Tuesday, April 9, 2013

Fear can help tell a great story!

Williamsport Sun-Gazette - April 9, 2013
I want to start this blog out by saying how proud I am of Karen Wright! What she did, allowing a photographer to take her picture and allowing a journalist to freely write an article about her Dystonia, is a scary thing that she forged through with bravery and class! I want to also, quickly, say my thanks to the Williamsport Sun-Gazette in not just writing an article about Dystonia, but for making it a bold, front page article, that will surely get some attention! Mike Reuther, the journalist who wrote the article, beautifully and accurately portrayed Dystonia in a simple and understandable light while still telling Karen's story and getting awareness out there for people who seemingly suffer alone with this disorder.

But the main reason for my writing this blog is to shed light to those who don't suffer, yet watch loved ones suffer, on the deep seeded fear that settles into so many of those who suffer with Dystonia. There is a fear that results from the multiple mis-diagnosis, insulting doctors, in-compassionate co-workers, un-educated medical personnel, and cruel public opinion of people who are 'different'. This fear is real and can be debilitating to those who allow it to settle into their hearts and minds. I think, too, that this fear is part of the reason that Dystonia is so vastly mis-understood or not known about at all!

BUT this fear is where those of us who are able and who have a love and passion for those who suffer should find ourselves called to defend and educate as many as we can on the disorder. They don't have to suffer alone or in silence or in shame, and we should encourage them to tell their story; we should hold their hand while they tell their story; we should encourage others to read their story; and, we should uplift them after telling their story, and encourage them to DO IT AGAIN!

Let us, also, though, remember to consider people with Dystonia with a compassion that, we who don't suffer, can't understand but yet muster up this compassion anyway. As often as we walk with these loved ones to the doctors offices, listening to diagnosis, hold their hands during treatments, and cry at the unfortunate nature of the disorder, we still do NOT know how they feel! I have no idea how my dad, Karen, Mrs. Daisy, Pamela, Carrie, and so many others that I have grown to appreciate, care for, and respect, feel! I have no idea what they are going through and what it is like to have the plethora of emotion that is churning around inside of them. But what I do know is this: I have been given an opportunity to help tell their story! I have been given the ability to be able to travel without pain, speak without difficulty, type without spasms, and live without Dystonia to be able to help the tell the story of Dystonia to the world!

Tell the story of Dystonia - even if it isn't your story - and help shed some light on this disorder and give confidence to those who suffer to tell their own story and help someone else!


  1. Rebecca,

    This website and the efforts you are undertaking to tell our story hold so much potential. What those of us with Dystonia need as much as prompt diagnosis and informed medical care is to be seen and accepted as ordinary human beings, a key reason I started my blog. Here you are, not only introducing your father's dystonia from the perspective of a family member, but introducing your father the person from the perspective of a daughter, an invaluable human element. To build compassion, we need tell our stories as human stories, not merely medical ones, and we need tell them over and over again to every imaginable audience, making them, as you are, stories worth repeating. -Pamela-

  2. I just discovered your blog and am eager to give it a read through!! I too blog about dystonia over at www.questofthenocturnalbaker.blogspot.com. Just wanted to introduce myself. Now I am off to read some of your post!

  3. I saw the struggles your daddy faced before he retired and how hard he fought retiring. He is a man to be admired for all that he has been through and continues to battle each and every day. I honestly and truly admire you and your family for all you do. Without you, the awareness and knowledge would not be available for others. Thank you from the bottom of my heart. Please keep me posted.