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.

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?

The Cost

I have a challenge for you today.  In the course of your day pick one of the following to thoughtfully experience or think about:  pouring yourself a cup of coffee, putting your seat belt on, writing your name, playing the piano, holding a spoon, brushing your teeth, typing on a keyboard, holding a camera, or climbing out/into bed.

Do you think about the act of doing or experiencing any of these activities, ever? Is there ever really a need to do so?  For the most part, no, our bodies just respond to the will of our mind and we never think about such things as how our hands feel gripping a coffee cup, how the pen feels between your fingers, or how the soles of our feet meet the ground.

But what happens when you wake up and your body doesn't work the same as you have always known it to work? When there is trepidation in every simple action? What happens when your hands constantly feel like they're asleep: numb and tingling as if being pricked by dull hot needles?  What about when your coordination and balance are skewed and unsettled?  Suddenly, the steady and stable person you have always known has vanished, leaving you uncertain and hyper sensitive to the world around you.  

Cost

Some days I wake up and I feel like my body doesn't belong to me: it's not my own.  The very life saving medicines working to fight CF also come with a cost. My body. Every addition of a life prolonging measure and medicine comes at a price.  Some days my body feels like my own:  the body that I used to know and trust so willingly. I am the coordinated and sure footed me.  I am so grateful for days like this.  They seem utterly amazing.  Then there are days when I feel like a complete stranger in my own body: like I am meeting it for the first time.  I have to consciously think about how tightly I am gripping my toothbrush, how I must use two hands to take a drink out of a glass, how to hold a pen and write my name, and how one foot goes in front of the other.  My body is pretty tough, but some of the drugs to treat CF can brutally make my body feel beaten.  My hands, feet, and tongue feel numb.  My legs feel like jello.  My fingers tingle.  My body uncontrollably gets the "shakes." So badly, that I had a student ask why I was shaking yesterday.  The most frustrating part of it all?  My same mind feels it no longer has control over its own body.  

What do I do on these days?  Try my best to hide it from the world, grip the glass tighter, and do everything with extreme focus.  These days make me really live in each moment: I am aware of all my surroundings and how my body is working in that environment.  These days make me so grateful for the days I feel like "me." No one ever said this journey was going to be easy, and I am strong enough to live the life I have so graciously been given.  I am still loving, I am still passionate, and most of all, I am still breathing.  Every extra beautiful breath experienced with the people I love is worth the cost. Love to you all. 

Do you feel like a stranger in your own body?

  

At your Fingertips

Check out these Jazz Hands

Take a moment and look at your hands.  Think of every little thing your hands do for you during the day.  Do your hands reflect the years of life you have lived? What do they say about you?

Different

I remember being a small child and always looking down at my hands and noticing they were different.  At that time I didn't know why.  I remember seeing my brother's hands and noticing his were like mine as well.  Why did they look so different from everyone else's hands?  They looked different because we had CF.

When I first met Mark he told me my fingers looked like that of the 198O's character, E.T.  I still look down at my hands today, think of that moment, and how my hands look different.  

Why?

Clubbed Fingers

One of the prevalent physical signs of CF is clubbing of the fingers: severity ranging.  This is where the fingertips become swollen and rounded looking, becoming very bulbous like that of a gecko.  Along with rounded fingertips, the nail itself becomes more rounded as well.  Nails affected by severe clubbing depict that of an upside down spoon.  Clubbing can easily be seen by looking at the hands of someone with CF from the side or by looking at their palms.  

Spoons

I catch myself looking at my hands daily and judging their shape.  Are they more clubbed today than they were yesterday?  Do people notice my E.T. fingers and are they frightened by them?





What those Hands Can Do

Regardless of what my hands look like or your hands look like, we each have the world at our fingertips.  In the course of my life it doesn't matter if my fingertips look like upside down spoons, or that they look like E.T.  What really matters is that I reach out and grab onto every opportunity life has to offer with both hands; not letting anything slip through my fingertips.  I am so grateful for every little thing these gecko hands do for me: helping me out of bed in the morning, washing my face, playing the piano, driving my car, eating supper, holding a friend's new baby, playing fetch with my boys, and holding my love's hand.  I am grateful for all the hands that have made such an impact on my life.  Love to you all.



The world is at your fingertips: do something extra memorable with them today.