We are beautifully set within a framework of unique cells composed of unique experience and circumstance. They are a part of what makes us truly who we are and have accompanied us all of our days. Through the best of moments and the most difficult, they have silently helped us to become the person we are today. Our truth reflected in every single one.
The truth is, these faulty cells of mine are reflected in every beautiful part of my life. While I am not defined by CF, it undoubtedly is a thread that has helped weave the most beautiful tapestry. I’ve learned over the years that even the most difficult of moments boast a unique and transformative beauty that has led me to know the most meaningful existence - one wrought with grateful purpose and passionate people. This terrible thing that has caused so much hurt, suffering, and tears in my life has also been a stable, yet unpredictable presence throughout the course of my existence which has shaped me into the person I am today. It’s the only way in which I truly know this body, even if CF is its ruthless and irremovable tenant. The chaos of CF is a part of my framework. I only know my body gripped with suspicion, mistrust, and compromise - all which have influenced how I live to seek, see, and embrace the beauty in every breath I am gifted.
While CF is an unforgiving and destructive force that will always be woven within my framework, I can’t help but be grateful for these faulty cells and the beauty they’ve brought to my life. It's taken me many years to no longer try and run from who I am and the very cells that compose my entirety. On Saturday, when I held that first dose of Trikafta in my hands, a drug that aims to modify my existence at a cellular level, my mind raced with so many different thoughts and my heart churned in a tide of emotion.
A deep part of me couldn’t help but wonder:
“will I still be “me”?”
“What if I’m not, and everything I love and find so breathtakingly beautiful is lost?”
“What if I feel like a foreigner within my own body?”
“Will it be worth it if these cells modified to give me life, in fact, make me feel as if I have lost it”?
To be continued...
Feeling its Effects
- Day 3 -
I’m grateful beyond words for this life-changing opportunity and the potential to know more of life’s beautiful possibility. It’s one that is constantly on my heart and one in which forever be a part of the voice I vow to give to CF, no matter what my cells may look like. Most of all, I think constantly of the people and families who yearn so desperately for such a life-changing opportunity. And for that, I will never take such a thing for granted, but instead will breathe bravely and embrace every breath as it is given while holding and fighting for all to be worn with such emotion and possibility derived from such a life-changing opportunity.
As I sat down to our table, opening up my laptop and setting my coffee within reach as I do every morning to work, I took an unassuming breath through my nose as I typed away on an email. That breath hit my senses differently than ever I can recall. The smell was fragrant, like the beautiful smell of spring blooming in quiet beauty. I looked over at the flowers my dear friend, Spencer, had brought me days ago, and I smiled. I could suddenly smell them. And, it was a magnificent thing.
Mark made dinner for us and the smell was incredible, but it was the flavor that blew me away. Now, Mark is a great cook, but tonight everything tasted different. It was divine. Everything tasted so alive and flavorful. I remember having a similar sensation after I had sinus surgery years ago which clearly disappeared as my sinuses became impacted again with inflammation and infection over time.
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