A Hidden Chaos

[Part III of "The Artistry of Being Honest."]

There’s a bottomless well of churning thought and emotion that engulfs the very core of our being and is born of a silent inner strength. That strength unassumingly the very foundation of who we are and the life that courses through every breath. It is the beautiful dance that lives within the purest of inner joys, yet is the weight in which embraces our tears and makes them forcefully fall. It’s always present - alive in our most vulnerable of moments and within a deep tenacious hope.

A Piercing Presence

But there’s a deep anxiety that dares to challenge that strength in which is woven through every honest part of who I am. It tirelessly tries to pull me into a consuming place of churning emotion and thought. It dares to prove my feared self-proclaimed inadequacies. It isn’t easily perceivable to the unknowing eye, nor is it a part of my journey with CF I easily expose. It’s not the barreled shape of my chest, my distinguishable cough, or the piercing pain found beneath my ribs. No. It’s deeper- it's a gripping and relentless anxiety that dares to undermine the strength that I know sustains every beautiful breath I’m given.

I hide it deep within from the world in fear of exposing my true weakness. Reverberations of its laughter course through my body in a breathless silent panic. At times, its suffocating grip clenches my throat tighter and tighter until I feel I am gasping for air. Its piercing presence unassumingly woven within the simplest moments of my life and within every unwritten possibility. Its concealed restlessness stirs within every self-doubting thought that prides itself on highlighting the uncontrollable realities that accompany my life. It is made up of a constant worry of time, living life to its fullest, and the feeling I am not doing enough. Most of all, it’s composed of the fear that I am causing those I love pain and disappointment created by the uncontrollable elements of my life with CF.

Inner Strength

I try and silence these anxieties and for the most part, I can keep a rational hold of them. But sometimes, it feels as if the mental weight of CF is suffocating me. I do my best to keep it tightly controlled within my grip, doing my best to never allow it to surface. But there are times my strength is no match for CF’s anxiety, and I am reminded that there is much in life that I have no control over. I do my best to re-center myself and seek the beauty that surrounds me. I breathe deeply and find my inner strength - clinging to the gratitude for the goodness that fills my life. Within the most chaotic and anxiety ridden moments, I always find that unyielding seed of hope planted within the deepest part of my being. Most of all, I smile and remind myself that this is my life and this is my truth.

I share this with you not because it will make my anxiety disappear but because sometimes being strong comes in the form of the most humble honesty. This is my life and this is my truth - it all makes me who I am. Difficulties are a part of our journey and manifest themselves differently in each one of us whether it is physical, mental, or emotional. It is in the sharing of my own life that I hope you feel a renewed sense of your own beautiful strength that is alive in every breath you take. But, most of all, I hope through the honesty of my own life that you find the strength to share your own incredible journey - the beautiful and the difficult. Strength is not measured by the amount of life we are able to withstand but is a reflection of how we react to the life we’ve been given and how we commit ourselves to the act of honestly living. Love to you all.  

What makes you strong?

Being Honest

6 months ago I did something that drastically changed my life.  I logged into Breathe Bravely for the very first time and I began writing.  Never did I imagine a few words would transpire into something so incredible.  Never did I imagine how it would change the people I know and love, and my relationship with them.  Never did I imagine how it would change... me.

A Promise

This blog was started because it was time for me to be honest not only with myself, but with the people who unconditionally supported and fought for me at the arms distance I kept them.  It was to come clean and share this life I had so meticulously kept hidden from the world my entire life. Something I had worked so tirelessly to conceal my entire life was becoming nearly impossible to hide.  It was time I share not only a part of my beautiful life, but ALL of my beautiful life.  

I promised myself this blog would reflect my honest life and the beauty of the good, the bad, and the ugly of Cystic Fibrosis.  I found myself the past few days fighting the feeling of wanting to stuff CF and any signs of it deep within myself, away from the world.  Suddenly, I wanted to pretend it wasn't there.  

Why did I hide a huge portion of my life from the world for so long?  Why does a part of me still?  I couldn't stand the thought of the faces of the people I love when telling them less than perfect news.   I still can't.  Most days I can handle the life I have been given, and can see the beauty in every breath I take. What I can't handle is how my life impacts and hurts those I love so dearly.  But, there is no greater gift than telling those I love good news: that their fighting and support make a difference, that I'm breathing better than I have in 4 years, that I'm running, that the possibility of the future seems limitless.   I can see it on their faces: they have hope.  Most of all, I can see my reflection in their future.  The past two months have been one of the greatest gifts of my life.   

Honesty

On Tuesday after several tries, two hours, both arms used, and my body finally cooperating, I had a PICC line placed to begin a course of IV antibiotics.  I think this time has been the hardest when it has come to sharing the news.  Seeing the look of disappointment in not only myself, but in those I love truly kills me inside.  Maybe it's not their looks of disappointment, but the reflection of my own in their faces.  The last person I wanted to tell was Mark.   I felt terrible.  I felt like for the last two months we had real hope.  Hope for a future that seemed like anything was possible.  A future in which CF wasn't going to have any hold on our life.  But that's not my life, and you know what?  That's ok.  I will be grateful for every day, every memory, every relationship, every opportunity, and every breath I am given.   I am thankful for an aggressive team who wants to keep me the healthiest I have been, who care about me, and fight with me every day.  Even if that means IV antibiotics and hitting things before they turn into something really terrible again, I am so truly grateful.  Some days are rougher than others, but all are good and filled with their own beauty.  The future is filled with wondrous possibility and hope, and it's all mine.  Love to you all.

This is honesty. This is my beautiful life.  This is Cystic Fibrosis. 

Is your life an honest reflection of who you really are?

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.

The Birthplace of Joy

[Blog entry created by Jayna Fitzsimmons]

Ashley and I have been friends for a really long time, and we have one of the closest, most enduring friendships I have ever experienced.  We met in high school and became instant best friends—pretty much inseparable, instant sisters.  In case you have doubts, here is a photo from an actual family picture session my family did in 2003. If you can look past the stellar posing, you’ll note the fourth sister.    

 

So foxy.  Take it all in.

I am honored to be guest blogging for AB today, and so I want to take this chance to share a little Friday gratitude for the gift that Ashley’s writing on Breathe Bravely has been to our friendship and how Ashley’s courage in embracing vulnerability has been a gift to all of us.

Ashley and I are both teaching artists.  I teach theatre at Augustana College here in Sioux Falls, and, between USD and her home studio, Ashley teaches music to many students of all ages.  It’s usually not too long into one of our frequent dinner or lunch dates that the “teacher talk” begins.  After a few whisky drinks have been consumed and our husbands have faded into the distance--they’ve become very close J--conversation usually meanders around to our shared passion, and sometimes, the attached frustrations. 

“This student has so much promise,” one of us will say, “but she’s holding back in performance!” 

“The potential is there,” the other will lament, “but he seems afraid to step outside of his comfort zone.”

When our train stops at Commiseration Station, believe me, we swap strategies.

Sorry/not sorry, gentlemen.

In the performing arts, forward progress is tricky in that it can sometimes feel an awful lot like failure.  We have to be vulnerable in order to grow, which can feel scary and unpleasant and like we need to find the nearest tub of ice cream/bottle of wine, stat. It’s gunning for that high note with no guarantee it will be reached, committing to a new audition monologue that might fall flat, or “looking stupid” in front of one’s classmates, peers, or an entire audience.  Ashley and I (and every other teacher on the planet, no doubt) toss around questions like: How do we encourage our students to try new things? To take risks with their work? To embrace the idea of productive failure? To willingly make themselves vulnerable in the face of criticism, rejection, or the threat of anything less than an A+?  How can we best teach this concept when we’re still learning it ourselves—and probably always will be?

In looking for a way to talk to my students about how vulnerability can actually be useful, I came across Brene Brown’s work.  Maybe you’re familiar with Brene Brown, a social worker and author who researches and writes about vulnerability.  If you have a spare twenty minutes, check out her engaging TED talk, “The Power of Vulnerability.”  For now, here’s the highlight reel: Brown says that vulnerability—in addition to being necessary for the human connection we all need to live purposeful lives—is “the birthplace of joy, of creativity, of belonging, of love.”  I don’t know about you, but I think that’s such an empowering message: something we’re taught to see as weakness actually gives us strength and the ability to more fully connect with ourselves and others.  According to Brown, vulnerability comes with allowing ourselves to be seen, deeply seen, for who we are and is possible only when we have the courage to embrace imperfection, express gratitude, and believe that what makes us vulnerable is what makes us beautiful.  Sound familiar?

Hint:

Oh, and in case that last question had you stumped, Brown defines courage as the willingness “to tell the story of who you are with your whole heart.”  Sound like anyone we know? 

Bonus hint:

Ashley and I shared so much growing up together, but despite our sisterly status, we rarely shared in the ups and downs of CF. I knew the basics of what it was and that she had it, but that was about it.  Ashley did an excellent job of hiding anything that might make people think she was imperfect, and even as her best friend, I would have had to adopt detective-level observation skills to see any evidence of CF’s presence. The deftly hidden PICC line on a band trip and concealed pill bottles during sleepovers were overshadowed by all of the awesome times we had together, and I was very familiar with the way Ashley would gracefully sidestep any mention of CF with practiced ease.  I understand her reasons, but it kills me now to think of how hard it must have been for CF to be a secret in Ashley’s life.  What if I had stepped outside of my comfort zone to ask questions or offer support back then? Or even a year ago? What was I afraid of?

Ashley’s blog profoundly changed our entire friendship, so much so that, in my mind, I’ve started to divide our time as friends into “Before Breathe Bravely” and “After Breathe Bravely.”  Though it’s been a shorter time, our friendship “ABB” has been so rich, it feels like years.  Ashley’s willingness to be vulnerable to her entire audience of readers unlocked an entirely new understanding of my dearest friend and brought a new depth of connection to our relationship.  It gave me a vocabulary to ask questions.  It gave me permission to get involved.  It was a key under a welcome mat.  Maybe you feel that way, too.

Two weeks ago, Ashley and I took a break from talking about teaching and raised our whiskey drinks in a toast to her 55% lung function.  A year ago, I might not have even known about that success, and now, because of Ashley’s courage, I get to celebrate it!  Thank you, Ashley!  You show us that opening up to be fully seen by others makes for a purposeful life—and you are living it.  Through every challenge and victory, what a gift it is to truly see my best friend!

What rewards could you reap by stepping outside of your comfort zone?  Try something new today.  Thank someone who has changed your life.  And, this one’s really important: call your best friend.