My Walking Twin

screen-shot-2013-11-04-at-8-58-17-pmMan has long pondered the question, “Are we alone?” Surely, in the immeasurable depths of the Universe, full of untold galaxies, there must be some planet that supports human life forms…

My thoughts about Dystonia followed a similar path. I couldn’t help but wonder if there was anyone out there like me, even if they inhabited a distant continent. Yes, I’ve met plenty of people with Dystonia but we all walk to the beat of our own drum – or neurotransmitter misfirings. Indeed, it’s easy to view the various types of Dystonia as different disorders. Even my compatriots with generalized Dystonia paint radically different pictures and respond disparately to treatment. Some lead lives I can’t fathom. Others express surprise I belong within the fold, making me feel guilty for all those years of frustration.

On the cusp of my 48th birthday, I stumbled upon “Run Carrie Run,” a blog written by a woman who embraced long distance running as her cause after DBS surgery straightened her stride. Curious about her “before” status, I encountered a veritable shocker, a stroll I knew intimately but only viewed in brief glimpses…in a mirror or store window.

There are simply no words to describe my reaction to my walking twin. Though separated by her successful surgical procedure, the sight of another human being with my manner of gait delivered a kick to my soul. I breathe the feel of that motion, how the foot gets snagged in the air, the bumps along the way. What an immeasurable relief to find another human being who once walked in my oddly navigated shoes.

Carrie’s surgical victory makes me wonder what’s available for me. While I’m no aspiring marathon runner, wouldn’t it be interesting to strap on the New Balance and execute a smooth 5k. Hey, I’d settle for a fluid walk to Fairway!

I encourage you to learn Carrie’s story at Run Carrie Run! While I stand in awe of her physical feats, Carrie’s greatest achievement is how she transformed adversity into a renewed sense of purpose. Carrie may have bid farewell to long distance running with a final half-marathon on Nov. 3, but I’ve no doubt she’ll create yet another new beginning in pursuit of passions she finds possible…

“My lasting message would be don’t ever give up, don’t fight the dystonia, accept it as your super power – your power to be different and be able to do different things that other able bodied people can’t.” Carrie Siu Butt

16 responses to “My Walking Twin


    Beautiful story. Thank you Pamela for sending such inspiration. Swimming is a great sport for me. Gravity limits me. Best to you, Patty

    • Hey Patty, Carrie’s running career is a testament to her determination and an example to us all about embracing new goals. Wonderful you’ve found swimming works for you, we each have our own unique abilities. -Pam-

  2. Pamela’
    That’s a message we can all learn from. I’m starting to cycle again, but nothing like I once did. But doing even a shadow of what was once life fulfilling endeavors gives us hope and pleasure that’s hard to find in D land.

    • Mike, We do what we can. Sometimes, I’m amazed at the distance I’m able to walk. Other days, I just don’t have it in me. I do love to bike, not that I find the opportunity all that often in Manhattan- except for the stationary bike in the gym, which just isn’t the same as a lovely outdoor cycle. -Pam-

  3. Pamela,
    A mirror image can be satisfying and hopeful. And it’s ok if it’s a carnival mirror. They always make me smile.

  4. Hi Pam
    Good thoughts. I always wonder if there is someone with the with the same problems as I have. I really never met someone dystonia. We should keep trying our best. Thanks.

    • Hi Donald, I didn’t meet anyone with Dystonia until my 20s. We’re a rare lot! Fortunately, the Internet is wonderful in bringing people together when in-person meetings are unavailable. Best to you as always. -Pam-

  5. Lovely post. Thought provoking as always.
    Best wishes

  6. Sounds amazing. I would love to run or even walk well again. I try to make the most of what I can still do.

  7. Your newsletter, gave me goose bumps.
    The energy many of us spend trying to disguise our dystonia…..including me.
    Is such a waste.
    I go to the gym 4 days a week. I work out until exhaustion. I have pretty much figured out, which muscles or movements, my Dystonia will allow.
    Most of the exercises, I do support my head and neck. One yank, in the wrong direction, BOOM.
    LOST 38 pounds, from 2x to m-l, from 48 waist to high 30s. I’m very careful.
    Those BOOMS last for a long.time.

    Pam, you are our Joan of Ark (spelling)

    • Lovely to hear from you. I spent many years looking to disguise my Dystonia, which was as futile as it was entirely impractical. Now, I just accept myself as a complete human being, Dystonia and all. Seems like you are on that same road. -Pamela-

  8. Pamela, your contribution is miraculous, as usual. And Carrie is as miraculous. An example of all Dystonia-affected person. It are also an example as one can handle with the illness.
    I wish you that your Blog still remains thus from big expression. Before all things always so merry.

    • Franz, Lovely to receive your comment, dear friend. Carrie has inspired people with her running while raising critical funds for research, her dedication to the cause will benefit so many people. I feel lucky to have learned her story and am proud to share it. Wishing you all the best life has to offer in 2014! -Pamela-

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