Finding Your Voice

The voice.  It is the purest reflection of one's self and is the instrument from which our passions pour. It carries our emotions, gives wings to the thoughts that resonate within, and transforms our ideas into purpose.  It embodies the complexity of our entire being, yet it is born out of a simple beautiful breath.  

Defining Who I Am

Singing has been at the very core of who I am for as long as I can remember. Just like CF, it has always been a part of me. It is the very spark that lives within me and renews my soul. While there is truly nothing else that feeds my soul the way singing does, it isn't singing itself that has made my life so incredibly full.  It is the people I have gotten to make such amazing music with and the act of lending my voice to something greater than myself that truly gives meaning to my life. For the last 10 years I have passionately drown myself in studying music: receiving my bachelors degree in vocal music and currently pursuing the last months of my masters degree in vocal music. It hasn't been easy by any means, but the reward and inner joy I get from feeling the air pass through my lips and the song of my heart being painted upon each breath is incomparable.  To be honest, my ability to sing has always meant that I am still alive both physically and mentally.  It has represented that CF is not winning: that I am stronger than CF. Of course, CF has made singing difficult at times, but that just means with each painful breath I know I am alive.  It has forced me to treasure those moments when my body feels "normal" and the air seems to just flow from within.  But it has also made me fight even harder through those moments I feel powerless and as if CF is trying to destroy the song of life that sustains me. The entirety of who I am has been defined upon my voice and my pursuits as a musician. So what do you do when that very thing that has defined you is torn from your life? When that very thing that feeds your soul and gives you life seems merely impossible?

Sing A Song

I sang for the first time in over 5 months just a few weeks ago. There's nothing I've been mourning more these last few months than the loss of my voice. For much of that time it was difficult to speak, let alone sing. There's nothing I wanted more desperately than to just merely open my mouth and have a note escape from my lips. Not only was I desperate to breathe, but I was desperate for the song that lived within to be freed again. I always knew my voice would be undermined by CF sooner or later, and ultimately be devastated because of it, but I never could have prepared myself for the heartache and loss I've felt over it actually happening. It seems I've had to relearn just how to simply breathe again, not to mention sing. But, I am singing again. I know it will never be the same, as this last CF battle has left my body so different. But I am singing and that's all that matters. Whatever the future may hold, the voice within me will always continue to sing, it just might be a different song. 

1 Year

Regardless of what CF has stolen from me, the song within me will be ever present.  I will forever be finding my voice, in whatever medium that may be. A year ago I published the first entry to this very blog. Little did I know what would lie before me. I had started the blog as a way to allow those I know and love into my life and see who I really am: to unveil a part of me that I had hidden from the world my entire life. It had become more and more impossible for me to keep hiding and running from the realities that are CF. This blog is not about me, and I realize that even more every day. It's about all of you: about the goodness, the love, and the endless support you have all shown me. That my voice's purpose is to reflect the beauty that is so present in every breath I am given. 

I've always defined myself by the use of my voice: the expression of the song that lives within me and that illustrates my life. I am realizing that I have not lost my voice at all, but instead it is just being used differently. That finding my voice is merely looking inside myself, breathing bravely, and sharing the song that fills my soul in spite of CF. 

Thank you to each and every one of you for being a part of this incredible journey with me: for believing in me. I am left humbled beyond words and filled with endless gratitude for each of you. My life is so beautiful, and I am truly thankful for each beautiful breath that I have been given and each song I've been able to sing.   Love to you all.  

Sing it, shout it, write it: breathe bravely and find your voice. When you find it anything is possible.



Tomorrow is April 1. Are you ready? 
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Designing a Difference

It’s not the gifts themselves that make such an impact, but it is the selfless generosity and genuine love in which they’re given that holds so much significance.

While I was spending time at the U of M this past November/ December, I received an email from a most dear friend in which contained something that left me so very speechless. I remember opening the email, feeling my heart swell within the walls of my chest, and instantly clasping my hands over my mouth in disbelief.  I remember looking at Mark and saying, “you’ll never believe this” while tears streamed down my cheeks. What was this irreplaceable gift, this act of such genuine generosity and care? 

It was a brand new design created just for Breathe Bravely. 

With the guidance of my incredibly dear friend, Jaci, her husband Micah, and his amazing team at Lawrence & Schiller, this incredible design was created. It’s not only a reflection of me, but of every single person who is a part of Breathe Bravely. I am so excited to finally share this amazing gift with all of you.

The Significance of the Design

          

Breathe Bravely: 

Represents the strength and hope in every breath that fills us with life.

The Arrow: 

"An arrow can only be shot by pulling it backward, so when life is dragging you back with difficulties, it means that it's going to launch you into something great, so just focus, and keep aiming." – unknown

Since the beginning of this blog, I have strongly embraced the idea that my life with CF is like an arrow.  That with every set back, or difficulty that may be pulling me downward, it only means I am waiting to be propelled into something greater.  

Roses: 

Because Cystic Fibrosis is so difficult for children to say it has become known as “65 Roses" and a trademark for the CF Foundation. 

Because of You

I am so very excited to share this with all of you. This is just the beginning of some exciting things to come and none of it would be possible without the endless love and support of my dearest friends, Jaci and Micah, and the amazing generosity of the team at Lawrence and Schiller. You have given hope, shared love, and designed a difference that goes far beyond me: you are fighting for another breath for all those impacted by CF. Because of you, the arrow that is my life soars higher, farther, and with greater purpose. Love to you all. 

Who has designed a difference in your life?

  

Exciting Things Ahead

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Embellishments of Life

They are embellishments: signs of life. They're the reminder of another day, our journey, and reflect the gift of living. They are marks that cannot be erased.  They are not battle scars, but the signs of truly living. 

The Lasting Impact

All that remains is a small pink dot about the size of a pencil eraser. It subtly adorns the underside of my arm and gives little outward suggestion to the devastation it has witnessed and the battle it has helped to fight these past months. However, it isn't alone. It is accompanied by numerous identical marks that have faded over time but still remain to tell of their own past battles.  Scars? No, they are merely beautiful embellishments left from my PICC lines that remind me of how lucky I am to breathe.

Even though my PICC line has finally been pulled, I have been free of IV antibiotics now for 2+ weeks, and the outward signs of my CF have dissipated, the effects of these past months can still be felt within.  The outer scars will heal, leaving minimal evidence of this last brutal battle, but the scars within leave a resounding reminder of CF's ruthless progression, the physical and emotional pain, the loss of the life I so dearly loved, and the shear desperation I feel to squeeze life from every moment. But these embellishments within also remind me of how grateful I am just to breathe, and how beautiful life can be wherever the path may be leading.  They are merely reminders both outwardly and inwardly of the impact CF has made on my life: some visible, some not.

Leaving Your Mark

What are the most beautiful embellishments?  The most meaningful and impactful embellishments of my life cannot be seen just by looking at me, but their marks are only visible from deep within.  These marks?  Left by the generosity, kindness, and selflessness shown by the extraordinary people that fill my life.  Those marks are deeply set and their impact is felt in every breath I take. I look back on the last several months and think of how greatly my life has changed, and I am filled with more love and gratitude than I ever thought possible.  I am still plagued by the fresh scars of my reality: the reality that I was forced to truly face these past months and continue to face. But those scars are nothing compared to the embellishments that dwell deep within me that were imprinted by the people I love: giving me renewed life, direction, and the strength to withstand whatever my journey has in store.  

The heartache brought on by CF is transformed into humble gratitude and an ever growing appreciation for life by the goodness and grace I have been gifted. I find myself today overcome with tears and emotion at the very thought of how so many people have touched and impacted my life.  There simply are no words, no actions... nothing that I can do to convey how deeply each one of you has touched my life. Every day I am reminded and humbled by the incredible people I am so lucky to know.  I hope to be a mere reflection of every embellishment that flourishes within me: the selflessness and pure goodness I have been shown by each of you. The world is filled with such beautiful embellishments that impact each and every one of us, we just have to open ourselves to seeing and feeling them.  

Signs

The signs of truly living are the embellishments in which inhabit each of us.  They are not battle scars, but mere marks of beauty that tell our story: reflecting the events and people who have shaped our lives so.  They may not be easily visible just by looking on from the outside, but beneath the surface their impact runs the depths of our being.  Love to you all. 

Take a moment to appreciate all the embellishments that have shaped your life.

An Exchange of Grace - Guest post written by Kathryn Timpany

 "When the student is ready, the teacher will appear."                 
- Buddhist teaching

Many of you have known Ashley much longer than I have.  I met Ashley and Mark when they began attending the church that I pastored just a few years ago.  We soon discovered we shared a love of vocal and choral music.  And since I was diagnosed with Chronic Fatigue Syndrome eight months ago, we have discovered that we also share the journey of living with a body that refuses to bow to the sheer force of will.

Like you, I have been inspired by the chronicle of that journey Ashley has shared in this blog.  When she invited me to write an entry, I felt honored and a little bit lost.  What had I to offer that would add to the circle of care that is comprised of those of you who have accompanied her much longer and more closely than I have?

Soon after I accepted Ashley's invitation, this well-known ancient saying placed itself front and center in my mind, and I knew what I wanted to share.  Ashley has become my teacher, appearing in my life just when I was ready to learn what she had to offer, and I am deeply grateful.

The world we live in rewards success and strength.  Our favorite verbs are thrive, achieve, overcome, triumph. We compete for primacy everywhere we turn.  We hail our heroes.  We reward winners and pity losers. We are schooled for glory, and shamed for failure.  And even those of us who find sustenance in spirituality talk about doing it "right".  No sloppy life of the spirit for us!  No pesky doubts, no awful absence or dreadful silence in place of the divine Voice!  No siree.  If things aren't getting better or making more sense, you just need to pray a little harder or a little better!

When you are living with a body that won't let the desires of your heart come to full form, these words and this way of thinking are no longer helpful.  Rather than spurringyou on toward victory and joy, they often give birth to fear and discouragement.  They then become like feral dogs lurking viciously outside the door, snarling and prancing as they wait for a chance to burst in and devour you.

When that happens, you need a teacher to show you a new way of being human.  You need someone to teach you how to protect yourself from despair.  You need someone to help you find your way home to a life of beauty, gratitude and delight.

Ashley appeared to me exactly when I needed her.   When it was my turn to learn a whole new curriculum, a whole new language, a whole new perspective, she made herself available - through words and real  presence - and I am now making my way into my own new normal, baby step by baby step.

For a long time, I thought of myself as a pastor and teacher for Ashley.  Now, she offers me what no one else can.  She is teaching me how to find beauty every day, how to remain grateful in the face of unremitting pain, how to nurture hope in the midst of bleakness. Together we are experiencing an exchange of grace, each of us offering and receiving understanding and compassion from the other.  This is the blessing of being in true community, where you don't have to pretend everything is alright, and success is defined by the strength of the bonds of love between you.


Who is teaching you what you most need to learn right now?

Thin Ice

There's a hesitation within my step.  My body tenses as I suddenly become aware of every cell within  my body: from my fingertips down to the soles of my feet.   I take a deep breath and gasp as I feel the pungent crisp air pass between my lips and fill my lungs.  For a moment I hold my breath and close my eyes, fearing not only to take the first step, but the journey across the uncertain ground.

Do I delicately place each step, aware of every movement I make hoping the fragile thin ice below my feet will support me?  Or do I run, seeing how far I can possibly reach before I feel or hear the ground give way?

It's time to take that first step, to set out upon the frozen sheet of icy glass and see if it will hold me.  The ground below me has been unsteady these past months, but each step I've taken has been coupled with an army of people and a barrage of potent antibiotics and medications hoping to stabilize and firm the ground beneath me.  It has been an emotional, frustrating, and exhausting endeavor to come this far, but I am amazed and so very thankful to have weathered the journey: to be able to breathe. 

Prepared to Swim

The last 161 days have consisted of two PICC lines, a sinus surgery and bronchoscopy, two visits inpatient to the hospital,  a multitude of oral medications and IV antibiotics, Influenza A, endless hours of treatments, a few drug reactions, and countless visits to my doctors.  But I have finally reached a point in which I have shown enough stability to stop IV antibiotics. It is time to see what my body will do on its own.  I'd be lying if I said I am not nervous or terrified.  It feels as if I am stepping out onto a sheet of thin ice: wondering how far I can get before the ice starts to abruptly crack beneath me, plunging me into the depths of the icy water.   How little trust I have in this body after it has betrayed me so vehemently these past months.  It is not "if" my body will betray me again, but "when."

But I must do it.  I must take a deep breath, step out onto the ice and have faith that it will hold me.  And if not, I surely can swim.

Without Fear

Wherever my steps are leading and however uncertain my path ahead may be, the journey is still most amazing. Let the brisk air pass between my lips and touch the depths of my lungs,  reminding me that I am alive . Let me not only walk without fear upon the uncertain ground, but skate across the glistening thin ice, always being a witness to the beautiful life I've been given.

Thank you to my wonderful CF team, the depth of my gratitude for each of you is immeasurable.  Thank you to my amazing friends and family who have steadfastly supported, loved, and shown me grace through this entire journey: it means more than you will ever know.  I only hope to share as much goodness as I have so graciously been shown and given.  Love to you all.

Are you walking on thin ice and prepared to swim?