The Big Downhill Slide

 

            I went from a pretty normal girl to someone, or something, I don’t even remember in a matter of months. Mom told me I started walking on crutches and by the end of a month, I couldn’t even manage that. I was in a wheelchair.

            Okay. I am getting ahead of myself here. Breath. And explain dystonia first.

            Dystonia is a neuromuscular disorder that can affect one or many parts of the body. It is characterized by uncontrolled movements. These movements can be very painful and cause harm to the body without your consent.

When you reach for a glass, you don’t think about it, but your body does: fingers extend, arm moves smoothly, fingers flex around the glass, arm bends back to you, muscles working together effortlessly. All that movement taking place and we are unaware of it. Wow! We were created so perfectly and beautifully until something goes wrong.

For some dystonia patients reaching for a glass is impossible. Something happens, or is missing (in my case Torsin A), in the brain so that the signals get scrambled, and we cannot control even the smallest task. Also, in my case, I do the things that will hurt me instead of helping me. Always remember the word uncontrolled. This is key to what I’m about to tell you.

I remember being at my aunt’s home and was sitting by a fireplace. Within a few minutes, I had turned the swivel chair so that I was facing the flames and the wall. I somehow got my foot on the wall and my mother had a difficult time getting me “unstuck.” I was literally between the wall and the chair and couldn’t move! Normally a person could just bend the knee and lower the leg. I couldn’t. I was stuck.

The worst of it was when I screamed, “bend me!” and Mom would use her four limbs to bend my four limbs, which took some effort. I was only a tiny thing, but my muscles were very, very strong. Then I would cry, “straighten me,” and Mom would move off me and let my limbs straighten out. And a minute later, the whole process would begin again.

            This was all within the first year of my illness.