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?

Monday, June 5, 2017

My Storied Truth

This night is one of the hardest, yet one of my favorites of the year. It’s a night filled with so many raw and diverse emotions that amass over time as I do my best to keep them in check and shrouded in a self-protecting cloak of strength - subconsciously suppressing them throughout the year. It’s on nights such as this that I am reminded how quickly time is passing, just how priceless every breath is, and no matter what the days have brought and have yet to bring, no matter how desperately I push proving to myself I am strong enough to live this life, I will forever be writing my life’s story parallel to an unchangeable truth called cystic fibrosis.

This specific page in my story? This night? It’s our yearly Breathe Bravely backyard celebration.

Honesty, Purpose, and Meaning
It’s during nights such as this that I am forced to see such a truth and its influence on that very given moment. It sets my emotions ablaze and causes my eyes to brim with tears. You see, this truth is woven within every page of my life’s story. This truth silently sends reverberations throughout every action, every relationship, and every breath that I am given. This simple truth, however? This life with CF? It has made me wholly who I am. And, as tears dare to overwhelm my eyes as I simply write such a truth, I know I wouldn’t trade a moment of any of it. I wouldn’t trade a single breath, a single ounce of lung function, or a single moment of heartache if it meant not living the life I am so fortunate to live today. I wouldn’t rewrite a single page of this story if it meant not knowing what it means to love this deeply, live this honestly, and breathe so purposefully. In truth, CF has inspired some of the most meaningful relationships in my life and opened my eyes and heart to what it means to truly live – many things people live their entire lives without ever experiencing.

An Intersecting Truth
For some reason, this night seemed to be one of the most emotionally difficult ones I’ve endured so far - surpassed only by its memorable and meaningful beauty. It took all I had to keep from being buried in a medley of raw emotions. What was it exactly about this night that left my heart and mind enveloped in emotion? It was a culmination CF’s exhausting uncertainties and complications that have been relentless these past months. It was seeing my storied truth before me married with the realization of passing time. But most of all, it was the sight of seeing so many people who have impacted my life so greatly all in one place.

As I looked out over our backyard I saw people gathered that reflected every part of my journey. People, that without them, I wouldn’t be here today and this beautiful thing I get to call my life would cease to exist. People who have helped shape my past, the present, and are unknowingly influencing my future. People from every corner of my life, there, intersected in a single moment in front of me. People who have inspired and fervently believed in a life without limits and living a life worthy of my own unique story - no matter my unchangeable truth. People who remind me that this truth that lives within every page of my story has brought each of them into my life and shaped me into all I am. For each of you I am grateful beyond words. Love to you all, now and always.

Thank you to everyone who came out to support Team Ashley Saturday morning and helped make this year’s Breathe Bravely Backyard Bash so meaningful and memorable Saturday  night. Check out Breathe 3-65 this week on Tuesday to get a full account of the Breathe Bravely Backyard Bash and all who helped make it possible!  

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

Friday, March 24, 2017

Expensively Imperfect

At the very core of who I am there is a gnawing and ever-present voice that tells me I am a burden. It daily reminds me that I am expensively imperfect, and with its glaring and ugly truth it makes me believe I am worthless.

It makes me desperate for control and to be the keeper of my own fate. It fills me with anxiety, a deep-seated guilt, and sets me on a constant unrelenting pursuit of proving to myself that I am strong enough to live this life by my own accord.

More than I Can Give
As CF has proved its undeniable and unstoppable presence in my life these past weeks, that unforgiving and unassuming inner voice has resurged within every breath I’ve been given and with more vengeance than I’ve ever known before. As I’ve pleaded with my body to hold in that cough that would knowingly set my lungs aflame and as I’ve gripped to the air given within every breath, my heart has broken knowing the truth and relentless power of this disease. It has broken because I know there’s only so much I, myself can do to stop this all from happening. Most of all, however, it has broken because again, I would have to take more than I could ever give – I’d have to show how weak I truly am.

For much of my life I have set out to prove to myself that I don’t need anyone, that I am strong enough to handle CF on my own, and that I don’t need a hero. In my mind, kindness and compassion have always been something I’ve wanted to limitlessly pour out onto others – feeling it is the most priceless of things any of us can ever give. But with this deep belief I have never wanted to admit that I, too actually need and only survive by such kindness and compassion. Until now.

Expensively Imperfect
The truth is, I need you. I need your compassion. I need your love. I need your strength. I need your help. Simply stated, I cannot live without it. Most of all, we, cannot live without it. There isn’t a day that goes by that I don’t think about the cost of my life, what it takes to give me every beautiful breath that I take, and the ceaseless pursuit for another tomorrow. It’s about $30,000 per month to be exact, not including inevitable courses of life-saving IV antibiotics, drug research, surgeries, or procedures to keep me alive that cost thousands more. How could I not question the worth and price of my life? But, I also have been shown that this life I am so fortunate to live is priceless. That this is journey I have the chance to live is a shared one, and that my, nor anyone else’s worth is tied to the uncontrollable obstacles that are a part of each person’s unique yet binding stories.

I have been given much in this beautiful life, regardless of that perpetual daunting voice of CF that tells me I am only a burden. I simply cannot deny this gifted life nor can I deny the sacrifices that so many incredible people make for me and continue to make for me. I never want to go a day without living out the authentic gratitude that fills my heart and gives life to every breath. The honest truth is, however, that I will forever be expensively imperfect. But that is simply something I cannot help nor change. But I also always will be Ashley - steadfastly rooted in the beautiful truth of knowing I have never ever been alone in this journey and this life I am given is truly priceless.  

So as I humbly share my honest life with each of you, I ask you to help me, and so many others like myself with pre-existing and fatal chronic conditions. We truly need you, your love, and your voice – now more than ever. This life we are each given to live, regardless of our unique circumstance or story, and every breath we take are truly priceless. Love to you all.

Remember, you are pricelessly imperfect.

- Sharing Your Voice -
I ask you to please take a moment today and show your love, your support, and voice for all people with cystic fibrosis and chronic healthcare needs. We need you. Congress will soon vote on the American Health Care Act. People living with cystic fibrosis need high-quality, specialized care and adequate insurance and the proposed legislation fails to protect our community.

Your calls and voice matter! Getting in touch with your member of Congress is easy -- you can text "PROTECTCARE" to 52886 or share your opposition here: thanks to the Cystic Fibrosis Foundation.

Monday, January 16, 2017

A Measure of My Worth

I lie here listening to the rhythm of my own heart. I can hear tiny crackles upon every breath I take as my chest rises and falls. I feel the hollowness of my eyes deepen as sleep eludes me. It’s another sleepless night filled with a relentless churning in my chest and an endless pleading with my mind. Tears stream down my cheeks as I cling to the surety of this moment and the safety of past memories that have molded my life. Each tear consumed with the wish that I would have held onto each of those moments tighter, loved within them deeper. Each tear born of an uncertain tomorrow and the measure of my worth.

Two Words
“By what is my worth measured”? - a question that weaves through every memory and motivation for my life. Am I measured by my capacity to love? My insatiable hunger for living? Am I measured by the strength of my will, my conscience, or tenacity?  Am I measured by the value or worth of my spirit? No. I am instead measured by my imperfect genetics and two words that constantly prove to show me my worth.

Two words that I have been fighting to outrun my entire life. Two words that were assigned to me based upon my mere existence. Two words that have always represented my imperfections. Two words that even as a little girl with bright eyes and an unbreakable hope for the future, would cause an anxious churning in her chest – something I can still feel thirty years later reverberating through my soul like the powerful and inescapable waves of a tsunami. Words that haunt me while I lie awake at night with uncontrollable tears melting into my pillow. Words that with their unassuming and seemingly innocent silence would undoubtedly mold me into the person I am today. Two words that are not “cystic fibrosis” but are the words “pre-existing condition.”

            The Price is Life
The truth is, that because of those two words the life I graciously get to live comes at a significant cost. I will be first to say the system is not perfect and needs fixing. But the simple truth is, I’d be dead without insurance and the current protections for people with pre-existing conditions and against lifetime coverage limits. I’d be dead without affordable access to medications. Medications that without insurance or protection against having a pre-existing condition would cost me over $30,000 a month - medications that have given me thirty years of beautiful life and the freedom to fight for another day amidst my friends and family.

I lie in bed at night and contemplate how long I can go without medications, without treatments, without the current support I am privileged enough to know. I do the math in my head and give myself a few variables. Given my relatively stable health today, if life-time caps and limits were reinstated I would reach the end of its given limit in a max of three or so years. And I feel like I am one of the lucky ones. Fellow friends with CF who are eligible for life-extending drugs such as Orkambi or Kalydeco (drugs alone costing $300,000 per year), would use up such lifetime limits within just a couple short years, maybe sooner.

Most of all though, what drives the tears from my eyes and bores a sadness and fear deeper than I’ve ever known is the thought of missing out on the lives of those I love. I think of Mark – him helplessly watching the root of those two words destroy me breath by breath. I think of my friends, the laughter that has yet to be shared together and the love that has yet to be embraced. I try to imagine a future without me a part of it - the churning in my chest growing with every painful glimpse of a possible reality.

My Worth
There’s no doubt that these two words have shaped me into the person I am today – garnering a life of immeasurable gratitude and the most meaningful relationships. And for that alone I would not trade this life. I think about my friends facing the same uncertainty. I think about how none of us asked for this life, yet these two words seemingly measure our worth. I think of all of their loved ones, children, friends. Tears uncontrollably escape from my eyes and race down my face - their salty existence a cruel reminder of our imperfections.

Yet, with every breath I am given I will be grateful. Always. I will never deny that those two words have instilled the deepest drive and passion within me – giving great meaning to every breath I take.  But, I want to be measured based upon my life’s work,  love, and tenacious spirit – not the burden my life represents formed from the words “pre-existing condition.” I close my eyes and tightly cling to the unbreakable gratitude that lives on every breath- reminding myself of the beauty that lives in every breath and the inextinguishable hope that measures the meaning of my life. Love to you all. 

What is the measure of your worth?

- Support -
If this issue is close to your heart, I ask you to call or write your representatives and tell them that these two words, "pre-existing condition," shouldn’t define a person’s worth. Ask them to protect people with pre-existing conditions and ensure no lifetime limits on coverage. The CF Foundation has set up a page to make sure your voice is heard:

If you’d like more information on the impact of healthcare repeal on the CF community check out the latest information shared by the Cystic Fibrosis Foundation. CFF- Healthcare Reform