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and Rocky the squirrel with his backyard friends. This story began as a

blog during my first year in bed after my incident. With much

encouragement, it is now a book and has been placed in the

Ronald Reagan Presidential Library & Museum. Please watch the video

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Thursday
Dec052013

The Journey of Change

Something has happened to me. A shift in my DNA perhaps, a tangling of my genetic markers. What happens to you when a new normal is not anywhere close to who you used to be? When you find yourself on a journey of change?

It's been a few weeks since I returned home. When my legs came back to life. I am still in-treatment each week and have a way to go. Perhaps this is normal after a big event. A kind of post-partum after the birth of a child. When the newness of the miracle has not worn off, but the reality of your life-change becomes all too real and the daunting sets in.

Don't get me wrong. I am thrilled with my progress. Just months ago I was on my way to becoming a paraplegic with a quadroplaysia diagnosis. My doctors' goal was always to get me mobile around my home, and only having to use the chair upon venturing out. This is exactly where I am. I can now sit at a dinner table or through a movie. I can be more independent and am no longer bed-ridden. I have everything I wished could realistically occur, even though the mobility was a long-shot goal.

But along with all of the progress, the CRPS still rears its head. Being mobile and not being able to lift my left leg yet, with the pressure on my lumbar spine causing my leads to shift, and the Rhizotomies in my neck wearing off, my battle continues. I awake each day not knowing what energy will reign. Each day brings levels of pain that allow me to do one thing a day. Clean out one drawer. Or drive to one store. Any more than that, and my body begins shutting down.

So I rest, a lot. But in order to heal and get stronger it is mandatory I do physical therapy exercises every single day. I have mastered the art of pelvic tilts that would make Beyoncé proud. The most important exercise of all, however, is reminding myself of the blessings I have every single day; How incredible it is that I have come so far. Yet I wonder how much further I can go? And maybe that is the key to my concerns - That the buck will stop here. That my life will forever be in a limbo of who I was and who I hope to be.

This is the balance now. The balance of gratitude and hope, peppered with the question of when and where will acceptance fit in?

May I be so bold as to say, I hope I never have to accept my health the way it is. Even in the celebration of my ketamine infusions and return of my mobility, it would be dishonest of me to say it is all ok. Because CRPS never goes away, and my fellow patients know this all too well.

My goal now is to accept each day for the beauty within the beast. To embrace the fact I have come so far because of the support of so many, that I have an obligation to never give in. I have work to do, and lives I hope to help. So I live for the moments in which others live. For the moment my children come through the door from school. For the kiss my husband will bring to my lips, reminding me I am still here. I am, for the first time in my life, living for moments that are not my own. I live for the life I can now be present for. For the dinners I can share with our friends. And for the fact that because of my condition I now spend time in person with friends - rather than on the phone. With chronic pain, talking on the phone feels devoid of meaning and strips me of energy that's fleeting. Visits are short and sweet but filled with so much more meaning than ever before. So these are the moments I am living for.

As I look at the possibilities of more surgeries, to repair my slipped leads and insert a stimulator to reach my neck, it is my goal to release 'the daunting'. To let my ego slip into the winds around my life. And to embrace my new normal as an ever-evolving process of change. A journey so different than I had before, but it is a most precious journey all the same.

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