Realizing Hope: Waiting to Exhale (Day 12)

I close my eyes tightly and brace myself, pulling as much air into my lungs before my gloved fingertips touch the door handle and I am consumed by the icy grip of South Dakota’s wintery breath. My body hesitates a moment longer before adrenaline forces me to find quick footing. The crisp still air stings my pursed lips as I hold onto the air for a moment longer. But, the held air in my lungs begins to burn, and I must give it back to the world in exchange for a breath filled with sharp icy daggers that set themselves fervently upon the air in which I seek to sustain me. But, as I feel the sting of winter move from my lips to my lungs I step out from the shadow of the peak of my house - the stunning January sun hanging against the bluest bright sky and reflecting off of the crisp hardened snow. Its radiating light reminding me that spring will come again. But, most of all, it reminds me to simply enjoy this very moment and its journey, as the coldest winter days in South Dakota most often give us the most beautiful blue skies. Ones that are breathtakingly beautiful in so many ways. 

I feel like since the first dose of Trikafta I’ve been waiting to exhale. You read that correctly. I’ve been waiting to exhale. A drug that seemingly begins to work within hours of the first dose has transformed the lives of some individuals with CF to feel like versions of themselves from decades bygone. I also know, just as CF manifests itself within everyone so differently, this drug, too, works differently within each of us. Every individual’s experience is going to be unique to them, and hope realized in different ways. But one thing is the same: all of us are filled with the same hope. 

To be honest, I’m still holding my breath and waiting to exhale. Truthfully, I’m not sure I’ll ever be able to fully exhale and trust this body enough to let it all go, even though within these short eleven days I’ve been given some priceless and unexpected gifts from being lucky enough to take this drug. They may be simple and seemingly small, but in the grand scope and expanse of this life they’re breathtakingly beautiful in and of themselves. For the simplest gift of laughter can shatter the iciest January air and bring life’s hope-filled season of Spring into every breath. Still, I’m cautious, I’m guarded, and I simply have lived my life until this point focused on the beauty in every present breath. It’s the way I’ve survived against a disease filled with many seasons - ones that have not always been the most beautiful. I know this Trikafta journey is not simply a single season, but is a compilation of seasons that will hopefully accompany me to the end of a breathtakingly beautiful life exhausted in years and the bluest January South Dakota skies. But no matter the season it will always be filled with hope and the deepest gratitude. Love to you all. 

Feeling Its Effects
- Day 11 - 

I'm always astonished when I think about how our bodies adjust to become our truth and how when that suddenly changes our association with our own truth must change as well. Things I've been eating for years suddenly have a different taste. I've eaten oatmeal squares all day, everyday for more than a year to help keep my blood sugar stable throughout the day. This week they taste different. I can taste the brown sugar and honey baked into every little square. 

I can smell my own hair for the first time in a very long time. I know that seems like not a real big thing, but it just proves to me how much I haven't been smelling these past years. Also, while having my blood drawn the other day I could smell my phlebotomist's gum.