Category Archives: Musings

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.

Communities In Action Achieve Results

Every Spring, individuals with Dystonia from throughout this vast country lend their enthusiasm, personal struggles and impassioned advocacy to advance mission critical policies aimed at eradicating Dystonia and improving patient care. The power of advocacy is nothing more – and nothing less – than the power of people banding together in pursuit of a common cause. The collective wealth of the experiences we recount illustrates the importance of the policies we promote. Our participation reminds those inhabiting halls of power in Washington that Dystonia is on the map…to stay…until we find the means to whip this debilitating condition.

Edited 2709338_sOn the flip side, we gain tremendous gratification from the knowledge we’re actively pursuing a cure, not merely awaiting one. One of the most difficult aspects of living with chronic illness is the degree of helplessness we exercise over the villain holding our bodies hostage. Participating in research studies, raising needed funds and advocating for important policies are direct and meaningful contributions that imbue us with a sense of purpose. Remember, no one chef bakes this cake. The search for a cure is a team effort reliant upon medical and research professionals, healthcare partners, patients, fundraisers, advocates, and all who support us. The accumulation of efforts we undertake propels us forward.

Those who can’t make Advocacy Day should take heart. Flocking to DC for a day of oral combat is by no means the only way to muster our numbers. The strength of our platform is fueled by the collective resonance of our individual appeals, assembled piece by piece. We needn’t travel great distances or endure a whirlwind of meetings jam-packed with issues. Advocacy can be as simple as a call or email to your local politicians introducing your health challenges and policy agenda. Time-sensitive “action alerts” requesting specific communications offer additional opportunities for participation “from a distance.” Sweeping displays of strength are composed of thousands of “tiny” efforts. We need every available voice raising our concerns as it’s impossible to know who or how many will tip the balance.

By no means are we building castles in the air. Health activism conducts serious business.  Washington is steeped in special interests strong-arming policy and politicos jostling for position. Everyone with an interest in tangible outcomes bears responsibility for expressing an opinion about the actions – and inactions – of our government and reminding elected representatives why we entrusted them with their authority in the first place. Only by telling our stories and asserting our legislative programs can we be heard. Dystonia’s continued eligibility for DOD research funding is one potent example of the tangible outcomes our sojourns to Capitol Hill produce. I urge patents, friends and families to heed an imperative for action that yields concrete results. Armed with determination and an email program, you can even make a difference from the comfort of your home.

Dystonia Advocacy Day, April 9, 2014
Capitol Hill, Washington, D.C.
Dystonia Advocacy Network Legislative Agenda, FY15

  • National Institutes of Health (NIH) appropriation of $32 billion to allow continued funding of important research programs.
  • Active support for the Dystonia research portfolio at NIH including the Dystonia Coalition.
  • Inclusion of Dystonia as a condition eligible for study in the Dept. of Defense (DOD) Peer-Reviewed Medical Research Program.
  • Long-term solution to the Medicare Sustainable Growth Rate (SGR) formula that adequately reimburses physicians and ensures patient access to quality care.

The Dystonia Advocacy Network’s legislative agenda is found here: http://dystonia-advocacy.org/agenda/

Those with Parkinson’s can join forces with the Parkinson’s Action Network: http://www.parkinsonsaction.org

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!

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-

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.

 

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.

Showing Up For The Party!

6792724_sWhen I was a little girl, my mom taught me the importance of showing up for the party. Boy, was she right!

As I muse over my experience at Dystonia Advocacy Day, I ponder the significance of our actions. While we volleyed many an impassioned speech, I can’t help but wander to the conclusion it all comes down to showing up. Implanted with medicine pumps and medical devices, toting our loathsome pills, a few sporting motorized scooters or walking sticks, Dystonia hailed to D.C. armed with an arsenal of war stories to announce our presence.

Tasked with a day of legislative sorties on Capitol Hill, putting ourselves out there is no small matter. Showing up means summoning the courage to relive our most traumatic moments with a series of strangers, some paying only polite attention to our deepest frustrations. Showing up means risking an emotional bottleneck that messes with the best-rehearsed oration. It entails listening to nasty words like “sequestration” and watching life issues we battle every day transformed into talking points in a gridlocked budget process. Showing up denotes enduring a hectic, stressful schedule that wrecks havoc with our Dystonia for the same cause. It makes a simple but profound statement how we need help from our government to enjoy our freedom to move. Showing up is worth 1,000 pictures times 1,000 words…I can only hope mine were fully understood but I know my attendance was duly noted.

I must give mention to Team NY, which certainly “showed up” for business. After lending 2 of our crew to switch-hit for NJ, we comprised 3 Dystonia ladies, 1 husband and 1 father determined to wield our expertise. After all, Congress has much to learn about Dystonia. We opened our hearts, laughed our way through our emotions, swooped in to support one another, even caught a ride on the exclusive underground train. Talk about tired; by the end of the day, we could barely remember our personal details!

Here’s to fellow troopers Allison London, Ron Hersh, Denise Gaskell, Greg Gaskell, and members in absentia, Rachelle Robert and Christina Pepi, who were with us in spirit. Traipsing through the Halls of Power with the top soldiers in the state made my day!

If you plan to change the world – or even one small corner – start by showing up for the party!

Dystonia Advocacy Day, May 1, 2013
Capitol Hill, Washington, D.C.
  • National Institutes of Health (NIH) appropriation of $32 billion, a necessary increase to allow continued funding of important research programs.
  • Active support for the Dystonia research portfolio at NIH including the Dystonia Coalition and participation of Dystonia researchers in the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.
  • Inclusion of Dystonia as a condition eligible for study in the Dept. of Defense (DOD) Peer-Reviewed Medical Research Program.
  • Long-term solution to the Medicare Sustainable Growth Rate (SGR) formula that adequately reimburses physicians and ensures patient access to quality care.

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!

8723527_s

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.

Who’s In Control?

A neuroscientist may tell you the problem rests with a far off galaxy in my brain named Basal Ganglia, denying me control of all my movements. I prefer to address this question on the metaphysical realm. After all, I’m a self-acknowledged control freak. I like to think I’m running the show but my body has a different opinion, flexing its muscles with every opportunity to put me in my place. Modifications in order, I try a team approach and transform into a coach hurling encouragements to get the best efforts out of my players – an excellent motivational tactic that unfortunately fails in its execution.

Dystonia is a never-ending refusal to surrender to body parts that won’t follow my “suggestions.” I find it absolutely bizarre how my left foot appears convinced of the “rightness” of its motion, like a stubborn 5-year-old insisting on walking a strange Indian war dance. How about mind over matter? Hmmm. I attempt thinking my foot into a smooth gliding step. No dice.