Realizing Hope: A Breath of Change (Day 21)

Continued from previous post...

There’s a moment of unmatched euphoria when the presence of the breath from which I dwell effortlessly inspires a song that pours from my entire being  - carried by a truth that suspends reality for a brief moment and renews the hope that echoes through the darkest places of my soul. In those moments, time stands still and all that is present is an unbreakable connection between my breath, body, and voice. In that moment, I am truly alive. In that perfect moment there is no cystic fibrosis. There is no pain. In that moment, the constant ticking of time is silenced and replaced by the life and breath of music reverberating within my soul to its own life-giving beat. In that moment, I am reminded that I am strong enough for whatever this life with CF may bring. In that moment, I am reminded why I fight for every beautiful breath. 

But, I know that very moment and the music in which is married to my only promised breath, is destined to find its end. And all that matters is where I go from there - hoping someday that I may again be given this sweet moment of reprise. 

Just Enough

For three weeks now I have started my day with two tiny orange pills that are accompanied by a soul gripping gratitude I never dreamed possible along with a spoonful of peanut butter. I’ve closed each of those days with a single tiny blue pill composed of priceless possibility rooted in my heart’s deepest hope of feeling forbidden air pour into these lungs. A hope born of a future of growing old alongside the ones I love and simply knowing just enough breath to simply sing two full measures again. I’ve been hesitant to talk about my lungs these past few weeks as it’s something I have always had a hard time sharing - a topic rooted in a reality I find at times hard to face. I simply live within the confines of what these lungs will give me today and do all that I can with the breath I have been given. But, if I could just for a moment know the feeling of having just enough...

These Lungs: 

Being, Breathing, Singing

So, after three weeks how do these lungs feel? By no means do I feel like I’ve suddenly regained years of lost lung function or that CF no longer grips these lungs, but I had tempered my expectations of such things from the start of this journey due to the nature of my own disease progression. It doesn’t mean it’s not something I’d hoped would miraculous become a truth I’d experience, but I feel my Trikafta journey will be one of longevity and stability in my life with CF - realized in different miraculous ways other than within the amount of air that fills these lungs. And, maybe these lungs just need more time to settle in with Trikafta before they embrace change?

But, my lungs do feel different. When I take in a breath, I feel the air hit the roof of my mouth and pour down the back of my throat differently than just a few weeks ago. The air tastes different and drenches my soft palate in a cool fluid breath. It doesn’t feel as if I’m trying to draw a breath into my body through a thickly woven towel. My breath feels light upon my lips, but strangely heavy within my lungs - making them feel a bit hollow. Most of all, singing it hard. I don't recognize this breath or this voice. For the last three weeks it’s as if I’m learning how to sing all over again. My air feels heavy and like my diaphragm can’t fully support its weight the way I’ve always known it to. After singing for just 20 minutes my body feels shaky and my support exhausted. I feel lightheaded, like too much oxygen is escaping my body and it can't be replenished quick enough. I feel like I’m pouring too much air through a single note in which my voice can’t find solid footing. I’ve spent years conditioning my respiratory system to work with these lungs and their barriers, where now I don’t recognize these lungs in which I enact the same muscle memory and engrained technique used just weeks ago. A muscle memory that once used every last ounce of capacity to not even make two full measures. 

But, for the first time in more than six months I’ve made it to the end of two measures. It’s hard, and these lungs aren’t giving it graciously, but it’s there. And today, within those two measures lives the most glorious song composed of possibility born solely from a hope called Trikafta. A song that makes me feel truly alive. It may be different tomorrow, but today I will continue to embrace these lungs for all they are. I am grateful for every beautiful breath that I am able to set to a song - rooted in a resounding truth that it will never matter the amount of air that fill one's lungs, but it's what you do with that air that truly matters. Love to you all.