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.