Tag Archives: Positive thinking

Forbidden Pleasures

12487259_s_Fotor EditedRecently, 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.

Notwithstanding the daily roller coaster ride presented by my Dystonia, my feet have led a relatively ho hum life, long relegated to the safety of Aerosoles’ “Forgive” model and a sparing assortment of sneakers, plus a few pairs of carefully chosen and largely unexciting boots.

So fancy me, perched on a footstool in DSW surrounded by treasure troves of ladies footwear in an endless variety of heights, shapes, styles, sizes, fabrics and colors – feeling as deliciously decadent as the most luxurious chocolate dessert. Gingerly, I eased my feet into a pair of 3 inch black suede pumps, thinking, like the Little Engine That Could, “I think I can, I think I can,” and, just like that shiny blue engine, I actually could! Suspended in a state of disbelief – and by a pair of magnificent for-me-miraculously-high heels, I strutted across the room, a battery-powered cyborg towering over the profuse displays of ladies shoes surrounding me!

Postscript- Notwithstanding my frivolous purchases, in my world, practicality continues to reign supreme. I wear my new treasures sparingly, storing them safely in their cardboard boxes nestled in crinkly tissue, visiting frequently for a joyful peak.

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Tap Dancing Class…or Priceless

IMG_0142 Fotor.jpgDid 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.

They say where there’s a will there’s a way. Everyone in this class has certainly found their way, giving me pause to reconsider what we really need to accomplish our goals. “Disabled” you say? Perhaps you need to review your dictionary, starting with the meaning of “ABLE!”

 

Disability Pride

80489597_s copy_FotorYesterday 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.

“Disability Pride” teems with an inherent irony: Take pride in a lack of ability? Yes, we announce ourselves with pride and incite inclusion. What is more empowering than accepting – and loving – ourselves, imperfections and all? We puff out our chests in celebration of how we persevere…and more…notwithstanding our disabilities and of all we overcome amid the daily muck muddying but by no means devaluing our lives. Whether we’re wheelchair bound, deficient in sight, gait, hearing or speech, struggling with learning or mental deficit, suffering from a disability that is “hidden” or glaringly evident, we take heart in our robustness of spirit as we bend and sway but never break in response to the challenges we face and conquer.

I am Pamela Sloate. I have Dystonia and I’m proud!

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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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Dogs For Dystonia: My Ellie Bellie

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As the Dystonia Medical Research Foundation honors our canine friends this February with their Dogs For Dystonia Virtual Walk, I’m moved to consider all my miniature schnauzer – Ellie – has meant in my life and the invaluable lessons she has taught me.

Bright-eyed and bubbly, loving, loyal and eternally optimistic, Ellie has infused my world with her exhilarating jubilance and unwavering affection. After an eon navigating life as a solo act, Ellie is a beacon of light brightening my days. She’s my steadfast companion virtually everywhere I go and I’ve connected with a cornucopia of maternal instincts that have long simmered beneath the surface yearning for expression. I wholeheartedly embrace my role as Ellie’s momma and find myself reveling in the joys of motherhood.

With the dramatic improvement in my gait post DBS, my energy level has risen closer to – though certainly not matching – Ellie’s and we’ve become partners in crime, exploring the neighborhood and local parks with vigor. Indeed, the changes Ellie has wrought in me are a huge reason why I reached for the brass ring and embarked on my DBS journey. Ellie is my most enthusiastic cheerleader of my newfound mobility and we celebrate our new life every day!

Ellie and I are thrilled to participate in Dogs For Dystonia to pay tribute to our faithful canine friends and the countless ways they enrich our worlds. We proudly join with the Dystonia Medical Research Foundation, fellow patients, friends, and their pets to celebrate our hope that one day we will indeed eradicate dystonia!

I encourage you to visit the Dogs For Dystonia website, where we’ve enlisted our “best friends” as fundraisers and share our heartfelt stories of how our pets have changed our lives:

Click here to visit the Dogs for Dystonia Website. Ellie invites you to join her by registering your dog: Dogs For Dystonia Virtual Walk

Ellie is committed to curing Dystonia! Click here to make a donation: Donate In Honor Of Ellie

“Perks”

45057482_sWith my walking in a state of disarray, I’m on the prowl for creative ways to count my blessings. My challenge is rather monumental. “Seek and you shall find” takes on a whole new meaning when it comes to discerning the silver lining in Dystonia.

I’ve discovered one “perk” traipsing the city streets with my puppy. Courtesy of the deterioration in my gait, our daily walks stand as true workouts, enabling me to indulge my sweet tooth without penalty. The collective force of my involuntary movements simulates a walk in a wind tunnel, leaving me breathless in the span of a few short blocks for a potent bout of cardio.

Convinced I’m burning calories with every laborious step, I entertain bizarre satisfaction struggling against my unruly muscles. In a nod to my inner obsessive-compulsive, I’m forever recalculating the territory I cover as I push forward to go the distance, awash in determination to ace at least one super-sized “power walk” each day. Another “perk” worthy of mention: nailing a generous swath of city blocks ensures I’ll be sleeping soundly that night.

I may count my victories in the slow lane but this sure beats counting calories!

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.

My Pokey Little Puppy!

13898682_sIn the company of my pokey little puppy, I’m sure you can guess who’s been stealing the show! I’ve happily abdicated top billing to 12 pounds of furry delight while my metal co-star finds herself demoted to disgruntled supporting actress.

As life hairpins a 180-degree curve, I’ve discovered that those who notice my traveling crew assume my walker – purple and hot pink Sherpa ensconced snugly on the seat – serves at my puppy’s pleasure. Ironically, after a lifetime battling self-consciousness, I’m proactively advertising my need for a walking aid without a care.

Meanwhile, my Dystonia has taken a back seat to little Ellie as I traverse the miracles – and responsibilities – of motherhood. Housetraining poses a particular challenge when our summer strolls evoke the last leg of a marathon. As the thermostat ramps up, so goes my Dystonia. I trudge along the city’s streets drawing on every ounce of energy I can muster, braving sweltering weather I formerly shunned. When there’s no juice left, my walking devolves into a game of shuffleboard played out in a cloudy haze. Anything for my puppy, who stands infinitely more important than the “inconveniences” wrought by Dystonia.

The moral of my story: The very best pick-me-up is to step outside ourselves and divert our attention to the world unfolding around us, rising to the occasions life presents.

A Hop, Skip & A Jump!

26418170_s Edited#JumpForDystonia is sweeping across cyberspace and I couldn’t be more excited. This inspirational awareness campaign launched by Dystonia Europe reminds us to live our lives joyfully and offers us hope that our seemingly elusive dream of freedom of movement is but a hop, skip and a jump away!

When was the last time you embraced a leap of faith? How often have you jumped for joy, jumped into the conversation, jumped to a conclusion…or jumped off that proverbial cliff? How about taking a flying leap and jumping for Dystonia?

There’s no better way to begin than a jump-start! Join our #JumpForDystonia Flash Mob this week (July 13-19) to ignite a wildfire of awareness across social media. Simply share a pic or video showcasing your best – or most creative – jump accompanied by the hashtag #JumpForDystonia. Pole vaults, long jumps, ski jumps and jump shots are all welcome. Enlist friends family and work colleagues. Let’s get the whole world jumping for Dystonia!

Check out our Flash Mob Event:  #JumpForDystonia Flash Mob

Enter the Photo Contest:  #JumpForDystonia Photo Contest

They say a picture is worth a thousand words. This #JumpForDystonia video is worth a million:

Useless Why

17688053_sWe’ve all read inspirational stories of triumph over physical or mental challenge…or met people who believe they were given their illness for some higher if unknown reason. While I undertake the utmost admiration for these points of view, I don’t find a grand design in my circumstance beyond writing this blog…and I wish I’d never encountered Dystonia in my bout of chance in our family’s genetic lottery, whether stronger for this experience or not. One of my greatest battles is the “Useless Why” that relentlessly besieges me.

Over a span of 40+ years living with Dystonia, I’ve frequently traveled to the Land of Why: Why me? Why Dystonia? Why the unnecessary obstacles? Of course, these are dead-end detours in pursuit of unanswerable questions, pointing me in the useless direction of life’s random unfairness. My daunting “whys” deliver a knock out left hook to productive focus as I grapple with comparisons serving no practical purpose.

I’m not alone in a wasteland that swallows more voraciously than quicksand. The “Useless Why” game is intrinsic to human nature. Our instincts compel us to seek explanations for senseless adversity or what we perceive as worldly injustice. Check in with your internal barometer – “Useless Why” plays out on many levels: Why is my hair insistently frizzy? Why can’t I find a more satisfying job? Why doesn’t my child behave? Why haven’t I met Mr. Right?

Amid my searing search for answers to life’s more perplexing questions, I’ve found the antidote for “Useless Why” resides in “Useful How” – the tactics we embrace to dig ourselves out of our holes and lead purposeful lives. So make a plan of action and trash those Useless Whys!

Cramps: Do The Bunny Hop!

13848335_sMenstrual cramps, stomach cramps, leg cramps, we’ve all had them in one form or another. Take an Advil and if they persist, call the doctor in the morning…

If you’re otherwise free from movement disorder, those cramps are about as close as you’ll get to a dystonic movement – you’re experiencing nothing less than an involuntary spasmodic muscle contraction, painful to boot. Surprise, Dystonia isn’t quite the unfamiliar territory you thought!

In a devilish merger, my foot cramps are a case of ordinary cramp meets DYSTONIC FURY. I may observe a lift of toe or turn of arch but the real craziness is the frenzy I can’t see, daring me to halt this out-of-control party. Fortunately, I’m not without experience handling these matters, tending to strike without warning. Pressure is required to quiet my visible movements and initiate a dig into the hidden turmoil…

Springing from my bed, I channel my inner bunny and hop like mad in a resolute attempt to pound the insanity out of my muscles. Often, we go several rounds before the knock out punch is delivered but I’m ever grateful for my victory!

Bon Anniversaire!

14605022_s editedA year ago today I pressed the publish button on my newly created, blissfully pink WordPress site, a simple motion that shook my very core with far greater velocity than Dystonia. I’d embraced a new self-view removing shame from my equation, embarking upon an exploration of alien territories within myself and new roadmaps to human understanding.

My blog marked the end of one odyssey and the beginning of another, perhaps even more transformative than the first. I set out with lofty goals – no less than unburdening my soul, sharing deeply felt insights and describing my strange disorder without it sounding like a virulent medical horror, starting with the post pinned to the top of this site. I ventured into foreign lands endlessly more foreboding than the manipulative villain lurking in my brain. I’ve tackled my deepest nightmares of how I might present to others, wildly misplaced self-phobias, misinformed perceptions of disability, even notions of sexuality.

In the span of a year, I’ve hurled myself into relationships I never could have imagined, discovering like-minded people who once manifested as unintelligible to me as Dystonia previously stood to many of you. Indeed, I’ve introduced some of my new friends on the pages of this site, individuals who’ve helped me see myself in a new light and shine like multiple suns on my brightly lit world. I stepped beyond the human threshold, which often paints a wholly uninformative picture, and with a lingering look found overwhelming commonality that speaks to our shared spirituality. Notwithstanding an abundance of horrid descriptives I’d love to banish from the dictionary, chronic illness and disability can be a curtain masking healthy and entirely “able” human souls.

As my own personal muse, I strive for optimism to guide my way. “Dystonia Muse” is as much a compilation of my finest aspirations and intentions – forever inspiring me to walk forward – as a hard and long-earned life lesson. Everyone has an internal muse, an ideal self we formulate through sweat, tears and tenderness and strive to hold, the person to whom we ever inch closer as we journey through our lives, the best of our hopes and desires, an amalgamation of our loftiest dreams fueling us to press onwards.

16905028_s editedVenture beyond the surface differences that separate us, look inside yourself, brave your singular waters, seek profound truths, and you can begin your own personal expedition to discover the infinitely understandable human story and boundless reach of your heart.

Pamela Sloate – Decidedly “OUT” of the Dystonia closet!

Post Script: Here’s a warm thank you to new friends who’ve made a world of difference in my life: Marissa, Robyn, Rhiann, Peggy, Chris, Carrie, Lisa, Andrea, Rebecca, Shannan, Juliet, Patty, Jan, Denise, Allison, Sarah, Ed, Arthur, Divanicio, Lars, Franz, Robert, Gohei, Arash, Bruce, Pat B., Nick, Gary. I mustn’t forget Duncan and a handful of “Aussies” on Twitter – Jacinta, Tara, Francine, Jane, Ray, Archie, and Larry – who make “chirping” a delight!

The Little Engine That Tried

4574134_sOne of my favorite children’s books is The Little Engine That Could. Now there’s a struggle that speaks to me. Sparkling blue, the little engine just wanted to surmount that hill embracing the power of positive thinking. While the story teaches the value of optimism and hard work, to me it’s all about the power of trying. The engine wouldn’t have made it anywhere if he didn’t determine to tackle that daunting hill.

You see, The Little Engine That Could started out as The Little Engine That Tried. “I think I can” goes to the heart of the trier. Although we don’t always beat the odds, we persevere in the face of them. Triers may not ascend the victory stand but always earn the “E” for effort. We never disdain second place or honorable mention, instead focusing on whom to thank for getting us there. Indeed, triers remember to enjoy the scenery along the way in case we miss our intended destination. Triers needn’t worry about leaving a trail of regrets lying in the dust.

Though Dystonia follows me more closely than my shadow, I’m ever the trier with my stumbles and falls. Often, it seems my life is more about trying than achieving, living without remorse my greater goal. Circumstance frequently requires us to take a deep breath and attack those towering hills. The beauty of the good old-fashioned try is how we accumulate strength from persistency of effort and find no failure in lack of success.

When in doubt, just give it a try…