Alive - Part I

What have you done lately that has made you to feel really alive?  I mean the type of alive that sends excitement for living coursing through your veins and your mind racing with possibility for the future?  At those very moments it seems nothing is impossible: you start dreaming big dreams, making plans for the future, and setting sights on adventures yet to come.

That feeling of being alive awakens you from the lifeless state of just existing.  It's amazing how quickly we can become so consumed by our daily commitments and schedules, forcing us to forget what it really feels like to be alive: each breath exploding with excitement and possibility.

Lost Time
I have been PICC free for over two weeks.  Where has that time gone?  Have I been living or just merely existing?  What about for those 68 days of IV's?  Was I just numbly getting through the days, or was I really "living" out each of them?  I am always so amazed at time and how quickly it seems to be flashing before me.  When I begin to think about time and how quickly it goes by, I begin to feel pains of desperation and panic.  I feel as if time is sand pouring through my fingers: the tighter I try and grip the sand in my hands, the more I lose.  I find myself these past two weeks hesitant to write these words or even speak them out loud because I know they can all change so very quickly.  And that is my very worst fear.  Those words?  I feel alive and the best I have in a long time.  There I said it, and I can hardly believe it myself.  Of course, my body still reminds me daily of the CF lurking beneath, but I feel truly alive.  To be honest, feeling this way terrifies me.  I know, it sounds crazy.  I feel so good that I feel I need to make up for lost time, that I need to squeeze every ounce of productivity out of my day because it might all change tomorrow.  I think back to the last two weeks and all the living I have been doing: the places I've gone and the activities I have done that I haven't felt like or had the energy to do in a very long time.


Limitless 
I catch my mind running loose with dreams for the future. At that very moment of dreaming I don't feel bound by the realities of CF. I feel invincible.  For just a moment I am making plans of traveling: going to all those forbidden places, riding on an airplane or metro system and not thinking about wearing a mask to protect myself,  and exploring a new city by foot without worrying about how exhausted I might be at the end of the day.  But then something brings me back to reality.  I realize that my life will never be that way: there are forbidden places, there's a serious risk of any confined space with people and wearing a mask is a reality to keep me safe,  and my body gets fatigued quicker than my mind wants it to.  My dreaming doesn't stop there.  I find myself dreaming about having a family.  I catch myself thinking, "I can do it. I will show CF, myself, and everyone else I can do it." I dream about what Christmas morning would be like for Mark and I, or what it would be like telling my best friends and family that we were going to be starting a family.  I dream about my future as a musician, a teacher, and all the things I wish to accomplish.  But then I am brought back to realities of CF and how they impact all these dreams and make some of them impossible and dangerous.  For that one moment though my mind is racing with possibility and I feel absolutely alive: nothing seems impossible, and I forget about the treatments, the doctors appointments, the bacteria last cultured in my lungs, and how it all affects the people I love.

Will I stop dreaming and searching for those moments that make me feel so alive?  No, but I do have to bring myself back to reality at times.  It's a delicate balance between not allowing myself to be bound by reality and being reckless and irresponsible with my life.  Today, I feel great and I know it will be a day of dreaming:  knowing I could wake tomorrow morning reminded of CF and its ruthless presence in my life.  Today, I am going to cherish every beautiful moment and each wonderful breath I have been given.  Love to you all.

Do something that makes you feel alive today.



This is Part I of a three part series. 

A Gift

Even after all this time

The Sun never says to the Earth,

"You owe me."

Look what happens to a love like that.

It lights the whole sky.

Every day our lives are consumed by a whirlwind of demands that surround us. We get to the end of the day and very rarely take a moment to look back at the wonders of our day and give thanks for the gift it was: our lives become lost in the chaos of the world around us.


I am just as guilty for letting the chaos and demands of the world engulf me, rarely taking time to stop at the end of the day to relive all the goodness I encountered.  I get swept up in looking towards tomorrow, forgetting what a true gift today was and all the people who made it so.

I challenge you, as do I myself, to take a moment to look back to yesterday. What acts of kindness and good filled your day?  By who?  It can be the simplest of gestures: a smile from a stranger, an unexpected phone call from a friend, a genuine compliment, a thoughtful gift, or something nice someone did that wasn't necessary.  There are acts of generosity and kindness all around us every day: we just have to slow down and make ourselves aware of their abundance.

Pay it Forward
The more and more aware I become of the abundant kindness that surrounds me, the more overwhelmed I become with guilt.  What am I doing to deserve such kindness, and what am I doing to pay that kindness and generosity forward?  Can I share enough goodness to equal or exceed what I have been shown?  Do people know how thankful and humbled I am for their kindness?  More importantly, how can I share such kindness? How can I pay it forward?

A Gracious Gift
As I was in the midst of writing this blog, another immeasurable act of kindness was shown to me: an act so selfless it takes my breath away and leaves tears streaming down my cheeks.  It is so incredible I must share it with you all.

An amazing musician and composer I so greatly admire and respect wrote to me a few months ago asking if she could compose a piece inspired my writings.  I was completely shocked and so incredibly humbled: even more so, in disbelief.  My writings? Really?  During the past couple of months this incredible woman would write to me saying, "it's not quite perfect, yet," or "it hasn't found its voice."  What humbles me even more is I know the amount of herself she poured into writing this piece and finding "its voice." She had countless other masterpieces to write, but she took that time to do something life changing for me.  Again, it leaves me speechless and in tears.

What did I get to hear and see this week?  A finished orchestral composition entitled "Breath." As I listened for the first time, I was overcome with emotion and moved to tears.  Each note so delicately and perfectly placed creating an incredible masterpiece: I cannot wait until its beauty is shared  with the world.

Who is this amazing, brilliant, strong, talented, generous, and selfless woman? She is a composer, musician, colleague, and most of all, a dear friend: Deanna Wehrspann.  You have given me one of the greatest gifts of my life, and your kindness will forever live in my heart.   Thank you, Deanna.

Challenge
Today, I challenge each of you, and myself, to go out of your way to show someone kindness.  Now, I challenge you to do something everyday.  Can you imagine the amount of good in the world if we all focused on sharing kindness? You don't have to write a symphony, but the simplest act of kindness can make an enormous impact.  My life is overflowing with abundant kindness and I am so very grateful.  Love to you all.

What kindness have you been shown and shared today?

We'd love to hear about the good that fills your day: kindness is contagious! 

Share moments of kindness from your day either on my facebook page, leave a comment on the blog, or drop me a note at breathebravely@gmail.com  

68 days

9 weeks and 5 days.

68 days.

1,362 hours. 

What has your life looked like the last 68 days?  Think of all the exciting things you've done, the places you've gone, the people you have seen.  Have you gone swimming?  To the lake? Have you spent time outside working on that tan?  Now, think about what you've been wearing these past few months.  Short sleeved shirts? Tank tops?  Swimsuit?  Now, think about how many showers you have taken in the last 68 days.

I know, you're wondering, "what the heck do those random questions have to do with anything? How many showers, really?" Yes. Really.

The Best of Days

This past Friday was an absolutely glorious day.  After 68 days of IV antibiotics, I got the "ok" from my CF Team to get my PICC line removed.  I honestly felt like a five year old on Christmas morning: so excited and giddy with anticipation for my appointment. I was overcome with joy and the possibilities that lie ahead.  Why was I so excited?

What does life for 68 days with IV antibiotics and a PICC line look like?

1.  No real showers.  I know what you're thinking, "ew." Yes, I still shower daily, don't worry.  I just can't get the 4x3 inch area of my bicep wet where my PICC line lives.  I can see you pondering such a situation.  Most people cover their arm with plastic wrap or a bag, but that means someone has to help wrap and tape it up.  It's a terrible feeling having to rely on people for such basic needs as showering.  I, however, have come very talented in the areas of being able to shower without any covering and managing not to get my PICC line wet.  I know, I am talented.  

Last IV

2.  Cardigans.  Lots of cardigans.  It's summer, and it's hot.  My morning usually consists of planning what cardigan I am going to wear for the day to cover up my PICC line.  It's 92 degrees outside, and what am I wearing? A cardigan.  I am sweating to death, but that cardigan keeps my secret hidden beneath its sleeve.  My pasty white arms yearn to see the sun.  

3.  A strict schedule: calls to Homehealth, deliveries of IVmeds every few days, weekly PICC dressing changes, trips to the clinic for lung function tests, consultations with my CF Team, every 8 hours of administrating antibiotics, and planning my day out to fit all CF's demands. 

4.  Patience.  I have learned that it seems like in an instant an infection can flare. That all the hard work and progress I've made can be so quickly undermined by an exacerbation.  That my lung function can quickly plummet 1O% after working for so long to get it up. That my body can quickly rebel.  I have learned that the fight takes patience. That I am not going to win this battle in a day: it may take 68 days, or more. That things might get worse before they get better.  There's no sense in wishing things to be different because they're not.  This is the life I have been granted and with that I am thankful for each battle and the patience to endure. 

5.  Sleeping.  When I am hooked to continuous IVs, sleeping isn't the most ideal.  My "European Satchel" comes to bed with me, and often times I awake in the middle of the night wrapped in tubing.  I also have to make sure that I don't abuse my PICC line too much with tossing, turning, or sleeping on my arm. 

PICC free

When you pick out your clothes in the morning think about having to cover your arm.  When you hop in the shower to quickly rinse off think about not getting your arm wet.   When you go to sleep think about not sleeping on a certain side.  Think about the first thing you have to do in the morning is "hook up" and how the rest of your day is going to play out.  

Excitement

Friday morning I awoke filled with so much excitement.  Excitement to reach 48% lung function.  Excitement for freedom from a strict 8 hour schedule, no cardigans, a real shower, to go swimming, to sleep untethered.  Excitement for freedom, even if I know it won't last forever.  No matter how many days I get of "freedom," I will be immensely thankful for each of them and grateful for my CF Team that has helped me reach this point.  Love to you all.

What have your last 68 days looked like?

Celebrate

twinfallsfireworks.org

There are few things as miraculous and beautiful as looking up into the night sky and seeing a burst of color dance across the sky: an amazing celebration for every onlooker.  I remember as a child sprawled out on a blanket in the middle of the outfield of the neighboring town's baseball diamond, looking up at the sky and waiting in anticipation for the light show that was going to be painted across the sky.

There is something so special about the moment when the first firework unfolds its glory into the night sky for all to see.  We know we are about to witness an entire fanfare of timeless and awe striking beauty. The sound of each firework being lit, hearing it soar to the sky, and the anticipation that stirs within as we wait to see the magnificent burst of color against the black canvas.   I think we have all whispered to ourselves "that kind is my favorite."

twinfallsfireworks.org

Effortlessly, the miraculous explosions of color dance against the night sky like a choreographed dance before our eyes.  At the beginning, one firework goes up, then another, not impeding on one another's moment.  Then suddenly, there are multiple fireworks awakened at the same moment, creating a mesmerizing and continuous explosion of color in the sky.  A flourish of fireworks continues to build in intensity until suddenly it's over.  All that is left is a sea of smoke and the smell of sulfur.  Once again, the sky is returned to its black canvas: the celebration of endless color has ended.

Celebrate
What makes a celebration so special?  The word alone gives excitement.  We wait in excited anticipation for each celebration in our lives, each event worthy of fireworks.  The day and event finally arrives. We are encompassed in joy, but then the day is over.  The celebration is done.  All that is left of the day are memories and the joys we experienced that will forever live within us.

But why can't every day contain that level of excitement?  Why can't we anxiously and excitedly look to "tomorrow": the day after the celebration?

Each day is a celebration in and of itself. There is always something to celebrate, great and small. This day has been given to you, celebrate it.  Does it require a show stopping fireworks display? No, but each day deserves a celebration all its own.  What am I going to celebrate today? I celebrate the beauty that greeted me as I walked outside this morning. I celebrate the opportunities the day has in store for me. I celebrate that I have the most wonderful people in my life. I celebrate each moment that makes me smile.  I celebrate each breath.  Love to you all.

What are you celebrating today?