The very essence of who we are and become is created wholly in change. It is the very catalyst of what silently allows us to grow in mind, body, and spirit. The anxiety we may feel when we think of change doesn’t come from change itself, but comes from our inability to control it or a mistrust we assign to it. But, even within the most uncontrollable change we unknowingly learn to live within its embracing metamorphosis. For time, in and of itself, is always changing.
Learning to Live in Trust
For over three decades my body has been conditioned to mistrust itself due to changes in my life over which I feel I have had no control. I’ve learned that every seemingly “easy” day with CF is matched only with another to remind me that CF is unrelentingly holding my body and mind captive at all times. I’ve been conditioned through experience that change just merely is, and is nothing more or less than something I must approach with pragmatic hope. For hoping too greatly has left my heart broken and expectations for myself unrealized - suffocated by the realities of CF. I’ve learned to cautiously hope. To be guarded against myself and my trust of this body. I’ve learned that what I may feel today may so easily be stolen tomorrow because of CF. So, I’ve survived by gratefully living in the present for fear of a changing future - one in which I’ve learned I cannot truly control. It’s safest for me to live in what I know as the truth of today and how this body is letting me live - grounded in gratitude for every beautiful breath as it is gifted to me in this moment.
So, the question that I’ve been avoiding for the last two weeks as I’ve started this Trikafta journey and knowingly is the one I evade on most given days is: “How are you feeling?” It’s one if you know me well that I do my best to deflect. For I’ve learned for my own self preservation to try and not compare one day to the next. I simply live within every day the best I possibly can - knowing that tomorrow will be different. I will live tomorrow just as I did today: with a grateful heart and with all that I have. This still doesn’t answer your question, but it instead forces me to truly live within the fears of change. Because this body of betrayal that I’ve known for so long has made me cautious and hypersensitive against any change, my silence is my safety and existing in the present becomes my life's only stable truth. For I fear the abandonment of realized hope that lives in the possibility of change.
A Change In Me
I treasure the silent small things like tasting food again or waking up and being able to speak without having to clear out the mass amounts of mucus that have drown my lungs and throat during the night. I cling to laughing without fear, breathing through my nose, and not feeling like I’m living within the middle of a daydream all the time - nervous to interact with people because my mind isn’t effectively and efficiently working to let me easily form sentences or think of simple words. Most of all, however, I cling to the small, but life-giving change of these lungs simply letting me make it fully to the end of two measures of singing a song again without needing to breathe. I hesitate to set these words upon my lips as every fiber of my being has been conditioned to be skeptical and mistrusting. Because the truth is that at the end of the day, I still feel like I have CF. That has not changed, and the heartbreak of losing all of those little or big things and feeling lied to by my own body again leaves me utterly breathless. Not to mention seeing the excitement in the eyes of those I love and how badly they want things to be better, only to have their own realized hopes crushed.
Beauty in Change
Life is changing all around us and within us. We may not be able to control that change, but we can decide how we allow our lives to be transformed within and by it. We simply must entrust our hearts to the mere act of change. I knew this journey would not be easy, but whatever tomorrow may bring I must be brave enough to embrace this transformation. Things will most definitely be different tomorrow, and I can’t control whether or not they become my steady truth. The truth merely lies in a hope that can only be realized through the eyes of the one who sees such transforming beauty and chooses bravely to share it. And today, I choose to share that beauty. Love to you all.
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