There isn’t a day that goes by that I don’t think about all that is life. About how different tomorrow could possibly be, or how different even today could have been. I think about yesterday, am grateful, but silently wish that I had done more. Such ruminations usually find me as early as the moment my feet find themselves beneath my body and my lungs turn to face the day. I brace myself to cough - getting the first true sense of the day while pushing through the breath-gripping stiffness left by the night. Like the bud of a rose tightly wound in upon itself on a cool morning, these lungs, too, aren’t ready to open for the day. I do my best to breathe life into these lungs so that their tight embrace upon themselves might open to let each breath fully, yet unsuspectingly bloom.
I do my best to shed the weight left by life’s heavy questions - breathing bravely as I set out to give the day all I am able to give and release myself of CF’s defining grip. My mind constantly at odds with itself - trying to positively define myself in the wake of what it means to live with CF, yet coexist in a world in which most people never have to live with it, let alone think about it.
- There is CF.
For most of my life I’ve worked hard so that you'd forget about CF. To give you the gift of not worrying about this disease and its weight that is ever-present within every breath - striving to depict CF in a light of constant strength, perseverance, and unwavering hope. I do this not only for you, but for myself. It's a way to focus on the beauty of these 65 roses rather than feel the deep unforgiving thorns that leave their countless scars deeply embedded in my being. It’s always been a means of coping for me. It’s been a way to not feel defined by a disease but instead be merely bettered by an unchangeable diagnosis. It’s a way to try and forget the difficult and unforgiving side of CF and its irrevocable presence in my life. Most of all, it’s a subconscious way in which I try and protect those I love. And, I can do so because of how invisible CF can be to the unsuspecting eye - easily forgotten or excused away when not readily seen or felt.
But, the thing is, I can’t forget about CF. Why? Because in every cough, in every breath that catches just a bit, in every wave of fearful panic and sharp pain rooted in hemoptysis, in every VEST treatment, pill swallowed, IV antibiotic, port access, visit to the pharmacy, and unpaid medical bill - there is CF. In every contemplation of my past, reflection of my present, and aspiration of a future - there is CF. In all of the good and beauty that permeate my life - there is CF. In moments of heartache and uncontrollable tears - there is CF. In every note I sing - there is CF. In every relationship I am grateful to know, realized or not - there is CF.
Carrying It Alone
And sometimes, that can be a big burden to carry on your own. CF can be an incredibly lonely disease. Not just for myself, but the 70,000 other individuals that live with CF as well. But, it’s not just them. It’s their families. It’s their closest friends. We cannot forget CF. It’s woven intricately into our lives and inspires each of our unique stories. While I am not defined by this disease, it does undoubtedly influence not only every breath that I am gifted, but the eyes in which I see the world, the heart in which I yearn to share, and the beauty I am determined to give back. Part of that beauty will always be inspired by a disease that one day, I long for us all to be able to forget - together. A day in which the only roses that may leave scars upon our lives are those that we put in a vase for all to marvel at because we simply must share such unforgettable breathtaking beauty. Love to you all.
What's your unforgettable?
------------------------------------------------------------------------------
Together, let’s be the voice of CF.
This week is the final week of Cystic Fibrosis Awareness Month. A month devoted to giving extra voice to cystic fibrosis. I am asking that this week you take a moment to just breathe, to be wholly grateful, and, most of all, in that very beautiful breath remember cystic fibrosis and its unforgettable community of people. Together with hundreds of others whose lives have been impacted by the diagnosis of cystic fibrosis, this coming Saturday, June 1st, I will be walking as a part of the Great Strides for Cystic Fibrosis which raises money for the life-saving work of the Cystic Fibrosis Foundation.
Sign up to walk, be a virtual walker, or donate to Team Ashley. May we come together not defined by this disease, but as an unwavering voice of strength rooted in a capacity of meaningful compassion - fighting together for more beautiful tomorrows for all whom are impacted by cystic fibrosis.
Saturday, June 1st, 2019
Riverdale Park, Sioux Falls, SD
No comments:
Post a Comment