The Artistry of Being Honest - Part I

There’s a unique artistry in which we each live our lives, a way in which our journey poetically unravels itself. It is rooted in an unchangeable honesty born of every brilliant breath that we are given.

But there are parts of that honest artistry that we each try to hide, to diminish, to silence. We fear it is what will show our weakness, what will define us. Most of all, however, we fear its exposing vulnerability. We hold our breath and fight back tears hoping to keep such honesty that dwells deep within from escaping.

A Restless Truth

I still awaken every morning to an anxious stirring within me. As my eyes meet my reflection in the mirror at the break of each new day I have the same wave of restlessness wash over me. I brace myself against the vanity sink, taking in a thoughtful breath while trying to shake off the uncertainty that threatens to write its way into my mind. I remind myself as I look into my own tired eyes, “this is my life and this is my truth.” I continue on through my morning treatments, cocktail of pills, and getting ready to embrace the awaiting day while repeating that simple, yet honest phrase, “this is my life and this is my truth.”

What is woven within that restlessness? A choice I made almost two years ago to share my honest life, to embrace all that I am. At its very core is an unrelenting restlessness that comes from my life with CF and the decision to openly share it. I think about how that decision has impacted me in both positive and in difficult ways. I think about how that decision has given but also taken parts of my life. In positive ways it is reflected in a powerful support and belief by those people that anything is possible in-spite of CF. It is reflected in an honest freedom. In difficult ways it is reflected in being defined as different, incapable, and only seen for this invisible illness. There are moments within each day that I am reminded about that decision and how it has influenced that given moment in my life. In conversations, opportunities, and relationships that decision stares back at me challenging me to embrace this artistry of being honest and to see its true unique beauty written on every breath.

To Truly Live

At the end of the day as I look at myself in that same mirror I began my morning, I remind myself, “this is my life and this is my truth.” Memories of people I love, conversations that have filled me, and those moments that reflect how beautiful life is remind me of how this honest life and that decision two years ago has given more than it can ever take. I do not doubt that I will wake tomorrow morning with the same wave of restlessness and anxieties, but I know for certain this honest life has allowed me to be rooted in the deepest gratitude and leave nothing unsaid. At the close of every night, I know I’ve lived without regret, loved deeply, and given endless gratitude for every beautiful breath - all because of the artistry of being honest.

Honesty defines each of us differently. It manifests itself within us uniquely and is shared through the artistry that is our beautiful life. Breathe bravely and share your honest life that comes from within you. Is it always easy? No, but the most meaningful artistry resides in vulnerability. Your honest life reflects you – the most beautiful truth. 

This is your life and this is your truth. Embrace its beauty.

This is Part 1 in a several entry series dedicated to sharing my honest life. 

Embellishments of Life

They are embellishments: signs of life. They're the reminder of another day, our journey, and reflect the gift of living. They are marks that cannot be erased.  They are not battle scars, but the signs of truly living. 

The Lasting Impact

All that remains is a small pink dot about the size of a pencil eraser. It subtly adorns the underside of my arm and gives little outward suggestion to the devastation it has witnessed and the battle it has helped to fight these past months. However, it isn't alone. It is accompanied by numerous identical marks that have faded over time but still remain to tell of their own past battles.  Scars? No, they are merely beautiful embellishments left from my PICC lines that remind me of how lucky I am to breathe.

Even though my PICC line has finally been pulled, I have been free of IV antibiotics now for 2+ weeks, and the outward signs of my CF have dissipated, the effects of these past months can still be felt within.  The outer scars will heal, leaving minimal evidence of this last brutal battle, but the scars within leave a resounding reminder of CF's ruthless progression, the physical and emotional pain, the loss of the life I so dearly loved, and the shear desperation I feel to squeeze life from every moment. But these embellishments within also remind me of how grateful I am just to breathe, and how beautiful life can be wherever the path may be leading.  They are merely reminders both outwardly and inwardly of the impact CF has made on my life: some visible, some not.

Leaving Your Mark

What are the most beautiful embellishments?  The most meaningful and impactful embellishments of my life cannot be seen just by looking at me, but their marks are only visible from deep within.  These marks?  Left by the generosity, kindness, and selflessness shown by the extraordinary people that fill my life.  Those marks are deeply set and their impact is felt in every breath I take. I look back on the last several months and think of how greatly my life has changed, and I am filled with more love and gratitude than I ever thought possible.  I am still plagued by the fresh scars of my reality: the reality that I was forced to truly face these past months and continue to face. But those scars are nothing compared to the embellishments that dwell deep within me that were imprinted by the people I love: giving me renewed life, direction, and the strength to withstand whatever my journey has in store.  

The heartache brought on by CF is transformed into humble gratitude and an ever growing appreciation for life by the goodness and grace I have been gifted. I find myself today overcome with tears and emotion at the very thought of how so many people have touched and impacted my life.  There simply are no words, no actions... nothing that I can do to convey how deeply each one of you has touched my life. Every day I am reminded and humbled by the incredible people I am so lucky to know.  I hope to be a mere reflection of every embellishment that flourishes within me: the selflessness and pure goodness I have been shown by each of you. The world is filled with such beautiful embellishments that impact each and every one of us, we just have to open ourselves to seeing and feeling them.  

Signs

The signs of truly living are the embellishments in which inhabit each of us.  They are not battle scars, but mere marks of beauty that tell our story: reflecting the events and people who have shaped our lives so.  They may not be easily visible just by looking on from the outside, but beneath the surface their impact runs the depths of our being.  Love to you all. 

Take a moment to appreciate all the embellishments that have shaped your life.

Living Memory

The Fall season is at its prime.  Everywhere I look there are hues of beautiful yellows, reds, and oranges. You can’t help but be awe struck by the beauty of the season and its ability to be so vibrant.  

The past few weeks in South Dakota have been some of the most beautiful: endless days of sun-kissed perfection bookended by cool, crisp nights and mornings.  I wish they would never end.


I am so thankful for these warm days where the sun still kisses my cheeks and I am reminded of the beauty in which surrounds me.  The explosion of Fall color is a beautiful finale to the song that is the cycle of life.  Soon, the trees will drop their leaves, left barren.   When the wind whips through their branches there will no longer be the sound of rustling leaves, but only silence.   Rays of sun upon my face will be replaced with the bite of cold air as I anxiously await the first glimpses of Spring and signs of new life.  As for today, I will be grateful for Fall's embracing beauty and the brilliance of life it represents.   

A Life Lived

Sixteen years ago, at the age of 17, my brother, Nate, died of complications associated with Cystic Fibrosis.   It’s funny how days stick in your mind no matter how many years pass between.  If I close my eyes I can suddenly become that 11 year old girl again.  I can see the color of the leaves on the trees, the faces of my parents, the frost on the ground as we stood next to his grave, the sun trying to pierce through the heavy clouds, and I can feel the crispness of the Fall wind against my face.  I am filled with the same questions, fears, and guilt 16 years later.

Those years I had with Nate seem like a completely different life: they almost don’t seem real.  For a long time I pretended those years didn’t exist.  I still do to a certain degree: always keeping memories, questions, and emotions at a safe, manageable distance.   Maybe it has always been a way for me to live conveniently in denial about my own reality, and the deep connection I will forever have with Nate and CF.  It still pains me to think about those years: what I saw, the suffering, the guilt I still have in regards to my own health/life in comparison to his, and witnessing the deep heartache of my parents.

A Living Memory

As much as I have tried to silence that part of my life, it is ever present.  Nate is ever present.  His memory and life continue to live on long after he took his last breath.   When I look in the mirror I can’t help but see him staring back at me through my own eyes.  He is alive in the way I smile, my laugh, and in each breath I feel pass through my lips.  

The memory of Nate is still alive for so many people.  He touched the lives of so many: more than I ever could have realized.  Little did I know when I was a child just how lucky I was to have all those people in my life as well.   It's been incredible to realize how those who so impacted Nate's life have also shaped my life through the years: the nurses, the respiratory therapists, child life specialists, and our doctor who became such a vital part of our family.  One of the most amazing things about this blog?  Hearing the stories of Nate and how he impacted the lives of so many people: how his memory continues to live on.  It's been incredible for me to witness another side to the life I thought I knew so well: to hear and look at his life through the eyes of those whole loved him so, and to gain an understanding other than mine as an eleven year old child.

I often find myself playing with the "ifs" of life: wondering what my life would be like if he were still alive, if CF had never entered our world.  Would we be close?  What would holidays look like?  Would he be in love?  Have children? What would our childhood have looked like without CF?  How differently would both our lives have played out?  How different would we be as people?  What if he had been given the same life saving chances that I have been given?  Would that have made any difference? Will my own journey with CF follow his same path?

The Beauty

There is beauty in every life: every breath that has been breathed.  The leaves may soon fall, exhaling their last vibrant breath as winter steals their radiance, but the memory of their colorful Fall beauty will live on, having touched each of us. The magnificence of each color is a reminder of the brilliance of our own life, lives of those we love, and the memory of those we've lost along our journey: each different, but each just as beautiful.  I am thankful for these sun stained days, the vibrant colors of Fall, its finality, the gentle reminder of just how beautiful life is,  and to passionately love every breath.  Love to you all.

Here's to you, Nate. 
Whose beautiful memory still lives on in you?

Brave Like YOU

[Blog entry created by Lisa Yager]

Please tell me you read/sang "brave like Ashley" to the tune of "Moves like Jagger" by Maroon 5. Oh, you didn't? Just me? Okay...

If you've been reading Ashley's blog regularly or have the pleasure to know her personally, you are aware that her journey with CF has been marked by great strength, courage, and joy. In sum, matchless bravery. She truly breathes bravely.

I have always coveted Ashley's bravery. Perhaps you have, too. I considered myself weak in comparison to her seemingly limitless courage and overwhelming power to fight CF. Bravery is her default and I envied this trait in my dear friend. Don't we all want to be brave like Ashley? (You sang it that time, didn't you? Yes!)

I assumed I would never possess such bravery and strength. I  assumed I was weak and less capable of handling life's bleaker moments and harsher challenges. I could never be brave like Ashley.

I was wrong.

Like Ashley, I have kept a secret from the world.

Infertility and the battle to conceive a child is a real and often silent struggle for many. My husband and I kept this chapter in our lives a tightly held secret . The secret first began to elicit surprise and pure joy when we told our closest friends and family that we were expecting a child. In time, the secret became a copping mechanism to hide the associated shame and frustration. The emotional toll was often unbearable. I didn't feel brave. Weakness prevailed as each passing month brought a negative pregnancy test. Strength and bravery seemed out of reach.

And then, it arrived.

A positive pregnancy test. Blessed (yet, unpleasant) pregnancy symptoms followed.

And then, it ended. Just shy of fourteen weeks pregnant, after two successful doctor's visits, I lost the baby.

The unexpected and tragic end of my pregnancy was traumatizing. Yet, through the physical pain and dreadful details, I found an unexpected amount of courage and strength. Suddenly, I was brave.

I am still processing this journey; the physical and emotional pain are still far too real. Grief has not begun. Yet, one item is for certain. I am brave. Far braver than I ever imagined. I choose to believe that this strength has always been inside of me, just waiting to be found and applied.

You are brave, too. Even when weakness prevails and the world seems dark, you can be brave.

Perhaps bravery comes when we need it most. Whether we are fighting daily to protect our body from the dangers of CF, dealing with infertility and miscarriage, or just struggling with the ups and downs of life, we are all brave. Braver than we ever dreamed possible.

When the physical and emotional wounds have healed, the journey to conceive will begin again. And I will face it with bravery. Will it be easy? No. Will this bravery always come naturally? No. Am I scared beyond belief? Yes. But, I have found an unknown strength and the bravery to tackle whatever may come.

You can too. You can be brave like.......  You.

Have you found your inner bravery?

Note: Infertility and miscarriage impact many. This experience is my own.

Junkin'

Junkin' 

One of my very favorite things to do is to go "junking."  What is that you ask?  It's just another way to say "antiquing."  Some people think of it as junk, antiques, or old rubbish, but  I think they're all treasures in their own way.  I love to go into a shop filled from wall to wall with "treasures."  Each item has a story to tell, a history just waiting to be revealed.  Look around yourself, what stories are being told?



My Story
My lungs have a story to tell all their own.  They are filled with the history of each breath I have taken: the laughter, the conversations had, the air of cities traveled, the tears cried, and the scars of infection caused by CF.






The Scars
With every lung infection, scarring and damage to the lungs occur.  Scarred tissue in the lungs makes it more difficult for the lungs to function properly. The thickened mucus caused by CF coupled with the continued scarring and damage to the lungs is a breeding ground for bacteria and infection.   X-Rays and CT Scans are done in order to chart the progress of scarring and damage to the lungs: they help tell the story.  They can also show mucus plugging, bleeding issues, and the presence of a pneumothorax.

A Pneumothorax is a collapsed lung. This happens when air leaks into the space between your lungs and chest wall.  The size of Pneumothorax can vary.  A small incident will be closely monitored and hopefully heal on its own, but a larger incident requires a tube or needle to be inserted between the ribs to remove any excess air.  This past summer I had a Pnuemothorax.  My CF Team monitored me closely and it healed on its own.  The chances of another increase greatly once one has occurred and deterioration of the lungs continues to progress.

Stories waiting to be told.

Yet to be written...
My lungs may be filled with the scars left by CF, but they are just part of my story. Each breath I have taken is filled with beautiful memories, relationships, and stories. Each breath I exhale reveals the story living within me, and gives hope to my story yet to be written.  Thanks to you all for being such "treasures" in my life.  Love to you all.





What "treasures" fill your life?