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

Unbreakable

When the uncertainties of CF plague every breath, I retreat within the protective sounds of introspective silence – desperately seeking within myself for the answers to unanswerable questions. So I cling to the only truth I know with any clarity. The truth that my spirit is bravely unbreakable but this body is merely borrowed.

For the last month I’ve lived tightly bound within the safety of my own silence. Quietly taking the days as they come to me – doing my best to embrace the uncertainties of CF, the never-ending questions of this life, and my growing desperation for any answers. The questions an ever-growing reminder that I feel like a stranger within my own body. And despite my life’s truth I so desperately cling to, CF will always be at the center of those unanswerable questions. 

An Uncontrollable Truth

As I silently reflect on the last months of 2016 and their unexplainable questions, a sadness and clarity stir painfully within my chest. A clarity that would remind me how quickly life can change, how much I take for granted, and the painful truth I cannot control. A clarity from in which I often times run. A clarity I continually do my best to silence. At the beginning of November, without any telling signs or symptoms, I began having significant and frequent episodes of hemoptysis (coughing up blood). It had been almost a year since my last episode and it caught me greatly off-guard. I thought this November would quietly pass, but I was painfully reminded of the unpredictability of this life with CF. November seems to bring CF unapologetically to life from the silent and unassuming depths that embrace every breath I take. For weeks, episodes would erupt from my lungs without warning and my heart would plummet into a pool of unanswerable questions. The the worst part of hemoptysis, however? The mere waiting. With a catch of my breath I'd feel a tightness and pressure in my chest. I'd silently hold my breath for a few seconds. As Adrenaline suddenly spiked through my body all I could do is helplessly and silently wait – wait to see if blood would well up from within my lungs, causing another episode. 

Within my own silence lived a cacophony of questions. Questions I didn’t have answers to nor did anyone else have any explanations: “Why is this happening?” “How can my lungs be doing so well and they still be bleeding?” “Is the next episode going to be the big one?” And most of all, I was worried something would happen while I was with people I cared about – never wanting to them to endure the horrors of me coughing up blood uncontrollably, nor did I want to draw any attention to questions in which I had no answers. The only thing I knew with any certainty was my body was betraying me. CF was betraying me.

The Unexplainable Side of CF

But despite all of this, my lung function had been the best it has been in years. To be honest, I actually felt pretty great – I was singing and teaching a great deal, had a schedule that was bursting with life, had a meaningful opportunity to sing in an ensemble for a few concerts, and was squeezing the most life out of every breath I was given. I felt unbreakable. But if I’ve learned anything about this life with CF, it thrives on the unexplainable. Unexplainable questions plagued every breath and threatened to break my spirit - devouring any trust that lived within me. The most difficult thing, however, was seeing the same unanswered questions embodied in the eyes of my CF Team at home. Each of us waiting for something to work, the episodes to cease, and there to be some concrete answers. After weeks of trying different combinations of medications, IVs, multiple scans, tests, and different consultations, the words “Bronchial Arterial Embolization” were brought up. They caught me even more off-guard. I had heard these words years ago but had managed to silence them, or more honestly - hide from them. This time was different, though. I knew there was an earnestness to the doctor’s voice and a reality I could only run from for so long. There were no deals to be made, no “what if” scenarios, no clinging only to a hopeful trust that my body would never betray me. This was the real side of CF.

To Live

This conversation and all its reality confronted me just following my 30^th birthday. The most difficult part? I knew difficult decisions would accompany even more unanswerable questions in the days ahead all while reminding me this body I’ve been given is merely borrowed. So again, I retreated into the safety of my own silence – desperately looking for answers, clarity, and honesty within myself. But sometimes there are no clear answers. Sometimes the questions themselves are the answers. And sometimes the answer is simply just to live - clinging to the surety of today, this moment, and this very breath.

Sometimes to truly live we must face a reality we often times try to hide from or silence. We must merely trust. So, last Thursday putting my own fears aside and clinging to a silent unbreakable bravery, I placed my trust in the steady hands of my care team and had a Bronchial Arterial Embolization – a procedure to find the weakened vessels in my lungs and selectively block their blood flow to minimize the risk of continued hemoptysis or hemorrhaging. A procedure, in all likelihood I learned afterwards, will have to be done again in the future. But with any great hope it will be many years or more from now. 

As the new year begins, I silently reflect on the beauty that fills my life while reminding myself to always live presently within the beautiful breath I’ve been given. This life is going to be filled with more questions than answers – and ones that at times I desperately wish to silence. 2017 without a doubt will hold its own set of adventures, uncertainties, and questions but I must remember there is always an answer to all of those difficult questions. The answer is to merely live - live gratefully with a bravely unbreakable spirit while always embracing every beautiful breath as the true gift it is. Here's to a continued beautiful journey, not knowing all the answers, and bravely living in every moment. Love to you all.

How do you answer those unanswerable questions?