Some of us are stubborn, even when our own bodies become our obstacles and there is no end to this obstacle…we are stubborn.
My stubbornness has almost become an obsession with research on everything and everything dystonia. My searches include: famous people with dystonia, athletes with dystonia, martial arts and dystonia, the benefits of yoga on dystonia, dystonia and new break throughs, dystonia awareness campaigns and so on.
There are dystonia support groups, petitions for more funding and awareness about dystonia, exercises good for dystonia, new non-medicated ways of helping patients with dystonia, YouTube video after video of people showing clips of what it’s like to live with dystonia. Some of these videos are heartbreaking, others are somehow refreshing to me to know that others have many of the similar symptoms that I do, not because I want them to feel the struggle, but because it proves this is not in my head.
This rare condition is actually quite common, but it seems the only ones who know about it are those of us who have to live with it and our loved ones who help us cope with it the best they can.
Yesterday, I came across an article of a 46 year old runner who wasn’t going to let dystonia keep her from her love for running, so she learned to run backwards. She runs backwards to keep doing what she loves. That’s awesome! I love to run. Dystonia hasn’t affected my run yet other than that I haven’t been able to in a long time because of the constant pain and throbbing in my left hip, but on my good days maybe I can go for a jog and see how it goes. If I struggle, maybe I can run backwards. I already know that walking backwards helps when my limbs lock. I learned this in my martial arts class, during forms. Maybe I can do forms backwards. That would be interesting to see.
I read about new therapy too, physical therapy doctors are using to help rewire/retrain the brain to help reduce dystonia symptoms. It is amazing how much information is out there. Why don’t people know more about this when it is such a common rare disorder.
I think every five minutes I get to learn more about it I take it in and relish in the new knowledge. How can this help me? How can I help others with it? A big part of it is the hope that if others can figure out ways to get around dystonia or in some sense work with it to keep doing what they love to do, why in the world can’t I.
I have hope just when I was being to lose hope that I would never get my black belt after years of hard work and practice and so very close to it. Just when I was growing frightened that dystonia could make my life impossible at work, at home, in public, in the rain, on vacation, that my kids would watch me struggle and fear for my safety I am no longer frightened. I know it is going to be a tough road, but I can do this. Its exciting just to think about how creative I’m going to have to be with this. Maybe I’m my own first OT patient.
I know this for sure. Dystonia has taught me to appreciate my body a whole lot more for what it is and be grateful for what it can do on any given day. It has taught me to be more compassionate and respectful of others for living with movement disorders.
The more I know about dystonia the easier it is to deal with it, the more I’d love to help someone else with it and let them know “Hey, its okay. Don’t lose hope. You just have to figure it out and learn to work with it”. And then I will show them the articles and videos and community groups of dystonians working together to live happy functional lives despite dystonia, perhaps because of it.