The Dystonia Medical Research Foundation is packing September 12 with virtual fun to help us come together while keeping our distance! Gather with the Dystonia community for a special day raising awareness of Dystonia and funds for a cure. You’ll find a range of activities for everyone, from a Yoga Class to a special Zookeeper Talk to our very own Scavenger Hunt to a Costume Extravaganza!
Best of all, you can register free of charge – though you’ll want to purchase a Virtual Zoo Day tee shirt or even a “Family Pack” to fully join in the celebration. Visit www.letszoothis.swell.gives to find opportunities to register, purchase t-shirts and family packs, donate, and become a ZooGooder.
🦓 🐪 🦍 🐫 🐘 🦒 🦛 🦘 🦏 🐆 🐃 🐅
#LetsZooThis
🦓 🐪 🦍 🐫 🐘 🦒 🦛 🦘 🦏 🐆 🐃 🐅
Date: Saturday, September 12, 2020
Time: 12:00pm EST
Link: www.letszoothis.swell.gives
With my battery change behind me – a bit of unnecessary “excitement” amid the chaos of COVID19 – this cyborg is now powered by “rechargeable” batteries with a shelf life of up to 15 years. Yes! The much-welcome reprieve until my next battery change surgery is counterbalanced by the daunting reality of weekly charging sessions.
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?
Chronicles Of A Dystonia Muse 