The Little Things That Aren't So Little Because of Dystonia
Living with a rare neurological disorder, there’s so much I wish people knew, starting with the word “dystonia,” a term that poses a mystery to the majority of the population. How wonderful it would be — not to mention a weight off my shoulders — if dystonia elicited immediate recognition rather than a blank stare.
Required to serve as my own spokesperson, I’m forever educating people about my movement disorder. A few years ago, I began to share the twists and turns my life navigates by launching a blog. But I’ll confess, when I leave the online space, I don’t always have the energy or the inclination to deliver a full-fledged dystonia lesson. Occasionally, I take the “easy way out” and succinctly explain dystonia as a disease akin to Parkinson’s. This hardly does dystonia justice.
Then there was the time I found myself knee-deep in “damage control” after someone (namely a member of the opposite sex I met on an online dating site) fast-tracked to Google to gain an understanding of my condition. Dystonia’s medical technicalities stand stark and foreboding in blatant disregard of my desire to resolve as a human being. Fortunately, I pack the tenacity to make my own, more palatable explanation.
Dystonia is not who I am, but at the same, time it insidiously inserts itself into my daily life. If people only knew the victories — large and small — I score every day: the not-so-simple accomplishment of walking my puppy, tackling a flight of stairs in the subway, pronouncing certain words, hanging onto a positive attitude, unearthing the humor in my struggles.
Take something basic like shopping for shoes, which becomes not so basic when your feet are neurologically programmed to behave like temperamental children resisting restriction. Finding footwear that doesn’t further impede my laborious gait presents quite the challenge. Caprice determines which shoes work for me, and I’m inclined to stick with tried and true favorites in defiance of the latest fashions. Out of necessity, I’m practical…I can only dream about wearing heels.
With a myriad of extra efforts and complications dotting my landscape, how I wish the world could see all the moments I master. So often, life is about the little things and dystonia is no exception.
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.
Pamela Sloate is a health activist who is involved in an array of dystonia awareness efforts. She moderates a patient support group, advocates for the dystonia community and advances fundraising. She holds degrees from Brown University and NYU School of Law, and her career spans law, marketing and non-profit administration. Pamela has lived with generalized dystonia for more than 40 years. She can be found blogging about life with dystonia at www.dystoniamuse.com.
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