When Dystonia Put Someone Else in Control of My Body

I have a movement disorder called dystonia. I didn’t always have it. Gradually it started to take over my whole body: generalized dystonia. It started when I was in my 40s and no one knows why. At first it appeared as a slowing of movement. I couldn’t keep up with my swim buddies. I was so tired after swimming, my body didn’t recover in time for the next practice. I stopped swimming. Then working at a desk became so draining that I was too tired to make dinner when I got home. My boss let me try to work from home when I was able to, but that was physically and mentally too draining. I had to quit my job.

Then my real moves started. I had a hard time coordinating my legs to walk. I couldn’t figure out how to swing my legs forward in a straight line anymore. My torso slowly twisted and bent as I sat or stood. My head would slowly turn down and toward my shoulder. I’d turn my head back to center, only for the slow twisting to start all over again. I never knew what move would be next. I only knew I couldn’t control it and it wouldn’t stop. It felt like someone was living with me inside my body and deciding for me what part of my body would be in motion.

I became housebound with hours and hours to myself, so I got to know this person inside of me. She was my internal roommate, and rather a trickster. I’d try to watch TV, but she’d play a trick by making my head turn away. When I’d try to get a spoon to my mouth with milk and cereal in it, she’d see if she could make me miss my mouth. I really had to laugh because she was just having fun with me. I learned to accept her as she was, for what she wanted to do. I was the brains, and she was the body. After I got to know her, we got along and became friends. I didn’t feel so alone on my journey. Going out and socializing was far too draining given my limited energy. It was a long road for three years by myself trying to find answers and spending so much time on my own. I even gave up looking for answers. I was glad for some company.

A doctor told me I must stay active, so I joined a center for wellness where I was referred to a physical therapist. She took a deep interest in my moves and referred me to a neurologist she thought could help me. I made an appointment with the neurologist, but I was on my guard, as previous visits had resulted in me being looked at as a psychological case. This doctor asked me to demonstrate my moves. I told him he’d see the full case if I had something to push down the hall. He gave me a wheelchair to push and my roommate took over. I could barely hang on to the handles and move my legs to walk. We hobbled down the hall, panting and out of breath by the end of it. He saw enough to know right away what was wrong and how to go about treating it. For once my condition wasn’t deemed psychological. For the first time, I was treated properly.

He ultimately found the medicine that has restored me to “normal” movements, when I’m not stressed. A single medication has restored me. Most people don’t see my movement disorder. I’m able to swim again. I can push a cart. I can swing my legs to walk. I can attend social gatherings. I am not able to work and have to be careful about managing stress, but I have found other riches in volunteering when I am able.

I am grateful for my new life every day, even though I miss my roommate. We were friends, and I feel as if she had to go to sleep for a long time for my sake. Sometimes I wonder: Who is the real me? Is the real me the one who has the twisting, writhing moves, the person no one sees? Or is the real me the one who moves like other people but needs medication to do so?

My life took a detour I could never have planned or foreseen. It’s completely new since my movement disorder started. It has taught me patience and acceptance in bigger doses than I thought I could handle. I am happy for the moves I now have. Any day I can swim is a good day indeed!

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.