As we join in the #DystoniaAwareness movement to make September the official month to support the Dystonia community, we will be posting blog posts from the Dystonia Muse herself, Pamela Sloate. Here’s a look at Pamela’s life prior to her Dystonia diagnosis.
Individuals who encounter health issues later in life tend to reference “before” and “after,” a distinct turning point that irrevocably rocked their world. I can’t remember time before Dystonia. All my experiences have been informed by this condition. I’d welcome the opportunity to meet myself absent Dystonia, me minus the obsessive need to assert control in compensation for uncivilized muscles that refuse to be tamed. I don’t carry a mental list of activities I “miss,” just ones I imagine and my own unique take on the everyday.
One girl told me how much she missed skiing. Based on my singular experience, can’t say I’m sacrificing much. My foot, none to partial to enforced confinement, had its own opinion about staying in that boot. I found the view from the lift engaging until my brother slathered me with tales of fallen horror. Reaching the bottom waxed problematic but I swiftly mastered the art of falling and Dystonia helped my skis form an inverted “V” to slow the pace. Didn’t bother with a second run, the hot chocolate bar held more appeal. I’ll say this, I looked rather svelte in my snowsuit and things weren’t all bad considering the miracle of getting my feet into those boots and myself down the slope.
The sport of movement disorder is an alternate reality of the same world. We’re swept along on a moving sidewalk that doesn’t stop, tiny little “events” filling our days. Whatever the age of onset, I surmise the physical ease of a prior existence becomes blurry for anyone as the years pass, like an inability to remember life before becoming a parent or falling in love. I walked and wrote correctly for my first 8-1/2 years and spoke “more acceptably” for my first 20. These memories entirely evade me.
Chasing lost yesterdays is no way to build our todays. We must strive for the happiness that’s within our grasp and understand that no human being exists without limits. I find tremendous beauty in the hope, optimism, and insight of those who walk the cracks in the pavement and compose their lives into unique poems.
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