Sunday, January 1, 2017


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 30th 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?

1 comment:

  1. Loved this read, this past year has been one of the roughest years I've had with CF. From having surgery to battling anxiety and depression that come along with this disease. As I read your post, I realize that I'm not the only one dealing with uncertainties that come along with CF. So often when unanswerable questions come my way I tend to try and ignore them. However, with all the ups and downs I have faced in 2016, I've learned to trust in my faith when unanswerable questions come my way. I hope that you are doing better and had an awesome Christmas and a Happy New Year!