Sending You and Your Family My Warmest Wishes for a Joyous Holiday Season and a Happy New Year!
Sending You and Your Family My Warmest Wishes for a Joyous Holiday Season and a Happy New Year!
Sending out my warmest wishes this Holiday Season.
May 2016 be a year blessed with peace, joy and hope for all!
Thanksgiving offers us a chance to give thanks for the treasures we enjoy – our families, friends, callings, the bounties decorating our lives. Most appropriately, Thanksgiving is followed by Giving Tuesday, a day bestowing the opportunity to actively express our thanks for all we have by giving to the causes in need of our support.
For me, this Giving Tuesday is particularly poignant as I celebrate The Martin & Roberta Sloate Dystonia Research Fund and the hope it embodies as we look forward to a better tomorrow. I’m forever grateful for my parents’ wide-reaching contributions to the Dystonia community in a heartfelt effort to make my world a better place and catalyze critical support for all families impacted by Dystonia.
I invite everyone to join with me in sending out a message of hope today on the occasion of Giving Tuesday. You can donate to the fund established in my parents’ honor at the Dystonia Medical Research Foundation, a place they called home, using the following link: The Martin & Roberta Sloate Dystonia Research Fund.
I’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.
All too often, there’s a sideshow to chronic illness: our treatment regimen! Let’s take my pills. They’re small, white (or yellow) and round. They “control” (I didn’t say “cure”) my Dystonia but wreck havoc with my body. My meds require me to walk a medical tightrope juggling multiple balls in the air, engaging in a precarious – but common – balancing act.
My neurologist and I make all sorts of adjustments. We go down on one culprit with particularly distasteful repercussions until my walking worsens. Then it’s time to regroup. We add meds to address side effects, which in turn make their own statements. Understand, I’m an impatient person who rarely acts incrementally. I embrace BIG CHANGE. Not with my pills. The process of going up and down, not to mention trying new meds, is E-X-C-R-U-C-I-A-T-I-N-G-L-Y S-L-O-W. But I appreciate the need to drive with caution and intermittently engage the brake.
The “games” never end. I had to discontinue a long-standing drug that caused my blood count to plummet dangerously. Another regular exerts undue influence on my blood labs, rendering them confounding to everyone except my neuro. Then there’s the trial and error of “new” treatments. During a clinical study, I became convinced a med was making my Dystonia worse and hightailed my way off that highway. I speak from experience when I say serious drugs merit serious vigilance.
I reap the benefits of a highly knowledgeable and careful neurologist. However, responsible health care doesn’t end with a trustworthy physician. As patients, we’re the ultimate arbiters of the substances we ingest and interjecting a healthy dose of caution is prudent. Do the research, investigate your options, read the fine print, ask probing questions, and trust your instincts when it comes to side effects – after all, you know your body best.
With World Health celebrated throughout spring and summer, the American Recall Center has embarked on a campaign to promote medication safety (check out their tips below). The American Recall Center website is an invaluable resource for prescription drug and medical device recall information and other healthcare topics advancing informed medical decisions.
What are your fiercest multi-tasks?
In 2013, I took a summer “vacation” from Dystonia! This year, I packed my Dystonia – along with my cane and walker – to head to destinations north of the U.S. border. In case you’re wondering, I left my ego and my pride safely tucked away in my apartment. This was my first travel adventure with walker in tow and I was determined to serve patriotically as the penultimate trooper. Certainly, I’d no intention of defining this sojourn by my special needs.
The advance forecast was smooth sailing, my only trepidation the scents that threatened to assail me. Little did I expect a daily roller coaster ride rife with spine-tingling bumps and spur-of-the-moment curves.
Old Montreal offered a charming tangle of narrow cobblestone streets and squares lined with bistros and shops inhabiting the shadows of a modern city. Calling the terrain challenging is an understatement when my walker bounced over every square inch of cobbled friction. Swallowing my fatigue, I plodded along at my own measured pace, feeling a bit like Moses parting a sea of pedestrian traffic.
Unbeknownst to me, Montreal was merely my “practice run.” Our next destination, Old Quebec City, presented a veritable bobsled track snaking along the bank of the St. Lawrence. I found myself chasing my walker down descending routes, then huffing and puffing the upswings. Rain showers forced me to navigate single-handedly, a swift kick to my stability. I wasn’t the only one aching: my poor walker survived worse for the wear, even requiring an impromptu French Canadian repair!
A series of small victories over an endless obstacle course taught me an important lesson about weathering life’s bumps and bruises. While my sojourn was physically daunting, I brokered a treaty with my limitations and adjusted my future travel expectations.
The latest experimentation with my meds sent my walking into a funk, leading me to a newfound appreciation of why I tolerate their medical mischief. It also rendered me significantly less independently mobile – in need of what I shall call a “new friend” – landing me smack in the middle of a vigorous debate between my good sense and inner stubborn mule. Seems my resistance to special assistance is alive and kicking. Notwithstanding 40+ years living with Dystonia, I cling to a foolish insistence I’m no different from everyone else.
As a cantankerous attitude sought to assert itself, complications immediately ensued when I discovered the surprising rewards of life with a walker. Let’s start with my ability to perch comfortably at random street corners – not a bench in sight – for a much-welcomed respite. It dawned on me, not only needn’t I fear wiping out from an unruly twist of foot…or exhaustion…but I now enjoy a custom seat at any outdoor venue. Further, thanks to my visible aid, New Yorkers have become more generous with their assistance.
Where I expected shock from friends, I encountered awe over the creature comforts at my fingertips. Indeed, they quickly jumped on the bandwagon, appropriating space for handbags and parcels – triggering an onslaught of speculation about the moneymaking potential of my new adventure. Inject a flash of ingenuity and my walker may very well present a portable gold mine.
As for me, I often mistake myself for a mother out for a spin with stroller in tow…only this femme is walking herself!
Too often, I find myself apologetic over hurdles that come with Dystonia: I’m sorry it’s difficult to understand me…I can’t walk across the park…I need more time to finish this form. Worse are the silent apologies I make to myself. Why do I perpetually raise excuses for my condition as if responsibility for this annoying hoopla falls squarely on my shoulders? I possess greater control over my runaway temper than my speech or my stride. Dystonia arrived as an intruder on my doorstep, robbing me of some of my dearest possessions: clear speech, even gait, smooth handwriting, contraction-free enjoyment of life.
The perpetrators of this medical crime lurk deep inside my brain committing all kinds of chemical mischief. I’ve participated in a bunch of “line-ups” – ironically, I’m the one who’s scrutinized – but while a culprit surfaces in a blood test, the actus reus can’t be captured in a pretty picture and my “head shots” are dead-end streets. We know Mr. DYT1, my uninvited houseguest, orchestrates a mutant ninja protein – Torsin A – who’s ostensibly a key player in a conspiracy of neurological proportion involving a perplexing hoist of my brain with a modus operandi stumping even the most seasoned investigators. To complicate matters, a host of suspect genes orchestrating their own villainous behaviors are implicated in different forms of Dystonia.
On the bright side, I function as my own “neighborhood patrol,” doing my best to combat an ongoing bodily offense. I undertake every effort to keep the crime labs busy, proffering skin and blood samples, funky PET scans, functional MRIs…accompanied by eyewitness accounts of the damage inflicted on my landscape. Meanwhile, I remain a walking crime scene apologizing for acts I can’t explain. Perhaps my amends are best bestowed on the objects of my temper…
We’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!
Did 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.
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.
One 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.
Blue. 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!
For most of my life, I’ve been “dis” at ease with my Dystonia, so if the shoe fits…
There 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. We 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.
It’s interesting, with my very curable bout of thyroid cancer, I never had to explain how cancer involved the uncontrolled replication of cells in a phenomenon called a malignant tumor. Instead, I’d answer informed questions like has it metastasized, will you need radiation? What a relief. With my Dystonia, I’m required to function as a walking professor of neurology, not to mention my own personal PR professional, services unpaid. Further, my cancer was actually cured and my doctor didn’t work in the Dark Ages. From that perspective, it was fabulous.
For much of my life, I shirked my PR duties, reluctant to announce let alone explain my disease and able to hide my walking with all sorts of dysfunctional tricks like running from class to class as a child and wearing long skirts as a young (and not so young) adult. Now I feel a compulsion to delve into the mysteries of my gait and speech, shifting control of people’s perceptions and empowering myself to address the silent questions others may be too polite to ask. I’m prepared for the blank stares “Dystonia” elicits. If I don’t speak up for my disease, who will?