From the moment we breathe our first breath numbers assign themselves to our existence. Our lives forever in tandem with a changing yet unmovable system that defines our days and silently seems to set a value upon our lives. Some remain a marker for our lives - bound by a memorable and meaningful moment reflected in a set of digits for all our days, while others are like a steady ripple in which cannot be contained to a single moment.
A Disease in Numbers
My life with CF has been bound and defined by numbers. The very basis of cystic fibrosis realized within an abnormal sweat chloride level which diagnosed me at just one month old. I reflect back upon the years and realize how much of my life has been and continues to be influenced by numbers: test results, lung function scores, baselines, trending outcomes, life expectancies, dosages, weight, and time that seemingly feels as if is merely slipping through my fingers. Every number a reflection of a disease that I feel I cannot control. A disease that makes me feel as if I’m clinging to the side of a mountain that just keeps getting higher and the terrain more steeply unsteady - unforgiving beneath my feet.
While there are many numbers associated with the progression of CF and its stability, lung function is one that is closely monitored throughout one’s life with CF. It’s one that can make you feel as if the very life that fills your lungs is being unfairly stolen by your own body. That simple number can silently say so very much - whispering words of depravity formed from a lie that this life you live isn’t your own, but instead belongs to an unchangeable circumstance called cystic fibrosis.
The Landscape of These Lungs
Those numbers and scores mean something different to each of us, and in classic CF form, they feel different to each of us. I don’t love to talk about numbers as they don’t always clearly reflect how we feel, nor do they translate equally from person to person. There are so many variables when it comes to a person and how CF impacts them, and the mountains we must each climb which reveal their own unique obstacles. I simply do my best to be grateful for every breath I am given - seeking always to enjoy the beauty from within its gifted view.
I’ve been incredibly lucky that my life with CF has been, in part, pretty stable these last few years. Meaning, that over the course of the last 5 years, outside of some tough exacerbations and hemoptysis issues, my baseline for lung function has hovered between 45-50%. My lung function is something I’m so intrinsically in tune with as my very profession and passion are impacted by the unforgiving landscape of these lungs. I’ve desperately done all I can to continue to hold onto every breath I am given, while slowly feeling any hold I have upon my own body begin to slip within the last year. My tenacious grip losing its strength as I cling to unpromised stability. This body working harder - more unforgiving to the demands I continue to thrust upon it. Daily, CF reminding me of the life it thinks it owns. A life I wish to own every part of and live bravely beyond its perceived limits.
I’ve been incredibly lucky that my life with CF has been, in part, pretty stable these last few years. Meaning, that over the course of the last 5 years, outside of some tough exacerbations and hemoptysis issues, my baseline for lung function has hovered between 45-50%. My lung function is something I’m so intrinsically in tune with as my very profession and passion are impacted by the unforgiving landscape of these lungs. I’ve desperately done all I can to continue to hold onto every breath I am given, while slowly feeling any hold I have upon my own body begin to slip within the last year. My tenacious grip losing its strength as I cling to unpromised stability. This body working harder - more unforgiving to the demands I continue to thrust upon it. Daily, CF reminding me of the life it thinks it owns. A life I wish to own every part of and live bravely beyond its perceived limits.
To be continued….
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