I have D-Y-S-T-O-N-I-A? No, it’s not a former Soviet Socialist Republic but a neurological movement disorder.
So what is Dystonia? Let’s set aside medical formalities and fast-forward to practical realities. Imagine you’re trying to jot down a grocery list and, quite inconveniently, someone jerks your elbow up and down, making it difficult – if not impossible – to control your writing. Or maybe you tackle something complicated like walking across a room. You lift your leg to begin that first step when a mischievous troll screws up your balance by pulling your foot inward, causing you to land on the side of your foot and desperately search for stability. Simultaneously, some imp twists your knee while your hip dips and swings in a motion that would swirl a hula-hoop.
Welcome to my Dystonia!
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 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.
When I was a little girl, my mom taught me the importance of showing up for the party. Boy, was she right!
As I embark upon my second trip to Capitol Hill as a Dystonia Advocate, I reflect upon what this journey means to me and from whence we came. Of course, it’s an honor to speak for Dystonia and interject our issues into the legislative process but there’s even more beneath the surface. Dystonia Advocacy Day is an awesome display of the power of unity, which goes to the heart of our community and is precisely what we need to fuel our hope for a cure. Though Dystonia often feels like an amalgamation of different conditions, we stand strongest together. We share an imperative of unity of spirit, purpose and action.
Am I able to use the gym? The questions people ask! Heavens, I inhabit the same world as the rest of you…or do I?
Every clan enjoys its special celebrations. In my extended family, April marks Parkinson’s Awareness Month and I’m offering up a treat in honor of the occasion.
Fortunately, 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.
I don’t buy printer ink without carefully investigating my options. You can only imagine how I approach a decision like bilateral brain surgery. Not a grain of sand is left unturned in my lab of microscopic dissection. Popping a new pill is one matter. A potential starring role in a two act surgical drama involving a drill, a brilliant neurosurgeon and two electrodes about to take a slip into my brain for an ongoing adventure of electrical proportion is quite another story!
Paddy Doyle was one of the first people I contacted when I launched my blog and began a life of Dystonia activism. A well-known disability activist in Ireland who also battles Dystonia, Paddy seemed the perfect place to head for advice and logical choice of mentor. Though it took months for him to post a link to my blog on his website, we became fast friends. He even has a superhero power: he makes me laugh!
Tuesday 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.
To my surprise, I’m frequently met with a recalcitrant rider reluctant to surrender their seat until discerning the precise nature of my disability. Even when I offer my legally unnecessary explanation, many a New Yorker either doubt my word or dispute my claim in groundless defiance of city ordinance. Then again, my fellow residents aren’t known for their manners let alone random acts of kindness. Seems utterly beside the point that the law’s on my side.
Typical of most females is a love affair with leather delectables that grace the feet. My friends pontificate over the perfect match of shoe to garment, agonizing over the slope and height of heel as if they’re solving a complex trigonometric equation. Years ago, I understood that fashion starts at my ankles – when I wear boots at my knees.
I 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.
I chalk up our encounter to fate and consider myself lucky to close out her 
Welcome to my movement disorder family. We’re a motley crew of kissing cousins: Parkinson’s (the family favorite), Ataxia, Athetosis, Ballismus, Chorea, Dystonia, Huntington’s, Myoclonus (not a Greek island), Restless Legs, Tardive Dyskinesia, Tourette’s, Tremor…plus honorary member, Functional Movement Disorder. I’ve never met Michael J. Fox but it’s ironic that he starred in a show called “Family Ties,” which describes our relationship to a “t.”
I recently enjoyed the pleasure of a private recital by Gohei Nishikawa hosted by the Bachmann-Strauss Dystonia & Parkinson Foundation. I didn’t know what to expect from a pianist who shares my condition. Certainly not a transcendent performance by a charming man with a boyish grin and endearing humor whose words waxed as eloquently as his notes.
My “bad day” begins before I encounter the sweltering heat in the station or the deficit on my card. Instead, it starts when I’m on the verge of hyperventilation half a block into my 4-block marathon. By the time I reach the subway, I yearn for a nap – a seat would be nice. But I must stand at the top of the stairs, waiting for the crowd to clear and the guy handing out free Metros to move aside so I can grab the railing to avoid falling on my face. On “bad days,” I find myself at war with a severely flexing foot exercising it’s own agenda and mysterious muscles in my legs jarring me with attitude, every step a precarious leap of faith.
The online dating roller coaster can lurch chills down the spine of the most seasoned Lolita, which I most certainly am not. Throwing my profile into the proverbial haystack hoping to find the needle of my dreams is an exercise of patience on the edge of insanity. Typically, my inbox is populated with suitors I’ll categorize as spam.
On the rare occasions when I stumble upon a prospective Mr. Right, I harness my inclination to unload my Dystonia during our getting to know you minutia. Part of me is thrilled to live such a fanciful existence. No speaking, no walking, if only we could flip cyber reality with everyday life! Eden doesn’t last for long. After a few paragraphs of swordplay, most men are eager to leap to the phone and hear my voice, producing an explosion of panic that’s a 50 lb. rock at the pit of my stomach. Used to flipping cushy sentences in emails and IMs, telephone talk is a venture into an uncomfortable world.
Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need. Similar to Romeo and Juliet, we lack the official seal of approval and must carry on our affaires de coeur “off label.”
Ironic inconsistency is expected. When I visit my neurologist, my brain somehow instructs my muscles to behave. I pace the hallways with an entourage of physicians, silently willing my muscles to act up and take responsibility for their persistent shenanigans. On dates – talk about nerves – I tip to the other end of the spectrum. Maybe next time, I should invite my neurologist to join us for drinks. Murphy’s Law meet my Dystonia!
