August 7, 2012

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I am back.  I think.  Goals, Finish Lines, Training. Last week on vacation as I was running around the deck of a cruise ship (12 times); I felt like I was missing something in my life.  And then it dawned on me.  I miss racing.  I miss training.  I miss validating to myself that I am strong.  That I can still cross finishing lines.  Piece of me has been missing and on lap 8 it occurred to me I need to race again.  I have been in and out of doctor’s appointments the last several weeks thinking my battery was dying, thinking my dystonia is getting worse instead of thinking I have a race coming up…I NEED TO BE STRONG!  Everyone thinks I do these races to prove to everyone I can do it, but the reality is these races aret to prove to myself that I can do it.  I will never run a 9 minute mile and I will never be able to run a race at my boyfriend’s pace but I am proud that I CAN lace up and run with him.  Every time my feet hit the ground I remember that I am thankful for the chance that I can do it.  So last week I decided I will do a half marathon this year, I will stop my pity party and I will still keep on fighting the Dystonia and remind myself every day how lucky I am!

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One response to “August 7, 2012

  1. Hi Carrie, I must tell you that pre-DBS video was quite the shocker, first time I ever saw ANYONE who walked like me (at least before I recently reduced my meds and my gait worsened)! I have generalized dystonia, DYT1, primarily my right arm (switched to writing lefty when I was 9) and left leg but some involvement in my other limbs as well and what I’ll call a lazy tongue. You can learn about my journey with dystonia at http://www.dystoniamuse.com, my take after 40 years! I can’t believe you had DBS surgery, Dr. Alterman wouldn’t touch me when I saw him several years ago. Would love to know more about your journey with DBS. My neurologist would like me to stay low on my pills and brought up DBS at my last visit. I really don’t know what to think about DBS for me. If I thought it would help my speech I’d do it in a snap but I’m told it doesn’t and in certain cases can make speech worse. What was your experience in that regard? -Pam Sloate-

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