“....to just be normal”.
It’s a seemingly empty wish that has found itself upon my lips on numerous occasions - leaving echoes of its pleas reverberating through my mind. That set of words usually is married with tears that come in the form of an emotional release that have been building and can no longer be contained. These moments are most often a culmination of living at the mercy of the unexpected and unknown realities of CF.
A New "Normal"
I woke up this morning allowing myself to realize that for the last week I haven’t spent my mornings dry heaving over the sink due to nonstop coughing - my lungs burning from the abrasive impact of tortuous muscles and forced air trying to move the suffocating thickness of mucus trapped within my lungs. Mornings that would leave my body ravaged and exhausted before the day had even begun. Just less than week or so ago I would dread getting out of bed in the morning, lying still as the world nudged me to take part in its gift of another day. I’d lie still for a few moments garnering enough strength and willpower to push through the heaviness that found itself within my chest overnight, knowing what awaited me as I sat up and took the first true thoughtful breath of the day. Within those first moments, I knew whether or not the day was mine or if CF would make me work for every breath - setting that simple wish upon my lips of “I wish I were normal”.
After thirty-three years I’m not even sure what normal could possibly feel like. Is it not spending hours in a given morning coughing to the point of cracked ribs and exhaustion? Is it simply waking and not making deals with the day and the disease that forever has foretold its fruition? Was this very morning a glimpse of normal? Is this my own “normal”? Most of all, will I ever be able to fully trust its existence if it is such? Even within the realized constructs of this moment, I continue to hold my breath as this body has taught me never to trust itself, or namely trust the disease of cystic fibrosis that will forever define every cell, Trikafta or not. Most of all, I guard my heart from that trust being broken within myself. Whatever my personal definition of today’s normal may be, my body silently and fearfully pleads within itself that while I may never know true normalcy, that CF may continue to show me mercy and let me simply breathe in the beauty of possibility that was born to such a gifted morning as this.
To Just Be Me
The truth is we will never truly know what normal is because we’ve lived too much, we’ve felt too much, we’ve seen too much of a life defined within a different norm called cystic fibrosis. I think about that simple wish of normalcy and how for it to genuinely become an embodied reality the entirety of my history, my experiences, many of my relationships, and all the strength through heartache that has been realized would fail to be reflected in the landscape of my life. Truly knowing normalcy feels as if it would seemingly erase much of who I am and have become. I feel as if my eyes would suddenly no longer see the depth and the pricelessness present within every moment, and the entirety of my being would simply exist instead of emblazoned with a fiery passion to do all I can to simply live. For better and for worse, CF has conditioned me into the person I strive to be today: tenacious, compassionate, and wholly present in living each moment without regret. That simple wish may be set upon my heart for all of my days, but it is one that at its truth has helped make my life so incredibly beautiful. I wouldn’t trade a single breath if it meant not knowing the love that enlivens this life with meaning and purpose. My life with CF will never know such normalcy, but what matters most is that I instead embrace the wish to have the strength to simply just be “me”. Love to you all.
No comments:
Post a Comment