October 3, 2013

Why I run…

Today’s blog was going to be the big splash – exactly 1 month from today I will be retiring, blah, blah, blah..but instead things have happened in the last 24 hours that have changed the theme of this piece tonight.  Life has a way of throwing you curve balls and seeing how you react…the funny part though is that in today’s world those twists and turns get delivered in a text message.  So instead of letting everyone know that I can conquer the DBS world, run for all of those that can’t, I just want to let everyone know Dystonia is a test of one’s strength everyday.  It throws you curve balls in physical twists and turns, in ways that you just can’t anticipate.  I have struggled with this disease all my life and someone recently pointed out to me that I refer to myself and the disease, not just “carrie” and that struck me.  Dystonia is me, part of me, nothing different than having blue eyes or brown hair.  So I no longer refer to the disease I just talk about myself now (albeit 7 days)!  And after my last half, I’ll be running my 10K in Napa and 10K in Marin for me, to be healthy to be sporty and to have fun – not for THE disease not to prove that I am stronger than The disease, but because I can and they are fun!

I wanted to share a comment, I received tonight the comment couldn’t have been more timely, tears of joy and happiness streamed down my face all at the same time but wanted to share.  I am sharing because there are so many ways I can spread the word about Dystonia and my sister does it in her own special way as well!  So to the sisters that sometime believe that hope is a strategy for a cure to Dystonia!  Scottie, thank you, your timing was impeccable!

Hi Carrie. It’s so nice reading your story and that you have run so much to spread awareness for such a horrible disease. I too have had DBS for my dystonia. And that little sister of your’s, well let’s just say I know a little about her. She has been my person pushing me to fight and tell the drs when something isn’t right. Suzie is such an awesome person and I know firsthand how proud you make her when you run. I always had a vision that when I got out of my wheelchair, that I would do what I always thought I hated and that’s run!!! I found out you were doing this run in SF because I was searching for a run myself because I have found the joy in running. Maybe it was being in a wheelchair. Maybe it’s because I felt I took it for granted that at one point I could get up and run “if I wanted to”. (And that was rare). But I do know what inspires me now…..YOU!!! You see I don’t worry about if this joy will last. I’m here, like you, standing as one of the fortunate ones that have been given this second chance at doing something positive for others. I had this goal in mind that I would run to spread awareness as long as I could and well, you beat me to that. I now see myself as the one who will carry on in your place, spreading the same awareness and hopefully do what you have been able to do, change lives. So good luck in retirement and enjoy your down time with Suzie. Relax and let others continue what you have started. You are a HERO to many of us!!!

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One response to “October 3, 2013

  1. I have always said, “Dystonia doesn’t define me I define my Dystonia.”
    Words of wisdom from your lil sis,
    Suz

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