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.”
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.”
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.
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!”
I don’t buy printer ink without carefully investigating my options. You can only imagine how I approach a decision like bilateral brain surgery. Not a grain of sand is left unturned in my lab of microscopic dissection. Popping a new pill is one matter. A potential starring role in a two act surgical drama involving a drill, a brilliant neurosurgeon and two electrodes about to take a slip into my brain for an ongoing adventure of electrical proportion is quite another story!
