bath, writing an e-mail. Doing one of these things in a day felt like I’d accomplished something. I was fortunate I had people to help me.

I joined a Facebook group for long COVID support and reached out to a few members for advice. After a year of struggling, and going from doctor to doctor, none of whom could help me (and many of whom refused to recognize that I even had long COVID), I remembered that a filmmaker and artist friend of mine in Montreal – Rebecca Blackwood – had been hospitalized with COVID back in 2020. When I contacted her, she told me she’d been living with long COVID for three years. So began a meaningful correspondence of our mutual ups and downs. Rebecca also shared current research, supplement tips and other practical how-to-get-through-the-day advice. (In Rebecca’s case, she couldn’t work for two years. By the time we spoke in 2023, she was back to work.) In many ways these conversations helped me accept my uncertain diagnosis. More than anything, she helped me feel less alone.

Rebecca directed me to a leading long COVID researcher, Dr. David Putrino, a neuroscientist who is the Nash Family Director of the Cohen Center for Recovery from Complex Chronic Illness at Mount Sinai Hospital in New York. During the first wave, Dr. Putrino was on the front lines in the city, as many health care workers were at the time. He started to notice that after two months of diagnosis, a significant number of people still were not recovering from the virus. This made him interested in what came to be known as long COVID. It also drew him into researching postacute viral syndromes in general, drawing a link between illnesses. He started the clinic, not only to treat long COVID, but also those suffering from Lyme disease and other chronic tick- and vector-borne illnesses, and chronic fatigue syndrome (ME/CFS). Postacute viral syndrome illnesses are complex and oft misunderstood because of the complexities of their origins and astonishing variety of symptoms (as well as the subjective reporting of them). There are those in the medical community who don’t even acknowledge these as real diseases.

I wanted to know: What was this overwhelming fatigue? What was behind this compromised way of thinking? Would I ever get better? Could I write again? While Dr. Putrino’s answers were never conclusive – he offered theories that are still being debated and researched today – I learned that only 20 per cent of people with long COVID ever make a full recovery. That to live with it – for many – is to live with a chronic illness. The World Health Organization estimates that between 10 per cent and 20 per cent of people who have been infected by SARS-CoV-2 develop long COVID. In December, 2023, Statistics Canada reported that about 3.5 million Canadians had experienced long-term symptoms from COVID, with about 2.1 million still living with those symptoms.

I also learned that long COVID affects people in different ways: some in the gut, some in the brain, others in the nervous system, others in the bloodstream and lungs. Dr. Putrino warned me that any COVID virus – no matter how light the infection – can lead to further complications years after the fact. Most importantly, I learned from him the importance of trying to manage one’s energy on a day-to-day level.

“I try to teach patients about the importance of pacing,” he once said to me. “Will I make it up this hill? How many e-mails can I write today? With any postacute viral syndrome, one always has to make such calculations.” Pacing, he added, did not mean living a different, better lifestyle. “It is a sacrifice, a compromised existence. It’s a way of managing long COVID, but it is not a cure.”

***

Over the past two years, I found my own ways of pacing. I turned to literature. Reading has always been a kind of salvation for me. It is an act of comfort, a gesture toward familiarity. But reading with long COVID has been a completely different experience with language.

Often, I couldn’t retain the content of the previous sentence. I would gloss over words, vowels and consonants almost familiar, meaning eluding me. But I read anyway. It calmed my overstimulated brain by forcing me to focus. In the first months in particular, I read many books, many of which I don’t remember, whose purpose was mostly to induce relaxation and sleep.

But when I turned to Emily Wilson’s translation of The Odyssey, I did something different. I read it out loud. Why did I read it out loud? I’m not exactly sure. Maybe I believed it would give me a new chance at meaning. Maybe I could retain a few words through pronouncing it to myself. Perhaps I would learn to say the unsayable and thus find a way forward. One thing is certain: Literature has been instrumental toward my partial recovery toward writing again.

While The Odyssey was written by somebody (perhaps Homer), it challenges our contemporary notions of authorhood: It was the culmination of the stories of oral poets passed down through the centuries. I wonder if there is something to be learned from the oral tradition. Maybe, in enunciating the written word, something inside me started to awaken. I would read, fall asleep and dream of Homer. When I woke up, I would talk about it with my girlfriend. It was all I wanted to speak of. It was this book that began my journey of slow transformation. Reading became the travelling and adventure I missed; my life became The Odyssey. I was Odysseus trying to get home, trying to get back to himself. Often, after reading The Odyssey aloud, I would fall asleep and dream the sentences of the book. I was in the sea Odysseus travelled through, doing the thing I loved and missed most: swimming. But the sea was dark and frightening in my dreams. Sometimes I fought it; I would wake up sweating and short of breath. In time I learned to slow myself down, not fight, and live in the slow underwater perambulations. I learned to swim in new ways.

Living with diabetes, I have come to understand that the experience of chronic illness is often a do-it-yourself affair: One needs to learn to find ways to live. The medical community, while proficient at discovering important medicines and gathering data, is in short supply when it comes to how to live day-to-day with chronic illness. I adopted this DIY approach toward long COVID. Somebody recommended a doctor at a clinic in Kreuzberg, someone else recommended a Chinese doctor, another recommended a massage therapist, another a neurologist.

Rebecca told me about low-dose naltrexone, a drug anecdotally shown to be effective for sufferers of ME/CFS in small doses. I convinced a doctor to write me a prescription, went to a compounding pharmacy and got my medicine. A Facebook group of LDN users helped me titrate to figure out the appropriate dosage. One year later, I continue to use LDN on a daily basis.

Chronic illness is a world-changing event. With long COVID, I have needed to learn the new language of my changing body. There were days I cried in desperation, wanting an escape. Other days I learned to appreciate the smallest things: the light in the leaves outside my window that seemed to mirror the music I listened to. A conversation with a friend. Tenderness.

Six months into long COVID I found myself able to write again for short stretches. Ten minutes here, 15 minutes there. I learned to listen to my body’s needs. Every few months I would declare to myself or those close to me that I was through the worst of it. Every few months I would find myself sinking back into exhaustion, a crushing world of fatigue. But I got up again. In time, I could walk to my favourite river and forest. I could read an entire book without forgetting its story.

I still cannot do intense physical exercise. I’ve experienced an incredible slowing down. I don’t want to say this is a good thing – I do not wish long COVID upon my worst enemies – but there is a grace in living with a body that demands slowness. How much time I wasted in the past, I have often thought, worrying about the things that take us out of life.

I like to believe it is my return to literature that saved me. If reading is a slowing down, then there is value in its ability to move us toward nuance and thoughtfulness. So too is the gesture of writing. Before long COVID, I often worried about the lack of value of words in a world with too many: X, Instagram, Facebook and TikTok have made the place of books feel like a nostalgic boutique industry in a world clamouring for voices to be heard. Long COVID helped me return to some of my original reasons for writing. Perhaps, more importantly, in being able to write again, I value this life in a way I did not before. And I hope to finish another book.