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.”

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

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.

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.