The Trigger for My Dystonia Symptoms

One day after band practice, my best friend, Sally, told me to hop on the hood of her car, and she would give me a ride to the band hall. She knew I loved to do this even though my parents had forbidden it. I hopped on, without a thought, holding onto my sax with both hands. Unfortunately, Sally hit the gas a little harder than I expected. Instead of grabbing the hood I held onto my beloved saxophone The next thing I knew I awoke in the emergency room with a doctor cutting my clothes off. My doctor had a very serious expression on his face when he told me he was glad I was waking up. He said I had been unconscious for almost an hour. My mind was fuzzy, but I knew I was going to be in trouble with my father.

I had no idea that I had much more serious trouble ahead that would impact my life as an adult.

Uneven Shoulders

I was in the hospital for a few days while they continued to pick out pieces of gravel from my forehead and knees, after I had fallen off the hood of Sally's car. My parents were just glad that I was alive, so I didn't hear any angry admonishments while in the hospital.

Once I was released I headed for the school and the band hall. My friends were surprised to see me back at school so soon. Someone mentioned a convulsion; a friend teased me about ruining our band director's jacket. What? It seems I was the last to know that I had a seizure after falling from the car, hitting my head on the pavement, bleeding all over our band director's jacket, while everyone waited for the ambulance to arrive. I had no idea I had caused such a spectacle! Since I was 16, I didn't worry about it too much, except for the embarrassment, so I decided to quit discussing it with anyone.

It wasn't until I was about 21 that someone pointed out that one of my shoulders was higher than the other. I didn't think that was very important since it didn't stop me from doing anything I wanted to do. When I was about 32, I started having pain in that shoulder that was higher than the other. My husband was massage it, pound it, push as hard as he could with his thumbs, and nothing would make that rock hard muscle relax. I was always rather high-strung, so we thought it was caused by that. I just needed to quit worrying about things so much and practice my Lamaze breathing.

When I was 40 years old my head started rotating on it's own. It
was the strangest sensation! I could be looking right in front of me at an object or person, and slowly my head would turn to the right. I had gone through a divorce, remarried and was raising four children, while trying to work enough to feed them. The rotation was either: a. mental illness b. stress c. devil possession. I thought a lot about "The Exorcist" during those early days. I didn't dare tell anyone this was happening to me. Why? Read a, b and c. I learned to hold my checkbook on my cheek to keep my head from turning or just my hand. I thought I concealed it rather well. The pain in my shoulder grew stronger, and I noticed it had a large "bump" appearance now. Great! Now, I was going to look like the Hunchback of Notre Dame AND what's-her-name from "The Exorcist!"