Friday, March 24, 2017
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.
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.