1500 days of Long Covid | Courage, Cowardice and The Troll.
Never in my life have I danced with the idea that I might be a coward. I never shied away from the thought of solo travel in a different continent, asking the pretty girl at the club for a lighter, standing up to a bully, doing music exams as a kid or even presenting to 200 peers “10 OK reasons why you should vote for me as head boy”. I always did the thing I was most scared of doing. I appreciated the delayed gratification of courage, of being brave. I have my parents to thank for that.
Until Long Covid there was never a good enough reason why I shouldn’t do something. Even when the cons outweighed the pros, it didn’t matter because, at the ripe ol’ age of 18, I’d learnt that challenge builds character and often made for a great story.
I believed courage to be the biproduct of doing a scary thing; act first, courage later. Anyone that has done anything even moderately scary, did it scared: the girl at the bar, you knew she didn’t smoke (neither did you), the high school bully, you knew there was a chance you’d walk away with a black eye.
Yet despite knowing the risks, many of us were accustomed to taking these incrementally greater leaps of faith. To test our bungee cords for failure, I believe, is what makes us fundamentally human, alive even.
I know now that at the heart of all these decisions was unwavering capability. The fundamental ability to do whatever I wanted because — like a bungee cord — whether it ended with a black eye or in a swift “I’m taken…”, I’d be able to handle it, I had the capacity to be wrong, to bounce back.
The art of bouncing back was either a funny story the next morning or a lesson learnt; either way it became an integral part to the building blocks of personality. Failure was a positive thing that I welcomed. My bungee cord for error was tight, and I knew that even if I hit the water, I would inevitably bounce back, ready to jump another day.
However, my 1500-day long battle with Long Covid has taken away my ability to do exactly that, to get things wrong. Why? Because it’s stripped me of the capacity to do so. I didn’t expect to one day wake up with Chronic Fatigue, or POTS, or Dysautonomia. These conditions manifested after a silent war of attrition I waged for months, if not years, post infection with my body before I realised that even the strongest bungee cords fray eventually.
It began with a nagging sense of fogginess, nothing more. “Life is to be lived,” I told myself as I strapped my feet to the erg machine at 5am, initiated foreplay, pulled an all-nighter on that overdue essay whilst gulping a Red Bull. In retrospect, these small but human acts I was used to bouncing back from were now in fact feeding a hidden enigma yet to reveal itself to me as each misstep secretly nourished what I now regard as the ‘Long Covid Troll’. Slowly but surely, this Voldemort-like entity began to take food not only off my plate, but away from my being,
Ego
Moral compass
Relationships
Dreams
Body composition
Hobbies
Politics
Family
Work capacity
Friends
View of the western medical system
Diet
Wealth
My definition of wealth
Splash.
It took two years of naïve mishaps before the Troll’s appetite for disability, fuelled by my innocent blunders, could hide no longer and my bridge of health collapsed under its presence.
For many of us, our journey with chronic illness begins with denial. Even face-to-face you deny the Troll’s very existence as it sits there unfazed by your arrival, mute and unmoving. Denial turns to panic, panic to anger, and anger to sadness. The Troll didn’t do anything wrong; YOU were the one feeding it with your larger-than-life career goals and impressive gym routine, it’s YOUR bungee cord that snapped. You blame the Troll; you start pointing fingers at those still able to run across their bridge, the hate quickly turns inwards as life transitions from technicolour to murky grey.
An epiphany occurred, an epiphany that I could no longer afford to get anything else wrong at the risk of the Troll getting fatter. (Epiphany is a nice way of putting it, it’s closer to something of a car crash).
“Sorry lads, can’t tonight”.
“Do you mind if I sit down?”
“No sugar for me, or milk, thanks Mum”.
“Thank you for the job offer, but do you have 30 minutes to discuss your company’s disability policies?”
“Funny you should ask, 4 years sober”.
“Yep, still masking”.
“Please don’t bother waking me up tomorrow”.
“Yes, I’ve tried meditation”.
“It’s a nicotine patch, I’m just trialling something, don’t worry Dad”.
“Decaf if you have any”.
“Sorry, brainfog”.
“Your Amazon order containing this week’s new-last-hope is 8 stops away!”.
“We’ll see!”.
Life with Long Covid becomes an excuse in and of itself:
Everything you love is nobly put on hold in an attempt to starve the Troll as your world shrinks down to a pinhead. You feel like a coward, you feel like you’ve let the Troll win. You fumble with the remote, looking for the button that allows you to pause and fast forward at the same time, to hasten the Troll’s death and relinquish its control over your every move.
For 2 years I looked for this button as I kicked the broken planks at my feet questioning why of all the years it chose to neatly coincide with my time at university. But is it really the Troll that I want dead? Or do I need to put my focus on rebuilding the bridge? Yes! Rebuild the bridge! I eventually hit play.
Each year since 2020, around spring, I’ll spend months constructing ladders to leave, rafts to escape, spears to fight back, but almost always do I end up with my hands full of splinters and little to show for it. Unable to fight or flee, I flail at my support network, “I don’t have the tools!”, “I can’t escape the way I know how”.
But maybe that’s the point.
I don’t want to give this disease meaning; it sucks and offers only pain. But if it has taught me anything, it’s that if life cannot be lived as we wish, then it must be endured. Everyone’s bridge collapses at some point, so why not mine now? What makes me special? The truth is, nothing. We’re all the same, we all have a Troll of sorts under our bridge and we all think our spears will be sharp enough should we need them.
To be honest, I don’t know how to bring this to a close because my Troll, (granted much slimmer than when I found it) remains sat in front of me even as I write this. What I will say though is that this must be what courage looks now, not some fleeting moment of bravery, but practicing the grace to accept that not all bad situations are fixable overnight, and that I am only as strong as my ability to keep waking up regardless.
Long covid has taught me that I am able to do at 23 what many spend a lifetime fearing:
Going toe to toe with their Troll.
