Tag Archives: Health

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!

Massages Make Me Tense!

7176612_sNothing like a massage to tense up those muscles!

Now, I’m not talking about a rough and tumble sports massage but one of those coveted Swedish gigs that cost upwards of $150 at a fancy spa…

During breakout sessions at a patient symposium, a massage therapist offered her services to our group, hoping to bestow a haven of relaxation. She was utterly baffled by the dearth of volunteers for a free massage until I explained how our muscles react to stimulation. After all, I port a history of educating massage therapists about the Mexican jumping beans in my legs at the touch of their fingertips.

Aaaah, we achieved clarity. Perhaps she could work on locations that relieve sinus congestion, avoiding contact with my upstarts. Didn’t do much for my aching muscles but I went home breathing easy!

Bah Humbug (lol)!

16003194_sDid I say that? Certainly not, Ms. Dystonia Muse is no Ebenezer Scrooge!

The Holiday Season is the perfect time to reflect on all the year has brought for which we can express gratitude. Yes, our health may pose a constant struggle but we must believe in those flip sides. The friends and family who make us smile and support us constitute treasures beyond compare. As for my New Year’s Resolution, I shall leave behind 2013 – the good, the bad and the ugly! – and take heart in 2014. New year, new opportunities, new hope.

I’ve shared so much of my life with Dystonia on this blog and so many have graced me by reading. I urge readers to give me the gift of your details – all health conditions welcome! Chronicles Of A Dystonia Muse embraces everyone who contends with medical issues or feelings of “difference.” I’m proud to showcase Dystonia BloggerMania on my sidebar – fellow troopers blogging their real life stories week in and week out…all set for a visit!

Wishing you peace, love and joy in 2014! May you experience the miracles residing within your heart and share them with the world.

-Pamela-

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!

My Walking Twin

screen-shot-2013-11-04-at-8-58-17-pmMan has long pondered the question, “Are we alone?” Surely, in the immeasurable depths of the Universe, full of untold galaxies, there must be some planet that supports human life forms…

My thoughts about Dystonia followed a similar path. I couldn’t help but wonder if there was anyone out there like me, even if they inhabited a distant continent. Yes, I’ve met plenty of people with Dystonia but we all walk to the beat of our own drum – or neurotransmitter misfirings. Indeed, it’s easy to view the various types of Dystonia as different disorders. Even my compatriots with generalized Dystonia paint radically different pictures and respond disparately to treatment. Some lead lives I can’t fathom. Others express surprise I belong within the fold, making me feel guilty for all those years of frustration.

On the cusp of my 48th birthday, I stumbled upon “Run Carrie Run,” a blog written by a woman who embraced long distance running as her cause after DBS surgery straightened her stride. Curious about her “before” status, I encountered a veritable shocker, a stroll I knew intimately but only viewed in brief glimpses…in a mirror or store window.

There are simply no words to describe my reaction to my walking twin. Though separated by her successful surgical procedure, the sight of another human being with my manner of gait delivered a kick to my soul. I breathe the feel of that motion, how the foot gets snagged in the air, the bumps along the way. What an immeasurable relief to find another human being who once walked in my oddly navigated shoes.

Carrie’s surgical victory makes me wonder what’s available for me. While I’m no aspiring marathon runner, wouldn’t it be interesting to strap on the New Balance and execute a smooth 5k. Hey, I’d settle for a fluid walk to Fairway!

I encourage you to learn Carrie’s story at Run Carrie Run! While I stand in awe of her physical feats, Carrie’s greatest achievement is how she transformed adversity into a renewed sense of purpose. Carrie may have bid farewell to long distance running with a final half-marathon on Nov. 3, but I’ve no doubt she’ll create yet another new beginning in pursuit of passions she finds possible…

“My lasting message would be don’t ever give up, don’t fight the dystonia, accept it as your super power – your power to be different and be able to do different things that other able bodied people can’t.” Carrie Siu Butt

Getting On With Life

16542931_sAll too infrequently, we encounter unexpected inspiration. My online activities have led me to friendships with women who were once victims of abuse but presently stand as far from victims as one could possibly imagine. These female warriors, speaking their truths and lending their voices to those who face adversity, truly epitomize “Getting On With Life,” a concept I strive to embrace.

Getting On With Life speaks to so much more than putting our pasts – and hardships – behind us. It’s about moving beyond bitterness…even betrayal, recognizing those forks in the road where we’re given the opportunity to choose self-respect and taking the path of integrity. While I can’t begin to speak to the personal trauma experienced by those who’ve suffered physical or emotional abuse, I hold faith in the resilience of the human spirit, besieged but not broken. When pushed down, we need not lay on the ground amid the dirt. Empowerment is found in the determination to pick ourselves up and pursue our inner potential by “Getting On With Life.”

Remember, honor is only found in the causes we espouse when we abide by the principles for which we advocate. Even a life of impassioned activism stands empty if we fail to advance our own human decency.

 

My Summer Vacation From Dystonia!

14797796_sThis summer I neglected the beach and barely left town – aside from a trip to South Florida to visit my father – so I determined to take a vacation from my Dystonia…if only my muscles agreed to cooperate. How does one get away from the gift that never stops giving? Considering the impact of the heat on my swagger, I found myself in search of a modus operandi for my reprieve. Perhaps all I needed was to abstain from my compulsion to take a weekly swipe at the vagrancies of movement disorder. I wished my blog an abundant first anniversary and followed suite by hunkering down for a mid-summer nap.

I found considerable relief embarking on a vacation from a single aspect of myself, perhaps a metaphor for all I long to leave behind. Though Dystonia stubbornly insisted on continuing its dominion over my movements, I happily report the small space it occupied in my daily focus. Now that’s a trip I should make more often. Though we can’t pick and choose the assorted parts comprising our wholes, we can certainly choose where we allow our thoughts to wander.

So let me remind you, as I’ve reminded myself, that life is about so much more than Dystonia…or any medical condition. We all have room in our minds for those much-needed respites from our constant – and unwelcome – companions.

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!

Life Before Dystonia?

Individuals who encounter health issues later in life tend to reference “before” and “after,” a distinct turning point that irrevocably rocked their world. I can’t remember time before Dystonia. All my experiences have been informed by this condition. I’d welcome the opportunity to meet myself absent Dystonia, me minus the obsessive need to assert control in compensation for uncivilized muscles that refuse to be tamed. I don’t carry a mental list of activities I “miss,” just ones I imagine and my own unique take on the everyday.

17781067_sOne girl told me how much she missed skiing. Based on my singular experience, can’t say I’m sacrificing much. My foot, none to partial to enforced confinement, had its own opinion about staying in that boot. I found the view from the lift engaging until my brother slathered me with tales of fallen horror. Reaching the bottom waxed problematic but I swiftly mastered the art of falling and Dystonia helped my skis form an inverted “V” to slow the pace. Didn’t bother with a second run, the hot chocolate bar held more appeal. I’ll say this, I looked rather svelte in my snowsuit and things weren’t all bad considering the miracle of getting my feet into those boots and myself down the slope.

The sport of movement disorder is an alternate reality of the same world. We’re swept along on a moving sidewalk that doesn’t stop, tiny little “events” filling our days. Whatever the age of onset, I surmise the physical ease of a prior existence becomes blurry for anyone as the years pass, like an inability to remember life before becoming a parent or falling in love. I walked and wrote correctly for my first 8-1/2 years and spoke “more acceptably” for my first 20. These memories entirely evade me.

Chasing lost yesterdays is no way to build our todays. We must strive for the happiness that’s within our grasp and understand that no human being exists without limits. I find tremendous beauty in the hope, optimism, and insight of those who walk the cracks in the pavement and compose their lives into unique poems.

 

Arash Bayatmakou: Determined To Assert His Independence

About Me ShotTake pause to consider the meaning you attach to “independence.” For our forefathers, it signified freedom from arbitrary, non-representative government. To me, it represents autonomy over my body and decisions….despite strident assertions of muscles resisting attempts at dominion. For Arash Bayatmakou, it means the ability to walk across a room, a simple freedom stolen from him by spinal cord injury. He finds himself in a state of rebellion against the lesser goal of “as independent as possible” repeatedly imposed by the medical establishment.

Prior to sustaining his injury, Arash was a vigorous athlete in peak condition who relished physical challenges and daring feats. One year ago, just three days after a 60 mile backpacking trip through the Sierras, his world turned upside down when he sustained a broken spine falling from a third story apartment balcony. His injury required seven hours of surgery involving incisions in the front and back of his neck and reconstruction of his upper spine.

Although warned by doctors to prepare for the very real possibility of never walking again, Arash entertains a fierce determination to heal his body notwithstanding paralysis from the chest down. Leaving no stone unturned, he’s embraced a grueling, multifaceted rehabilitation that’s included functional integrated therapy, intensive neuro-acupuncture therapy, and more traditional physical and occupational therapy.

As he painstakingly crawls up the fiercest mountain he’s ever climbed, Arash battles not only a battered body but also a heartless health care system that recklessly disregards the specific treatment needs of individual patients. Since he left the hospital, his health insurer has arbitrarily granted 6 weeks of 45-minute weekly physical therapy sessions when Arash is fighting for the comeback of his life. Though his requests for additional physical/occupational therapy or any kind of alternative therapy are repeatedly denied, Arash perseveres.

We rely on our aspirations to persist through frustration. The unresponsiveness of the health care establishment interferes with more than our medical care, it messes with our hope. Based on cost considerations, insurance companies have drastically reduced the allowable time for spinal cord rehab and an overriding efficiency has seeped from the rule makers and administrators into the attitudes of health care professionals, who tend to focus on functionality rather than full recovery. Hence “as independent as possible.” Arash’s hope derives, by necessity, from a wellspring deep inside himself.

Arash welcomes the slightest movement in his legs, even an involuntary twitch or spasm, shedding new light on mine. Every inch forward – or wiggle of toe – is a tremendous stepping stone on his path to recovery. My fervent wish is for Arash to stand victorious achieving his goal of independence. His personal fortitude and single-minded focus are beacons illuminating the way.

Accompany Arash on his journey at Arash Recovery.

Read about Arash’s struggles with his medical insurers in the Huffington Post. This is an eye-opening article by my friend, Gregory G. Allen.

Check out Arash “walking” for the first time since his accident in Ekso Bionics’ “Wearable Robot,” an incredible new technology promising to transform lives.

Make A Little Movement!

19927674_sThis past week, a group of men and women in a Facebook Group called Neuronauts – led by a dynamo named Lori Raines – determined to make a dent in the public consciousness via CNN iReports, the hope to spawn a bit of mainstream news. Indeed, injecting our “Dystonia Awareness” stories into a stream of iReports waiting to be discovered by other iReporters, iReaders and yes, CNN editors, secures its own victory.

Ostensibly, I joined this “Movement” to speak about my “movement.” Then I began to ponder the deeper meaning of our task. My first thought was how my story isn’t simply about me or even Dystonia. It’s about omnipresent realities that touch people everywhere: feeling different, struggling, embracing hope, promoting understanding, believing in an energy beyond ourselves. My greatest compliment is when people see glimmers of their stories in mine. Maybe it’s a physical experience, moment of humor or obstacle overcome. If my blog preaches anything, it’s how we’re all part of one encompassing narrative. Our individual plot lines enrich the world with variety. Our common thoughts and emotions keep us interconnected. My goal of explaining Dystonia is readily achievable by appealing to ideas that reside within all of us and the exercise of imagination. Our iReports stand as a collective effort to introduce our little-known cause and help you to learn just one part of who we are. For me, the goal is human empathy as much as publicity.

We all make movements and (hopefully) we also join Movements. The past year marked my introduction to the dynamic force of Health Activism. I’ve come to see that activists are nothing less than human beings realizing our potential to care about one another and the world we inhabit. Start by “activating” your mind. Direct your thoughts beyond yourself, engage in dialog with others, set forth to grow as a person and in the process you’re bound to inspire others. I started my blog out of a compulsion to share truths I’d stuffed deep inside for way too long. I activated my mind to think in new ways and planted seeds in my garden that flourished.

I invite you to make that all-important first step. Undertake an intention to advance a cause or truth you find significant. Perhaps it’s Dystonia. Maybe an entirely different enterprise “moves” you. Start a Movement, join a Movement but be sure to MOVE in a meaningful direction!

You can endorse our effort by selecting “This belongs on CNN” at the end of each article. Here’s my contribution: Pamela’s CNN iReport. This is a joint effort: Dystonia may be the engine but you’re the steam propelling us forward!

Kudos to Lori Raines, who conceived this event in the first place and encouraged us to get going!

Dystonia BloggerMania

11849272_sDystonia Awareness Week may have passed but make no mistake, the flame burns on. I’m proud to participate in Dystonia BloggerMania, the continuing celebration of Dystonia activism rocking the World Wide Web. Think of us bloggers as “reality journalists” – patients, parents and children determined to shake up cyberspace by flinging out our stories for all the world to learn. No scripts in this mass exercise of reality writing, just a flow of words coming straight from the heart.

Having spent the better part of a year revealing my deepest, darkest secrets, I undertake the utmost admiration for the raw honesty displayed by my blogging buddies as they share their innermost thoughts and personal struggles. While publishing our “diaries” can be a hairpin curve, we gain a tremendous sigh of relief from facing our demons and laying everything on the line. Take one step outside your comfort zone and the other foot will follow. Before you know it, you’re off on a brisk run.

Come join us. Blog for yourself, for your community, to enlighten the ignorant. Tackling the blogosphere is seizing a ripe moment to make a splash in the pool and practice your swimming strokes. Blogging entails publicizing a kaleidoscope of challenges constituting a difficult day in the hope of connecting with those in need of hearing us. We’re working through the most personal of issues in a public form of therapy as part of a never-ending journey to find invisible upsides amid the all too visible downsides of life. Blogging enables us to combat narrow-mindedness by offering up our intimate details as examples of the wealth of human diversity. We abandon great big chunks of our privacy for the greater good of educating friends and strangers about the insidious criminalities of our disorders. Our collective impact is realized post by post, read by read.

My Facebook group – Dystonia BloggerMania – welcomes Dystonia bloggers (and our fans). Truly, we’re sprouting all over the web. Visit our sites for a multiplicity of vantage points on life with Dystonia…and beyond. Don’t forget to leave your calling card – comments are the hot fudge topping on our ice cream sundaes!

Here’s our road map:
Shayla Anthony, Bekah the Ballerina
Tracy Blowers, Brand New Day 
Carrie Siu Butt, Run Carrie Run!
Desiree Castillo, Walking Forward
Matt Lawrence, it’s my life
Lisa Marie, Little Writings
Rebecca Moller, dystonia and me
Divanicio Pessoa, Homens De Bem

Catch The Blue Wave!

18879161_sBlue. The reflection of light between violet and green on the visible spectrum, an emotion that bespeaks sadness, a tart round berry, the color of sea and sky – also a tactic for raising Dystonia awareness. We’re in the midst of Dystonia Awareness Week (June 2-8) and the “Go Blue” movement is coloring locks of hair, influencing shades of dress, painting sultry eyelids, and burgeoning blue awareness ribbons and bracelets to get the world chattering about Dystonia.

Blue abounds in a variety of hues: azure, cobalt, cornflower, cyan, indigo, midnight, navy, periwinkle, powder, royal, sapphire, teal, turquoise…and let’s not forget those baby blues. Choose your shade and conduct your own Dystonia 101 class! Be creative, perhaps you’re inclined to sing the blues or fly with the bluebird. As you can see, my blog’s “gone blue” for Dystonia!

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…

Dis*ease Unease!

For most of my life, I’ve been “dis” at ease with my Dystonia, so if the shoe fits…

5922589_sThere are a number of nasty words in the English language but perhaps none worse than  “dis*ease,” “dis*ability” and “handicap.” They make us feel less than whole human beings and fling us outside some perceived realm of “normalcy,” promoting discomfort with what I call lack of perfection. They beg the questions: Is there something wrong with ME? I move, therefore I am? I spent years chasing idealized images until stopping short at the conclusion my flawed realities will have to do perfectly fine. Besides, I prefer to see life as a philosophical and psychological journey rather than a crooked walk down the street.

We all share in creating dis*ease unease: personal discomfort with outward signs of weakness, inquisitive (I didn’t say mean-spirited) stares turning humans into objects, well-intentioned questions, unsolicited assistance invading silently staked personal dignity. No one wants to envision taking on the physical and emotional struggles of illness but for many, ill-health is transacted as an inescapable aspect of the business of life.

When dis*ease turns on a dime, remarkable is the proliferation of the healthy, blissfully unaware of their fragile status. People fail to appreciate the feats of nature in the properly functioning body until the control system goes awry, focusing on beauty bumps that mar the surface. 13299032_sWe worship flawlessness, youth, good looks, virility, physical strength, aiming for the maddeningly elusive perfect 10. When I confess my desire for someone’s easy lope, they laughingly note how I hardly covet their stride while I stand mystified. Perhaps they imagine a pigeon toe, wobbly knee, or less than shapely leg, rather insignificant compared with the navigational mischief practiced by my naughty neurotransmitters.

Our true beauty resides beneath the skin in how we open our hearts to life and share our souls with others. Dis*ease can distort the pretty picture that’s merely gift wrapping, requiring us to appropriate Superman’s x-ray vision and judge one another for the qualities we carry, catapulting dis*ease into ease.

Going To The Gym aka Extreme Sports

13593724_s editedAm I able to use the gym? The questions people ask! Heavens, I inhabit the same world as the rest of you…or do I?

Going to the gym is like careening through a rabbit hole into a surreal Wonderland full of disquieting adventures! While I watch fellow “athletes” deftly execute coups of gluteus, hamstring and trapezius on strange, weight-bearing apparatus, I largely refrain from partaking in their revelry, instead creating my own zany tea party.

For starters, any unstable surface challenges this house of cards, causing my muscles to go haywire and summoning my core to control the show. My Mad Hatter is a device I call the “marshmallow” – flat on one side, rounded rubber cushion on the other (exercise mavens know this as the Bosu ball). My feat? I “stand” on the rounded surface and wave my arms in the air to further mess with my balance. Give that device a go during an earthquake and you’ll see my task isn’t quite so easy as it looks.

My personal triathlon involves a deceptively simple maneuver – the one-legged squat – on stable ground. Try supporting your entire corpus on one leg and then bobbing up and down while engaging in bodily combat with movement disorder! My left leg insists on a quirky diagonal directional that precariously holds my weight as I teeter through the motion while somehow remaining upright. Three sets: that’s a workout!

For much of my life, the gym didn’t even appear as a blip on my radar. Courtesy of a handful of trainers who’ve done Lewis Carroll proud, I’ve crafted my own realm of possibilities. Rather than coveting unreasonable exploits beyond my reach, I rule over the territory I’ve conquered including a tamed Madame Bosu – now that deserves a spotlight on my résumé!

 

Real Men Eat Quiche!

OK, perhaps a bit of backtracking is in order. When I was in 5th Grade, a group of ignorant boys mimicked my walking in a school hallway, changing this young girl’s life. From that moment, I began to embrace an irrational belief that my Dystonia was somehow distasteful to the opposite sex, reinforced over time by a paucity of male friends, dates and boyfriends. Naturally, I blamed Dystonia, the obvious scapegoat for anything that pushed my life outside the “normalcy” I craved.

17841732_s EditedFortunately, my seemingly reasonable but foolish presumptions were counterbalanced by an imaginary prince who whisked me away from Scarsdale on his white horse – or via white Corvette. In the plot line of this fairy tale, my gallant chivalrously brushed aside my health issues upon gazing into my eyes, a delightful fantasy that failed to procure me a social life.

Notwithstanding a medical lifetime sentence imposed at age 8-1/2, a troop of real world princes busted me out of my childhood prison, demonstrating that eating Quiche and sensitivity to Dystonia are a real man’s prerogatives. Now I take heart in guys who treasure books for the reading and understand a wealth of imperfections keeps life interesting.

I leant a heavy hand constructing the walls that held me captive. No matter our objective circumstance, we imprison ourselves in the subjective images we embrace. The key to living with – or without – disability is to espouse a “healthy” self-view and carry faith in life’s possibilities. I ever take heart my Cinderella ending lingers within arm’s reach.

 

Setting Sexuality On The Table!

Edited 9717596_sTuesday I hosted a WEGO Health Chat addressing Sexuality & Disability but the truth is that sexuality can’t be generalized to such a heterogeneous group. The disabled and chronically ill constitute a complex diversity of humanity. We’re male, female, gay, straight, young, old and in between. When it comes to the passion department, urges and desires are equal opportunity employers. Further, life’s challenges fail to discriminate: anyone can have a trying day that inhibits the libido from coming out to play.

As for my physical realities, they’re part of the package, as much for me as everyone else, asserting enticing attractions as well as inconvenient complications. Engaging in heated flirtation while battling a slow-moving tongue may induce a feeling of “mum’s the word,” but a searing gaze recharges my mojo. Anyway, isn’t life all about point of view? Walking is my attempt to exercise control over a brigade of chronically misbehaving muscles that refuse to execute their assignments. Sauntering is embracing a saucy step with a womanly swagger – taking my derrière for an alluring ride. My Dystonia is actually an unwitting ally, initiating a turn of hip that lifts my behind in a fetching upswing!

We all face an uphill battle when we’re constantly besieged with the impossibly idealized body so all I can say is pack confidence. Owning your body with all its bumps and curves goes a long way towards owning that stride! The bigger picture is that we don’t simply access sexuality from our physical selves and a perfect human form isn’t a prerequisite. Glorified images of feminine beauty and masculine virility may set us aflutter, but they fall short of communicating the resounding meatiness of our existence. And for the record, real men…and women sit in wheelchairs. Body parts become incapacitated, not our thoughts and imaginations. The key to passion and sensuality rests within our hearts and minds.

I take my cues from the feelings a man stirs inside me and the ideas I locate within myself. For me, the core of being a woman is practicing compassion, expressing affection, finding my inner truths, and connecting with my deepest desires…which I’ll gladly set on the table with the right guy!

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For further thoughts on the topic, visit WEGO Health’s recap of my Twitter Chat at http://blog.wegohealth.com/2013/02/13/hachat-recap-sexuality-disability/.

Don’t miss this article from The Guardian: http://www.guardian.co.uk/society/2013/feb/12/disabled-people-valid-sexual-partners.

The Spirit Of Giving

14394117_sI can’t think of anyone who epitomizes the spirit of giving more than my soul sister, Marissa Christina. Marissa’s world is rocked by a vestibular disorder that jolts her surroundings, creating sensations of constant motion and messing with her balance. Imagine Marissa sails in a fragile ship amid stormy seas and she’s ever in need of staking a small piece of solid ground in respite from the turbulent waves.

2012 marked the year Marissa leapt outside of herself on a journey of discovery, embracing new friends whose lives have also been invaded by aliens of ill-health. The role she embraced was much more than storyteller. Part news reporter, part empathetic friend, part student, she immersed herself in bizarre realities that I’m sure in a sense felt oddly familiar, featuring them in her blog – Abledis.com – and social media with a series of monthly projects. When I seized the moment, Marissa welcomed me…and Dystonia as her December cause.

Educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition. -Marissa Christina-

Two self-confessed control freaks, Marissa and I bonded instantly. When we discussed our disorders, I couldn’t help but notice the reflective irony in our conditions. Mine manifests as a physical battle with my actual involuntary motion. Hers is an experience of sensory disorientation, although nothing is actually moving or the world is working at its normal pace. One day, Marissa’s perceptual environment developed “Dystonia” and she’s never been the same.

edited Marissa_bioI chalk up our encounter to fate and consider myself lucky to close out her 12-12-12 Project. I must give mention to the worthy souls with whom I share the spotlight and I urge you to learn their illuminating stories and read about their health conditions: Blake Watson, Kim M., Amy Gurowitz, Rhiann Johns, Sara Gorman, Dale Lehn, Peachy, Sarah Levis, Sarah Mills, and Andi Durkin.

Informing oneself about medical disorders is more than a cautionary tale; it’s how awareness is spread and an important step toward securing empathetic understanding among human beings. I hope you are blessed with inspiration in the coming year. Your company is my privilege!

-Pamela-

Note: You can find Marissa on Twitter at https://twitter.com/MarissaAbledis.

Life On Venus

The physical experience of movement disorder can be awkward, uncomfortable, stressful, frustrating, even embarrassing…all of which tend to exacerbate symptoms, a vicious cycle. Sometimes the only way to cope is to find humor in the situation.

This blog is an invitation into my world for a topsy-turvy ride replete with involuntarily contracting muscles caused by a gene named DYT1 that messes with a protein called Torsin A. In my peculiar game of Twister, the spinner’s out of control:  left leg blue–red–yellow (perhaps even purple, off the board!), right arm green–no–red, right leg yellow–blue–green, left arm red–wait–blue. All my limbs are active players, some with feature roles.