This is Happening

And other things I learned from long Covid.

Long Covid—a condition through which I suffered for close to two gruelling, lifeless years—is a lot of things.

Here are a few that come to mind:

1. A largely misunderstood medical condition for which there is currently no known cure, treatment nor diagnostic test.

2. A terrifying loss of energy, comfort, sociability and other things too often taken for granted.

3. (the only one for which I am grateful…) A crash course immersive bootcamp in getting more comfortable with the unknown.

A brief recital of unknowns that looped through my brain for months:

What is the matter with me?

How much longer will these symptoms last?

Why can’t any doctor tell me what’s wrong?

Am I dying a slow and mysterious death?

Will I be able to work anymore? Laugh with friends? Climb stairs without gasping?

Will I ever feel like myself again?

These were questions for which there were simply no answers.

Ursula K. LeGuin said, “To learn which questions are unanswerable, and not to answer them: this skill is most needful in times of stress and darkness.”

But we like to have the answers, don’t we?

Without even realizing it, most of us are attached to a series of certainties and expectations. We wake up each day, plant both feet on the floor and begin following a sequence of steps that lead us toward outcomes we have grown to rely on: water will come out of the showerhead, food will provide energy, the subway will deliver us to work (I’ll concede that Torontonians have long stopped relying on that one), dinner plans start at seven. When a given day fits within these familiar parameters, we feel relief, if only unconsciously; seeking safety in certainty is after all an evolutionary function. That control and predictability are misleading, of course, but the illusion is comforting nonetheless.

We tend toward these familiar narratives in order to limit the discomfort of other possibilities unfolding, things we hadn’t anticipated which might throw us off. If the water is cut off you can’t shower; if the subway is closed you need a new route to the office; if dinner plans get canceled you’re left with your own company. Those are potentially aggravating, uncomfortable scenarios we’d rather avoid so we prefer the ease of certainties.

How ironic that humans have evolved such a strong desire for certainty because life just can’t deliver on that one. No amount of planning or investing in an imagined future guarantees against unknowns. Loss of control comes for us all.

Sick with an erratic and mysterious set of debilitating symptoms for month after month after month, I lost hold of any sense of predictability. My body felt unfamiliar, my routine utterly upended. Food gave me no energy, sleep provided no rest, doctors offered no answers. (Except for one, whom you’ll meet in my next post…)

Long Covid was not, sadly, my first encounter with a mighty disruptor. Two previous rounds of cancer treatment—a decade apart—were the most instructive experiences of my life. As my body got pummeled through all these medical challenges, my mind got stronger. I learned what psychologists call radical acceptance. Resisting the discomfort of my poor health only made it worse. Pining for my formerly active self, or wishing for a future self who wasn’t suffering were exercises in futility.

In the spirit of radical acceptance, here’s a radical thought:

What if having problems isn’t a deviation from the life we thought we were supposed to have? What if there is no supposed to? What if finding a way through hard things is the life we just have?

This is happening, life continues to remind us.

The Tragically Hip had it right (of course they did!): No dress rehearsal. This is our life.

This life of ours continues to deal mixed hands, and we have made it through a lot. You, me, society—we have managed all manner of challenges up to this point, many of which felt insurmountable at one time. Our ability to handle pressure and critical situations is important to remember as we sit in the discomfort of something hard or uncertain right now.

In the meantime, what does that look like, being okay with not being okay?

How, I asked myself while I was sick, can I learn to sit in the uncertainty of not knowing what is the matter with me and whether I will ever recover?

That is a question for which there is an answer:

What happens to us is almost entirely outside our sphere of influence. What we do with what happens to us, the attitude we take toward our challenges—that’s all ours. As the Stoic philosopher Epictetus wrote way back in the first century: It’s not what happens to you, it’s how you react to it that matters.

It’s an approach I came back to again and again during my struggles with cancer, and with long Covid. Even now, fully recovered and enjoying the life I once feared was gone, it is a guiding principle for coping with uncertainty.

Stay present with the hardship: feel it, name it, don’t push it away. If it sucks, let it suck. Remember other things that have sucked that you’ve endured, and remember that the illusion that you are the center of the story and you get to decide where things unfold from here is, well, hubris. And it’s not helping.

To quote French philosopher Voltaire, “Doubt is an uncomfortable condition, but certainty is a ridiculous one.”

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Also on the long Covid front…

I am so thrilled to be able to say I am 100% well again and back to living a full and vibrant life (yeehaw!)

People suffering with long Covid need hope. And medical research to fuel that hope. So I’ve shared my story of recovery for Sinai Health Foundation. I also interviewed several people who have made enormous progress in their long Covid recovery. The full video series launches this week, but you can find out more information here.

A lot of people have asked what exactly I did to get better. I am starting to get more queries than I have time in the day to reply to so I am working on a public post with all the information. Stay tuned…