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I was turning a screwdriver to assemble a patio chair when I realized that nothing would ever be the same again. I wish I could tell you that this life-changing moment came while I was witnessing a vivid sunset or while my husband held my hand and stared into my eyes with love or while I snuggled with my dog. But no, it was while I cursed a screw that just wouldn’t fit in its threading. This mundane moment became the line drawn in the sand, between a time when I thought I would not live long enough, and a time when I thought I might make it after all.
In that moment, I became aware of my breath, and the clarity and depth of it, a feeling that was completely new to me. I realized that there was never a time when I could breathe this deeply without feeling crackles of phlegm, without a tickle that turned into a full-body cough. It struck me that the last 51 years were filled with increasingly short and shallow attempts to catch my ever-depleting breath.
I have cystic fibrosis (CF), a brutal lung disease that impacts multiple organs and promises a slow, painful progression that eats away lung tissue until you feel as though you’re breathing through a straw while your nose is plugged. Ultimately you find yourself on a waitlist for a lung transplant as a last-ditch effort to save your life.
I remember pausing, I stopped turning the screw and looked up to the sky. I sat with the moment – gave it space, as they say, to understand what that glorious breath meant. The profoundness of it. A clean breath. Breath of a newborn. Free of obstructions like phlegm, bacteria, depleted lung tissue, and dysfunctional cells. No longer riddled with garbage, gunk and fear and loathing.
CF is a rare disease, it’s chronic, and those who have it have waited a lifetime for a life-changing drug. Recently, a pill called Trikafta became available in Canada. It’s the close-as-we’ve-ever-been-to-a-cure drug that I took for the first time that morning.
The fact that I was so overwhelmed with the miracle of it all struck me as strange. I’m not one to use that word: miracle. My relationship with CF has always been precarious and fraught with conflict. I’m sick, but maybe not quite sick enough for my disease to be obvious. I’ve never been hospitalized since I was diagnosed at six, never been on an IV antibiotic like so many others, and certainly have never been on oxygen or waiting for a lung transplant. So, with all that good health and energy, I’ve always felt it was my duty to advocate for those who couldn’t. The ones who are breathless from walking. The ones who spend more than half the year in a hospital. The ones who anxiously wait for new lungs.
Every speech, every conversation I’ve ever had about CF has been prefaced with, “I’m not the best example of the worst of CF.” I would declare at fundraisers, “Don’t think of me when you think of CF, I’m incredibly healthy and lucky, unlike most of my friends. Think of their pain, their struggle.” I wore it like a badge of honour: I’ve never been sick so don’t pity me.
Yet, on that morning when the clear and beautiful breath came, I was simultaneously filled with joy, and with dare I say miraculous recognition. The recognition that for 51 years I actually have been sick enough. I have been short of breath, I have struggled, I have known more pain than I ever acknowledged. Isn’t that crazy? My lung function has always been low. Measured in Forced Expiratory Volume (FEV), a healthy person probably has an FEV of 120. I’ve been in the low 60s for a decade.
From the day I was born, I had broken lungs, a failing pancreas, weak bowels and a myriad of disgusting symptoms. As I grew older and the grinding down of disease continued these things got worse. Some days were worse than worse, and some days were bearable. This isn’t a disease where you are suddenly attacked and ravaged. It’s a disease where hour by hour the tissue breaks down in your lungs, the pancreas deteriorates, the bowels slowly become obstructed, and you just learn to live with it. Your brain adapts and you accept worse. Do your best. Get the meds you can. Take the treatments. And the grinding continues.
But days into taking Trikafta, I’m no longer short of breath climbing the stairs, I can hold my breath for a whole glass of water, I can sing longer phrases in the Adele songs and I go a whole day without a single abdominal cramp. Now I wake up quietly to birds chirping, I stretch my arms above my head, fluff my pillow and lay there, cradling my dog, rubbing her ears, watching the sun come up, no crackles in the lungs, no piercing coughing fit to force me out of the peace and quiet.
I’m still searching for one magical word to describe the beauty and the gravitas of my new breath. The only one that comes close is tingling. Every cell, every space in my body is coming alive. I’ve never felt this high, this grateful, joyful and yet serene at the same time.
After that first new breath, I never did get that screw to fit. I took a chance that it wasn’t too important. I decided to stop trying and just sit in the sun to take it all in. I decided not to think about the fact that CF will no doubt end my life, despite a close-to-a-cure drug.
Instead, I took a leap and reconciled myself to the fact that yes, I actually have been sick all this time, and I will always be chronically ill. But for now, I’ll no longer have to live with the worst of it. I can hope for the best. Therein lies the miracle.
Debra Mattson lives in Newcastle, Ont.
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