Wednesday, January 8, 2020

Realizing Hope : Finding "Me" in the Unexpected (Day 5)


Continued from previous post.


For the first time in a very long time, I feel like “me”. 

I can honestly tell you that out of all the effects I had hoped so desperately to feel or that I might somehow come to realize, this was not one my heart or mind had even entertained. It was one for which I was not prepared. But, it’s the one that’s worth everything to me and that I unknowingly needed most. If this is all I know from Trikafta, that will simply be enough. I, with these faulty cells as they still are, will be enough just as I am in this very moment. 


Cystic fibrosis will alway be a part of my framework. These cells are not suddenly creating a completely new and unrecognizable tapestry as I feared might happen. These “inspired cells” are adding a new hue of beauty to an already perfectly unique piece of art that is living and growing with every beautiful breath I’m given. 

Most might think that CF only brings devastation and destruction to a person’s life, and believe me, it is capable of such ruthless and unrelenting suffering. But I can also tell you from my personal experience, the realities of CF have been a catalyst for so many breathtakingly beautiful memories, have inspired a purpose, relationships and brought people into my life beyond compare. Most of all, it’s brought a connection with my brother that is unlike one I will ever have with anyone else in this life - a cord of unique and brilliant connection woven within the fabric of this beautiful life. Those things will never be erased from who I am. They are imprinted into every cell and every fiber of my being. 

The truth is, there are so many things that make me who I am. A drug I take will never simply steal my past and the experiences that have shaped me into the person I am today. It can, however, inspire a future in which I may fully know what it means to live. I can only take a deep breath today and look forward to tomorrow - embracing every moment and breath just the same as yesterday. No matter the moment, I will always be rooted in the same hope and gratitude for this life I get to live while bravely giving voice to a disease that will always be a part of “me”. Love to you all. 


“Today you are you, that is truer than true. There is no one alive who is you-er than you. “ - Dr. Seuss


2 comments:

  1. Ashley, your posts on this transformation are must reads. I look forward to reading them every day. You allowing hope to enter your own equation is the greatest transformation of all.

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  2. I was going to pop into the comments and say almost the exact same thing. Thank you for sharing this journey, Ashley!

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