Pack Your Brave

Passport? Check.
Tickets?  Check.
Sunglasses? Check.
Sunscreen?  Check.
Enough clothes for a week's worth of all weather scenarios?  Check.... well, maybe I better grab another sweatshirt.  Wait... it won't fit. [story of my life]
Toothbrush, shampoo, hair brush?  Triple Check.
Contact case, solution, glasses?  Check.
What am I forgetting?

No Escape
Vacation.  It's such a glorious thing. There is so much to look forward to, to plan, and to dream about. How will we utilize every moment to its fullest potential? Each second is bursting with possibility.  We look forward to embarking on new adventures, to a time of renewal, and to breaking the cycle of chaos that consumes our busied lives.  Whether these adventures transport our body or merely our mind, they are a means to escape and a way to forget about the realities that lie amidst our normal, chaos filled, every day lives.

But what if what you'd love to escape from most followed you not only on vacation, but everywhere you went?  What if there was absolutely no escaping from it mentally or physically? What if forgetting about it was a matter of life or death?

To Seize the Day
My summer was alive with many adventures, both great and small. Mental vacations and grand road trips filled my days: each incredibly miraculous. I seized every glorious moment to try and escape from the realities that are my life.  The reality I'd love nothing more than to take a vacation from? CF.  Just a week. A month. A day...

Just a few short years ago I wouldn't think twice about taking a "vacation" from CF: pretending it didn't exist, mentally and physically pushing any sign of CF out of my life. I honestly believed, if I couldn't see it, no one else could either.  I was embarrassed, ashamed, and disgusted with the mere thought of

anyone seeing what CF could do to me.  How it made me a slave to tubing, machines, nebulizers, and endless amounts of pills. What would they think of me? Would they see how weak I really am?

When going on vacation or just visiting friends for the weekend I would panic. I still get a sick feeling in my stomach thinking about it.  Where and when will I do meds? Who will see me?  What will they think of me?  Will they be disgusted?  How will it make them feel? At home I can go in my little med room, shut the door and the world out from who I am.  I can emerge, leaving any sign of CF in that room and concealed beneath my well practiced physical and mental make up. But what happens when I can't hide myself away in my little room? When I can't merely leave CF behind closed doors to embark on an adventure?  When my daily life revolves around 3 treatments?

 No longer can I just merely take a "vacation" from CF.  No longer can I leave CF at home and escape away to a great adventure.  I know that.  I have worked so hard and fought tirelessly to get where I am today: I can't let my guard down even for a moment. Missing treatments can start a downward spiral: stealing months or years away from me.

I have come to the crossroads in which I have had to decide to either chain myself to my little black chair and little med room, or bring CF out into the world with me.  To be honest, the little black chair and my little med room get mighty lonely.  Imagine being confined and chained to the very thing that is a constant reminder of what is trying to killing you: a reminder that you are in a constant fight for just one more breath.

Decisions
Only a few people have ever seen me do my treatments.  I've been so protective of it all my life.  So much that I wouldn't even tell the closest people in my life that I was in the hospital, just so there was no way of them coming to visit.  Why didn't I want them to visit? I didn't want to risk them seeing me in a less than perfect state, to be the center of a pity party, or make them feel uncomfortable. I know, it sounds silly.

This summer I had a decision to make.  Do I spend my summer confined to my little black chair and med room just so I can continue to conceal CF from the world? Or do I bring CF out into the world with me, and live unashamed of the realities that are my beautiful life?  If I wanted to explore the world around me, eat up every moment life was willing to offer, and live life to its fullest potential, I had no choice but to pack up my little med room and take it with me for the world to see.  I must bravely bear it all: all the good, the ugly, and beautiful. This summer I've done treatments in a tent next to the shore of Lake Superior and the badlands of South Dakota, in hotel rooms in Chicago and Minneapolis, in cabins and B&B's in northern Minnesota, and in our baby camper next to the Missouri River.


Have my dearest of friends seen me? Yes. Does it still bother me that they've had to see me in such a way? Yes, but it's who I am.  It's part of my beautiful life.

CF doesn't take a vacation from destroying my body, so neither can I in the fight against it.  It truly is a matter of choosing life or death, and I choose to live.  I choose to breathe bravely.

Vest? Check.
Nebs?  Check.
Meds and Pills? Check and check.
Bravery? Check.

I am packed and ready.   Let's go on vacation. Love to you all.

Be brave today: don't hide your beautiful self from the world. 

Waves of Generosity - ALS

There is a mass movement happening.  Have you been swept up in its powerful current?  Have you dumped a bucket of ice water over your head?  Donated to the cause?  It's changing the face of the fellow orphan disease called ALS.  It's giving hope to those who suffer, a voice to all those who have been silenced because of the horrific disease, and celebrating the memory of those who have been lost.

Look how one small action has created a mass movement of good.  Look at what people are capable of doing, the fires of change they can ignite.  The generosity and kindness of people are truly amazing.  That single spark can create a better life for all those who suffer, maybe even a cure.

Sea of Support

Living a life bound by the high and low tides of an orphan disease [CF], I understand how incredible and humbling it can be to have family, friends, and complete strangers fight for your cause.  I think it is so incredible what the power of human compassion, empathy, and caring can do: what it can accomplish and the lasting impact it can have on an individual.  Speaking from experience, it is honestly life changing.  The buckets of ice may start to slow, but the lasting effects of people's giving spirit and generous support will last forever.  It's not the dollar amount I remember when I look out at the sea of support I have behind me, it's every single face, personal note, and act of kindness.  As for now, ride this wave, and keep the ice coming!  

Just like CF, ALS steals many mothers, sisters, uncles, dads, and best friends far too soon.   It steals dreams.  It steals hope.  It steals a future.  This is why it means so much to me to show my support to other causes besides the one that directly impacts my life.  The war can only be won if we fight together, no matter the disease.  In the end, regardless of the cause you choose to support, do it with your whole heart. Whether it is CF, ALS, Breast Cancer, or Heart disease, we are all in this fight together: a fight for tomorrow. Your support and voice gives each person impacted a hope for tomorrow and the strength to fight each battle, no matter the disease.  Generosity and kindness are powerful forces: share it unconditionally.  Love to you all. 

I challenge each of you to donate $25 to the cause of your choice.  Remember, we are all in this together. 

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.