I’ll never understand why I always lose one sock from a pair doing laundry…or the mysterious black hole that swallows my keys when I need them. Among life’s eternal mysteries, here’s the one that puzzles me most: why does DBS therapy nail the monumental job of straightening my twisted gait but is helpless to quell the haphazard game of “twitch” my feet play when I lay in bed at night?
Is utter stillness too much to ask? Alas, my lower limbs still refuse to fully obey me. As for my natural writing arm, improvement is one painfully slow sentence at a time.
Don’t get me wrong, I’m the consummate DBS groupie. This surgery literally changed my life. I went from crawling along the street with my walker, sporting comfortable sneakers, to prancing down the avenue – nary a twist – in any shoe or heel I fancy! But at nighttime, Mr. Hyde morphs into twisty Dr. Jekyll. Some nights it’s the left foot, some nights it’s the right foot and calf, some nights I strain to distinguish left from right.
I look forward to the day when I can enjoy a relaxing recline in bed without my foot doing the twist!
In 2012, I shared my deepest, darkest phobias about my speech in a post titled “May I Have A Glass Of Water.” Notwithstanding 4+ years pounding out my anxieties on this site and finally conquering my self-consciousness over my gait – ironically at a time when my involuntary movements are fading away – I continue to entertain a disgruntling hyperawareness of every word I utter.
During conversation, I find myself a decidedly un-detached observer, appalled at the sounds that just emerged from my mouth despite my earnest efforts to enunciate. I’ll practice a word in isolation again and again only to mutilate it during conversational speech. Too many words continue to evade me and I’m starkly aware of the abundance of sounds I misform.
Since DBS, I’ve been operating on speed dial, sentences tumbling out faster than I can articulate them. In an effort to climb out of my ditch, I resort to conversational CPR, searching my inner thesaurus for synonyms to toss out to my confounded listener…or literally spelling out words l-e-t-t-e-r b-y l-e-t-t-e-r. Conversation presents a bout of oral gymnastics that leaves me exhausted.
Recently, I stood on line at Starbucks on a Saturday morning, all set to tackle a monumental challenge: ordering a Grande Decaf Soy Latte. The barista stared at me in confusion, then slipped a blank piece of paper and pen across the counter. Gulping down my pride, I dutifully wrote out an order I knew I’d never properly execute orally. Perhaps next time, I’ll opt for tea!
For those wondering how the prospect of two “awake” brain surgeries becomes palatable, let’s consider my relentless left foot, which seizes every small step as an opportunity to insist on an arduous detour. Walking takes on a whole new “twist” when the ever-present intervening destination is your next forward-intending movement. Even the shortest sojourn with my puppy becomes a true labor of love.
The upper echelons of the thermostat – even relatively moderate temperatures – stand amongst my triggers. At the onset of spring, exhaustion settles in for a multi-season stay, sentencing me to a summer of heavy breathing punctuated with plentiful naps. Ambulating ceases to be a means to an end and becomes an all-consuming focus, draining every ounce of my energy at the speed of light. As an added bonus, my tortured summer strolls invite back pain to settle in for an extended stay.
What seems like a lifelong experience with Dystonia began with a "mis-step" when I was 8-1/2. Dystonia may have staged a coup over certain body parts but my heart and soul remain firmly my own. I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health activist.