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?

------------------------------------------------------------------------------

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