Realizing Hope : Changing the Unchangeable (Day 2)

For thirty three years I have known nothing but a life with cystic fibrosis. A journey plagued with nothing but heartache and loss. Loss of dreams, loss of lung function, loss of freedom, and loss of life -  figuratively in the sense of my own and literally in the form of my brother and friends afflicted by the disease. I have seen and felt the devastation of CF. I’ve seen the burden it not only places upon those who live within its grip, but also the people whom love and cherish those that live such a circumstance. A circumstance that until now for many of us has been unchangeable. Whose course for decades had been similarly yet uniquely decided, given only the certainty of the present moment while clinging to hope that sustained us.

There still may be no certainty to this life or this body of mine that has been riddled and beaten by CF for over three decades, but for the first time in my entirety, there’s a hope realized in possibility. And that possibility comes in the form of three small pills taken every day for the rest of the days I am gifted. 

What is Trikafta? 

It’s a culmination of brilliance, years of tenacious research, trial and error, and most of all, resilient hope. It’s the fourth drug of its kind for CF that targets the underlying cause of cystic fibrosis at the cellular level, but is the first approved for individuals with just a single Fdel508 mutation. There are over 1,800 mutations that cause cystic fibrosis - manifesting so differently in every unique individual and causing their own set of progressive and fatal complications. Clinical studies in Trikafta showed great promise with an average lung function increase in participants of 14%. While there are no guarantees that all or any of us who begin this journey may know such extraordinary gain, and by no means is this a cure, each of us cannot help but live within the unbridled hope that our lives may know simple stability and the ability to dream beyond today. 

As tears continue to find their place upon my cheeks throughout this emotional journey of gratitude, I remind myself as I start this new day that any and every breath I am given is a beautiful one, no matter the number that fill these lungs. The hope that lives upon every breath of yesterday, today, and tomorrow is because of the life-changing people that have poured themselves into giving every one of us that lives with CF another beautiful breath, and who continue to do so. For each of you I am grateful beyond measure. You are daring to change that in which was dared to think unchangeable and will not stop until we ALL may know such a possibility. Love to you all.

Feeling its Effects - First 24 Hours - It was so special to share the moment of taking my first dose of Trikafta with someone who has been such a significant part of my CF journey and so much more. It's a moment I will hold in my heart forever. Within an hour of taking my first dose, my usually overly dry mouth was anything but dry. For the first time in years I had an abundance of saliva - to the point I felt as if I was going to start drooling. Also, my usually dry eyes which make me feel every blink suddenly were moist with renewing tears. It may seem like a simple thing, but it's pretty crazy to feel the effects of how my cells are changing in real time - for the first time in my life, for the better.




*To learn more about Trikafta visit https://www.cff.org/Life-With-CF/Treatments-and-Therapies/Trikafta/. And to support further research efforts so that all may know such possibility donate to the Cystic Fibrosis Foundation at cff.org

Realizing HOPE - Trikafta

Hope. It’s where we live to survive. It’s where we’ve turned our mournful tears into something that, in turn, becomes what sustains us instead of destroying us. We heal, we repress, we move forward - not forgetting but simply motivated to fix our eyes upon the present so that we may have the strength to endure the future. Not only for ourselves, but for those we love. We are nothing more and nothing less than the hope that courses through our veins. Our tired spirits revived by a courage inspired by the people in which we fight to embrace for another day - drenched in a hope that connects the certainty of this very moment to a future that pleads to be known in every beautiful breath. 

I have uncontrollably shed more tears in the last few days than I have in years. It’s the realization of hope born to a reality I never truly dared to think possible - one that I have honestly protected myself from thinking about. Today I take my very first dose of Trikafta, a drug that has the potential to transform this life and truth of cystic fibrosis and the very hope that has sustained me into something I cannot even begin to fathom or begin to find the right words. There are only tears of overwhelming gratitude.

The transformation of hope into a living dream is a terrifying and emotional leap - one filled with no guarantees. The only guarantee is this very moment and the hope it will always hold. Join me here for daily posts as I share the first 30 days of my hopefully lifelong Trikafta journey. 

As I begin this Trikafta journey, I can’t help but carry on my heart the people who are still waiting for their own hope to be realized in such a way. The tears I shed overwhelm my eyes and drench my cheeks - rooted in a deep heartache for those who are waiting to have their own hope born of new priceless possibility. Please keep them on your hearts. 

Love to you all. 

Forgetting CF

There isn’t a day that goes by that I don’t think about all that is life. About how different tomorrow could possibly be, or how different even today could have been. I think about yesterday, am grateful, but silently wish that I had done more. Such ruminations usually find me as early as the moment my feet find themselves beneath my body and my lungs turn to face the day. I brace myself to cough - getting the first true sense of the day while pushing through the breath-gripping stiffness left by the night. Like the bud of a rose tightly wound in upon itself on a cool morning, these lungs, too, aren’t ready to open for the day. I do my best to breathe life into these lungs so that their tight embrace upon themselves might open to let each breath fully, yet unsuspectingly bloom.

I do my best to shed the weight left by life’s heavy questions - breathing bravely as I set out to give the day all I am able to give and release myself of CF’s defining grip. My mind constantly at odds with itself - trying to positively define myself in the wake of what it means to live with CF, yet coexist in a world in which most people never have to live with it, let alone think about it.

- There is CF.

For most of my life I’ve worked hard so that you'd forget about CF. To give you the gift of not worrying about this disease and its weight that is ever-present within every breath - striving to depict CF in a light of constant strength, perseverance, and unwavering hope. I do this not only for you, but for myself. It's a way to focus on the beauty of these 65 roses rather than feel the deep unforgiving thorns that leave their countless scars deeply embedded in my being. It’s always been a means of coping for me. It’s been a way to not feel defined by a disease but instead be merely bettered by an unchangeable diagnosis. It’s a way to try and forget the difficult and unforgiving side of CF and its irrevocable presence in my life. Most of all, it’s a subconscious way in which I try and protect those I love. And, I can do so because of how invisible CF can be to the unsuspecting eye - easily forgotten or excused away when not readily seen or felt.

But, the thing is, I can’t forget about CF. Why? Because in every cough, in every breath that catches just a bit, in every wave of fearful panic and sharp pain rooted in hemoptysis, in every VEST treatment, pill swallowed, IV antibiotic, port access, visit to the pharmacy, and unpaid medical bill -  there is CF. In every contemplation of my past, reflection of my present, and aspiration of a future - there is CF. In all of the good and beauty that permeate my life - there is CF. In moments of heartache and uncontrollable tears - there is CF. In every note I sing - there is CF. In every relationship I am grateful to know, realized or not - there is CF.

Carrying It Alone

And sometimes, that can be a big burden to carry on your own. CF can be an incredibly lonely disease. Not just for myself, but the 70,000 other individuals that live with CF as well. But, it’s not just them. It’s their families. It’s their closest friends. We cannot forget CF. It’s woven intricately into our lives and inspires each of our unique stories. While I am not defined by this disease, it does undoubtedly influence not only every breath that I am gifted, but the eyes in which I see the world, the heart in which I yearn to share, and the beauty I am determined to give back. Part of that beauty will always be inspired by a disease that one day, I long for us all to be able to forget - together. A day in which the only roses that may leave scars upon our lives are those that we put in a vase for all to marvel at because we simply must share such unforgettable breathtaking beauty. Love to you all.

What's your unforgettable?

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Together, let’s be the voice of CF.

This week is the final week of Cystic Fibrosis Awareness Month. A month devoted to giving extra voice to cystic fibrosis. I am asking that this week you take a moment to just breathe, to be wholly grateful, and, most of all, in that very beautiful breath remember cystic fibrosis and its unforgettable community of people. Together with hundreds of others whose lives have been impacted by the diagnosis of cystic fibrosis, this coming Saturday, June 1st, I will be walking as a part of the Great Strides for Cystic Fibrosis which raises money for the life-saving work of the Cystic Fibrosis Foundation.

Sign up to walk, be a virtual walker, or donate to Team Ashley. May we come together not defined by this disease, but as an unwavering voice of strength rooted in a capacity of meaningful compassion - fighting together for more beautiful tomorrows for all whom are impacted by cystic fibrosis.

Great Strides for Cystic Fibrosis

Saturday, June 1st, 2019

Riverdale Park, Sioux Falls, SD

Invisibly Seen: Ruminations on Five Feet Apart

I sat at the center of an empty theater with the essence of my life being reflected from my eyes - a moving image that seemed to have been pulled from the reels of my deepest unconscious being. It was epically surreal and constant feelings of deja vu reverberated through my body. I not only saw themes of my own life drawn out in technicolor before me, I felt them present within the very breath that poured into my body.

In-Visible

Most of all, sitting there I felt the echoes of diverse emotions permeate the weakened and patched fractures of my façade - daring to overwhelm me with a truth in which I internally battle to accept and fully embrace both physically and mentally. While what I saw isn’t an exact depiction of my personal journey with CF, there undoubtedly were many unmistakable moments of familiarity that dredged up a well of emotions. Ones in which I knowingly keep deeply suppressed and safely removed from the rawness of the world. Ones which silently accompany me through this life in which I’ve dedicated to living my truth - a truth founded upon CF that while may be visible to the world, can yet remain truly unseen.

Sitting there drenched in the theater’s darkness and embraced by its comforting anonymity, I felt for once in my life truly seen. While every individual with CF has a different living truth unique unto themselves, there is an unfathomable reality that much of the world has never been able to even begin to imagine. This movie in no way begins to depict every unique and complex story of CF. But, it does authentically capture CF’s unforgiving and unrelenting mental, emotional, and physical realities. It gives us the chance for CF not only to be visible, but for each of us and our unique stories to be truly seen and most of all, shared.

Unspeakable Empathy

I left the theater that day struggling to comprehend what the general public would possibly feel during the course of those two hours and fifteen minutes. They simply couldn’t begin to know or understand what it was like to see your own truth depicted on a screen with such evident care and honesty. Mark and I had the theater completely to ourselves, so I will never know such an audience’s reaction. I couldn’t help but wonder if those who had seen the movie were experiencing the same raw emotion churning within them as I was experiencing. I wondered if they would walk back into the light of the world and see things a bit differently - if they would see CF a bit differently. Did they even know what CF was before this movie? Would they see not just a disease, but a real person? A population of people? Would I be able to see understanding in their eyes? An unspeakable empathy forged in action for fighting for more beautiful breaths? Could I see my own fight for every beautiful breath reflected in their their own eyes and a tenacity within them to fight for more?

Here’s to seeing the beauty in every breath - even those projected onto a screen. Here are some ways in which we can be a positive and life-giving part of this movie’s ripple:

1). If you are an individual with cystic fibrosis, live your truth and share your story! We are listening.

2). If you have not seen the movie, “Five Feet Apart”, I urge you to do so to get a small glimpse into the complexities and demands of CF. Remember, this is a fictional story, but the portrayal of CF and its realities are thoughtfully depicted in the movie. Thank you to Justin Baldoni and the cast of the movie for taking such care in the portrayal of CF and the overall representation of its community through the friendship and love shown through Claire Wineland.

3). TAKE ACTION. If you truly see us, join us in the fight in adding more tomorrows for each of us living with CF. Make a donation to www.cff.org. Your donation could literally be life-giving.

4). Watched the movie? Reach out to someone with CF and start a conversation. Ask questions, get involved, hear our diverse stories. Most of all, become part of our tenacious and strong community.

Love to you all.

*These are my personal opinions and thoughts in regards to the movie, "Five Feet Apart". Opinions and experiences will differ for every unique individual both living with CF and those who are hearing its name for the first time.

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.

GIVING VOICE

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

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