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?

Never Enough

It’s with the strike of a match a blaze of emotion is sparked and dares to undermine the strong will that sets my spirit. As each candle is lit, I see an unmistakable glow flourish in the eyes of those surrounding me. I cannot help but realize the vibrant glow gleaming in their eyes is but a reflection of my own life – its vibrancy, its unpredictable nature, and its unrelenting pursuit to be a light amidst darkness. A glow that with every passing year I want nothing more than to hold onto - to be the unrelenting fire that reflects the untamable life and drive that truly burns vibrantly within every breath.

One More

My 30^th birthday was met with an unmistakable weight within my chest – an awareness of the past weeks’ uncertainties with CF, unanswered questions, and most of all, a deepening realization of what this life truly signifies and the deep gratitude I have for the people I am given the chance to love. I cannot help but think no matter the number of years I am given they will never seem like enough. If anything, the magnitude of losing it all only grows. That the fire that burns within me to truly live will never dissipate but only burn more passionately - always wanting just one more day. One more year. One more breath.

As I felt the air pour into the depths of my lungs in hopes of blowing out every last candle, I couldn’t help but be wholly grateful. I knew this moment in many ways should have never been, and in my heart I knew tomorrow would never be guaranteed. In the reflection of the candles’ glow I not only saw myself but everyone in my life who had fought selflessly and tirelessly for me to be given the chance to celebrate this day – my friends, family, selfless strangers, doctors, nurses, pharmacists, and everyone a part of my CF Care Team.

Unrelenting

As I blew each candle out, billows of their existence swirled amidst the air - a reminder of each candle’s lingering presence even after its glowing flame had been stifled. But, there were several candles that forbid to be extinguished – blown out only to vigorously reignite in an unrelenting glow. Trick candles - an innocent mistake but more perfect than ever could be realized. As the candles forbid to go out, I too forbid to let the blazing fire within me be suffocated - especially by CF. May the fire within me will only burn brighter because of it – casting a powerful glow of hope onto every beautiful breath I am given.

I held back tears as my heart filled with the deepest gratitude for this life I’ve been given, the people that ignite my soul, and every breath that renews the glowing embers within me. I will take every beautiful day, hour, moment as they are so graciously given to me - always sharing the vibrant emblazoned life that passionately burns within me. Here’s to the past 30 years and to the endless hope for 30 more. Thank you to everyone who helped make my birthday so special and for most of all, being such an influential part of what makes the fire within me burn so brightly. Love to you all. 

Let the fire that lives within you burn brightly today and every day you are given.

Hope's First Snow

There’s an extra sharpness to today’s November air. I can feel it pierce my heavy lungs as I can sense the presence of a coming snow.  As I look out at the still green grass littered with leaves and the trees standing coldly bare, part of me can’t help but cling to the sweetness of summer while wishing for it to snow.

I don’t believe I’ve ever wished for snow. But this coming snow seems different than those of past years. Deep within me I know this year’s first snowfall will be a beautiful cleansing snow that embraces everything it touches with a quiet radiance and a subtle hope. A hope that gently covers November’s weary and uncertain landscape. A hope that is rooted in the snowy promise that indeed, Spring will come again. I have to believe it will come again.

As I lay listlessly waiting for sleep to come, I can hear the storm’s wind whirling outside my window. As sleep eluded me, I’d get up and look out the window to see if I could see any first signs of the coming snow. I crawled back into my warm and safe bed and just listened – hoping to awaken to a November kissed by the brightest of snows. As sleep drew me in, my thoughts stirred on the Autumn winds of November and the heartache this month always seems to hold. As I think back over these past few years, my heart can’t help but bring me back to the month of November and the defining moments of CF that so often seem to accompany it. But as I think back, that heartache was always followed by the first snow – a renewing promise that spring will come.

I awoke this morning to a heavy glistening sheet of white covering my windows. The snow had fallen so perfectly overnight and it clung mightily to the world– embracing everything it touched with a breathless beauty as if to say all will be ok. As I get ready to face the new day, I know my lungs will sting bitterly from snow’s first arrival. But with every piercing breath I know that I am alive. I am reminded that each breath would not be as beautiful without each November. So, as I step outside and make my first footprint in the freshly fallen snow, I know November will not last and the hope for tomorrow is woven into this first snow. And the most beautiful part? The snow is still gently falling.

Love to you all.

Breathe in the beauty of the first snowfall. 

One Breath at a Time

All it takes is but a single breath for life to become so very real. In a single breath the heaviness of life and its fragility can pour into the depths of the soul. In a single breath lives a reality that is unchangeable, unfair, and heartbreaking. Within a single breath lives my very truth from which I so often times am on a quest to outrun. A truth that every breath I am given does not come without cost or heartache. A truth that is blended amidst quiet embers of fear waiting to ignite into a consuming blaze – waiting silently to steal that very breath and this life I love.

Betrayal in a Single Breath

Without conscious thought I take a breath and without a second thought give it back to the world. I take another. But this one is familiarly different.

I feel a catch as the air pours into my lungs and I grip onto the very breath that knowingly has given me this moment.  My mouth fills with a taste I’ve tried to erase from my mind. My heart sinks and every breath I’ve taken for granted suddenly finds its weight and meaning within my chest. As I rush to the bathroom I already know within that single breath lies the truth I wish I could extinguish. The bright white porcelain of my sink a glaring contrast next to the truth of this life with CF - a truth painted in the most vibrant and unforgettable color of red. The color of blood.

As I clench the sides of the sink with my fingers, a flood of past memories surge through my body. A million thoughts run through my mind and with each breath comes a familiar burning in my throat and the desperate unanswerable questions that ceaselessly accompany this life with CF. I look up and catch my reflection in the mirror - only to be met by the deafening pleas of heartache present in my eyes. The heartache that dwells within the unassuming beauty of the season of Fall. The heartache I know all too well from past Novembers. The heartache that solely belongs to the feeling that my own body is betraying me and all I am. A heartache and betrayal that would only deepen as the episodes of coughing up blood would persist through the week.

Ceaseless Hope

But in that heartache and betrayal also lies an undeniable truth and the reminder of the gift that is alive in every single breath that I am given. Within that heartache and betrayal shines the fragility of life and a truth from which I will never be able to hide. In that heartache lies a reminder of all I’ve been through, what it means to truly live, and a truth built upon unyielding hope. But most of all, it is a reminder that CF is fused to every breath that gives me life. So, with my pleading eyes I stare back at myself in the mirror and whisper the words, “just one breath at a time.” I cannot change this life with CF but what I can do is graciously take every breath as it comes to me – knowing it can all change in a single breath. So, I wait for this November to pass while embracing this season of Fall - breathing into every single breath a ceaseless hope that may smother the smoldering embers of fear caused by CF.

So, I take this life as it comes to me – one beautiful breath at a time. For within this single breath lies not only heartache caused by CF but the culmination of every beautiful moment, every burst of life-giving laughter, every loving embrace, and an immeasurable gratitude for it all. Within this single breath is this life lived beyond all odds – drenched in uncertainty, relentless hope, and endless beauty. I have learned through each season and through past Novembers to take each breath as it may come - clinging to an uncompromising gratitude for every breath that sustains me and ceaselessly believing in the hope of tomorrow. Love to you all.

Take today just one beautiful breath at a time.

Did you know we got new Breathe Bravely Apparel?
Head over to breathebravely.org and get yours before the store closes!