Monday, July 17, 2017

To Be "Sick"

I remember as a little girl staring at myself in the mirror and locking eyes with my reflection – analyzing my appearance and desperately wondering, “do I look sick?” I can still feel the steeped heartache behind the eyes of that five-year-old girl as I think of her searching for ways to prove to everyone and herself she was not “sick” -  she was merely Ashley.

Reflecting Honesty
No matter the years that have passed, when I look in the mirror I still catch glimpses of that five-year-old girl. Glimpses in which I see a girl with those same wild yet worried eyes  – eyes that would forever reflect an honesty simply impossible to hide. These moments catch my heart off-guard and a pang of familiar panic surges through my body as I fear my eyes may be betraying me. I fear my telling eyes are unwillingly affirming the world’s definition of what it means to be “sick.” As I stare back at the young girl in the mirror with those same wild eyes, I can still feel that same aching hallowed sorrow that was carved deep within her existence all those years ago - an inextinguishable heartache of wondering if the only way people would ever see her is “sick” and if that simply was all she ever could be.




But to me, I am not “sick”.

I am just Ashley.

I am just me.

And this is what 16 weeks of IV antibiotics just happens to looks like.
And this is what $100,000 worth of hospital services in 7 months looks like.
And for me, this is what 41% lung function looks like.

Yes, my life is complicated by a disease that makes taking 50+ pills a day seem normal, a disease that makes spending hours strapped to a VEST and doing nebulizer treatments seem ordinary, a disease that causes the world to technically define me as “sick”. A disease that makes the shear art of being alive a costly one – one for which I never asked. A disease that undoubtedly has made people see me differently. But this disease has also caused my closest “family” to encompass a priceless community I would otherwise never know. Most of all, however, this disease has made me embrace and live fully in the present while remaining rooted in an untouchable hope for tomorrow.

This disease is a part of me and this is simply my breathtaking beautiful life – CF and all.

“Am I sick?” I guess that will always be something I struggle to answer and refuse to fully see. I am just merely living – taking each glorious day as it is gifted to me. Some of those days remind me of the exhausting and heavy chains called cystic fibrosis that hang on every breath I take.
And some days are so abundantly filled with beautiful air I forget I am breathing – making me feel invincible. But whatever the days may bring, I am doing all I can to live as the person I wholly am – faulty genes, pre-existing condition and all.

All I Am
As I look in the mirror this morning, I catch a glimpse of that five-year-old girl. For a moment our eyes meet beyond the confines of time and the emblazoned life dancing within the eyes of that five-year-old girl remind me that I am strong. I am determined. I am tenacious. I am loving. I am filled with an insurmountable gratitude and love for every breath that gives me life. I am the girl with the undeniable fire and spark in her eyes that tells the world who she is without ever having to speak a word. I am Ashley and this is simply my beautiful life living with cystic fibrosis. Love to you all.

What do you see in yourself when you look in the mirror?



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