Sunday, August 31, 2014

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.

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. 

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