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: http://act.cff.org/XZVStJV thanks to the Cystic Fibrosis Foundation.

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: http://act.cff.org/ccfpeUx

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