At the bar, I worked up the courage to tell my friends about my recent diagnosis. They paused, asked what it meant and listened to my brief explanation.  “Oh”, Harry said. “I thought it had something to do with breaking up with Tony.”

This condition is, literally, a pain in the neck.  Although I’ve had it for years, I was only recently diagnosed by a specialist I was seeing for a related condition. When he said, “you have dystonia”, I got a sick feeling in the pit of my stomach, and reflexively replied “No, I don’t.” 

Months later, I’m looking forward to my first botox treatment, which will prevent those misfirings that cause my muscles to contract so painfully.  It’s a relatively rare condition, so there aren’t a lot of people I can commiserate with, the way I could with friends during the menopausal hot flash era.  I checked out the dystonia online support forum, and initially flinched at urgings to ‘keep a positive attitude’; worse were suggestions for new-age treatment approaches and even reliance on prayer. 

These days I’m especially grateful for those friends I don’t have to protect, the ones who know it sucks and will say so. Sometimes with a clever twist, like Harry, and sometimes by giving me permission to be honest, like Katie. “You know what your problem is? You don’t whine enough. You got to start whining more!”   

I know I need to learn to live with this, and I also know it could be worse.  It could, for example, be a pain in the ass. But it’s my brain. The same brain that makes me so smart and perceptive and creative also makes my hands shake, my neck twist, and my jaw clench. I feel somewhat like the stag in the Aesop’s Fable, whose prized antlers were, in the end, his greatest liability.

Movement disorders tend to frighten us, and why not?  They represent loss of control over our basic bodily functions.  As I learn more about dystonia and my related movement disorders I’m encountering parallel challenges. The first is acknowledging and accepting the impact of these disorders on my life. The second, as important as the first, is claiming those things over which I do have control, and making choices to improve the quality of my life.

I’m beginning to suspect, too, that along with the losses may come a greater sense of freedom.  It might be a relief not to have to maintain that persona of competence and independence.  It’s humbling – in a good way – to acknowledge that I need help and to allow other people to share the gifts they have to offer.

If you haven’t heard of it before, check out the Dystonia Medical Research Foundation.  They do a good job explaining the different types of dystonia, and promote and support important research work.  http://www.dystonia-foundation.org/

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