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I Need A Battery Change…NOW?

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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.”

Me 2.0!

8480264 - running girlPost 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.”

I stand before you “Pam 2.0” – action-oriented, driven and efficient – roaring out of the gate to tackle my errands and responsibilities with the vigor of an NFL linebacker. I’d never grasped the smooth side of multi-tasking or the effervescence of living life on the run. Dystonia erected a prison of limitations constraining my every effort…in ways even I didn’t fully appreciate. Sojourns out of my neighborhood loomed daunting. Rain or inclement weather provided a convenient excuse to stay home. For many years, life passed before me in lackluster shades of grey. My involuntary movements and their psychological toll crowded out the innumerable possibilities that lie within arm’s reach when we’re not squandering energy struggling with basic bodily operations. Now I feel free as a bird spreading her wings for the first time.

They say life is about the little things. For me, life is about a wealth of glorious but supremely basic minutiae virtually invisible to most of us…empowering us to enjoy a magical day!

 

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Our White House Petition Is Making A Comeback!

24351216_s EditedThe Dystonia Community welcomes September wearing our hearts on our sleeves. Patients, advocates and the foundations that support us have banded together to advance a new petition requesting official White House recognition of Dystonia Awareness Month. The magic number is 100,000 signatures by Sept. 24 and we’re amassing them one by one!

I urge everyone to stand with us in what is truly a collective effort. It only takes a minute to sign – how about sharing with five friends? Anyone age 13 or older living anywhere in the world can participate. Those outside the U.S. simply leave the zip code blank. Remember, your signature isn’t complete until you click on the confirmation link the petition site will email you.

Make a difference by signing here:  White House Petition.

It wouldn’t be September without a “Flash Mob.” We’re celebrating Dystonia Awareness Month with a social media block party! Join in the fun using the following link:  Dystonia Awareness Month Flash Mob.

Happy Dystonia Awareness Month!

xxx

Pamela