I am so excited about the attention over on our CMTClicks site. We have had over 3500 visits! That is huge to me, showing that we are not alone in the CMT community. We are everywhere! Along those lines, I am fascinated by spending so many days shining a light on my life with CMT. I worry what people will think. I worry about my family. I worry about my friends. Worrying about me. And the thing that is so hard to catch in words is that, yes, this is a tough path. Yes, there is pain every day. Yes, I need help. But above it all, I want people to know.
Don't be sad for me. I am not sad.
Without diminishing CMT, I want the world to know that I am not helpless.
I am broken, yet whole. I am damaged, yet perfect. I am in trouble, yet untroubled. I am limited, yet limitless
CMT changes my normal. I would rejoice for a cure, but my life is not waiting for a cure. I have lovely, laughter-filled, creative days.
When I say I am fine, I am fine. Sure, my fine doesn't fit most people's description of fine, but it's true for me.
I used to be afraid of braces and wheelchairs. They used to be symbols of defeat for me, evidence that I hadn't fought enough, or proof I was that weak. But here is what I learned. When a person has braces or crutches or a wheelchair, those tools become normal. They blur into the background, like white paper on white paper. In my world, I reach a place where I forget about them altogether.
Recently someone saw me using crutches with my black brace/boot and her eyes opened wide. "What happened?" Her voice had that elevated concern that had me glancing at the brace as if it may have changed color or something interesting.
"Oh," I said. "Nothing much."
"You poor thing."
I smile. "It's getting better."
That is what I said at Back to School Night. It's getting better. Even the kids at school forget. At first, it was such a big deal- my teacher in a wheelchair. Now, not so much.
I guess my hope is for people outside the community. We appreciate compassion, but we don't need pity. We appreciate help. But we are not helpless. It takes incredible strength to be weak. And incredible bravery to share stories of weakness. I get nervous after pressing Publish.