|Williamsport Sun-Gazette - April 9, 2013|
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!