'What I want are recovery narratives': CBC Radio host Gill Deacon on life with long COVID

Gill Deacon is the host of CBC Radio's Here & Now. She went on leavein December 2022. This piece is about her ongoing absence.

"How's work?"

The cashier is a former neighbour, someone I haven't run into in years. We make small talk through our masks at the checkout. "I'm on medical leave right now," I tell her. "I have long COVID."

Her eyes widen as panic takes over the top half of her face; she reflexively reaches to tighten her mask around her nose.

As she steps back slightlyit occurs to me that she doesn't know what long COVID is, that it isn't contagious. And who can blame her? Like so much about the virus that hijacked our sense of normal in 2020, we're still scrambling to learn and catch up.

Research continues. Periodically, promising breakthroughs emerge most recently, evidence of a lack of serotonin in many long COVID patients.

In the meantime, the roughly 1.4 million Canadians suffering through long COVID's otherwise mysterious punishments wonder whether they'll ever feel normal again. I am one of them.

Long COVID was the thing I feared the most throughout the pandemic. As reports began to emerge of a strangely long-lasting version of COVID-19 preying on once active, healthy people and reducing them to limp noodles of achy fatigue, I doubled my resolve to avoid it.

The looming spectre of long COVID was the reason I diligently counted to 20 while washing my hands, why I kept updated on vaccinations and wore a face mask in every possible indoor space.

A few days in bed with a nasty fever didn't scare me, but the thought of longer-term organ damage leaving me with some kind of debilitating, indefinite condition made me shudder. My biggest fear became my months-long reality.

The struggle to get a diagnosis

Two summers ago, my otherwise healthy heart began erratic pounding atrial ectopic beats, the cardiologist said at the time importunate misbehaviour at all hours of the day and night.

I soon developed other symptoms I initially mistook for a flu. But no fever, nor any other signature COVID symptom. By all measures, I was COVID-free.

Which is why, when I began to feel a peculiar salmagundi of symptoms, no one thought to look under the COVID rock for the key. Instead, I felt more and more like a hypochondriac with every visit to my family doctor.

My sinuses hurt but my nose isn't stuffed up or runny.

Sinusitis virus, they said.

I'm thirstier than usual.

Test for diabetes, they said.

I have no energy.

Blood work and ultrasound of thyroid.

My stomach often gurgles and cramps after I eat.

Refer to gastroenterologist for endoscopy.

The top of my head is chilly, tingly, and I wear a toque day and night.

Rest, they said, it's a virus.

Eventually, the discomfort became untenable, and by December 2022 I had to leave my work as a CBC radio host.

I became that overcooked noodle human, coiled and listless on the nearest horizontal surface, trying to remember why I ever enjoyed talking to people, watching the dust collect on the weights I once lifted. Ignoring the phone.

Blood work, urine tests, X-rays, endoscopy, electrocardiogram, Lyme disease all test results have been clear.

I never knowingly had COVID never had an acute case, never felt the slightest twinge of any symptom. I took what seemed like a million PCR and rapid tests, but none ever bore more than a single stripe. I never blew my nose, never coughed, never lost my sense of taste. I sailed through COVID unscathed, or so I thought.

After many months worrying and wondering about my panoply of ailments, as confounding as they were debilitating, a nucleocapsid test in March confirmed the presence of natural COV-2 antibodies.

Living the long haul

My heart continues to pound unreasonably. Thunderous as I sit still in morning meditation, boisterous as I recline reading, perhaps most rambunctious when I sleep.

I am awoken by its sudden hammering, and nothing I do settles it. Deep breathing and mindful techniques have no sway here. This heart is like a puppy who hears a trainer's command, considers it briefly with a fiendish look from the corner of an eye before bounding off to tear apart the furniture.

I am left with no choice but to lie awake for hours, waiting until it has shredded all the pillows and is finally weary enough to collapse, exhausted, in a pile of stray feathers. Only then am I allowed to do the same.

It can be a challenge to stay present, to not grieve what I have lost or bemoan what has befallen me. I take it, as the banal but truthful platitude goes, one day at a time.- Gill Deacon, CBC Radio host

There is also a queasy wave of nausea that seems to begin in what's left of my quad muscles, after months of no exercise, before sweeping through my gut, where it is met by the achy pain that runs from the back of my head and sinus cavity down past my racing heart and rattles through my digestive tract.

There is a constant ringing in my ears, like I'm wearing a bathing cap of cicadas. The bottoms of my feet scream at me in cranky pain, as though I've lit them on fire.

When I feel a wave coming on, I need to close my eyes, double over, and make everything around me stop. I retreat to my bed, or pull a hat down over my eyes, or ask my loved ones to stop speaking so loudly, or all of the above, with an impatient snap thrown in for added foulness.

Long COVID is an electronic keyboard being played by a young child on a sugar high, whamming their little fingers onto each button to see what it does reverb, distortion, drum beats, delays.

Dr. Kieran Quinn, an internist and epidemiologist, put it in more medical terms in the Canadian Medical Association Journal earlier this year. He says there are anywhere from 100 to 200 symptoms of long COVID (hence the challenge of diagnosis) but pretty much every possible combination of symptoms is debilitating to some degree.

The road to recovery

In retrospect, I was an unlikely unicorn.

As someone with a history of multiple cancer diagnoses, who had completed chemotherapy treatment in the same year COVID-19 raised its fervid head, who lived in a household with school-age teenagers and socially active twenty-somethings I had assumed I would be a more likely target. But clearly, whether you know you have COVID or not, you can still become a long-hauler.

As of this writing, research suggests that between 10 to 15 per centof patients who contract SARS-CoV-2 are at risk of developing long COVID. So for every 10 people you know who contract the virus, knowingly or otherwise, one may become a long-hauler.

Podcasts and publications about long COVID are consistently grim in tone: Joanne was a healthy veterinarian and mother of four who ran marathons, now she spends her days on the couch

I don't need any more of those stories I am Joanne.

What I want are recovery narratives, evidence of light at the end of this tunnel of uncertainty.

So let me with cautious optimism go first.

Since March, I have been working with a physiotherapist who specializes in long COVID rehabilitation. They monitor my resting heart rate, heart rate variability and blood oxygen.

They track my symptoms and set limits for my energy expenditure; I now live within a calorie budget, not for what I'm allowed to eat but what I'm allowed to burn with activity.

Slowly, methodically and painstakingly, I am able to do more. I can walk, grocery shop, cook meals, talk to more than one person at a time, and climb stairs without stopping.

It doesn't add up to the energy and exuberance of the life I recall living, but it is the life I have now and I am grateful for every increment of progress. Improvement is measured in months, one specialist told me, not days or weeks.

It can be a challenge to stay present, to not grieve what I have lost or bemoan what has befallen me. I take it, as the banal but truthful platitude goes, one day at a time.

Sometimes, when by good grace I can summon a positive perspective on all this, I remind myself that learning to sit with uncertainty is a surprisingly powerful skill.

Somewhere in the ongoing monotony and discomfort is a lesson I'm trying to learn about appreciating goodness when it presents itself, about looking harder for it when it doesn't, and being open to whatever comes next.

In the meantime, to my fellow long-haulers: hang in there. We'll get through.