MARCH 22, 2011

Sisters, Dystonia, Love, Adoration, Learning to Accept

Today is my sister’s birthday.  As I chronicle and remember 5 years ago when I made the decision to have brain surgery, Suzie was a major factor.  We were the closest of the sisters…then Dystonia came in and attacked my body and then 3 years later literally destroyed my sister’s essence of who she was.  I tell my mom all the time you couldn’t have two more different children…I failed ballet class, Suzie held the fastest mile at age 10…Dystonia barely affected my laziness; Dystonia destroyed my sister’s hope of running a marathon.  Dystonia barely attacked my body; Dystonia ravaged Suzie’s.

Fast forward and Suzie opted for DBS 8 years that point still unclear how crazy the surgery was or the risks…it was a last resort for my little suz; she needed some form of relief..botox, medicines, none of them worked and more and more her life was one of a wheelchair…she opted to go for it and take the risk, why not?  She was already living a life in a wheelchair, could it get any worse.  She paved the way for many others…she became a walking billboard for why everyone should do DBS..she changes her battery every year, she has had at least 3-5 brain surgeries but would tell you DBS saved her life….

Here we are 8 years later, she just changed her battery last week and is celebrating her birthday….I asked her last week to nominate for the Medtronic Global Heroes program and this was her reason why I should be a Global Hero…To Suzie, you are my hero and a hero to many others, I love you!

“Carrie has always been someone that I looked up to not just because she is my big sister, but for her courage and strength in facing adversity and putting a positive spin on life. I watched Carrie show symptoms of dystonia and wonder why this was happening to her. Never did I think that 3 years later I would follow in her footsteps.

I underwent DBS before she did because my symptoms were a lot worse than hers. After 3 years of trying to convince her that deep brain stimulation would change her life, she finally took that leap of faith with the support of her doctors, friends, and family. Within months of getting “turned on” she had set a goal that she wanted to run a marathon as she had always dreamed of doing, but never thought it would happen. Her first half-marathon she ran for herself and her second half-marathon she ran for me. That was her version of a full marathon for 2009.

Carrie has inspired me to train to run/walk in my first 5k in December 2011. She has inspired and touched many around the world. She is not only my hero, but a hero to many that she has never seen or met. Her blog has shown many that Dystonia doesn’t define a person, but it makes you the person that you are and strive to be. She has also shown that you can do anything you put your mind and heart to.”

4 thoughts on “MARCH 22, 2011

  1. Thank you for this inspiring story. I am also a distance runner (of 14 years)who was diagnosed with dystonia 8 and a half years ago. It quickly became generalized. I had DBS almost 3 years ago. I felt and sometimes feel like my dreams were/are shot. I wanted to be a police officer and was training for a marathon when my symptoms began so suddenly. I still never competed in a marathon – just 5k races here and there. I hope someday not just to complete a marathon, but to qualify for Boston. It’s a longshot, but stories like these give me hope!

  2. Thank you for the inspiration Carrie and Suzie. I have cervical dystonia, and would like to do a “walk.” Botox has been working well for me for 5 years, but I still twist when I walk. I am trying to figure out how to train myself not to twist, but it seems the more I focus on it, the worse it becomes. Anyway, I am very happy that I found your blog, and look forward to future postings. Vickie

    1. Vickie,
      Thank you for your very kind words. As with everything we have conquered in life. Baby steps, one foot in front of the other. One day at a time and stay positive.

  3. Thank you for the tears of joy that you bring me each and every time I read your blog. We have a bond that no one will ever have. Love you to the moon and back,

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