To Beautifully Belong

The greatest of human contentment is found not in the world around us but within ourselves - in a deep self-peace that is reflected within the beauty of truly knowing that we are enough just as we are. Knowing that we truly belong. Knowing that it is the very uniqueness of our journey that gives meaning to every breath we are given. 

Realizing such contentment and self-peace is a continuous journey. And at times, one that can be painful to endure and filled with adversity. We are in constant search of finding where it is we belong – questioning the beauty within every breath we are gifted. We unknowingly cling to distraction and immerse ourselves in the world’s chaos - a means in which allows us to live blindly within our own lives and avoid looking inwardly at the state of our own selves. Allowing us to numbly exist all while sacrificing our beautiful and authentically unique spirits. We cling to the stability of chaos and distraction - never able to find the place of quieted true contentment within ourselves, scared and unable to see the beauty in our own unique journeys.

A Quiet Stillness

As I sit beneath the expansive summer sky my mind wanders as it often does. There’s a sting of sadness that often surfaces when I’m left alone in such a quiet state of mind. It’s the silent side of CF. It is a plague unto my mind and heart when all is still. It appears when I am not consumed by the world’s chaos and engulfed in my own subconsciously created distractions – every minute given to something other than myself as a way to deny my own reality and cope with an ever–growing discontentment created by CF.

There’s a quiet stillness about this summer in comparison to other summers. Or, maybe I am just seeing my own reflection a bit differently in this season of life– acutely aware of time, purpose, and contentment. In such quietness lies an intense restlessness. A restlessness that is knowingly rooted in the silent side of CF and the uncertainty it perpetually stirs within the deepest parts of my being. It’s a restlessness born of stillness, the passing of time, inevitable change, and the uncontrollable circumstances of my unique journey with CF. But most of all, it’s a restlessness that disrupts my inner peace- making me question where it is I belong and the beauty of this unique journey I’ve been gifted.

Beautifully Enough

As times passes I realize more and more how different all of our journeys are. And seemingly I realize just how lonely this road less traveled can be. There’s something special in the sharing of what is familiar between people- an unspoken bond and deepness. It gives a reassuring sense of belonging and understanding. The pang of sadness comes not in living this unique journey I’ve been given with CF and all that comes with it, but it comes in knowing I will never fully share life in the same way with dear friends and family. The sadness comes when I realize that my journey will always seem so very different. So, I do my best to quiet this restlessness. Not by immersing myself amidst distracting chaos like I desperately try to do so often, but by sharing my honest self and most of all, listening. Hoping to vibrantly live and experience life not only through my own unique journey but through the beautifully different journeys of all those who fill my life.

I look to the summer sky and breathe in the warm air of my favorite season, a wash of reassuring contentment fills my quieted soul. 

Life fills my soul. 

In a brief renewing moment I am reminded that it is in our own uniqueness that we truly belong. That self-peace is found within the most honest parts of who we are – rooted in gratitude for the life we have each been given. Rooted in knowing we are beautifully enough just as we are. Rooted in the truth that it is through sharing each of our different journeys we truly live and experience the beauty in every breath. Love to you all.

Take a deep breath and look to today's summer sky. Fill your soul with the peace of knowing you are truly enough and this unique journey you've been gifted is breathtakingly beautiful. 

An Imperfect Struggle

[Part II of "The Artistry of Being Honest"]

Beauty is not defined by the perception of others but is defined by what we see in ourselves. But often, it is we, ourselves, who are most critical and most blind to our own unique beauty. We fall short of our own expectation of such things– seeing only what makes us different as ghastly markings of our insignificance and unchangeable and uncontrollable imperfections.

A Change of Beauty

For as long as I can remember I’ve been perceptive to the definition of beauty and how I have failed to meet my perceived self-standard. My earliest memories are filled with an innate awareness of how I was different than those around me. My childhood memories are woven within the reflection I saw of myself in my brother and the devastating disease of CF. Outwardly, I noticed how my brother’s hands and fingers were different than our family’s. I saw how his chest was broad and barreled - his ribcage seemingly too large for his tiny frame. I noticed that his cough set everyone on edge. I noticed how it tore through the world’s natural chaos like a knife tearing through paper.

I began to notice with every passing year that too, my own hands looked more and more different. That too, my ribcage seemed too large for the frame of my body. That too, my legs and arms seemed so bony and thin. I noticed how my own cough would bring upon unwanted attention and alarm, highlighting the very part of myself I was trying to conceal. With every passing moment I noticed these uncontrollable changes becoming more glaringly distinct - each a hideous reminder of what made me different.

Imperfections

I recall moments I’d look at my reflection as a child and wish nothing more than to look and be like everyone else - moments in which I felt truly alone and different. I wish I could say as the years passed those feelings diminished but they only grew, consuming me from within. I fiercely tried to cling to what I could control as the ugly truth of CF became more and more visible. I’d wear clothes to hide the shape of my body. I’d hold my breath and inwardly fight the relentless scratch in the back of my throat and rumble within my lungs that wanted to unleash a fit of coughing. Yet, the more I tried to conceal and control of CF, the more I saw its imperfections staring back at me. Those uncontrollable realities of CF imprinted into my being and mocking me through my own eyes, constantly reminding me of how I was different - making me see myself as anything but beautiful. Those unyielding reminders still plague me and forever will.

The precious time I spend giving thought to the size of my ribcage, my gecko fingers, my puffy steroid cheeks, and piercing cough, strips me of the freedom to immerse myself into every beautiful breath that comes from within. It steals a moment of my life that instead could reflect the true meaning of beauty and replaces it with destructive and depleting anxieties. Some days do those surmounting anxieties and realities seem unbearable? Yes. But I then force myself to breathe, clinging to the beauty that lies within every breath I take. I remember the simplistic unique beauty of life itself. I force myself to smile. And you know what? The world always smiles back, melting away my restless insecurities of despair. Those genuine smiles reassure me, reminding me that I am not alone. Also, about a year ago a Canadian photographer did a photo book project called Salty Girls: the Women of Cystic Fibrosis and before that did a project called Just Breathe: Adults with Cystic Fibrosis. Both books and projects depicting the honest beauty and raw stories of adults with CF. For the first time in my life, there before my eyes spread across countless pages, I saw myself and my unique differences reflected in those beautiful people. Some of the sweetest friendships I share today have come from fellow people with CF. They are truly beautiful in every sense of the word, reminding me that I am not alone or painfully different, but beautiful.

Unique Beauty

We each see our uniqueness as glaring reminders of what makes us different and at times an outcast. It’s easy to tear ourselves down, pick apart our bodies, lives, actions, or situations. We inwardly focus only on our imperfections and how we fall miserably short of our own expectations of perfected beauty. We think our differences are what define us, and that they are the only things others can see. But they are not. We just have to allow ourselves to believe such truth. What if when we each looked in the mirror, we decided to see those differences as what makes us truly beautiful instead of only seeing them as ghastly imperfections? We’d finally free ourselves from our own suffocating expectations and lies of self-determined beauty. We’d be able to freely allow our differences and imperfections to be the very things that connect us to one another, not separate us.

I know it’s not that simple and I know it’s something in which I am always going struggle. But I force myself to smile and remind myself, “this is my life and this is my truth.” We are each stitched together by a stunningly unique beauty, both externally and inwardly. That unique beauty is what makes each of us wonderfully different and truly who we are. Love to you all.

You are beautifully different. This is your life and this is your truth.

Check out Ian Pettigrew’s latest photo project, “Salty Girls – the Women of Cystic Fibrosis” here.

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.