From out of
nowhere I feel a catch in my breath and a well of emotion dares to erupt from
the deepest parts of my being. It comes without warning and it takes all that I
am to stifle such a determined force of emotion. I try to take a deep breath –
determined to squelch the rising tide of tears I feel daring to overwhelm me. I
do my best to shake the surging pang of familiar heartache but it is in that
very breath itself that lies the catch that dares to undo me.
I silently
chastise myself and do my best to compose my churning emotions and thoughts - giving
myself an internal pep talk and rally speech. But I silently wonder when such a
moment will catch me off guard again. I suspect the impeding presence of those overwhelming
moments and fill my mind with focused distraction – all in hopes I can further
ignore the nagging and exhausting truth that forbids to be silenced. The
nagging truth that lives in the form of denial and leaves me reacting the only
way I know how - by pushing harder.
A Familiar Reality
A life with
CF is exhausting – physically, mentally, emotionally. And the truth is, that
some days I just want to ignore it all. To push CF from my mind and live
oblivious to its unrelenting chaos – its unforgiving reality. I go through the motions of treatments and
pill-popping. I do my best to shut my mind off from the exhausting and tireless
voice of CF. I subconsciously immerse myself in the busyness of life and fix my
eyes and emotions upon the distractions of tomorrow - relentlessly trying to
live a day ahead of CF.
And that’s
exactly what I’ve been doing. I’ve been ignoring CF and pushing myself harder
into exhausting distraction – doing whatever I can to keep myself from feeling this
familiar life with CF. The familiar reality of my chest tightening, a painful
and rib-wrenching cough, and a loss of lung function that unapologetically
makes its presence known with every note I sing. The familiar reality of IVs,
more hours spent doing treatments, and a body feeling stripped of energy and
focus.
But as I’ve
learned before, denial doesn’t save you from CF’s reality. It doesn’t make your
lungs burn any less for oxygen. Ultimately, it doesn’t change the truth. It
just builds a more powerful wall of tears whose force at some point can no
longer be held by the denial and determination I desperately cling to.
For the
first time ever, I watched my family and friends walk without me at this past
weekend’s Great Strides for CF Walk. For the first time I was not walking next
to them and leading our team, proving to myself that I will always be stronger
than CF. But instead, I sat at the finish line and watched as the world around
me turned without hesitation. At that moment, I wanted to do what I do best -
immerse myself in distraction. As I desperately searched for something to keep
my mind and heart occupied, I could feel the well of emotion growing in my
chest. The well of emotion that I’ve been fighting so hard to suppress these
past weeks. The well of emotion that makes CF real.
But as I
sat there watching everyone return to the finish line, I reminded myself this reality
I try so desperately to denounce is in fact, the exact reason why every one of
us walks in the first place. We walk in the face of CF’s denial and its unforgiving
and exhausting realities. We walk because CF is a part of each of our lives in
some way. We walk for those who can’t. We walk so that distractions of tomorrow
become livable dreams.
As I do my
best to not become engulfed in my uncontrollable emotions I keep my head and
eyes fixed ahead – doing my best not to let anyone see the pain behind my eyes.
But what overwhelmed me most is the realization that I do not simply need to
look ahead but simply look beside me. There’s a hand outstretched – waiting for
me to grab hold. Waiting for me to break my locked gaze of determination and denial
with the silent yet deafening meeting of our eyes. Waiting for me to exhale and allow myself to
feel the shallowness of every breath. Waiting for me to see that I am never
alone in this journey. Waiting for me to see that it’s all ok.
From the
bottom of my heart thank you for standing beside me, loving me through the
realities of CF, and never losing hope in tomorrow. Thank you for reminding me
there’s always beauty in every breath. Love to you all.
Walk With Us
Please join
Team Ashley and our CF community for
the next Great Strides Walk benefitting the Cystic Fibrosis Foundation as they
help give more tomorrows to each of us impacted by CF.
Great Strides for CF
Saturday,
June 3, 2017
10 a.m. Spencer
Park . Sioux Falls, SD
Register for our team or donate at: Team Ashley
I resonate so much with this post. I constantly find myself pushing too hard. All while having full knowledge of this fact, I continue to push harder. It can be defeating and simply unejoyable to be too sick to join your friends and family in participating in the usual. We got this! I'm so glad we both have writing and music as such a wonderful outlet!
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