A blog about my beautiful life living with Cystic Fibrosis: to educate and help promote awareness and understanding associated with CF.
Dedicated to sharing my experiences of the good, the bad, the ugly, and the funny, so that all who so eagerly support the fight against CF, will know how much their love and support truly means.
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.
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.
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.
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.
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.
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.
There are specific moments in our life which cause us to pause - forcing us to retrace our life’s steps and look at the greater work that represents our life and who we are at this given moment. The beauty of those moments lies in being able to look back on our days as they have accumulated and be gratefully enlightened - giving us perspective on how everything we’ve been through in our life and every encounter great and small has played a formidable part in all we are. It’s in that very moment of humbled reflection our past seems to wholly marry the present and gives strength, assurance, and purpose to our uncharted future.
A few weeks ago, an evening that will forever live in my memory and heart came to life. A night dedicated to making unforgettable music, sharing inspiring stories that were rooted in the beauty and power of singing, and celebrating the incredible people that have breathed life into a vision called sINgSPIRE. As I stood next to my fellow singers and dear friends, embraced in overwhelming emotion and washed with the reverberating echoes of life-giving music, I felt my past clearly meet my present while breathing a life-giving perseverance into my future. It was as if the entirety of my life’s journey was reflected in the eyes and hearts of those surrounding me. Each unknowingly reassuring me that I was and am where life has always meant for me to be - sharing this life-giving song.
An Unspoken Connection
If you would have asked me twenty five years ago what I wanted to be when I grow up, I like many five year olds would have told you I wanted to be a singer (or a professional dog handler that shows dogs. To many who know me this is not surprising and I may or may not have in recent years run our two dogs around the back yard in a circle holding treats). As the years passed and I made my way through life as a teenager, I never was able to rid my mind of singing. Most of all, I was never able to rid my heart of the deep unspoken connection I felt when music passed from my lips and set sail on a breath born from these unforgiving lungs. A connection I now realize was something that was and would continue to be truly life-giving.
I vividly remember my senior year of high school and my first years of college and the incredible weight of discernment upon which I felt my future rested. I’d wrestle with a consuming self-doubt as I felt inadequate to study such a specialized craft in which I thought was only reserved for the best. And, in humbled honesty, I was not the best. I remember staring at my reflection as tears uncontrollably streamed down my cheeks - my eyes silently challenging my reflection with the resounding question, “what are you doing with your life, Ashley?” I knew pursuing a life of singing wasn’t logical. I knew it wasn’t practical. I remember knowing I wasn’t a natural musician, nor was I the most talented. But, somehow I knew even then that my life merely depended on the art of singing. I didn’t have all the answers to the deafening uncertainties that plagued me, nor did I have any idea of how it would all work out. But, there was something unmistakable that burned deep within me, a flame of courage that would continue to give me the strength to keep singing even when I wanted nothing more than to give it all up.
Finding My Voice
Reflecting back on those moments I realize those were some of the best, yet most difficult years. There seemed to be an abundance of tears as I struggled to find my voice. Or, to be honest, as I struggled to conceal my true voice and run from the life I was given. My true voice being that in which was rooted in a reality I did my best to hide from everyone and myself - a voice rooted in a reality called cystic fibrosis. A reality I desperately tried to continue to hide even through graduate school. That is, until my reality became impossible to run from or excuse away. I had no choice but to be honest with myself and everyone around me. I remember sitting in my car during graduate school just after a terrible episode of hemoptysis and pleading with my lungs to just let me sing one more song - believing my life as a singer and CF could never harmoniously exist. So, I’d continue to plead for one more song knowing deep within myself “one more song” would never be enough.
But, it was in that very moment when I was forced to embrace all I was, that I could find my true voice and the inspiration that filled it with life. It’s in that moment I saw my past, my present, and my future reflected in an untamable love and need for singing. It wasn’t about being the best, about glowing accolades, or about having your name surrounded by lights on a fancy marquee. It was then that I realized singing is about the life it gives and the unparalleled happiness and beauty it can cultivate. It’s about finding your voice and letting the song that forbids to be silenced soar upon the breath it has been gifted. It is about living a life that is giving you life - even if it is against all odds or practicality.
Who I Am There’s a catch in my breath as memories from sINgSPIRE's recent musical evening continue to reverberate through every fiber my being- overwhelming me with the weight of all its deep meaning. I reflect on this beautiful and abundant life and am left humbly speechless at the goodness that surrounds me. Tears uncontrollably well within my eyes and a familiar knot forms in my throat. I cannot help but get caught up in a moment of reflective gratitude - mentally and emotionally pouring over my past steps, the incredible people that have helped shape me into who I am at this present moment, and the undeniable beauty that lies in the honesty of my future. It’s in the beauty of that very moment I realize not only am I singer, but I am a singer with cystic fibrosis. Without either of them I wouldn’t be the person I am today and I wouldn’t know the beauty of such deep, life-impacting relationships. But most of all, I wouldn’t wake every day knowing this life I get to live is truly life-giving. And for all of that, I wouldn’t trade a single moment or note of this beautiful life. Love to you all.
as a little girl staring at myself in the mirror and locking eyes with my
reflection – analyzing my appearance and desperately wondering, “do I look
sick?” I can still feel the steeped heartache behind the eyes of that
five-year-old girl as I think of her searching for ways to prove to everyone
and herself she was not “sick” - she was
the years that have passed, when I look in the mirror I still catch glimpses of
that five-year-old girl. Glimpses in which I see a girl with those same wild yet
worried eyes – eyes that would forever
reflect an honesty simply impossible to hide. These moments catch my heart
off-guard and a pang of familiar panic surges through my body as I fear my eyes
may be betraying me. I fear my telling eyes are unwillingly affirming the world’s
definition of what it means to be “sick.” As I stare back at the young girl in
the mirror with those same wild eyes, I can still feel that same aching hallowed
sorrow that was carved deep within her existence all those years ago - an
inextinguishable heartache of wondering if the only way people would ever see her is “sick”
and if that simply was all she ever could be.
But to me,
I am not “sick”.
I am just
I am just
And this is
what 16 weeks of IV antibiotics just happens to looks like.
And this is
what $100,000 worth of hospital services in 7 months looks like.
And for me,
this is what 41% lung function looks like.
life is complicated by a disease that makes taking 50+ pills a day seem normal,
a disease that makes spending hours strapped to a VEST and doing nebulizer
treatments seem ordinary, a disease that causes the world to technically define me as “sick”. A
disease that makes the shear art of being alive a costly one – one for which I
never asked. A disease that undoubtedly has made people see me differently. But
this disease has also caused my closest “family” to encompass a priceless
community I would otherwise never know. Most of all, however, this disease has made me
embrace and live fully in the present while remaining rooted in an untouchable
hope for tomorrow.
This disease is a part of me and this is simply my breathtaking beautiful life – CF and all.
“Am I sick?”
I guess that will always be something I struggle to answer and refuse to fully see.
I am just merely living – taking each glorious day as it is gifted to me. Some of
those days remind me of the exhausting and heavy chains called cystic fibrosis
that hang on every breath I take.
days are so abundantly filled with beautiful air I forget I am breathing – making
me feel invincible. But whatever the days may bring, I am doing all I can to
live as the person I wholly am – faulty genes, pre-existing condition and all.
All I Am
As I look
in the mirror this morning, I catch a glimpse of that five-year-old girl. For a
moment our eyes meet beyond the confines of time and the emblazoned life dancing
within the eyes of that five-year-old girl remind me that I am strong. I am determined.
I am tenacious. I am loving. I am filled with an insurmountable gratitude and
love for every breath that gives me life. I am the girl with the undeniable fire
and spark in her eyes that tells the world who she is without ever having to
speak a word. I am Ashley and this is simply my beautiful life living with cystic
fibrosis. Love to you all.
What do you see in yourself when you look in the mirror?
is one of the hardest, yet one of my favorites of the year. It’s a night filled
with so many raw and diverse emotions that amass over time as I do my best to
keep them in check and shrouded in a self-protecting cloak of strength - subconsciously
suppressing them throughout the year. It’s on nights such as this that I am
reminded how quickly time is passing, just how priceless every breath is, and no
matter what the days have brought and have yet to bring, no matter how
desperately I push proving to myself I am strong enough to live this life, I
will forever be writing my life’s story parallel to an unchangeable truth called
page in my story? This night? It’s our yearly Breathe Bravely backyard
Honesty, Purpose, and Meaning
nights such as this that I am forced to see such a truth and its influence on that
very given moment. It sets my emotions ablaze and causes my eyes to brim with
tears. You see, this truth is woven within every page of my life’s story. This
truth silently sends reverberations throughout every action, every
relationship, and every breath that I am given. This simple truth, however?
This life with CF? It has made me wholly who I am. And, as tears dare to
overwhelm my eyes as I simply write such a truth, I know I wouldn’t trade a moment
of any of it. I wouldn’t trade a single breath, a single ounce of lung
function, or a single moment of heartache if it meant not living the life I am
so fortunate to live today. I wouldn’t rewrite a single page of this story if
it meant not knowing what it means to love this deeply, live this honestly, and
breathe so purposefully. In truth, CF has inspired some of the most meaningful relationships
in my life and opened my eyes and heart to what it means to truly live – many things
people live their entire lives without ever experiencing.
An Intersecting Truth
reason, this night seemed to be one of the most emotionally difficult ones I’ve endured
so far - surpassed only by its memorable and meaningful beauty. It took all I had
to keep from being buried in a medley of raw emotions. What was it exactly
about this night that left my heart and mind enveloped in emotion? It was a
culmination CF’s exhausting uncertainties and complications that have been
relentless these past months. It was seeing my storied truth before me married with the realization of passing time. But most of all, it was the sight of
seeing so many people who have impacted my life so greatly all in one place.
As I looked
out over our backyard I saw people gathered that reflected every part of my
journey. People, that without them, I wouldn’t be here today and this beautiful
thing I get to call my life would cease to exist. People who have helped shape
my past, the present, and are unknowingly influencing my future. People from
every corner of my life, there, intersected in a single moment in front of me. People
who have inspired and fervently believed in a life without limits and living a
life worthy of my own unique story - no matter my unchangeable truth. People who remind me that this truth that lives within every page of my
story has brought each of them into my life and shaped me into all I
am. For each of you I am grateful beyond words. Love to you all, now and
to everyone who came out to support Team Ashley Saturday morning and helped
make this year’s Breathe Bravely Backyard Bash so meaningful and memorable
Saturdaynight. Check out Breathe 3-65
this week on Tuesday to get a full account of the Breathe Bravely Backyard Bash
and all who helped make it possible!
From out of
nowhere I feel a catch in my breath and a well of emotion dares to erupt from
the deepest parts of my being. It comes without warning and it takes all that I
am to stifle such a determined force of emotion. I try to take a deep breath –
determined to squelch the rising tide of tears I feel daring to overwhelm me. I
do my best to shake the surging pang of familiar heartache but it is in that
very breath itself that lies the catch that dares to undo me.
chastise myself and do my best to compose my churning emotions and thoughts - giving
myself an internal pep talk and rally speech. But I silently wonder when such a
moment will catch me off guard again. I suspect the impeding presence of those overwhelming
moments and fill my mind with focused distraction – all in hopes I can further
ignore the nagging and exhausting truth that forbids to be silenced. The
nagging truth that lives in the form of denial and leaves me reacting the only
way I know how - by pushing harder.
A Familiar Reality
A life with
CF is exhausting – physically, mentally, emotionally. And the truth is, that
some days I just want to ignore it all. To push CF from my mind and live
oblivious to its unrelenting chaos – its unforgiving reality. I go through the motions of treatments and
pill-popping. I do my best to shut my mind off from the exhausting and tireless
voice of CF. I subconsciously immerse myself in the busyness of life and fix my
eyes and emotions upon the distractions of tomorrow - relentlessly trying to
live a day ahead of CF.
exactly what I’ve been doing. I’ve been ignoring CF and pushing myself harder
into exhausting distraction – doing whatever I can to keep myself from feeling this
familiar life with CF. The familiar reality of my chest tightening, a painful
and rib-wrenching cough, and a loss of lung function that unapologetically
makes its presence known with every note I sing. The familiar reality of IVs,
more hours spent doing treatments, and a body feeling stripped of energy and
But as I’ve
learned before, denial doesn’t save you from CF’s reality. It doesn’t make your
lungs burn any less for oxygen. Ultimately, it doesn’t change the truth. It
just builds a more powerful wall of tears whose force at some point can no
longer be held by the denial and determination I desperately cling to.
St. Peter Great Strides 2017
Watching the World
first time ever, I watched my family and friends walk without me at this past
weekend’s Great Strides for CF Walk. For the first time I was not walking next
to them and leading our team, proving to myself that I will always be stronger
than CF. But instead, I sat at the finish line and watched as the world around
me turned without hesitation. At that moment, I wanted to do what I do best -
immerse myself in distraction. As I desperately searched for something to keep
my mind and heart occupied, I could feel the well of emotion growing in my
chest. The well of emotion that I’ve been fighting so hard to suppress these
past weeks. The well of emotion that makes CF real.
But as I
sat there watching everyone return to the finish line, I reminded myself this reality
I try so desperately to denounce is in fact, the exact reason why every one of
us walks in the first place. We walk in the face of CF’s denial and its unforgiving
and exhausting realities. We walk because CF is a part of each of our lives in
some way. We walk for those who can’t. We walk so that distractions of tomorrow
become livable dreams.
As I do my
best to not become engulfed in my uncontrollable emotions I keep my head and
eyes fixed ahead – doing my best not to let anyone see the pain behind my eyes.
But what overwhelmed me most is the realization that I do not simply need to
look ahead but simply look beside me. There’s a hand outstretched – waiting for
me to grab hold. Waiting for me to break my locked gaze of determination and denial
with the silent yet deafening meeting of our eyes.Waiting for me to exhale and allow myself to
feel the shallowness of every breath. Waiting for me to see that I am never
alone in this journey. Waiting for me to see that it’s all ok.
bottom of my heart thank you for standing beside me, loving me through the
realities of CF, and never losing hope in tomorrow. Thank you for reminding me
there’s always beauty in every breath. Love to you all.
Walk With Us
Team Ashley and our CF community for
the next Great Strides Walk benefitting the Cystic Fibrosis Foundation as they
help give more tomorrows to each of us impacted by CF.
At the very
core of who I am there is a gnawing and ever-present voice that tells me I am a
burden. It daily reminds me that I am expensively imperfect, and with its
glaring and ugly truth it makes me believe I am worthless.
It makes me
desperate for control and to be the keeper of my own fate. It fills me with
anxiety, a deep-seated guilt, and sets me on a constant unrelenting pursuit of
proving to myself that I am strong enough to live this life by my own accord.
More than I Can Give
As CF has
proved its undeniable and unstoppable presence in my life these past weeks, that
unforgiving and unassuming inner voice has resurged within every breath I’ve
been given and with more vengeance than I’ve ever known before. As I’ve pleaded
with my body to hold in that cough that would knowingly set my lungs aflame and
as I’ve gripped to the air given within every breath, my heart has broken
knowing the truth and relentless power of this disease. It has broken because I
know there’s only so much I, myself can do to stop this all from happening.
Most of all, however, it has broken because again, I would have to take more
than I could ever give – I’d have to show how weak I truly am.
For much of
my life I have set out to prove to myself that I don’t need anyone, that I am
strong enough to handle CF on my own, and that I don’t need a hero. In my mind,
kindness and compassion have always been something I’ve wanted to limitlessly
pour out onto others – feeling it is the most priceless of things any of us can
ever give. But with this deep belief I have never wanted to admit that I, too
actually need and only survive by such kindness and compassion. Until now.
is, I need you. I need your compassion. I need your love. I need your strength.
I need your help. Simply stated, I cannot live without it. Most of all, we, cannot live without it. There isn’t
a day that goes by that I don’t think about the cost of my life, what it takes
to give me every beautiful breath that I take, and the ceaseless pursuit for
another tomorrow. It’s about $30,000 per month to be exact, not including
inevitable courses of life-saving IV antibiotics, drug research, surgeries, or
procedures to keep me alive that cost thousands more. How could I not question
the worth and price of my life? But, I also have been shown that this life I am
so fortunate to live is priceless. That this is journey I have the chance to
live is a shared one, and that my, nor anyone else’s worth is tied to the
uncontrollable obstacles that are a part of each person’s unique yet binding
I have been
given much in this beautiful life, regardless of that perpetual daunting voice of
CF that tells me I am only a burden. I simply cannot deny this gifted life nor can
I deny the sacrifices that so many incredible people make for me and continue
to make for me. I never want to go a day without living out the authentic
gratitude that fills my heart and gives life to every breath. The honest truth
is, however, that I will forever be expensively imperfect. But that is simply
something I cannot help nor change. But I also always will be Ashley -
steadfastly rooted in the beautiful truth of knowing I have never ever been
alone in this journey and this life I am given is truly priceless.
So as I
humbly share my honest life with each of you, I ask you to help me, and so many
others like myself with pre-existing and fatal chronic conditions. We truly
need you, your love, and your voice – now more than ever. This life we are each
given to live, regardless of our unique circumstance or story, and every breath
we take are truly priceless. Love to you all.
Remember, you are pricelessly imperfect.
- Sharing Your Voice -
I ask you to please take a moment today and show your
love, your support, and voice for all people with cystic fibrosis and chronic
healthcare needs. We need you. Congress will soon vote on the American Health
Care Act. People living with cystic fibrosis need high-quality, specialized
care and adequate insurance and the proposed legislation fails to protect our
Your calls and voice
matter! Getting in touch with your member of Congress is easy -- you can text
"PROTECTCARE" to 52886 or share your opposition here: http://act.cff.org/XZVStJV thanks to the
Cystic Fibrosis Foundation.