Thursday, March 7, 2019

Building Castles : fighting for the opportunity to live

It can be a difficult place to live in the present when it feels like the sands are always shifting beneath your feet. There’s a perpetual anxiety that dwells within me that pulls me deeper into the quicksands of CF. An anxiety that doesn’t come from an inability to fight or finding the tenacity from within to give life your all, but an anxiety that comes from being denied the opportunity to fully live. I don’t think there’s a day that goes by that I don’t think about healthcare, about how the fight to live gets more difficult, more expensive, and comes at a cost to all of those I love. I see how so many have sacrificed so much for me while I and so many like myself fight with everything we have at the chance for another beautiful breath.

This week, positive preliminary results were released for the clinical trial of the VX-445 Triple-Combination therapy that targets the underlying cause of CF. This drug has the potential to significantly impact the lives of over 90% of individuals with CF that have at least one copy of the mutation F508del. This is what I and so many like myself have been waiting for. This is the living hope not only for a single tomorrow but for a set of many. But, paired with that hope is a bubbling anxiety that it will come at a significant cost. I think about the potential to be given a future never imagined and the potential for it to never come to fruition because that future costs too much, is a burden to those I love, or is untouchable because of ever eroding protections for people like myself with high medical needs.

I know from the outside it can seem simple to believe that we are too expensive, that it shouldn’t be the responsibility of others to shoulder the expensive burden of such a disease. I understand that. But, I live on the other side of that. The side in which I’ve watched my husband take a second job to pay my ever-increasing medical bills - knowing deep down they’re only going to get more expensive and complex as CF itself progresses and any and all life-extending therapies will come at a rising significant cost. To live with an anxiety every day that there are people entrusted with power who don’t believe your life lived with a pre-existing condition is worth protecting is a very disheartening and crushing reality. It’s also crushing to watch those you love be willing to sacrifice everything for you. It’s an anxiety that makes thinking of today, let-alone tomorrow unsettling at times. Especially, when you know such shifting sands aren’t best for building castles. Love to you all.

Today, close to 150 CF advocates are taking part in the Cystic Fibrosis Foundation's March on the Hill in Washington D.C. where they are telling their personal stories to elected officials about the importance of adequate, affordable, and accessible healthcare for those not only with chronic illnesses such as cystic fibrosis, but all those living with pre-existing conditions. While family, friends, and passionate advocates are marching on The Hill today, we can help them as well in this movement by sharing our voices online for this impactful day of action. Please take a quick moment and visit the link below to send a message to your representative(s) : Online CFF March on the Hill

Tuesday, September 4, 2018

Searching for Ourselves

From the moment our eyes begin to take in the beauty of the world, and our lungs drink in their first breaths of life-giving air, we are searching. Without a preconceived thought, we out-stretch our hands towards the world, searching. And as the years pass and our life’s story begins to unfold, we write its pages on the pursuit of something born deep within us. Our lives shaped and inspired by our search for connection and in those connections, a greater community. The passing and promised years inspired by a silent search for something beyond ourselves - a connection reflected in inclusion, understanding, and an embraceable empathy. A connection rooted in knowing we are never alone.

A Heavy Truth
I can recall specific moments from my childhood in which I remember standing in a room filled with people and having this heavy, yet hollow feeling inside my chest. A heaviness coupled with a truth I did not yet fully understand or know. That feeling is actually never far away no matter the years that separate me from those early memories. If I close my eyes and press the palm of my hand against my chest I can still feel a bit of that heaviness radiating from deep within my chest - a heaviness I would come to understand as an emptiness that I have been seeking to fill my entire.

The thing is, I didn’t realize the depth of that emptiness until I saw it reflected in the very thing in which could only fill it - a community connected by a truth born to each of us. A rare truth called cystic fibrosis. A community where none of us had to feel as if we needed to hide or to be anything but who we are - genetic flaws and all. While CF is an incredibly isolating disease, its community is built upon some of the most meaningful and deep friendships imaginable - connections bound by acceptance and understanding. But, it is so much more than that.  It is in that pervasive quest for connection and community that we are seeking the reassurance of a truth that we are not alone. There is no more beautiful of a feeling in life than knowing we are not alone, in knowing someone not only wants to understand but truly does. It’s that connection through truth we each seek our entire life that lays the groundwork for life’s greatest meaning.

Never Alone
That meaningful connection is what makes it so very difficult when a part of that community is lost. The last few months have been significantly hard in the CF community with so many beautiful lives lost - a neverending reminder of the cruel and merciless nature of cystic fibrosis. What is most difficult is the feeling of helplessness when it comes to supporting others as a part of your connected community. It’s hard for any of us to see people we care about go through any difficulty, sickness, or trial. With that said, I’ve known no greater heartache than watching my friends with CF endure its harsh truth. It’s always made even more difficult by the fact that I cannot be physically present for them. I feel that same heaviness in my chest as I did when I was but a child, but today, it aches because of the cruelness of an unforgiving disease. But through those deep feelings of despair and loss, may we be reminded that it is in knowing the depth of each other’s struggles and joys that we have found the greatest of truths - the embraceable truth that none of us is ever truly alone. That we are connected to something greater and deeper beyond ourselves.

The Beauty of Connection
Here’s to the memory of those beautiful people and the lives they changed through connection and building a meaningful community. May we share the same beauty their lives have shown each of us through acceptance, empathy, and the act of fiercely living. May every breath we give back to the world reflect the meaningful relationships that have inspired each of our lives and shaped us into the people we are at this very given moment.

It is our life’s greatest quest to find where we belong, to inspire life-changing connections, and consume our hearts with meaning. While our own hearts will always be in search of such a place, we must inspire to create within ourselves the same for others - a sanctuary of acceptance, inclusion, and embraceable empathy. Today, remembering all the beautiful individuals we have lost to CF, instead of my usual closing I end with a quote from the dear Claire Wineland who was an amazing force of positivity, honesty, and acceptance. “Be yourself, love yourself for who you are.”

Tuesday, May 29, 2018

Breath by Breath

My soul is washed with the warm glow of morning sun that without hesitancy or without prejudice drenches everything in its reach with a quieted reassurance. 

For a brief moment I feel my breath escape from within me - feeling it catch upon itself as it’s given back to the world in which has gifted it to me. In that moment, I neither inhale or exhale, but merely hold onto the moment as if the world merely has stopped. I lose myself in the embrace of the sun’s forgiving rays and I know. I know that the winter has passed and I have made it.For I have spent the last seasons living in a relentless hope that I, again, would be gifted this glorious moment - the moment of my soul’s true spring. That moment for which my heart truly lives. 

Season to Season

I can’t help but reflect upon past years and be filled with an untouchable gratitude for this moment. But, my soul also aches with an unspoken reality. A reality that every year seems to demand a bit more of me. That with every year comes a cost, both literally and figuratively - a cost for not only myself but those I love as well. It comes in the form of exhaustion, tired resiliency, instability, indecipherable complexities, and my body’s own will of inner-betrayal. It’s a cost reflected in two words that have the capability of silently existing below the surface of my outward appearance - making it difficult for myself to even fully fathom and accept its presence in my life. Those two words? Cystic Fibrosis.

As the sun kisses my cheeks and I feel the warmth of the spring embrace me, I have to keep the tears from overwhelming my eyes and emotion from overtaking my heart. Because for a brief moment, I let myself live in the moment while looking ahead to the future. To be truly real, living with CF is hard - mentally, physically, and emotionally. The hardest realization is that I know it doesn’t get easier, nor does CF “get better.” It’s progressive in nature no matter how hard you’re fighting every day. And sometimes, that continuous fight for mere stability can feel overwhelming and exhausting. Especially, when you feel CF silently tearing away at you, breath by breath.

My Sun-drenched Soul

Sometimes, all I want is to feel the unbiased embrace of the sun - merely existing in this beautiful moment for which my heart truly lives. A moment void of pain, lung function numbers, hemoptysis, and unanswerable questions. I take a deep breath and catch those tears from falling as I do my best to root myself in this very moment. But again, my mind can’t help but wander from the past, to the present, to the future - reflecting on how differently I feel in my own body from past years. I can feel the pace of my heart quicken as I think about how this body might feel next year, and so on. I think about how that affects the people I love. I stop myself from spiraling down that unknown and unforeseeable road. 
Instead, I calm my mind and simply focus on the mere fact that I am alive in this glorious moment. I breathe in all that life has so generously gifted me, and most of all, this gorgeous day for which my soul has yearned for all winter. With every breath I remind myself just how incredibly lucky I am to have these lungs, this body… this beautiful sun-drenched life. Most of all, I remind myself to gratefully live breath by breath.

Be embraced by today's sun.

Join us for Team Ashley for Great Strides this weekend! Team Ashley

Thursday, March 29, 2018

Inescapable Instability - Living the Life Unimagined

The most beautiful and best of days are never the easiest ones, nor are they usually what we would have envisioned them to be. These beautiful days are often born out of continuous change, uncontrollable conditions, and unplanned circumstances. Yet, these memorable and meaningful days give the deepest and most life-giving joy one could ever know and have the potential to be our best of days.
To say the last month has not laid itself out as I had envisioned would be an understatement. But, to be honest, much of my life has not been what I had envisioned, nor has it followed any sort of predictable path. One of the hardest things I’ve had to learn and embrace in this life is its instability and how different my mind and my body want to live. No matter how sensitive and mindful I am to the unexpected and ever-changing dynamics of cystic fibrosis, to not only physically survive this disease, but most of all mentally, I’ve had to learn to live a life of compromise - pressing on as I know the world does not stop, while at the same time always knowing there will be those days in which CF unforgivingly will call the shots. I press on knowing that deep down, these are the best of my days. That very deep embodied understanding translates into a constant internal restlessness. A restlessness in which I am seeking to soothe each day with every ounce of passion, strength, and gratitude that swell within the tides of my being. Because what if these are, easy or not, the best of days and I did not live them? What if I merely waited for tomorrow, trusting they should be there?

Inescapable Instability
For the last several months, my heart, my mind, and my lungs have been looking forward to the opportunity to escape winter’s harsh and never-ending bitterness in South Dakota and be transported into the radiant warmth and salty air of coastal Florida. It was to be a time where I could merely just breathe. A time for me to step away from life’s chaos and wholly reflect on myself, this life I get to live, and merely exist in quieted gratitude - reawakening my heart and mind to the endless beauty I breathe in every day. To some, escaping to Florida may have sounded ridiculous, frivolous, or even selfish. And, in all honesty, it was. Especially, as I think about the medical bills piling onto my kitchen table at home - each eagerly awaiting my return to remind me of CF’s inescapable and costly presence in my life. There is, indeed, a pang of guilt anchored at the bottom of every salty breath I inhale, only pacified by exhaling tearful gratitude back into this beautiful life I feel so privileged to live and the irreplaceable people who fill my life.

Escaping Reality
As I let the ocean’s breeze wash over my skin and feel the warmth of the sun radiate to the center of my soul, I know that with all that I am I needed this time away. I needed this time to step away from the beautiful chaos that encapsulates my life at home, and for a brief moment, feel as if I had escaped CF.  Most of all, I needed to immerse myself in the resounding waves of truth that swell within me that these are the best of days, and all I can do is merely live them. Most of all, I needed to just breathe in the beauty that is my honest life.

But, I have not escaped CF, nor will I ever. How foolish of me to think I possibly could. Instead, a few weeks before I was set to leave on this renewing adventure, I found myself with Influenza A, a short hospital visit, and a generous course of cocktails surging through my veins. As always, CF reminds me of its uncontrollable, unpredictable presence in the most inopportune of times. Amidst those times I silently plead for CF just to let me live the life I’ve envisioned in my heart and in turn, push harder through life - hoping to outrun it. We (I say “we” because this beautiful life we get to live whether it involves CF or not, is always a group effort) had hoped my CF lungs had weathered the tumultuous and unforgiving storm of Influenza A. In my mind I kept mapping out what the days leading up to my departure would look like. It was just going to be a quick “bump” in the road. Meaning, CF would flex its angry muscles a bit and there might be a bit more chaos to the usual day, but nothing I couldn’t handle or couldn’t outwill. In my mind, it would all be over before I boarded the plane to go south. Truthfully, I think we all had envisioned these days playing out differently.

Instead of pulling Penny just in time to escape to the sandy shores of Florida, I blew the lowest numbers I had in years, a 39% FEV1. While still not my lowest ever, my emotions churned in an uncontrollable fury of desperation, betrayal, and disappointment - the same feelings I felt so many years ago when CF unapologetically confronted me with my own life’s uncontrollable realities. Realities that sent me into a spiral in which I didn’t think I could survive mentally, emotionally, or physically.  

The “We” of Life
Most people would have told me to cancel the trip if they had known the extent of what my body was enduring. That traveling, and for an extended period of time, was not probably in my best interest. That being 1,700 miles away from my Care Team at such a time would come with great risk, and in fact, could have irreversible consequences. But, before I even had a chance to think about my options or let my emotions overwhelm me, my Care Team had already set a plan in motion for me to go to Florida. No matter the miles they were right there with me, ready to manage the complexities of my unpredictable and stubborn body. I think they knew I needed this time away just as much as I believed it. Even writing this my eyes fill with tears and I feel the heaviness of emotion on every breath I take for all they are in my life - for merely caring about my life and all that means. But I know they, too, see these are the best of days, and that a life with CF means living in its unpredictable uncertainties and learning to balance atop whatever waves may crash ashore.

Have the last two weeks been what I had envisioned them to be? Oh, my goodness, no. These two weeks have been far richer, more meaningful, and have been more life-giving than I could ever possibly say. Have they been easy or simple? No. But, they have been some of the best and most beautiful of days I’ve ever lived. In truth, this life I get to live is nothing like I had ever envisioned. It is more meaningful and beautiful than I could ever have believed possible. And it is because of life’s continuous thirst for change and its uncontrollable circumstances there will be days that are not easy, but they, too, will have the makings to be the best and most beautiful of days. Without them would we know the weight and worth of such a beautiful life? I don’t believe so.

The Best of Days
So, lovingly embrace your life as if these are your best of days. Take the trip. Go for the run. Read a book. Push yourself to do that in which seems impossible. Do what your heart needs you to do, whatever that may be. And lastly, take a breath and breathe in the beauty of this very moment wherever life may find you. It is in these beautiful moments life seems to stand completely still - allowing us to completely exhale for a moment and see today for all it is. It is in that stillness, if even just for a brief second, our hearts and minds are silenced to our own weighted expectations of what we’ve envisioned our lives to look like and our mind’s deafening plight. It’s in those beautiful moments we are able to not only see our journey for what it all is, but are enlightened with the humbled realization that the most challenging of days are what help make the best and most beautiful of days. Love to you all.

Monday, March 26, 2018

Facing Your Sunset

The sun sets upon the deepest and most brilliant of hues. Streaks of rich magenta are bridled against the soft yet embracing amber rays of the sun. As the sun dips below the horizon, I suddenly become aware of just how quickly day turns to night - of how quickly I'm losing today. As I stare into the setting sun, I can’t help but feel this desperate urge to outstretch my hands towards the horizon and cradle the sun in my hands - holding it just above the horizon as to not let the final moments of this day disappear.

As I stare into the vast horizon, its beauty leaves me truly breathless, and I find myself fighting a rising lump in my throat that has been building for some time - a well of emotion encapsulated in tenacious stoicism I grip tightly to, just to merely survive some days. The setting sun reflects off of the calmed ocean water like a mirror into my soul - causing my heart to desperately ache for the gift of time. For the last week, I’ve been gifted countless breathtaking sunsets set upon an unforgettable seascape. Every night, the sky painted with the most stunning and awe-inspiring colors and textures - transforming into something more spectacular with each passing breath. Most of all, each has been a priceless and purposeful gift my soul has needed more than I could ever possibly say. A gift that forces me to reflect on my own life, its unchangeable truth, the brevity of it all, and the unique beauty that is painted upon every breath.
A Blinding Chaos
My life lived in the middle of my big little city tends to engulf me in its steady chaos. And to be honest, I feel most alive when every moment is consumed. For better and for worse, I’ve learned over the years it is a way in which I steadily cope with the uncertainties of life, its uncontrollable conditions, this thing called CF, and a tomorrow that is never guaranteed. To my own demise and flawed character, as the busyness of the world around me escalates I wholeheartedly immerse myself into its rhythmic consuming pace - very rarely noticing the spectacular colors adorning the evening skies with every setting sun just outside my window.

In all honesty, I know that I subconsciously avoid those sunsets - believing that in doing so time itself will stand still. But, it’s so much more than that. At the very core of all I am, what I truly am hoping for is this unstoppable and ever-present reality in my life called cystic fibrosis will stand still, to be frozen in time, or most of all, for its progress to merely cease. I shield my eyes and heart from the sunsets and the realities of CF. I shield them from its unforgiving presence and its evident reminders of life’s brevity.
When the stunning silent painted skies do catch my eye I feel the beat of my heart quicken, a catch in my breath, and that familiar heartache present in my chest. I quickly close my eyes, take a deep breath, and turn back into my busied world, pressing forward with nothing more than the deep wish to hold a sunset within my hands.

Sunrise to Sunset
Even after the sun disappears from the horizon, the ever-changing sky paints the most awe-inspiring views. As the sunset's breathtaking radiance pours down upon my face, I feel the ache in my heart turn to a humbled and inexpressible gratitude- a gratitude that could never be adequately conveyed through words but only seen through the stirring reflection in my eyes and felt by placing one’s hand atop my heart. While I will never be able to hold time between my hands, nor will I ever be able to stop cystic fibrosis from vying to steal every last breath I am given, I will always have this very moment - one that is painted with an abundance of incomparable life-filled beauty and built upon a collection of sunsets past. I’ve learned even when the last bit of light disappears into the horizon and I feel that pang of sadness and emotions swell beneath my surface, that tomorrow will bring with it a glorious sunrise - casting a new illuminating light onto another gifted day. A day I intend to live and love to its very fullest - stepping outside to not only see and feel the spectacular beauty of the setting sun but breathe in its unmatchable beauty. A day in which each one of us has been gifted to live and love to its fullest. A day in which when it comes to a close we can gratefully bask in the the beauty of its glorious sunset. After all, we are not losing today when the sun sets but gaining a beautiful new tomorrow. Love to you all.

Give yourself a gift and breathe in the beauty of tonight’s sunset. Even better, share your sunset.

Friday, December 15, 2017

A Living Wish

They lay silent within our lips while enveloping our heart and mind in a deafening current of wonder. They give life to every breath and breath to every moment of our life. They fill our souls with a hopeful hunger and give inspiration to our life’s journey. They’re the wishes we silently set our future upon.
As a child we’d stare excitedly into the flames flickering atop the cake in front of us, and wait in anticipation to free the wishful echoes of our heart - setting them courageously upon our breath to extinguish the celebratory blaze. We send each hope-filled wish silently into the world hoping that one day it may reverberate back to our being in the form of a truth. Whether we are five or one-hundred and five, it still is the same. Little do we realize that every day we wake, that wish along with so many others, set themselves upon the curious wonder that makes up our lives and inspires our journey. The most beautiful thing in life is when that very wish lives upon our heart, and we see it reflected not in the material world around us but within the depth of love and gratitude that lives within who we are. It is a living wish within ourselves that has the power to shape how we choose to live and see our own lives.

A Birthday Wish
It seems to happen without fail with each passing year. I awake on my birthday to find my heart a bit heavier than when I slipped into sleep the night before. Each breath weighted with the significant realities of what another birthday truly means. I lie there a bit longer than usual - feeling the magnificence of the simplest thing and how it influences my life. I can feel the heaviness on my heart grow. Not from sadness but from an unparalleled humbled gratitude for being given another birthday. A birthday that thirty-one years ago would have been believed to be impossible. A birthday I know for which so many have wished. A birthday for which I have wished. As I lie awake greeting this new morning, feeling each breath enliven my body, I see last year’s wish not only before me, but feel it alive within me. Another beautiful year that was never guaranteed. Another year that was only possible because of the love, dedication, and tenacity of so many people - to them, I and so many owe every breath. With every year I’m given to look back upon, I realize even more just how priceless this beautiful life truly is and the people and memories that make up every moment.

One More
Just by happenstance, my regularly scheduled appointment with my CF care team happened to be on my birthday this week. Strangely, it seemed only fitting that I spend my thirty-first birthday with them - a day in which years ago seemed unreachable. A day in which when I was born was merely a distant and seemingly impossible wish like so many others born with cystic fibrosis. But, that’s the beauty of wishes. It’s because of the power that lies within a single wish we can celebrate another birthday. A day we’d celebrate not just as my birthday but our birthday. We are living proof that a simple wish can be born of impossible circumstance and their truth can flourish within the perseverance, passion, and heart of those who share the very same wish.

As I sat there in the familiar exam room, I couldn’t help but be humbled by the significance of where I was and the people that surrounded me. For I knew every breath I took was because of each of them and these thirty-one years they’ve fought to make that single wish a reality. A wish for just one more.
One more birthday.
One more meaningful memory.
One more beautiful breath.

I am more grateful than I will ever find the words to express for each of you and to celebrate this beautiful birthday. What did I wish for this year on my birthday? The single thing I always wish for - just one more. Love to you all.

Don’t just make a wish. Live your wish.

Monday, December 4, 2017

Surviving to Live

In each of our lives, difficulty finds its unique way to make itself known. It comes in many different forms and knows no discrimination. It thrives on the seen and unseen moments of our lives and challenges the unrelenting spirit that dwells within us. It makes us question our resiliency and whether the strength in which we believe holds us together can actually endure the obstacles that reside within the past, present and unknown challenges of the future.

November 2014
But it’s in that difficulty we learn to adapt - to survive. It is in how we survive we find meaning and purpose. We learn to either protect ourselves from that place in which we feel most vulnerable - choosing to exist in a place of false assurances where we exist holding our breath, clenching our eyes tightly shut, and bracing for the fall we inevitably fear. We do whatever we can to avoid that place of emotional vulnerability within ourselves. That place where fierce honesty and boastful raw uncontrolled emotions collide. But, no matter how tightly we hold onto each breath or blind our senses to the passing moments, an untrusting apprehension is always present within every step we take and every breath that gives us life.

Or, we learn to breathe bravely in the moments we are given - realizing that it is in the fear and the fall itself that we in fact learn just how much we are able to endure. It inspires us to either hide away from ourselves and the world, or clutch onto the life we are given - embracing the beauty that makes it our very own. It’s in that very place we learn not only to survive, but what it exactly means to live.

Defining Novembers
November 2015
With every November and December I apprehensively step into a set of months that have shown little mercy in past years. As the calendar turns, I find myself holding my breath as I become acutely aware of each fleeting moment that is woven within each breath I am given. My body tensed and ready to respond. My body seemingly always on guard to what the unforgiving days of a life with cystic fibrosis may bring as I desperately distract myself with the chaos of life. Emotions wrought with uncertainty while grounded in the vulnerable truth of knowing too well CF’s betrayal.

December 2016
Through it all I’ve learned to adapt. Or, most of all, I’ve learned to survive the best I can as this life that has been gifted to me. Months that have been known to hold so much devastation, however, have also held some of the most life-defining beautiful moments of my life. Moments that have been overwhelmed with goodness and have undoubtedly shaped me into the person I am today. Moments that have helped create the foundation for some of the most meaningful relationships in my life. Moments that would enlighten my future with a purpose I never dreamed possible.

To Live
So on the fresh breaths of this December where do I find myself? Reflecting on the kindness of this past November. And, in its unique stillness, I fervently feel how every beautiful breath was equally born of its own quieted bravery. I see too, how it was a gift of survival. A gift that I will use for future days that may be just as peaceful or may just hold their own unique difficulties. Whatever those days, months, and beautiful moments may bring to my life, I know I will not just survive -I will live.

November 2017

Regardless of the moments that define our lives, we will find moments of difficulty, heartache but also moments of unparalleled beauty. It’s not about comparing journeys or focusing on the difficulties or obstacles that we’ve each uniquely endured, but is is about what we do with those diverse moments we have been gifted. It is about how we learn to breathe bravely amidst that untrusting apprehension and allow it to inspire us to not only survive but to truly live. The greatest of love to you all.  - Ashley Don't just survive, live.