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. 

Alive - Part III

Spontaneous Trips

How can you be sure that life does not pass you by? How can you make sure you are really living in each moment you are given?

It's so very easy to get caught up in the chaos of life and become engulfed in a mind numbing routine that we forget what it feels like to be truly alive. It takes real work to stop and make a conscious effort to be alive and present in every moment.  While I completely understand that at times we must just merely exist and take in the world around us, we must never allow ourselves to become a bystander to life.   Before we know it, we have lived our entire lives without really ever living.  

Picnic in the park with friends.

Be Present

CF has caused me to frequently ponder life and what it means to be alive.  When CF confronts me and my journey becomes uncertain, I feel the need to live more than ever: I want to know I experienced and lived my life to its fullest potential.  When CF comes at me with every vengeance, it causes me evaluate how I am living my life.  It forces me to think about looking back upon my life, and what I may see when it's at its end. What do I want to see?  What do I want my life's story to tell?  What regrets will I have?  Did I truly live?  

I begin thinking about all the things I want to do and experience: how I want to drink in every ounce of life.  Where do I want to go? What do I want to see, to experience?  I want to be alive and present in every moment, experiencing it all. I am desperate to live, not just exist.  I forbid to be a bystander in my own life: there is far too much life to live. 

 - 55 -

Weekend Adventures

For the last week I have been so overcome with disbelief, amazement, gratitude, and hope.  After being off of IV's for a few weeks and because I have been feeling great, my Team wanted me to come in for a quick lung function check.  What I am about to say still brings tears of disbelief and gratitude to my eyes: I blew a 55%.  I still cannot believe it.  It's the highest it has been in many many years.  I shouldn't say "I blew 55%," I need to say "we blew 55%."  I could not have done it alone.  It is a moment I will never ever forget.  I will never forget that feeling, hearing those words, seeing the smiles and excitement of my Team, and telling my dear friends and family the news.  From 37% to 55% in two months: nothing short of amazing.  I have been feeling the best I have in years, and for good reason. 

With this new excitement I find myself trying to fully live every minute of every day: weekend adventures, picnics, visiting friends and family, lunch dates, reading, spontaneous day trips to the big city, and continuous dreaming of what may come: knowing that it can all change in an instant.  I live in fear, always looking over my shoulder, waiting for CF to take it all away again. That's how CF works.  It can steal your independence and momentum for living so very quickly, breaking you down and stripping you of dreams and most of all, hope.  It leaves you to wonder if this is the beginning of the end, and fills you with fear of what the future holds.

This Moment

What am I doing right now?  I am in the pursuit of living.  I am enjoying every beautiful breath, living in each moment, and making a list.  A list? Yes, a list, actually several.  Instead of thinking backwards, I am thinking forwards.  I am being proactive about what my life will look like when I am at the end of the road looking back: I am living now.  I am making Bucket Lists.  

Sure, we all have things we'd like to do.  We make a mental list hoping someday to accomplish certain things within our life, but very rarely do we set them to paper for the world to see.  Why is a bucket list a good idea?  It forces us to live, to really truly live in every moment, continuing to look forward, not back.  I have written several bucket lists: one for the next 6 months, one for the year, and one for the next 1O years.  It's a work in progress, but events, adventures, and accomplishments range from simply picking the perfect pumpkin at the local orchard, having a picnic, graduating with my masters degree, visiting the Ballou family castle in Ireland, to seeing each of my goddaughters graduate from college. The beautiful thing about each list is they are alive: always growing, changing, and becoming something better, helping us to remember to live. 

Just a very few things from my lists.

Challenge

I challenge you to make a bucket list with 5 things you'd like to accomplish by January 1.  Remember, they can be the simplest of things to the grandest of adventures.  I then challenge you to do the same thing for 1 year, and then 15 years.  It doesn't matter what your lists consist of, just so that you are really living in each moment and feeling truly alive.  Love to you all.

What's on your bucket list?  

Alive - Part II

What's one of your favorite things to do? What is something that is truly special to you that you enjoy immensely? Something that just the mere thought makes you happy inside?  I am talking about that one thing you do for yourself, that thing that sends joy surging through every part of your soul and makes you feel alive.

Joy

My guilty pleasure?  Canning.  Yes, I said canning: hot water baths, jars, and the smell of blanching tomatoes.  You know, the thing you think of your grandma doing when you were a kid.  I love canning.  It's something that makes me tingle with excitement just thinking about it.  It is something I do purely for my own enjoyment: it allows me to be creative and make something to share with others.  Who doesn't love food? Especially food made with love? 

My favorite time of year has begun: canning season.  Just in the past couple of weeks, I have made Rhuby Red Jam [Cherry Rhubarb], Rhuberry Jam [Blueberry Rhubarb], and Sun-dried Tomato Pesto.   To see my finished little jars of jam fills me with delight.  What makes my heart swell with immense joy? When I get to share it with others and it brings them happiness.  

Reflections

This canning session I find myself reflecting on the past year.  I seem to be doing a lot of this lately.  As I made a run to the grocery store to gather all the supplies I would need for my next canning adventure, I found myself thinking about a year ago and how different I felt.  I thought about how I never thought I'd feel the way I do today ever again.  I vowed at that moment I would never take a mere trip to the grocery store for granted again.  A year ago the simple thought of going to the grocery store exhausted me: it was so much work just to walk up and down the aisles and then to transport and unload the groceries.  I remember last summer sitting in the grocery store parking lot and calculating how far it would be to get the bare necessities, and most time getting in the store and deciding to forgo much of my list for just one or two items so I could leave.  It truly saddens me to think about.  Thankfully, Mark did most of the grocery shopping, always asking what I wanted or needed.  

It was a constant game of give and take with my body.  I had no energy to do anything and I felt like a foreigner in my own body.  It affected everything in my life: the relationships with my friends and family, with Mark, and the things I once found so much enjoyment in doing. It forced me to become more introverted and removed from the world: physically being forced to sit by and watch life pass me by even though mentally I was stronger than ever.  I felt I had no control over what was happening to me.

I hardly did any canning last year.  As the produce from our bountiful garden piled up, Mark so willingly took over the canning duties.  He did all the canning for the remainder of the summer.  I would sit at the table and watch as he worked: blanching tomatoes, cutting up peppers, onions, and herbs, and canning tomatoes, soup, spaghetti sauce, enchilada sauce, and several types of salsa.  He is so good to me. 

Different

This summer is different. I feel alive again.  It's taken so long to get to this point, but I am so grateful.  I feel like I am clutching onto my health so tightly right now: terrified of losing it.  It is a reality that those days will come again. The days of exhaustion, rampant infection, PICC lines, and the progression of CF are inevitable. I am realistic about that, but today I am so thankful for energy, for being as healthy as I am, for trips to the grocery store, canning, time with friends and family, and feeling truly alive.  

Today I am doing something that fills me with the utmost joy. I've made my trip to the store, gotten my jars ready, and explored some new recipes. There are 25 pounds of peaches on my counter waiting to be canned into something amazing.  I hope to share that joy with all of you.  Love to you all.

Take a trip to the grocery store today and enjoy every aisle. 

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?