Wednesday, December 3, 2014

The Art of Breathing Bravely

One of my daily visits to the radiator heater in the lobby.
There is an art that exists within every one of us.  It creates depth, mood, and meaning.  It paints the very existence of life.  It is the art of breathing.

The past week has left me short of breath, words, and understanding, but with a wealth of tears, and the love and support of so many people.   I could not begin to navigate this difficult time, or the difficult decisions ahead without so much love and support.  I have been cared for so greatly, by so many.  For each of you, the depth of my gratitude is so very deep and endless. 

In the last week, CF has confronted me with some painstakingly harsh realities.  Realities I was not prepared to deal with, nor do I honestly want to deal with.  I want to go home to MY life: to teaching, to grad school, to my students, to my "boys," to singing, and to planning a future with no limitations. I want to go home to the life where I run from sun up to sun down knowing no moment was wasted.  I want to naively think of CF as something that I control mentally and can merely outrun with my will and adrenaline.  This past week has shown me a different course of life, and the realities in which I must face sooner rather than later: conversations I've only abstractly thought through, lung function numbers I've only imagined were possible, and a body that is betraying every dream for the future I've made.  

The problem with CF?  It doesn't play fair, it doesn't make deals, and it doesn't care about the life you want or have.  It's an ugly disease that hurts a lot of people in its wake.  A disease I've tried to protect so many people from, to protect myself from.  A week ago, I was forced to come to terms with what I had suspected was happening to my body: it was betraying me, and quickly.  For those of you who know me, I am all about making deals with CF, constantly trying to hold it at arms reach while I live my life built upon adrenaline.  Finally, I had no choice but to succumb to what was happening.  

Something wasn't right and I knew it.  I knew there was no merely "out willing" what was happening this time.  So, with my pride tucked away and fresh tears ready to be shed, I approached what lay ahead of me.  Little did I know exactly what this last week would hold and just how difficult it would be mentally and physically.  The problem is my mind is still running at 150 mph, but my body is running at 25 mph.  My mind and body are not communicating.  I am filled with so many questions of disbelief.  I have not had time to mentally adjust to the devastation CF has caused so very quickly.  I had prepared myself for the future, but the future being when I had set it to be: many years from now.  But today when I look in the mirror, or walk across the room, my mind does not recognize its own body.  Who is this person? It can't possibly be me.  How can I not catch my breath?  How can I possibly need oxygen? How can I only walk a couple of minutes and be forced to stop because my oxygen drops to an unsafe level? My mind and soul don't understand how this simply can be.  Will it ever understand? I don't think so.  

The amazing people at the MN CF foundation got me a puppy!
In the last week I've shed a lot of tears, to the point of hysteria at times.  I've always been relatively good at keeping my emotions in check and being strong, but this week has proven to be stronger than I.   The emails and words I've had to write this week were composed of some of my worst fears and disappointments.  I feel I've let myself down, but most of all let everyone else down.  I am being forced to look at the future and faced with making difficult decisions that could have a huge impact on the definition of what has always been my life: forcing me to reevaluate life and mourn the life I so truly want.  How do I prepare my heart and mind for this?  How do I keep from shedding endless tears?  I know whatever happens and whatever my future may look like, the art of every breath I take is utterly beautiful.  There is beauty in whatever life has to give me.  I must cling to every beautiful moment I am given and bathe in its greatness, regardless of what that looks like.  

I am so incredibly thankful for each of you, for your words of encouragement, messages, your prayers, your positive thoughts, surprise packages, and your unyielding strength through it all.  You all are so very amazing.  My life is filled with so much good.  All my love to each of you.

Breathe out the beautiful art that makes up your life.

*Monday overnight was spent in the ICU being desensitized to Zosyn.  I passed with flying colors.  Lung function and effectiveness of treatments will be reevaluated again on Thursday.  Other antibiotics and antifungals have also been slowly increased while watching the effects on the liver.  We remain hopeful, always.*


  1. Honey biscuits,

    you couldn't disappoint me if you tried. I want what's best for you, like everyone does, so you keep on keeping on and I'll be right there with you.



  2. Awww, Pretty Lady, my heart aches for you!! You will never be a disappointment to us, instead, you are an incredible INSPIRATION! Your wonderful attitude and your love of life just GLOWS thru you. You've shown us how to live. I have an issue about stressing over the little things when you, my dear, continue to live with amazing courage while dealing with this monster attacking your body. I sooo wish I could have given you Jordan's lungs. I will continue to pray for healing, comfort, and peace. Love you guys! Cheryl Monen

  3. Ashley,

    You are truly an inspiration to everyone. We are all by your side and we will always love you. Don't ever let anyone make you think otherwise. Keeping on fighting darling. :) Love you!

    Joshua Guenther

  4. Hi Ashley,

    I'm Megan, editor of I'd love to repost this blog on our site and talk with you about appearing on The Mighty more. I think our audience would love your work. If you're interested, shoot me an email at