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!
Hollywood’s leading ladies have nothing on me and my starring role in a “surgical trilogy” featuring a brilliant neurosurgeon, his drill, cutting-edge guidance technology, and two electrodes taking a slip into my brain for an ongoing adventure of electrical proportion. Best supporting actor goes to the strong-armed “villain” in this medi-drama, the metal vise that fiercely immobilized me every step of the way. The hero, my Mount Sinai neurosurgeon, cool as a cucumber, assumed command over his troops in the OR. His team took no prisoners, bolting me to the operating table to set the stage for the drilling…but with my neurosurgeon controlling the scene, this dystonia damsel was hardly “in distress!” As for the “awake” part, our tete a tete during surgery was largely surreal as my “leading man” filled my field of vision during our big dramatic moment and I lacked a bird’s-eye view of the surgical scene. I’ve absolutely no recollection of the drilling.
Having considered – and rejected – DBS oh so long ago, I needed a pinch to jolt me into reality as we traipsed about the hospital – vise securely in place – on our way to a pre-op CT-scan. You’ll find my verdict – since overturned – on this site in the article “Promises, Promises.”
With DBS, the waiting is the hard part. Until that all-important first procedure set a bar on my expectations, my overactive imagination embarked on a joy ride over the prospect of two “awake” brain surgeries in the span of one month. For those Dystonia warriors considering DBS, rest assured that the “idea” of these procedures is far more daunting than their reality – especially that fearsome metal vise. After the numbing injections, it’s smooth sailing ahead. If you can handle life with dystonia, you’ve got DBS!
Once the surgeries are completed, this surgical thriller morphs into a tale of suspense. Stay tuned for my BIG MOVIE ENDING, dramatically revealed in 3 to 6 months…
My amazing Mount Sinai neurosurgeon is second to none!
Posted in Health, Life
Tagged Activa neurostimulator, Anxiety, DBS, DBS therapy, Deep brain stimulation, Dystonia, Involuntary movement, Medtronic, Medtronic DBS Therapy, Mount Sinai Hospital, Movement disorder, Neurological disorder, Neurosurgeon, Neurosurgery
A dashing speech therapist broke my heart. No, it wasn’t a torrid romance ending in tragedy but his sage words of advice: conversational speech is the last dam to break. Worse still, the coveted prize we were chasing was “communication” not “perfection.”
I’m a self-admitted practicing perfectionist. “Good enough” is never good enough when my life’s work is a perpetual pursuit of Eden. I aim to scale mountains and then chastise myself for the slightest blunder. So, surprise, surprise, I embarked on speech therapy with abundant determination to nail that bull’s-eye. In my estimation, I’d practice, practice, practice until my speech issued perfect, perfect perfect. While I might not scale tall buildings in a single bound, I’d surely conquer them with a rigorous daily regimen. Then reality hit. Those darn “Ks” and “Gs” continued to pose a battle, median “Ds” and “Ts” relentlessly evaded me…and shall we discuss my lip sounds? Further, if I reduced my life to working on my speech when would I actually use it? I needed to modify the recipe.
Most people coast through sentences blissfully unaware of the verbal gymnastics they perform with every word. The tongue effortlessly careens from venue to venue in fluid motion while the lips execute deceptively simple maneuvers. The veritable clockwork programmed by our brains and slickly engineered by our orofacial muscles enables us to focus on the dynamics of conversation rather than the specifics of location. As if on autopilot, we register our speed, then sit back and relax as the flight conveniently navigates itself.
Until I began speech therapy, I pounded out my speech in appalled ignorance of the mechanisms of my physiological inefficiencies. I’d no idea of the muscular precision required to orchestrate individual sounds and master conversational flow. Further, little did I know co-articulation demands we pronounce our sounds in units – in other words, our forward-thinking brains work a step ahead of us – granting undue influence to the banes of my existence. Certain sounds manageable in isolation “malform” when coupled with anticipated sounds looming in my future.
Focusing on my wealth of articulatory challenges simultaneously – a feat of multi-tasking – poses overwhelming, particularly if I seek to partake in productive listening. Adjusting my lofty aspirations, I slow the party down and divert due attention to the dynamics of the discussion. After all, the turtle bested the hare with a slow and steady pace.
Posted in Life
Tagged Anxiety, Aphasia, Dysarthria, Dyskinesia, Dystonia, Involuntary movement, Language, Neurological disorder, Speech impairment, Speech impediment, Speech therapy
Now this is an interesting exercise. Why don’t you give it a shot? Here’s the beginning of my list of challenging “multi-tasks:”
- Walking and talking on the phone.
- Maintaining my balance going down steps.
- Playing Twister. Won’t happen again…last game I tore my meniscus!
- Laying inside an MRI machine and holding still.
- Articulating individual words while speaking in sentences.
- Any exercise that involves my legs and another body part.
What are your fiercest multi-tasks?
Whoever said the way to a man’s heart is through his stomach got things wrong: it’s through his children.
I gave my heart to an amazing guy and he gave me his weekends with his kids. I climbed mountains to make an impression, taking untold abuse at the indoor playground in McDonald’s, bribing them with cookies and fading into an insignificant comma to make it all about them. My efforts didn’t do much to enhance my position on their popularity meter. Worse, I lived in constant trepidation of an insensitive observation about my Dystonia in a jarring reawakening of my childhood phobias. I wasn’t disappointed. While I can usually count on the politeness of adults, kids nose their way into my imperfections with a stream-of-consciousness bluntness: “You talk like your mouth’s full of marbles;” “I can’t understand anything you say…”
Packing years of therapy under my belt, I know these to be the ignorant squeals of piglets but my insistent inner child still longs for approval and dreads the punch packed by the uncensored honesty of youth. Want to know if that dress REALLY makes you look fat? Ask the kid next door!
If you inhabit the NMDW (Non Movement Disorder World), please consider what “having a bad day” means to you before continuing.
For those low on imagination: It’s rush hour, you’re running late, 110 degrees in the subway, the lines at the service machines snake all the way to the turnstile. Thank god you remembered your metro card. Scan: “CARD EMPTY.” OK, you brave the line, reload, hear the express train pulling into the station, hit the steps 2 at a time only to reach the platform as the doors close. The next train takes 20 minutes to arrive and promptly gets stuck between stations. Then the AC conks and you’re mired in a collective sticky sweat. When was that meeting? We’d all agree you’re having a “bad day.”
My “bad day” begins before I encounter the sweltering heat in the station or the deficit on my card. Instead, it starts when I’m on the verge of hyperventilation half a block into my 4-block marathon. By the time I reach the subway, I yearn for a nap – a seat would be nice. But I must stand at the top of the stairs, waiting for the crowd to clear and the guy handing out free Metros to move aside so I can grab the railing to avoid falling on my face. On “bad days,” I find myself at war with a severely flexing foot exercising it’s own agenda and mysterious muscles in my legs jarring me with attitude, every step a precarious leap of faith.
Dystonia is a fickle female whose mood banks on stress, anxiety or nothing at all. I take my moments as they greet me, understanding “good” and “bad” are relative events. The pain-in-the-neck days shine a bright light of perspective, cementing my appreciation of the better ones.
Feel free to post your rendition of “Having A Bad Day.” All stories welcome!
The online dating roller coaster can lurch chills down the spine of the most seasoned Lolita, which I most certainly am not. Throwing my profile into the proverbial haystack hoping to find the needle of my dreams is an exercise of patience on the edge of insanity. Typically, my inbox is populated with suitors I’ll categorize as spam.
As you can see from this blog, I recently joined the school of “Laying It On The Line.” I aspire to shout my Dystonia from every street corner and rooftop…and also on my JDate public offering. While awaiting approval of a new essay featuring You Know Who, I broached my approach with friends, who stood united in their negative feedback. I guess the online dating marketplace isn’t ready for full disease disclosure, which would more than separate the princes from the frogs. Grudgingly, I concede sharing health details is best practiced face to face after we’ve discerned a genuine mutual interest.
On the rare occasions when I stumble upon a prospective Mr. Right, I harness my inclination to unload my Dystonia during our getting to know you minutia. Part of me is thrilled to live such a fanciful existence. No speaking, no walking, if only we could flip cyber reality with everyday life! Eden doesn’t last for long. After a few paragraphs of swordplay, most men are eager to leap to the phone and hear my voice, producing an explosion of panic that’s a 50 lb. rock at the pit of my stomach. Used to flipping cushy sentences in emails and IMs, telephone talk is a venture into an uncomfortable world.
When required to fast forward the inevitable, I prefer making the call myself, allowing the illusion of control as I improve my speech in insignificant increments with a ridiculous routine of nasal hydration, environmental manipulation, vocal preparation and lactose deprivation. Invariably, I reach their voicemail. Shouldn’t have sacrificed that latte at Starbucks.
All this self-created craziness is wrought with irony. Even when I bring up my speech, I’m sharing the unavoidably obvious. My practical purpose is to halt arbitrary conclusions in their tracks and interpose the stamp of my official record. Let’s face reality. If I don’t empower telephone beaux to serenade me with a choral refrain of “what did you say,” I’m wasting unnecessary efforts impressing my phone!
I wish I could take you to the horror center in my brain when I speak: that voice can’t be me, perhaps I’ve been invaded by body snatchers using an intergalactic language. Bungee jumping holds greater appeal than articulating certain words! Case in point: I’m in a restaurant and notice my empty water glass, triggering anticipatory anxiety. If feeling venturesome, I ask for a glass of water but this harmless little phrase doesn’t glide off my tongue as pristinely as it appears in writing. The greater my effort, the more tongue-tied I become until I’m reduced to a single word “wa-ter” or pointing at my empty glass while attempting telepathic communication. Amid this flood of frustration, remaining parched emerges as an attractive alternative.
My verbal penalties often boot me into the land of chronic misunderstanding and compel adjustments in my oration. Oppressed from expressing my inner eloquence, I abdicate the richness and grandeur of the English language in favor of a vastly abridged dictionary that requires massive downgrades in my self-expectations. I’m all too aware of my listener’s level of understanding by facial expression. I read utter lack of comprehension accompanied by resolute refusal to ask me to repeat myself, resulting in a curiously one-sided conversation that ostensibly involves two people. Even proactively restating my words doesn’t always accomplish a meeting of the minds. Anyone care for a game of charades?