Tag Archives: Challenges

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.”

Life In The Trenches

5365287_s_editedI’ll confess, for most of my life, I didn’t view myself as “disabled,” reserving this term for those with even more extreme physical liabilities. Yes, I felt “different,” but it never occurred to me that Dystonia qualified me for membership in any kind of exclusive club.

In my confused reality, I viewed individuals with disabilities as mirrors of my own imperfections, reflecting a self-image I couldn’t bear. Now I simply see people whom I count among my closest friends for reasons that have everything to do with the spirit their hearts embrace. No saints or heroes, just soldiers on personal battlefronts waging reluctant but necessary combat. After all, life is lived in the trenches not on a pedestal.

My argument with the whole concept of disability is how it creates a notion of us vs. them. Those of us with chronic illness don’t conduct ourselves by majority rule or elect representatives to a special Disability Congress to proclaim declarations of common attitude and award badges of merit for supposed acts of heroism. We take our lives thought by thought, day by day.

Think you’re so far away? Challenges abound for all of us, what’s your struggle? You could even try it for a few minutes, an hour, a day. Blindfold yourself. Shake your arm every time you eat, drink, write, keystroke, or play an instrument. Spin around crazily, then swim and sway down the street. Attempt 24 hours in a wheelchair. Do you feel to be a “sore thumb” or is your entire attention focused on your tasks? How much of you feels “able” and how much “unable?” It’s not our physical differences that mark us with a scarlet “D” but how society finds the need to distinguish us by them. The only “sore thumbs” are those thusly viewed by the rest of the hand. How about examining the degree of perfection the other fingers can claim!

The lesson I try to embrace every day is that each of us is a composite of unique information, no one aspect so particularly remarkable that we stand out as any more “different” than the person sitting or standing next to us. When it comes to my personal data, Dystonia is a fact tucked into the details of my life that’s completely uninformative regarding my worth as a person. While Dystonia is a bit of a visual drama queen, why it should dictate a “one size fits all” label is beyond me…and unfortunate.

I’m just like everyone else. I carry hang-ups, sport frustrations, worry about inconsequential details, celebrate life, laugh, love, dream, and strive to hold inner peace. May you find yours as well.