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Just Breathe

We each have a limited amount of time, that’s undeniable; the hourglass keeps running, nobody thinks about it, what matters is never knowing when the last grain of sand will reach the bottom. And what if we knew how many grains of sand we had left? How would our lives change? How would we plan our future? How would we behave and, above all, what view of the world would we have? Marco, who has cystic fibrosis, aged 29 years, diagnosed at birth, has always led a normal life — of course, by normal we mean the normality that someone with cystic fibrosis can face. His days are methodically marked out by work, physiotherapy and sport, the playful side of the latter. A few symptoms, written into his DNA, that take his breath away, that stop him from absorbing what he eats — basic needs for any body. His lungs fill up with “himself”, that very “himself” that could suffocate him. He calls himself a sand warrior: he fights against time, plans his future and faces everyday life light-heartedly, with a smile on his face. Therapy takes time away from his days, while at the same time exerting an anti-gravitational force on the hourglass, a temporal paradox. He doesn’t dwell on the bag of sand he was “shortchanged” from the start — what would be the point? Just Breathe is a phrase he would like to have tattooed on his skin, salty from too much chlorine: “I barely breathe”. He confided this wish to me while I was enjoying a cigarette after a coffee together. At present there is no cure other than to contain it; the path is the same for everyone: oxygen tanks and a transplant. He told me that all transplant recipients feel their breath as they have never felt it before in their lives, but even this has a lifespan, on average 7 years. Everything has an expiry date, everything has an average duration; despite it all, Marco, like so many others, faces life with strength, courage and at times recklessness, even showing a quiet pride in his tough armour that fights back against every attack.

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