Don't Say the D Word by Jenn Marie
A year ago, when I first began to be disabled by my dystonia I had no idea how common the word would become in my household. Although I had been diagnosed with a focal form of it nearly three years prior, my children and my family were not familiar with the word. I had a comfortable relationship with dystonia. I knew what it was, and that it only visited occasionally. In 2009, it decided to move in. I realized at that point that I was going to need to introduce it to my family. “Children, Mommy has dystonia. It makes me hurt, and makes it hard for me to use my arm and walk.” By March, the word had been said so much it was as if it had always been a part of our lives, and my children began to focus their anger and disappointment on it rather than me. “Mommy can we go to the park?” "No, sweety, I ....” “Have dystonia??? Ugh I hate your stupid dystonia!!” It was as if dystonia became an invisible person, always preventing fun in our house, and just being an overall Grinch. Halfway through the year, my children and I became fed up with this unwelcome house guest. We decided to let it know how unwelcome it actually was by ignoring it. We devised a plan of never saying its name in the hopes that it would go away. At first it seemed silly. My daughter would start the day by asking me how I was feeling. If I answered fine, she’d follow with: “…and how is your dystonia?” I quickly cut her off, giving her a disappointing look. “We don’t say that word in this house any more. It’s a bad word.” Thinking I was joking, she looked at me confused. “Then what should we call it?” she asked. I didn’t know what to tell her. What do you call dystonia: A huge pain in the butt? Annoyance? A neurological condition? Muscle spasms? As I drifted off, thinking of all the possible names for dystonia, my daughter’s eyes lit up. “I know! We’ll call it the D word!!”
Jennifer McKnight is a model, mother and advocate for Dystonia awareness. More about her can be found here.
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Need we say it? Articles included in this publication, drawn from a variety of sources, are provided for informational purposes and do not necessarily reflect the views of DLM. DLM does not provide medical advice. copyright Jennifer McKnight Dystonia Living 2009-2010 |