When I read the January, 2006 issue of the ST Dystonia magazine, I just had to write an article about two courageous people who were in this particular issue. Their names are Sue Glass and Brian Stephenson.
I will start off with Sue first. When I met Sue for the first time in Toledo, Ohio she was a very charming woman who had some pretty serious head tremors as we talked to each other.
She had told me that her husband of several years had left her because he couldn't stand living anymore with someone who had ST.
She also told me that her daughter had been diagnosed with ST as well.
These two devastating events would have been enough to make anyone quit and give up totally on life.
A year later at the Richmond symposium, Sue gave an inspiring speech in front of everyone how she was not going to let ST ruin her life. She was fighting back. As she stood up there telling her story, her tremors were gone. She was a completely different person - more confident and self-reliant.
When I saw her picture on the cover of the magazine with her arms outstretched and a great big wonderful smile on her face, I felt a warm feeling inside. Sue still has ST but she's decided to live a happy life instead of letting ST take her down. What a remarkable woman.
Next I want to talk about Brian Stephenson.
When I first met Brian in Richmond in 1999 he was a very young man with severe ST and dysphonia. I felt so sorry for this young man and thought to myself, this poor guy will never have any quality of life. If he's this way as a teenager, what will life be like for him when he hits his thirties and forties?
A few years later, I read how Brian has married, started a family and is now running - not 5 or 10 K runs but marathons!
What a remarkable story this is. I also read how he said that he had a hip injury occur during the race, but he wasn't going to let it stop him from finishing the race. Way to go, Brian, keep it up! He had the DBS surgery and he's living proof that a person can do anything they put their mind to.
I also have ST and was told by my neurologist to just live with it and live life half crippled up. I decided not to let this happen. I have used physical therapy to get better, plus I exercise and try to challenge myself physically when I work out.
When I go snowshoeing in the wintertime, I go out for at least 2½ to 3 hours at a time. I go through some rough terrain. At times I go through the swamps, go under the branches of some trees, and have to step over some big trees that have fallen down to get to a spot where I truly enjoy a scene that's very peaceful and serene. But that's what makes it so special is the work that I go through to get there. When I get to this spot, I look up into the sky through the tall pine trees and just take all of the beauty in. I am so grateful that I can hold my head up to look through the trees again. I had a very bad case of anterocollis. I still have some tremors but I've found a deeper appreciation for the things that I took for granted before I came down with ST.
If any of you have a story of personal triumph of your life with ST, please share it with us. Don't feel as though you are bragging. We all need inspiration as we struggle, but we can't ever give up. Just look at Sue and Brian with their wonderful heartwarming stories. They are true heroes in my eyes.
Rick Clements
Tomahawk, WI
