Why I Run

Carrie Siu Butt ( Fall 2001, Stanford GSB Application Essay):

” I still daydream about running a marathon and hope that one day they will find a cure for Dystonia.  What matters most? I want to win this fight.  I want to destroy this monster that has attacked my body.  And if I don’t so be it.”

About 23 years ago I was diagnosed with Dystonia.  The disease struck at puberty and only worsened as I got older.  As I approached my 30s walking became a painful and arduous exercise; I was afraid my inevitable path led to life in a wheelchair.  But three years ago I decided to try an experimental procedure called Deep Brain Stimulation to hopefully mitigate some of the physical pain of day to day life.  To my surprise, six weeks post brain surgery the first miracle happened – I began to walk “normally”.  Things improved steadily and I decided right then that if I ever had a chance to run, I would set my sights on a 10K.  One year later, I achieved that goal.  For my third year anniversary I decided I would run my version of a marathon – 2 half marathons.  On April 25th, I shed tears of happiness completing my first half marathon with my best friend Liz.  On August 2nd, I completed my second half marathon which I dedicate to my sister Suzie.  She also suffers from this disease and at one point in her life knew what it was like to live in a wheelchair.  The legs that crossed the finish line on August 2nd were hers!  I plan to run this time with two amazing friends who have held my hand many times when I lost focus on what was most important.  Finally, I would like to thank my loving parents and friends for cheering me through this journey and believing in me when I so often wanted to quit.  When I crossed that finish line, I will have proven that miracles do happen – when you let yourself believe in them!

This has been intensely personal for me, and I want to support others who are going through the same experience.  I run for all the boys and girls that can’t; the ones that wish that they can run and I do it for myself!  I am excited to work out every day for every person with Dystonia, you are all in my heart when I run, cycle or swim!

To give you a sense of how far I’ve come…. this video is me, Pre-Op:

If you’d like to share your thoughts, please feel free to add a comment below.

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60 responses to “Why I Run

  1. Pingback: Dystonia Moves You. 5 People Make That a Good Thing! - Patient Worthy

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  4. I don’t know you, but your sister is an awesome lady that I am glad to call one of my dearest closest friends. Reading this brought tears to my eyes.
    I hope to meet you one day.
    Keep running,
    Tammy

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  6. Wow! You are quite impressive. I had a random conversation with your mom today who led me to your site. Best to you and your family. I love your positive attitude!!!!!

  7. Carrie words can’t express my complete astonishment and so grateful to have met you this past Wednesday. I didn’t get a chance to speak to after the event and was looking for your email online and came across your blog. Tears came down my eyes as I read various posts. I’m truly touched and would love to join you on a run as I myself am a runner.

    I look for to speaking to you.

  8. Carrie, Here’s a tribute to you and all the other dystonia bloggers who give so much of themselves to help raise awareness: http://dystoniamuse.com/2013/06/13/dystonia-bloggermania/. I’m so glad we met through this journey and I’m thrilled to link to your blog on my site, hopefully helping to spread your inspirational story -Pam-

  9. Wow, I’m so absolutely amazed by your story and you are a great inspiration! My 2 year old son also suffers from Dystonia and has had it since the day he was born. he gets different treatments and still has a long way to go before he is “nearly normal” you’re an amazing woman Carrie and good luck!

  10. Your awesome! Keep kicking dystonia’s butt!

  11. Carrie-
    I have dystonia and have had an awful flare this month so i typed in “fight dystonia” in google and you came up. Do you have any advice for me- my gait is similar to yours and I use a cane often but the muscle pain everywhere is so discouraging. I’d love to hear your advice. Linda

  12. Carrie,

    God bless you! You are an inspiration to us all!

  13. Inspirational story, CSB.

  14. Charles Knowles

    I never knew it affected you so much….i know I’m late but proud of you I only ever hear about Suz ( hardly get news bout her anymore) all the best to both of you WELL DONE

  15. Carrie – As strong and beautiful as ever… I’m so proud of you!

  16. Run Carrie Run.

    • hey dave
      I was just telling someone about my sister and decided to look at her page and saw that you had posted here back in 2009. Didn’t know who you were when you posted a couple of years back.

  17. Tiffany Showell

    Carrie I am so excited for you and for the incredible progress you have made in these last few years. Thank you for sharing your story. You are a complete inspiration! God bless you!!

  18. Siu Bear, this site is amazing and you are truly amazing! Keep up the fight for all and the world will be a better place.

  19. Megan Kelaghan Houlker

    Carrie – just saw this via facebook. I cannot believe how much the past few years since we have connected has brought you. I am both humbled and inspired by your story. Kick butt in Chicago!

  20. Bethany Rogers

    Carrie – I can’t wait to cheer you on in Chicago!!! Let me know if you need any special local support!!! B:)

  21. Cynthia Greenlee-Donnell

    HEY!

    My parents were just asking about you, and I decided to see if I could find you online. Send me e-mail, and we’ll connect.

    Cindy

  22. Gabrielle Guttman Krampf

    Carrie,
    You are an inspiration to me in so many ways. I’m am constantly amazed by you and love you tons!
    Gab

  23. Carrie- You are amazing, as well as a wonderful friend to Gab.
    Where are they doing the tests besides Florida?
    There is nothing as wonderfulas pushing yourself as far as you can.
    MUCH LUCK!

  24. Carrie,
    we met at Liz’s dinner a few weeks ago, I had seen your party girl fun side then, WOW.. you are so amazing. It’s an honor to support you. Best wishes!!!

  25. Go Siu-Bolt go! You are a living, breathing miracle. And one brave bad ass. Congratulations!!

  26. I can’t wait to run CHicago with you in 6 weeks!

  27. Carrie,
    you are so AMAZING! Im so proud of you!

  28. Yeeeaaa!!!!!!! Rock it, CSB!

  29. You’re an amazing woman, Carrie! I am inspired by your love and your strength. Thank you so so much for sharing.

  30. Christie Siu Butt

    From one CSB to another, I just wanted to say that your fight it inspirational. Good luck with your next marathon run. btw, whenever you’re in Toronto, give us a shout. The family would love to see you.

  31. CSB – you are amazing kiddo! Can we still meet for lunch at Republic and Holmes Kitchen or are you “in training”? 🙂

  32. Sorry for the duplicate post! Consider it Double support !!

  33. RUN GIRL RUN!!!!! I always love hearing about those of us who overcome this monster. Thanks for sharing your story and being so brave. Your fight is our fight 😛

  34. CSB – your journey is truly an example for us all. You’ve conquered so much and always with grace and a great smile!
    D

  35. Wow, Carrie, this is very touching. Thank you for sharing it with us.

  36. Chris Reynolds

    CSB, thanks so much for sharing your personal journey. I am confident you’re making a difference for others. Way to be a fighter. Hope to catch up with you next time I’m in the US.

  37. Chris Reynolds

    CSB, thanks so much for sharing your personal journey. Way to be a fighter. You have and will continue to make a difference. Hope to catch up with you next time I’m in the US.

  38. I love the Sui-Bolt!

  39. Carrie,

    This is marvelous! I just returned from the Movement Disorders Society (MDS) meeting in Paris and learned so much. You continue to inspire us. Best wishes,

    Irene

  40. Candice Nugent

    Watching your video and working with your sister and Tyler, I have such respect and admiration for your courage and strength. I hope you continue to fight for a cure not only for you but for all those affected by this disease.

  41. Congratulations, CSB. Thank you for sharing such a personal journey.

  42. It’s been an honor to be part of your amazing journey. From the pre-surgery haircut at Walmart to the finish line in Nashville – laughing and crying all the way. xoxo – LD

  43. Carrie you brought tears to my eyes. You have come so far and reached your goals and dreams. You are my role model.
    Suzie

  44. You’re amazing! Don’t go making me tear up again!!! 😉

    Love ya!

  45. Carrie,
    This is incredible what you are doing. I will need to get a photo and autograph from you.
    Warmest Regards,

    Rick

  46. Go Carrie! You are amazing.

  47. Roberto de Sousa

    Carrie,

    I work with your dad.
    Next time you see him……please give him your autograph, so he can bring it to me 🙂

    very inspirational 🙂

  48. Karin Schultz

    Congratulations – this is fantastic! Good luck with your next race

  49. Carrie – you are such an amazingly strong person….you are the poster child for “you can achieve whatever you want to”. Congratulations on this milestone!

  50. CSB: You are truly amazing and one of a kind! Keep at this – i love the site 🙂

  51. Susie Cranston

    Way to go Carrie Siu Bolt– I would buy stock in you if I could!!
    Love, The President of Your CA fan club!!

  52. So awesome!!!!! I am so happy for you!

  53. Oh hellz yeah! You rock.

    c

  54. Congrats on your recovery, and what a great goal! Good luck, and I’m happy to support you and your cause.
    -David

  55. run! Carrie, run!

  56. Excellent! Gun Carrie run!

  57. You are my inspiration!

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