Thursday, March 12, 2020

"I Cried" - from the tears of a 33-year-old with an underlying respiratory disease amidst a pandemic

I cried tonight. I muffled my sobs within the palms of my hands as streams from the shower above raced my tears to the drain. A rolling steam engulfed me as I felt myself within the grips of disbelief - grasping for a different truth.

I cried for the life I feel we have just gotten the chance to finally live and dream about and could lose at such an unfair cost. I cried at the thought of one of us getting sick and being separated during these tough moments.  I cried at hearing the panic in your voice and reading it within your texts as we realized the scenario we feared was becoming more and more real by the hour. I cried recalling the desperate look within the oceans of your eyes - unsettled within the unknowns and the honest inability to protect me. I cried because I am unable to protect you. 

I cried for the nonrefundable trip we have to cancel after waiting two years to take. I cried at the thought of not tasting the salty air - watching our favorite sunsets cast an unmatchable glow across the gulf skies as my hand would silently finds itself laced within yours. 

I cried for the people who have lost someone to this devastation. I cried for those who are oceans away and those within my city who see the same horizon. I cried for those on the frontlines of saving someone’s loved one - tired, torn, and exposed. I cried for those facing moral dilemmas of care and compassion. I cried for the uncertainty that faces us all. I cried for a crisis that is dividing and devastating our world. I cried for the days ahead in which I know will be even more difficult. I cried for my compromised community that most likely will face loss because of such a virulent virus. 

I cried for those who live in fear - paralyzed by realities they cannot fully control. I cried for those who mock the encompassing unknowns of this virus and the people trying to protect others and themselves. I cried for us all. 

I cried tonight. I muffled my sobs within the palms of my hands as streams from the shower above raced my tears to the drain. A rolling steam engulfed me as I felt myself within the grips of disbelief - grasping for a different truth.

*Please, dear friends. These are not moments in which we need to be cavalier or prove our self strength. Sometimes the strongest thing we can do is take a step back, take a deep breath, and do what is best for one another: social distancing, isolation if necessary and precautionary, good and rigorous hygiene practices, and patience. We can come out of this together, but we need every one of us to act in the best interest of our most vulnerable. 

Tuesday, February 4, 2020

Realizing Hope : A Silence Between Two Hearts (Final Entry)

When the future seems anything but promised you simply stop dreaming and start merely living - immersed and grateful in the present moment you’ve been given for the heartache of unknown tomorrows becomes too much to bare. The dreams that once permeated your life have dissolved into a silent yet palpable hope - becoming the only stability in which your life owns. And, truthfully, those dreams don’t seem to matter anymore. We mourn them, and they silently live embedded within our hearts forever as we set our eyes upon the present and simply find the most happiness amidst the act itself of simply becoming. We dare not spend our life dreaming to become, but instead living to become who are meant to be with whatever time we are given. 

Dissolving Dreams
In the last several years it has been increasingly painful to think about the future. Dreams that once fueled my future were met only with CF’s sharp realities - pushing me to become immersed within the moment and embrace the mere act of living. The single breath that bound me to this moment had become my only given grace and was the only part of this life with CF I could trust. I stopped dreaming as I could see my own painful unrealized hopes reflected in the eyes of those I loved. I felt I had lost my place a part of their future because of a disease that would forever be a part of my present. I stopped dreaming to save myself. 

Namely, I stopped dreaming about a future with Mark and a story I feared I’d never be a part of. I stopped dreaming about growing old together, about places we’d visit, the adventures that would find us together, and, most of all, the simple moments in which the future would become our best of days - days reflected in a life and love woven together through who we had not only become as individuals but had become together through everything. I stopped dreaming of a future in which CF wouldn’t write the story for us and the dreams that entangled our hearts would be the life giving hope behind every breath. I simply stopped dreaming because it was too painful when I looked at Mark to mourn the life I so wanted us to have. I stopped dreaming about the future not only to save myself but to protect Mark from the perceived possibility of living a disappointed life. For almost a decade, with every breath I’d give back to the world a piece of those dreams would follow, leaving a growing silence between our hearts. But, as much as I’d withdraw from life and press myself into the safety of the present moment, Mark would turn and meet me there - never allowing me to live alone in such a place of hopelessness no matter our reality. For dreams no longer mattered, only this very moment in which we were guaranteed.

A New Chapter
And then my life was given an immeasurable gift. A gift with no promises but instead a possibility born of realized hope. A gift called, Trikafta, - a gift in the form of a new chapter I never dreamed of writing. In the last month I’ve done something I haven’t dared do for a great number of years. Something that I didn’t realize just how much had suppressed my spirit and had withdrawn me from my own life. I began to dream again. And with every dwindling cough and day in which my body fights to find this lasting trust within itself, a dream finds itself in the form of a new hope born upon every breath. It sends a gripping pain through my chest and turns my stomach upon itself into knots. For I know how hard it was to mourn the dreams I learned to let go, and I don’t know if I am strong enough to mourn them twice. Because in truth, these dreams will most likely still be stolen and held captive by the realities of CF, Trikafta or not. 

Filling the Pages
But, if I’ve learned anything this past month it’s when the dust settles upon an unpromised future and hope is all that remains, dreams begin to fill the silence left upon the pages that I’ve been too scared to write. This time, however, dreaming is different. My heart is different. I am different. Am I terrified? Of course. But every dream ever born of my heart will forever be reflected in the beauty of learning to live within this very moment and embracing not only who I shall become regardless of that dream, but living within the hope itself that gives it life. 

Mark’s steadfast presence through every difficult and beautiful breath is a reminder that our life together will never be about the dream itself, but will always be about how we continue to live and grow within each moment we were given. That is what will define our story. For it is those collective moments of simply becoming that will fill our pages and make the most beautiful masterpiece. A masterpiece forever written in a hope born from a courage to simply become. Love to you all. 

Friday, January 31, 2020

Realizing Hope: Moving Mountains (Day 28)

Continued from previous post….

 Living with cystic fibrosis feels as if I’m desperately clinging to the side of a mountain’s ragged and crumbling edge, my face pressed against its side as I hold my breath with arms outstretched wide - my hands desperate to find something that will hold my tired grip. I can feel my toes tightly curled within my shoes trying to anchor myself to the thin rocky ledge which isn't wide enough to fit both of my feet. I feel the wind daring to pulling against my body as I try and steady myself. If I lose my focus to the rocky terrain that surrounds me, and I catch a glimpse of the world below. I feel myself begin to sway unsteadily as my body becomes disoriented - losing any shred of balance as I feel my own body being pulled from beneath my tight grip. 

Then, this drug called, “Trikafta” came into my realm of possibility. And I dared to cautiously dream - to not only release my grip from the side of this crumbling mountain called CF, but to reach out, grab hold of a new ledge, and begin to climb. That I might look out at the beautiful vista before me and deeply breathe in a beauty I never thought possible. But, I also knew that these lungs are filled with decades of irreversible scarring and bronchiectasis that stubbornly have become a part of who I am. This craggy landscape that lives within the walls of this chest simply cannot be transformed within day. Or, possibly ever. But, I know the progression of CF. I’ve watched it take its merciless toll on those I love and a community for which I will be forever connected. I knew, with no guarantees, Trikafta was my only chance at slowing the unforgiving progression of CF within myself. 

Changing the Unchangeable
So, I took my first dose of Trikafta 28 days ago and cautiously hoped - guarding my heart and my mind against exaggerated expectation while staying rooted in grateful, yet pragmatic possibility. Woven within the freefall of life-defining numbers etched within the walls of my being. Is the unchangeable changeable? 

I had a lung function test yesterday in which I blew an FEV1 of 56%. This is an 8% increase since my PFT in November and since beginning Trikafta. I haven’t seen over 50% in a year, and a value even close to 56% in over five years. I have been unable to keep it anywhere near there as it has always found its way back into the 40s for which I’ve always fought to maintain. I’m speechless and my heart is overwhelmed with gratitude at this opportunity to see such a number again. It’s as if in that very moment I felt my body relax a bit, and I could merely enjoy the view from where I am at. That I could literally and figuratively breathe. There are still no guarantees in this life with CF, but for this moment, this is hope realized in a simple set of numbers - numbers with which I hope these lungs will continue to wholly embrace.

While I may feel like CF itself is a mountain, I actually haven’t seen the mountains in many years because of these lungs. I can only dream that with such realized hope that I may see such a beautiful perspective born of possibility again while fighting for more tomorrows for everyone with CF so they also may enjoy such a breathtakingly beautiful view. Love to you all.  

Thursday, January 30, 2020

Realizing Hope: Defined by Numbers (Day 27)

From the moment we breathe our first breath numbers assign themselves to our existence. Our lives forever in tandem with a changing yet unmovable system that defines our days and silently seems to set a value upon our lives. Some remain a marker for our lives - bound by a memorable and meaningful moment reflected in a set of digits for all our days, while others are like a steady ripple in which cannot be contained to a single moment.  

A Disease in Numbers
My life with CF has been bound and defined by numbers. The very basis of cystic fibrosis realized within an abnormal sweat chloride level which diagnosed me at just one month old. I reflect back upon the years and realize how much of my life has been and continues to be influenced by numbers: test results, lung function scores, baselines, trending outcomes, life expectancies, dosages, weight, and time that seemingly feels as if is merely slipping through my fingers. Every number a reflection of a disease that I feel I cannot control. A disease that makes me feel as if I’m clinging to the side of a mountain that just keeps getting higher and the terrain more steeply unsteady - unforgiving beneath my feet. 

While there are many numbers associated with the progression of CF and its stability, lung function is one that is closely monitored throughout one’s life with CF. It’s one that can make you feel as if the very life that fills your lungs is being unfairly stolen by your own body. That simple number can silently say so very much - whispering words of depravity formed from a lie that this life you live isn’t your own, but instead belongs to an unchangeable circumstance called cystic fibrosis. 

The Landscape of These Lungs
Those numbers and scores mean something different to each of us, and in classic CF form, they feel different to each of us. I don’t love to talk about numbers as they don’t always clearly reflect how we feel, nor do they translate equally from person to person. There are so many variables when it comes to a person and how CF impacts them, and the mountains we must each climb which reveal their own unique obstacles. I simply do my best to be grateful for every breath I am given - seeking always to enjoy the beauty from within its gifted view.

I’ve been incredibly lucky that my life with CF has been, in part, pretty stable these last few years. Meaning, that over the course of the last 5 years, outside of some tough exacerbations and hemoptysis issues, my baseline for lung function has hovered between 45-50%. My lung function is something I’m so intrinsically in tune with as my very profession and passion are impacted by the unforgiving landscape of these lungs. I’ve desperately done all I can to continue to hold onto every breath I am given, while slowly feeling any hold I have upon my own body begin to slip within the last year. My tenacious grip losing its strength as I cling to unpromised stability. This body working harder - more unforgiving to the demands I continue to thrust upon it. Daily, CF reminding me of the life it thinks it owns. A life I wish to own every part of and live bravely beyond its perceived limits. 

To be continued….

Wednesday, January 29, 2020

Realizing Hope: Finding "Normal" (Day 26)

“ just be normal”.

It’s a seemingly empty wish that has found itself upon my lips on numerous occasions - leaving echoes of its pleas reverberating through my mind. That set of words usually is married with tears that come in the form of an emotional release that have been building and can no longer be contained. These moments are most often a culmination of living at the mercy of the unexpected and unknown realities of CF. 

A New "Normal"
I woke up this morning allowing myself to realize that for the last week I haven’t spent my mornings dry heaving over the sink due to nonstop coughing - my lungs burning from the abrasive impact of tortuous muscles and forced air trying to move the suffocating thickness of mucus trapped within my lungs. Mornings that  would leave my body ravaged and exhausted before the day had even begun. Just less than week or so ago I would dread getting out of bed in the morning, lying still as the world nudged me to take part in its gift of another day. I’d lie still for a few moments garnering enough strength and willpower to push through the heaviness that found itself within my chest overnight, knowing what awaited me as I sat up and took the first true thoughtful breath of the day. Within those first moments, I knew whether or not the day was mine or if CF would make me work for every breath - setting that simple wish upon my lips of “I wish I were normal”.

After thirty-three years I’m not even sure what normal could possibly feel like. Is it not spending hours in a given morning coughing to the point of cracked ribs and exhaustion? Is it simply waking and not making deals with the day and the disease that forever has foretold its fruition? Was this very morning a glimpse of normal? Is this my own “normal”? Most of all, will I ever be able to fully trust its existence if it is such? Even within the realized constructs of this moment, I continue to hold my breath as this body has taught me never to trust itself, or namely trust the disease of cystic fibrosis that will forever define every cell, Trikafta or not. Most of all, I guard my heart from that trust being broken within myself. Whatever my personal definition of today’s normal may be, my body silently and fearfully pleads within itself that while I may never know true normalcy, that CF may continue to show me mercy and let me simply breathe in the beauty of possibility that was born to such a gifted morning as this.

To Just Be Me
The truth is we will never truly know what normal is because we’ve lived too much, we’ve felt too much, we’ve seen too much of a life defined within a different norm called cystic fibrosis. I think about that simple wish of normalcy and how for it to genuinely become an embodied reality the entirety of my history, my experiences, many of my relationships, and all the strength through heartache that has been realized would fail to be reflected in the landscape of my life. Truly knowing normalcy feels as if it would seemingly erase much of who I am and have become. I feel as if my eyes would suddenly no longer see the depth and the pricelessness present within every moment, and the entirety of my being would simply exist instead of emblazoned with a fiery passion to do all I can to simply live. For better and for worse, CF has conditioned me into the person I strive to be today: tenacious, compassionate, and wholly present in living each moment without regret. That simple wish may be set upon my heart for all of my days, but it is one that at its truth has helped make my life so incredibly beautiful. I wouldn’t trade a single breath if it meant not knowing the love that enlivens this life with meaning and purpose. My life with CF will never know such normalcy, but what matters most is that I instead embrace the wish to have the strength to simply just be “me”. Love to you all. 

Tuesday, January 28, 2020

Realizing Hope: What Will You Do? - Written by Mark Bonnema (Day 25)

Health is a relative state. For some it's a gift, for others it is a blessing, and for some it's a burdensome trial. Some people are very intentional about maintaining and promoting their health, while others are more passive as time and their health fade. It is certain that health and its failings do not play fair. 

The gift of health, blessing of being healthy, and even the burden of illness do not reach people fairly or according to what they deserve.  Sometimes the way you live your life is not reflected in the health you have, and also, the life you have is not always a reflection of your health. Throughout history there are accounts of people in poor health accomplishing great things, and of people in great health have living a poor life.  What truly matters is what you do with the health you have.

Ashley and many others living with cystic fibrosis have been given a gift, a chance at health in the drug, Trikafta. All are deserving of this incredible new chance at health. But whether Trikafta brings a change in lung, GI, endocrine, and reproductive function it remains that you need to do, and live, and love, and excel and dream, and laugh, and grow, and dare, and be, and make the most of the chances at health and life that Trikafta potentially brings. Trikafta is just a drug (a really cool, awesome, life-changing drug), but what will it allow and inspire you to do? To be? 

Those of us not living with CF, whether or not we have your own illness or ailment, we are not off the hook! Being healthy is privileged and a wonderful state of being, but it is just that (and only that) until we do something with it! We have the same charge – what will you do with the health you have?

Monday, January 27, 2020

Realizing Hope: Waiting for a Miracle (Day 24)

We sit within a silent hope 
Every breath begging to know another day

We are waiting for a miracle

We hope within within these weakened walls 
A tenacious spirit giving light to its darkness

We are waiting for a miracle

We fight to withstand the unforgiving storm of CF
A courage set strong within our sails

We are waiting for a miracle

We survive on blind bravery
Clinging to an unseeable hope visible only within one’s truth

We are waiting for a miracle

We wake with an undeniable determination
A strength reflected in a life we dare dream to know

We are waiting for a miracle

We give voice to the beauty alive within every breath
Reflected in ourselves the truest of wonder for which needs no seeking

We are waiting for a miracle We are a living miracle