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The Soldier and the Squirrel introduces children to the Purple Heart

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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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Tuesday
Aug272013

The Hole

Today my mother and her boyfriend Ron surprised me with a lobster boil for lunch. A bit of magic sprinkled over a very difficult week. And it's only Tuesday.

I was seen by a neurologist yesterday to rule out ALS. The life expectancy once diagnosed with ALS is an average of three to five years.Needless to say, many thoughts went through our minds. She looked in our eyes and said matter of factly that I do not have ALS. My EMG was negative. We burst into applause. Don holding me in his arms as tears streamed down our cheeks. We immediately crossed to my doctor's office to share with him our news. My doctor paused rather than offer applaud. Our bubble was popped.

Evidently, there is no one test for ALS. It is diagnosed by what it is not. So you must rule out the universe before naming a hole so black it never ends for those you leave.

So why do I still feel as though I am floating above the ground? It is as though processing the fears of a terminal illness, was exactly what we needed. When faced with a serious disease, your mind can't help but seek out the darkest thoughts that curl up in the corner of your mind. But being able to process these feelings - together - was the most therapeutic experience of our marriage and our lives. Not that I want to relive Sunday night ever again. When Don held me so close I felt his heart beat inside my chest.

We are not quite out of the woods. CRPS is enough for anyone's lifetime. But at least now we are on our way. We are ruling out diseases that, like ALS, could be causing my paralysis to spread. CRPS alone can cause immobility, but is hardly ever this severe.

I am in a much stronger place than I was. Because now I know what it is like to be afraid of death. To shed tears with the love of my life because it is a love too soon to leave. I know what it is like to imagine my daughter's wedding with an empty chair. For me.

So for now my days are filled with hope because the neurologist said no.
We are scheduling a spinal tap to compliment my buffet of tests. And my new titanium chair arrived today. I am celebrating the movement I have left. So I can applaud the demise of any other black hole that mimics ALS.

Life is blessed.


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