The armrest on the bus was stabbing me in my side. The seat on the small van was too small
Long Covid is Rewriting the Final Chapter of My Life
Slow Brain Death
My father had a truly remarkable brain, with a textbook eidetic memory. He just never seemed to forget things. I remember I used to test him by showing him long strings of numbers or nonsense and asking him to remember them. Weeks or months later, I’d ask him to recite them back to me, retrieving the paper I’d originally written them on from wherever I’d hidden it to check. He never flubbed. It’s how he came to be fluent in six languages and helped the family to never forget any acquaintance’s birthday. Once I re-found such a note that I had hidden more than three years earlier, and when prompted he reliably chimed off a forty character random alphanumeric sequence he’d seen once as casually as I’d remind a friend of my street address.
Familiarity makes whatever circumstance we grow up in seem perfectly normal to our childhood selves, so it was only years after his death in 1980 that I really started to grasp how remarkable he was. Believing that his retentive capacity was normal, I had done all in my power to condition my brain to be the same kind of steel trap. I didn’t have an address book, I just remembered a bunch of phone numbers. I rarely took notes in class, I just retained what I heard. Decades later, some obscure science topic would come up in conversation and I’d instantly recall relevant studies, citing the author and publication.
I grew up poor, not particularly handsome, and unathletic. Being the guy who knew things and could explain them tied itself deeply into my core sense of identity. As much as possible, I liked being one of the smart people in the room with knowledge to contribute.
Today, more than a year after the one Covid infection that caught up with me despite maintaining the precautions the society at large around us can’t be bothered with, I’m hyper aware of a brutal flaw in my approach. I never developed the necessary habits to keep well organized records outside of my cranium. The filing system inside my head was more than good enough for decades.
Now it’s hit and miss. Some days the brain fog is a clinging miasma and I can’t keep two things straight in my head at once. The architecture of my intellect is crumbling beneath me. Intermittently, my brain will once again fire on all cylinders and I return to my full self.
It means that I can still be totally on the ball every bit as much as I used to be, but only in short unpredictable increments. Instead of making a giant cup of tea and plowing through a complex technical review for however many hours it takes to reach the end, I have to circle back to nibble away at it whenever I’m briefly capable. It also offers me brief opportunities to be fully conscious with horror at what I’ve lost. I imagine temporary periods of clarity for Alzheimer's patients feel similarly gut-punchy.
But it’s human nature to adapt to changed normals and evolve our baselines of expectation, so I’m also looking for upsides to make peace with it. After decades of perpetual awareness of looming ecological collapse, an entire day went by recently where I completely forgot to feel anxious about it. My bowdlerized cranium lacks its usual headful of screaming doubts. I sit by the window next to an engrossed cat, as fascinated as it is by the efforts of a squirrel to chase away an entire flock of magpies and several ravens who have hopes of collecting for themselves some of the bounty of nuts I scattered to prime the cat TV. It’s peaceful. Simple. There’s much to be said for that.
It’s a ticket to a destination previously unthinkable: a vacation from my regular self. That I can’t schedule. Or opt out of. Or predict. But still, occasionally a relief to set down the cosmic-scale weight I settled on my shoulders ages ago without any game plan for ever slipping out from under it.
And when it’s awful I remind myself I’m so grateful this personal crisis only came to me now, when entering involuntary semi-retirement isn’t necessarily a hideous doorway into instant homelessness and starvation. My partner and I have just enough resources to theoretically limp along for some years to come. I can still be useful in the garden, especially with my still whip-smart sweetheart to productively direct me. My offspring are capable adults now getting by perfectly well without me, more or less. The period in my life when a toddler’s well being required me to pay consistent attention is too distant to see in my rear view mirror.
Although there are medications I can try to offset the ongoing degradation of my memory, Long Covid research is in its infancy. More to the point, their known side effects include the possibility of worsening the still undiagnosed occasional blackout/seizure disorder that brought me to see the neurologist who recommended them in the first place. With right wing politics undermining and dismantling Canada’s once-strong public health care as fervently as they double down on oil futures, I’m also reluctant to increase my dependence on it. So I’m trying to cooperate with reality.
This is what surrendering to the pandemic means around the edges of the statistics, where people live. It’s not just the broad strokes and the sudden deaths. It’s land mines lying silent beneath the surface of a loved one’s heart or brain or immune system, waiting to be stepped on in a biologically wrong footed moment. It’s whittling away at the already blurry space between functional and disabled, taking away an hour here and a day there from those who don’t lose all the days they had left all at once. It’s not a completely brain damaged world but certainly one with less glittering intelligence, steadily expanding deficits in attention and compassion and ability. The proverbial death by a thousand thousand cuts, each of which diminishes someone while a legion of the furious berates us for mentioning it. Not all bang, not all whimper, but all attrition. Tiny things steadily add up.
I imagined for decades that my final hours would likely be somewhere on the front lines of the environmental and social apocalypse. I’d be picketing a new pipeline and one of the types who sent me threatening hate mail over a lifetime of climate activism might finally spill my precious brain on the sidewalk and then the rest of the climate story wouldn't be my personal problem any more.
Now it seems that I might go gentle into that good night after all, trickling over the threshold into the darkness one synapse at a time. So sneaky that even I myself might not notice it. Mortality comes for us all, but all sorts of different potential deaths crowd around, waiting in the wings, until one of them finally takes centre stage to bring down the curtain, and only then do we know which one. An invisible race between alternate dooms has commenced. Will an insurrection of some part of my own body end my story before civilization collapse breaks down my door? Will some quintessential part of what makes me me, or at least played a starring role in how previous versions of me thought of myself as me, drip away as lost fuzzy brained moments accumulate? First a dot, then a puddle, soon a lake, an abyss in which the old me drowns and what’s left lingers insensate, a burden for loved ones to carry?
A different fear from others that previously besieged me, yet just as meaningless to lose sleep over. I can nudge the odds with my actions, but in the end I won’t get to choose. I have to play the cards I’m dealt.
Even my definition of death or loss ebbs and flows and changes. In periods of brightness part of me screams that I should be documenting everything, creating a chronicle or cautionary tale to enlighten some future generation that may never get to be. And in moments of great peace I feel akin to the compost pile silently mouldering at the back of the garden, transforming yesterday’s flourish of vitality into the basic building blocks of tomorrow’s new expression of possibility. Last year’s beans recycle into this year’s tomatoes on their way to becoming next year’s corn. Nothing there is lost.
Nature doesn't require us to be perfect. Only to grow. Only to adapt as well as we can to our environment. Wanting to feel like the smartest guy in the room is about my ego, not my value. The sum total of how much intelligence I can muster in any given day counts for a lot less than the uses I choose to put it to.
On the planetary scale, I don’t personally amount to much, and I really don’t even want to. While able I’ve sought to make my world a bit better by being in it however I could. A proposed environmental policy here, a moment of kindness there, a song, a story, occasional baked goods, compulsive wordplay. When still able, I continue. It’s enough.
Even the smallest joy or blessing remains better than none. A fleeting moment to celebrate. To savour in full.
It is the ephemeral nature of the blossom, its impermanence and fragility, that contributes to its beauty and emotional power.
Today, at this moment, my younger mind gallops within me like its old thoroughbred self, far ranging, full of stamina, making new connections, richly imagining, brimming with useful details. Confident it can pull the cart of reality behind it as long as it makes the effort to understand the physics of how the moment’s fulcrum turns.
It’s so nice to have you visit. Too bad you can’t stay.
I’d sure appreciate it if your address book could mistakenly fall out of your pocket in the hallway as you make your inevitable exit.