All through her life, Pamela Sloate has never backed away from a challenge. Raised in Scarsdale, NY, and currently residing in New York City, she has battled neurological movement disorder since age 8-1/2. Her particular form, Generalized Dystonia, manifests itself as involuntary movements in her arms and legs, throwing her gait off course and interfering with handwriting and various activities. She also manifests Dystonia in her speech.
Pamela is committed to spreading understanding of her rare disorder as well as lending support to others. She treasures her work as a blogger and Dystonia advocate and is a devoted volunteer with the Bachmann-Strauss Dystonia & Parkinson Foundation plus patient moderator of a Dystonia support group in New York City. Her blog, Chronicles Of A Dystonia Muse, presents her humorous twists on life with Dystonia as the center of her personal awareness campaign."Remember this: Living with a movement disorder, it’s not about seeing the glass as half empty or half full, we’re just trying not to tip it over!" -Chronicles Of A Dystonia Muse-
Life Before Dystonia?
Link:Dystonia Muse
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.
Link: Dystonia Muse
