Writing Through Long COVID
September 24th, 2024
Danial Neil always knew he wanted to be a writer. But after a seemingly mild case of COVID-19, writing – and many other elements of his day-to-day life – became difficult. In this essay, Danial shares his struggles since receiving his Long COVID diagnosis, and why the urge to write still wins over it all.
Sitting in the sun
like a potted plant,
listening to the traffic
through the trees
I cannot remember yesterday,
nothing new in my head,
I sleep as pieces of me fall away
Awareness is cruel –
the slow creep of dissolution
before annihilation
The “boys of summer”
think I hold it all, the long-ago
days when I knew everything
Now the past holds no comfort
because I am unrecognizable
in my dreams
Sitting in the sun,
a blank page – a pen,
and a prayer that my words
carry me through
I have always written, beginning with my Tarzan story in the Second Grade, which Mrs. Nixon read out to the class. That was something, foreshadowing perhaps. But that should be left alone because life takes so many turns that it would be difficult to plot the map of one’s journey. Still, some creative ember must have remained into high-school with forays into poetry, and then later, in 1986, when I made a conscious decision. I wanted to be a writer, a published novelist. I dreamt of walking along ocean beaches in euphoric inspiration, then sitting on a log with notebook and pen, creating stories, setting up my greatness. I will admit that I had a bad case of grandeur, naivete, and off-the-charts confidence. Thanks, Mom. As you can imagine, sending my first novel out to the publishing world put a quick and sobering end to that.
That is where the work began, the development of my craft. I continued on, undeterred, novel after novel. Rejection letters to paper a room. But I was afraid to quit. My dreams would never come true. Guaranteed. My personal investment in writing was relentless.
Until, finally, publishers took notice. I am fortunate now to have a publisher who believes in me. So, after writing 22 novels, I have six published novels, most in recent years. I am a writer. After all my hard work, I had arrived. Yet, it was this benign and somewhat proud affirmation that has proved to be my greatest challenge.
I experienced a mild case of COVID-19 in the fall of 2022, and wasn’t overly concerned. I managed it well enough at the time, but strangely, symptoms lingered, symptoms that are still present today; unrelenting nausea, dizziness, fatigue, planning and organizing deficits, memory lapses and confusion, cognitive impairment, and moments of utter despair, all frightening and life changing. I joined the estimated 3.5 million Canadians suffering from Long COVID. There are no treatments in Canada, no cure. Doctors do not know what to do with me. They are perplexed, caught off guard. And the impact to relationships cannot be overstated. For partners, it is devastating to witness: the up and downs, the cruel undoing of their loved one, and the caregiving they are left to face.
At first, I just wanted to get through it, wait for the disease to take its course. Months went by – hearing news of “long-haulers.” I wasn’t going to be one of them. I have to write after all. I can’t stop. So, out I went, no longer contagious, of course, and not understanding what was happening to me, to write at my favourite coffee shop where I always write. The noise never bothers me. I don’t like the isolation of writing at home. But soon, I became aware that something wasn’t right. After writing for an hour, I felt tired, far more than would seem reasonable. I was used to writing for three hours without looking up from my table. I didn’t understand it. I learned that it was PEM, Post-Exertional Malaise, commonly associated with Fibromyalgia. It wiped me out. Yes, any energy expenditure, physical or mental, could bring on a crash. It grew worse. My writing slowed. My output began to shrink. Yet I managed to finish a novel while dealing with Long COVID, Song of the Sea Wolf. A great accomplishment. At least, the inflammation does not seem to be attacking the creative part of my brain. Oh, but I still had terrible fatigue as it takes great energy to write. And, I still don’t understand how I could write a novel but could not plan a dinner or remember where the spoons go.
And as this year began, my symptoms of Long COVID continued to get worse, but I needed another novel. That is when I heard it, a crushing question from my inflamed brain. Are you prepared to lose the ability to write? No, I lamented. I have to write. Yes, my enduring mantra. That is who I am. Then, immediately, another question, the profundity of which, shook me to my core. If I am not a writer, then who am I? That has been my personal struggle up to this day, sorting out who I am from what I do. It is not an uncommon error, and most of the time we are unaware of our many identifications until we lose something, or are threatened with losing something. We learn through struggle, adversity, and grieving for who we once were, that we are much more, and not limited to what we do, or achieve.
I am fortunate that my last two novels with NeWest Press, Dominion of Mercy and The Sum of One Man’s Pleasure, were written before I became ill. Now I have a new novel underway, The Hockey Player, ambitious in scope, and rife with complexity. The challenge is not new. I love research, story and character development. But I needed a new plan, a new way to approach writing while managing the fatigue and crash cycles. I worry about cohesion, all the elements of good fiction. Where to start?
My grandfather was a great hockey player in the Boundary District of British Columbia, playing for Provincial Championship teams in Rossland in 1908, and in Phoenix in 1911. I wanted to write a fictional account of his journey, a story that I vaguely know, only that he was born in P.E.I. in 1887, and as a young man, left to play hockey for the mining companies of B.C. I have photographs and archival newspaper material, but no comprehensive story. So, I began my story in Prince Edward Island in 1906, and at once I realized, with great difficulty, that I couldn’t separate my fictional protagonist from my grandfather. After four months I finally managed to create a character, complete with his own identity and conflicts, who will follow in the footsteps of my grandfather, even become him at times where archival details will allow.
The research is proving to be an extraordinary challenge. The demand on my brain is crippling. Scrolling through the extensive details of history on my phone, the movement of eyes, information, all the necessary details, leaves me light-headed and exhausted. There are moments when I struggle to stand, and steady myself before leaving my table. Legs cast in concrete. My profound pleasure of writing has its consequences, even with careful time management. I set the timer on my phone for fifteen minutes. The plan is 15 minutes writing followed by 15 minutes resting. And at times, unbelievably, I continue to write without stopping. It takes a great deal of will to reset the timer, and stick with the program. Over and over. Some days it feels like the aperture is closing, but that feeling drives me onward, as if I need to complete something before it all ends, closes for good. Perhaps it is that very thing that keeps me ill. I don’t know. But then again, I convinced myself that writing exercises my brain, the mind, and keeps me in the game of life, so to speak. Long COVID or not, I am a writer. One step forward, on and on, always.
I wrote this closing paragraph at Piper’s Lagoon in Nanaimo, B.C., sitting on a log on the beach, writing in my notebook. And as I looked across the Salish Sea to the Coast Mountains, and to the sky, so blue and perfect, I realized that I was doing what I always wanted to do. I still feel grateful in spite of it all. You see, some dreams do come true.
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