Tuesday, May 16, 2017

Living Denial & Determination

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.

St. Peter Great Strides 2017
Watching the World
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

1 comment:

  1. 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!