Is that a storm I see or are you just bored? by Jenn Marie
I've learned more about my dystonia in the past year from my friends than I have from my personal experiences in the past 10 years. One major trick I've learned from one dystonic friend is how to recognize the beginning of a dystonic storm. Through the wonders of the Internet, I had the pleasure of meeting a woman who also has hemi-dystonia. The only difference is that hers is on the left side while mine is on the right. (Insert obvious joke here) In the past few months, we have spent multiple hours together talking about life, dystonia, and all other important things. But sometimes it's the things you don't talk about that say the most. During one of my visits to my friend’s house, I saw what the beginning of a dystonic storm looked like. After spending a whole day of sightseeing, the two of us took the metro back to my car. Up until then we were high energy: continuously talking, laughing and moving quite quickly around the sights. We caught the last train out of the city. It was summer, so it wasn’t that dark yet. When the train arrived, the two of us limped onto public transportation and quietly sat down. Thankfully, it wasn’t crowded. As soon as I sat down I felt my body completely relax. Then almost immediately afterwards, I felt my right arm began to ache and pull. I fought it. Then the sensation traveled down the right side of my body, into my leg and down to my foot. I began to panic. I did not want to spasm on the train! I had my cane, but I still needed to drive. I decided to take my mind off of me and looked at my friend, but she was looking off. Her body looked tense and her eyes were glazed over. It was as if she was intently focusing and fighting something at the same time. She wasn’t moving. Her eyes and body were still. Only her chest was softly rising from breathing. She was almost in a trance like she was deep in thought. I continued to stare at her for a few moments then I finally broke the silence. “Are you having a storm?” I asked. “Yes” she replied. "I knew because you look like how I feel.” I added. And just like that, the whole mood had changed. We had no more to say to each other. I went back to focusing all of my brain power on fighting the pulling and I assume she did the same. There was no room to do any other type of brain activity except fight the pulling. We had the same goal: If we could just make it home, then we could allow our half bodies to do whatever it is they wanted! We were successful! I made it to her house and slept a full 10 hours before I got back on the road. Thinking back, that moment brought a sense of sadness and relief. There was relief that I truly understood what my friend was feeling, but there was also sadness that we were not invincible.
Jennifer McKnight is a model, mother and advocate for Dystonia awareness. More about her can be found here. |
copyright Jennifer McKnight Dystonia Living 2009 |