“This is freedom. This is the force of faith. Nobody gets what they want. Never again are you the same.
The longing is to be pure. What you get is to be changed.” ~ Jorie Graham

  
For ten years pieces of the life I aspired to have been falling away. A kind of magical thinking has prevailed. I’ve still believed I will heal and be more well. I’ve imagined the surgeries would eventually stop and the progressive nature of my EDS and all the resulting conditions would be slowed. Over and over I’ve visualized my body becoming strong as it once was. I've longed to return to meaningful and rewarding work. I've wanted to pay my debts and become the giver again. More than anything I've ached to write something different and new.  

​I’ve talked of loosening my grip, surrendering my life and opening my heart to the hard, but I’ve never fully considered that almost everything I hoped and planned for is ‘impossible’ now. In the face of permanent physical disability I have to accept the reality of my limitations and find fresh purpose.

I read Sheryl Sandberg and Adam Grant’s new book Option B: Facing Adversity, Building Resilience and Finding Joy several weeks after a brain shunt revision in April, my twenty-sixth surgery. The wisdom in this book reframed everything. How did I miss this simple truth for so long?

Option A is no longer available.

I began writing on two sides of a new journal. The left side is full of all the things my life used to be and the ones I'd planned and prayed for the future. I crossed through almost every goal or dream. On the right side is my Option B.

My Option EDS. 

I’m still staring at the mostly blank page, but the calling to provide retreats for my zebra warrior family is swimming in the white space, bold and true. The intention of these retreats is clear.  

​The time of rest and renewal will be centered around encouragement to grow stronger in adversity, to gain appreciation for the good in difficulty, to develop new and important relationships for support and to find greater meaning in the fight for the best life possible.

We will bravely honor our limitations and embrace the unique possibilities born from them.  

“Forces beyond your control can take away everything you possess except one thing, your freedom to choose how you will respond to the situation...When we are no longer able to change a situation, we are challenged to change ourselves.”  ~ Victor Frankl

This is the force of faith. We will be changed.


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