Dystonia: Being Blind Without Blindness by Karen Binette Rapport

Karen Binette Rapport  (on the right), age 60

How clearly I recall the morning I woke up after my fiftieth birthday and as I walked to the kitchen in my home, the walls got in the way.  Each day I spent my morning doing a business recap and my partners would ask, “Karen, are you tired??  Are we keeping you awake??”  I just sat there and replied something is wrong, I cannot keep my eyes open. They want to close…and so began the realization this problem was not going away.

I went to my eye doctor who had no clue what was wrong and he gave me eye drops and sent me on my way.  My internist was the next doctor to pass the buck.  As I tried to tell him my eyes would close while driving or golfing, he thought perhaps I was a bit crazy and prescribed antidepressants and said it was probably menopause.  

A month later as the symptoms were stronger and people kept asking if I had soap in my eyes and the antidepressants did not work, my doc sent me to a shrink to figure out what was wrong.  It was in her office where she finally agreed this was a neurological problem and I needed to find out what was wrong.  She was connected to the Mayo clinic in Arizona and finally a neurologist diagnosed me with Dystonia, specifically blepheraspasms. I guess the diagnosis made me feel better, although many docs tried many different medicines to control the twitching eye muscles.

I noticed that in large groups I fight more to keep my eyes open. I often had to hold friends arms crossing streets, as transitions are always tough.  But there are ways to control it a little, like when I knit; my head is down and the repetitive stitches keep my eyes open.  So in the last four years I have knit twenty-one blankets!!  In my knitting group there is another women with the same disorder and we often talk about the difficulty of living with a disability. Neither of us are able to drive far or be under time pressures.  I cannot enjoy movies or plays as my eyes clamp shut.

My eyes are a barometer of my comfort, as they may shut if I am around certain people. So it goes. I have had to adjust my life to compensate for what I can and can’t do.  Like when I speak, my eyes stay open, yet if I am spoken to they close.  

Presently I am developing a business with my sister: FEEL THE HUGS. It’s a positive approach to everyday life where we are passing on the connection of hugs when people cannot be there to physically give them. Since speaking is easy for me, I do speeches on the Power of Fundraising, while my sister does all the driving and parts of the business that are impossible for me.

People are amazed that with all I have overcome. I remain positive and we are trying to make the world better one hug at a time. There are pieces written on Dystonia…like let’s make it a dinosaur….but for me, I have gratitude that I can help others with Dystonia and prepare every ten weeks for the botox shots that help control my muscles from slamming shut.  

Perhaps sometime in the future, there may be a cure for this disorder. Until then I will remain a knitter, a swimmer and a speaker to encourage others to be part of the hug movement and embrace each day!

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 Copyright Ark Stories 2011


7 Comments (+add yours?)

  1. Harriet Slater
    Jul 25, 2011 @ 21:21:52

    I am so proud to call Karen Rapport my friend. I just want her to “feel the hugs” each and every day of her life! Harriet Slater


  2. frances quinn
    Jul 25, 2011 @ 22:10:54

    i like this article karen….as always you are the positive cheerleader in others and your own life. you are doing such a great job with “feel the hugs”. hugs, frances


  3. Becky Westcott
    Jul 25, 2011 @ 23:54:07

    Karen, I loved your article. I also have health issues that I deal with on a daily basis. The most important thing that I have found that I can do for myself is to be positive. I feel better and can face the world each day as long as I keep a smile on my face. FEEL THE HUGS…..Love It Karen, Becky Westcott


  4. didem aydogan
    Jul 25, 2011 @ 23:55:44

    it is a nice article..my father has alzeihmer and recently got a stoke.they are in rebabilitation klinik with m
    y mummy.it has been over 4 weeks and i often visit the klinik.they are all elderly and need to be cared…even a small good morning makes them happy.
    i believe miracles can happen and elderly young we need to make the most out of the day.

    bellow link is the kliniks web page ..


    it is very good klinik the cure is given well…

    lots of love
    didem aydogan story teller


  5. FeliceSolomon
    Jul 29, 2011 @ 14:40:51

    Very good article KAren, I had a student in high school that had dystonia. She had good days and very bad days. Severe headches were constant for her.


  6. Valerie Schuster
    Sep 21, 2011 @ 02:22:53

    Hi Karen, Thank you for sharing your story. It is inspiring and I truly feel the hugs. You are a wonderful, selfless and caring person and I am so glad I know you. I am inspired to overcome whatever challenge comes my way knowing the strength you exhibit each day in the face of adversity. xoxoxoxox and more hugs xxxxxxxxx,
    Val Schuster


  7. carolm26
    Nov 20, 2011 @ 15:15:20

    Karen is a wonderfully warm and caring person. I had no idea she had this “disability” as she has never mentioned it. Thank you Karen for sharing your story.


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