(Aubrey and Her new Husband)
A typical 11-year-old girl, I’m riding shotgun in my mom’s minivan, resting my bare feet on the dashboard that I can barely reach with my pre-growth-spurt legs. I’m into soccer, movies, the mall, and wanting to be a teenager. My teeth are preparing for braces and my attitude is preparing for the regular back-talk that teenage girls dish out to their parents on a regular basis. Of course, I like to think I’m too sweet for that.My mom looks over and notices my toes are sticking straight up, perpendicular to the angle of my foot.
“Aubrey, your toes are standing up,” she noted.
“Yep. They are. That’s weird, I can’t move them,” I responded.
“Well can you try?” she asked with a more concerned look.
“I am trying.”
We spent the next 24 months visiting eight different doctors, trying to get a diagnosis. It wasn’t Hammer Toes, like the first doctor thought. The strange stiffness that grew through my feet and legs was called Dystonia …
I wasn’t soaked in worry with the odd discovery of my toes at first. Maybe because I was 11 years old and didn’t understand the magnitude of the situation. But as more and more doctors excused themselves from my visits to consult their medical journals and colleagues, I realized that my condition was unique. Heck, they’re doctors. Like most of America, I was raised to believe that they know everything! I was starting to doubt if I would ever an answer as to what was wrong.
Eventually, the spasms became more frequent as they spread up my leg. By the time I started high school, the pain of my spasms was so severe that I had to remove myself from all high school sports, which killed my soccer-loving soul. I could barely write. And some days I couldn’t even walk. My disorder had spread like wildfire and I still had no answers. The doctors ran a battery of tests to figure out what was wrong with me.
Finally, the answers came.
Dr. Vicki Wheelock, the eighth doctor to take a stab at diagnosing the stabbing pain in my limbs, asked me to draw a spiral on a piece of paper. She instantly diagnosed my disorder based on my inability to draw a spiral. It’s a degenerative neurological disorder called Dystonia.
Right away I started researching Dystonia to see if I could ever get back to playing sports or becoming a normal teenager again. Much to my dismay, the word “degenerative” only meant that it was going to get worse over time. There are certain procedures that can be done to help alleviate the symptoms, but there is no cure for Dystonia.
No cure. It was like a death sentence. I would never perform simple tasks like drawing a spiral ever again. The thought of that loss threw me into a major depression for a few years after the diagnosis. I found myself coping with my pain by overusing my pain medication. I was living a life that I wasn’t proud of and I eventually hit rock bottom. I had to make a choice: Was I going to let Dystonia ruin the rest of my life? No.
I finally ditched the depression and started helping myself, bettering myself. My personal and physical strength grew in ways that most teenagers never get to experience. I matured quickly. I soon outgrew the need to play high school soccer and I thought less about being the popular girl. I only thought about how to manage the spasms and pain. I found strength in attending classes that focused on pain medication alternatives. Instead of dwelling on the pain, I focused on beating the pain.
I’m 22 years old now and Dystonia still affects my life daily. My walking is slower than ever. My handwriting is so illegible that I rely on a computer for writing. The pain remains constant, as does my drive to rule Dystonia and not let it rule me.
My life changed the day I had that first foot spasm in the car, but I wouldn’t trade the knowledge, the pain, the spasms, or the Dystonia for anything. It enabled me to find strength in my weaknesses. It also enabled me to help others who might struggle, which is exactly why I am getting my story out there. I want people to know more about Dystonia. I want them to get involved in helping us find a cure.
I know that Dystonia is rare, but so are the good people willing to help.
Become a Dystonia Supporter – a “Dystoner” – today and help raise awareness and funds for research.
