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.