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. 

The Art of Breathing - Guest Post by Martha Stai

 [Blog post written by Martha Stai]

65 Roses: the phrase brings to mind flashes of color and life. You may imagine a garden full of floral beauty and life-giving splendor. Now picture the full, deep breaths you may take as you inhale that fragrant, floral perfume. For me, the phrase “65 Roses” unleashes images of a merciless weed--one that is overtaking my best friend’s “garden of life.” You see, the phrase “65 Roses” was coined in 1965 when a young boy found it difficult to pronounce the name of his fatal genetic disease, cystic fibrosis. According to the Cystic Fibrosis Foundation, “cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.” Many who suffer from this devastating disease never see the age of 40. My best friend, Ashley Ballou-Bonnema, suffers from cystic fibrosis. Now those roses don’t seem so beautiful, do they?

There are some days when it seems I go through the motions without fully breathing; when I finally allow myself to rest, I inhale full, gratifying breaths and feel my body relax and my thoughts begin to clear. These seemingly unremarkable moments pass me by in a flurry on a day-to-day basis. In those moments, though, rarely do I take the time to give thanks for the ability to take those clear, full breaths. Rarely do I reflect on the ways that my lungs fortify and sustain me. But I should, because my best friend doesn’t have this luxury. Her lungs function at half the rate of a healthy person’s, and yet she continues to fight for her right to a happy, fulfilled life. She is an inspiration to all who meet her; in fact, up until a few years ago, only a few select people in her life knew that she suffered from cystic fibrosis. She had found a way to put on a mask of health and vigor so that the world didn’t have to worry.

All of that changed a few years ago, when Ashley made the brave decision to share her story with the world. She began writing a blog, sharing her daily struggles--the ugly truths and the debilitating effects that the disease had entrusted her with. On the day of her blog reveal, Ashley stoically unveiled the layers of protection and safety that she had built and allowed herself to be fully vulnerable.  She wrote, “Today is the day.  I am removing a layer of paint and showing the world what I AM, not what I am not.  Today I show the world how grateful I am for each breath, each beautiful person I know and love, and each opportunity life has to offer.” Now those are the words of a fighter. Those are the words of someone who wants not only to survive, but to truly LIVE.  

The world was desperate to hear Ashley’s story; in the span of a few years, her blog, Breathe Bravely, has gained hundreds of thousands of followers and has gained recognition from the Huffington Post on dozens of occasions. She has been named one of Augustana University’s “Forward Under 40” for her efforts to make the world a better place. She has also established the nonprofit organization“Breathe Bravely”, which is dedicated to giving voice to cystic fibrosis, and has released her first book chronicling her story. Her testimony of living life to its fullest, despite the demon that tries to stifle her fire, is one that the world needs to hear. Ashley is a wife, daughter, friend, musician, teacher, quilter, and traveler. But most importantly, Ashley is a survivor.

Ashley courageously battles cystic fibrosis every day. Her morning routine involves gulping down a cocktail of prescription drugs. The side effects of each of these pills range from nausea to insomnia. Her sleepless nights are spent anxiously pondering the uncertainty of her future.  The hospital has become her home away from home and her care team is on speed dial.  Ashley’s disease has stolen her innocence and replaced it with apprehension, yet Ashley still strives to find the beauty in every day. So tomorrow, or the next day, when you find yourself out of breath after running a mile or talking excitedly to a friend, remember this: each of those breaths is precious, and my friend Ashley is one of many cystic fibrosis survivors who is fighting for the very next breath. Ashley’s story reminds us all to breathe bravely.

A Brave Journey

Bravery. It’s something that quietly dwells within each of us, giving silent guidance to every step we take and each dream inspired. It’s set free upon each breath that is shared upon our lips and embraced within every unknown possibility we take for granted. We call upon reinforcements in our most dire and desperate of states and generously share it with others when they are in need.

A Year of Remembering

As I take a moment to reflect on 2015 I find myself consumed by a single phrase: “be brave.” In one breath a year ago seems so very long ago, foreign, and like a dream. But in another breath it feels like it was just moments ago - that I could still reach out and touch it. The very core of who I am today is bound to those difficult days. Days filled with fear, heartache, disappointment, decisions, and moments consumed by tears. I’d be lying if I didn’t say it is still painful. The hurts stings like icy daggers deep within the depths of my being. At times I am paralyzed by a creeping familiarity that catches me off guard- feelings I’ve tried to banish from my existence. I try and forget such memories and the cold harsh realities of what CF is capable of doing. The recollection of how different today could be and the humbling realization of an always unknown and uncontrollable tomorrow consume me. As those memories vividly flash through my being, I do my best to push them from my mind – running furiously from the consciousness of CF.

Grace & Gratitude

On the other side of that pain is a beautiful grace and the deepest gratitude. Out of life’s adversity and pain comes unfathomable beauty. The life I have been given is more incredible than anything I could have imagined. A year ago I couldn’t have begun to tell you where life would lead me. But I had to bravely forge ahead – embracing every moment life was willing to give and dedicate myself to truly living. To love more deeply, risk more greatly, to never leave anything unsaid, be unabashedly me, be alive in every moment, breathe in every memory, be rooted in gratitude, and most of all, breathe bravely believing in life’s great possibilities. I alone did not do it but by the hands and strength of so many. I cannot fully appreciate my life today, the opportunities I’ve been so graciously given, and the people I love without remembering this past year. This is my life and to be grateful for it I must remember not only the joys but each brave step through the unknown adversities of CF. Each of those difficult days, moments laden with tears, and life-changing trials has led me to this very day, has molded me into who I am, and has given me some of life’s richest relationships and memories. And that is something more incredible than I could have ever imagined.

The pain of a year ago will always be present within me. I’ll always cringe and feel a sharp piercing in my side when it consumes my consciousness. But in forgetting I lose myself. I force myself to be still and open my eyes to this very moment. I quiet my racing heart and mind. I remind myself of the gift that is this very breath. As I find myself facing the dawn of another new year, I am immersed within waves of gratitude and the words, “be brave” reverberating through moments of the past and powerfully resounding within those of the future.

Just like last year I do not know what tomorrow will bring. But the truth is, none of us do. I do know, however, that whatever life offers we must be brave – never afraid to remember the journey that got us to this very beautiful moment in life while living bravely in today. And most of all, we must always be rooted in endless hope for tomorrow’s possibility. Here’s to remembering 2015 and the great possibility 2016 holds. Love to you all as we begin this incredible year together. 

Take a deep breath and hear the words “be brave” within every step you take.

Grownup Christmas List

[Blog post written by Mark Bonnema] 

“Well I’m all grown up now…”  Ok, I know several of my friends and family may take exception to that statement, but at the least, I’ve grown up physically. It would be a bit odd to see someone my size sitting on Santa’s lap.  The line quoted earlier is from the song "My Grownup Christmas List" and goes on to say, “I’m not a child, but my heart still can dream.” As an adult, I somehow find the restraint each year to avoid crawling up onto Santa’s lap, but I certainly resonate with the notion that my heart still can dream.

Generally speaking, our Christmas lists tend to get a bit more abstract and immaterial as we grow older.  Time with family and friends, relief for those who are hurting, happiness, peace, and a host of other positive emotional states are among the things on our grownup list of Christmas wishes.

I am thrilled and overjoyed that within the CF community, many persons and families living with CF have received their Christmas wish this year! Advances in drug therapies and treatments at the genetic level, such as Kalydeco, and Orkambi are allowing some people with CF who have specific genetic mutations to live with a greatly reduced symptom burden. Breathing is easier, the threat of lung infection is decreased, lung function is increased, and life is improved! It may not come with a bow or ribbon, but these developments in treatment certainly have been a wish fulfilled for many people living with CF this Christmas.  

But not everyone is eligible for the new breakthrough drugs because they do not have the specific genetic mutation that the drugs treat. These people living with CF continue to hope and wish for a cure or definitive treatment this Christmas. They continue to hope and wish that the next drug breakthrough will treat their genetic mutation, giving them improvements in quality and quantity of life. Some are even left hoping and wishing that the next breakthrough will come before it is too late.  This is my grownup Christmas wish. I long with all my heart for Ashley and so many others also living with CF to experience symptom free living, to be able to breathe long and free and deep.

Sometimes wishes come true. Sometimes great and beautiful things happen to fulfill our adult Christmas wishes.  More often than not, however, it seems we are forced to recycle the same wishes year after year, as progress ebbs and flows, with fruition lying always just out of reach. Should we give up on wishing? Be "more realistic," or temper our hopes so as to avoid the disappointment of unrealized dreams? Certainly not.

I think that the ability to wish and hope is great gift in and of itself. Wishing keeps us looking forward, it allows our imaginations run wild, chasing an image of a better and more beautiful future. That which we allow ourselves to imagine, we can work together to build and achieve.  

So I’m all grown up now, but I’m certainly not done wishing and dreaming. My wish this Christmas is for a cure for all persons living with cystic fibrosis. Thank you to everyone else out there who shares this wish with me and continues to work so very hard each every day to help this wish come true…  we will keep wishing and working until CF stands for Cure Found!

What are you wishing for this Christmas?     

Give something special and memorable to someone you love. Donate any amount to the nonprofit Breathe Bravely in honor of someone and get a personal message sent to them from Ashley. How?

Step 1. Donate at www.breathebravely.org/donate

Step 2. Send Ashley an email at breathe.bravely@gmail.com with donor and recipient information.