I’ve been rolling along – sans my walker – engaging in a post-DBS flex of my muscles as I pursue a Masters in Health Care Administration. My DBS apparatus has been humming right along with me: electrodes nestled all snug in my brain, wires in place, chest batteries juiced up, remote control safely tucked away from fiddling fingers. Regular “tune ups” have ensured my DBS settings are not too hot, not too cold…but just right.
Flash forward to present day NYC, the COVID 19 panic is running rampage through our nation, social distancing the new normal. Amidst this whirlwind overwhelming the health care system, I need a battery change…NOW? Even my neurosurgeon is “social distancing.” How does he insert two new batteries in my chest via the phone?
My long-time nemesis, “Useless Why,” beckons. Why me? Why Dystonia? Why now? “Useless Why” invites me on a dead-end journey of unanswerable questions about why this is happening to me…now. But then again, doesn’t that same temptation lure us all as we collectively face COVID-19, an unprecedented and daunting challenge. Useful questions about how to get ourselves out of our untenable situations are beneficial – and uplifting. Useless questioning – why me, why now – that threatens to lead us down a path of victimization serves no higher purpose.
Whenever life threatens to spiral out of control, it’s so easy to fall into the “Useless Why” black hole. Now more than ever, we must give a positive attitude a good faith try so we don’t get zapped by “Useless Why.” Blushing brides postponing their big day, graduating seniors who won’t be marching in May. Socialites trapped in their apartments alone, star-crossed lovers rendezvousing by phone. Dystonia patients in need of Botox injections biding their time, wondering how long it’ll be before they start to feel fine. As we struggle with panic, let those sleeping dogs lie. Let’s not become paralyzed by the specter of “Useless Why.”
Recently, I blew up my Universe – shopping for shoes. Formerly a forbidden pleasure, I literally soared to new heights trying on all sorts of heels. Though I must confess, I don’t know how my fellow females bear the discomfort of those pointy toes and stilettos that send me teetering and tottering.
Did you ever think someone in a wheelchair could tap dance? Well think again. With special gloves sporting metal plates affixed to their palms and fingertips, the members of Mount Sinai Rehabilitation’s tap dancing class skillfully manipulated their hands from “heel to toe” along to a crooning Jerry Lee Lewis. I couldn’t help but tap my toes in time as I observed their display of skill and joyful tempo. Attired in tap shoes and a glittery “Gotta Dance” tee, Mary Six, a former Rockette who lives with dystonia, taught us about brushing and cramp rolls as I languidly swayed to the enticing music. Then Mary Six waltzed around the room demonstrating with her feet the unique steps each participant should execute with their hands.
Yesterday was my first occasion participating in New York City’s Disability Pride Parade and I couldn’t have been more proud and inspired by the very best New York City has to offer as I marched with Mount Sinai Rehabilitation. As our joyous celebration wound its way through the city streets on a hot Sunday – 5,000 richly diverse human beings strong – we forgot the pounding sun as we shouted our disabilities from the rooftops.
Post DBS, my life has been revolutionized by a startling revelation: Traveling from Point A to Point B is as “effortless” as moving from one foot to the other! I exist in a surreality I never could have imagined. Who would have thought I’d ever be in a position to compare and contrast smooth and twisted gait! Conquering distance has become user-friendly. Has NYC shrunk? This on-the-go rookie well knows the act of walking straight is deceptively simple – even miraculous – and with profound effect. Now that all my ducks are lining up in a row, I attach new meaning to the words “independently mobile.”
In 2012, I shared my deepest, darkest phobias about my speech in a post titled “
Sir Isaac Newton, take note, my Dystonia has served as a vivid example of your 3rd Law of Motion gone haywire: For every [voluntary] action there’s an equal and opposite [involuntary] reaction.
Last month, I aced my starring role during neurosurgery. Now that my neurostimulators have been powered on, I find myself in a constant state of heightened hyper-awareness of my movements making my body the “star” of every moment.
As I made my way to my first DBS programming session during the chaos marking morning rush hour, I was abruptly reintroduced to the inhumanity inhabiting my fair city. Hardly the picture of health, I stood braced against my walker, a colorful flowered scarf sculpting my recently shaven head, watching taxi after off-duty taxi unceremoniously sail by me – patently ignoring my hand wildly flailing through the air in an act of deliberate motion having nothing to do with my Dystonia. I couldn’t help but surmise that cab drivers hold no interest in attending to my walker. Where was Sir Galahad, galloping up Third Avenue to rescue me on his black and white checkered horse majestically draped in yellow?
Living with a rare disease like Dystonia, I find myself self-conscripted into service as a fundraiser. It’s all rather simple: If I don’t invite people to care about my little-known disorder, who will? Curing Dystonia takes a village of patients, friends, and families…not to mention the medical investigators working diligently on our behalf!
I’ve been a blond, brunette and redhead. Now I sport a skinhead. At the altar of DBS, the sacrificial lamb is my hair. So how to make the best of my untenable situation when there’s no use crying over spilled milk? My go-to guy is my “secret weapon:” the handy PhD Dystonia forced me to earn in “Making Lemons Into Lemonade!”
