Our breath is like an endless tide - rising and falling within ourselves and set upon the unassuming rhythm that gives us life. We stare out into the horizon and watch the waves swell. Very rarely do our eyes catch a wave and follow it fully to shore - watching each powerful current briefly embrace the sand only to be pulled back into an undertow to be reborn. The same thing happens within ourselves. Very rarely do we wake each morning, pulling air into our lungs only to follow its rise and fall as we give it back to the world to be re-inspired.
Living within Each Breath
I wake each morning and close each night thinking about the same thing. I lie on my back and pull as much air into my lungs as possible as I feel my ribcage expand and my stomach rise. I feel the air pour into these rigid lungs - grateful for giving me another day while silently wishing I knew what it was like to breathe deeper. I set those wishes upon the whisper of life’s song as I purse my lips and feel every muscle in my torso work to set it free, only to pull those same wishes back into these lungs. For it’s this very breath that not only keeps me alive, but is in-part what helps me feel alive. I live my life as a singer. I beg for every breath so that I might feel it find itself upon a song - wishing only that it could set sail upon unanchored wings. Wishing for some sort of miracle in which I would give me the freedom to choose when to be done singing, instead of these lungs forbidding to support the phrase I wish to finish. But, I also don’t know anything different than the support these lungs have given me all these years. To their credit, they have been reliable to me in that way. In these last few months, however, they’ve been giving me less and less support when I sing. Those two phrases I’ve been able to comfortably own for years within the limited air in my lungs, no longer seemed steady and trusting. No matter my technique, breath management, or focus these lungs would abruptly and unapologetically cut me off without giving a care to the words left empty and silent upon my lips. The very thing that made me feel truly alive was the very thing dependent on that in which fills me with life itself : breath. And, the reality is that I have cystic fibrosis - a disease that is vying to steal every last one. Deep down, however, I feel that is why I am in fact a singer - that my life simply depends on it.
 |
| Artwork by Molly Noem Fulton |
When the possibility of Trikafta became a potential reality for me a few months ago my heart was submerged into an ocean wrought with hope filled emotion. At its very center, a hope rooted in a future reflected in the lives of those I love. One in which I had only ever dreamed about. But, deeper within me was not only a hope to be filled with life itself, but for that life-giving breath to fuel that in which makes me feel truly alive. That I may feel a breath pour into my body and know no limitations. I did my best to guard my hope and temper the possibility of such a thing. But, I couldn’t help but wonder as I lay there night after night and morning upon morning what it might feel like if hope were realized in the form of a deeper breath. If that hope were realized in the gift of just being able to sing two measures again without feeling betrayed by my own body. That I wouldn’t feel most days as if I’m losing that in which makes me feel most alive against my own will and determination. What if I felt free to sing the song I imagined?
During its clinical trials, Trikafta showed many significant and dramatic points of disease improvement in individuals with at least one copy of the Fdel508 mutation. One of these incredible improvements was on average a 14% increase in lung function, not to mention a significant increase in associated quality of life. Of course, this means there were individuals with a lung function increase greater than 14%, some with a slight increase, and those who saw no significant changes in lung function. Every individual with CF is so very different and it manifests itself uniquely to each of us. Some people within hours and mere days of taking their first dose of Trikafta could suddenly take a breath they’d only known years to decades before. And for others their experience has been different. While 14% would be simply amazing, and I can’t even begin to fathom what that would feel like, I also know the reality of these damaged bacteria laden lungs that reside within the walls of my chest and what the truth of their stubborn state may be. But, even within that reality it’s hard for my heart not to hope for just enough breath to give me back those two full measures. I promise I will use them for the most glorious song that lives upon my heart.
To be continue…
No comments:
Post a Comment