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