Create it Away
© Copyright 2018 by Katie Danis
it Away" explores my lifelong experience with Tourette Syndrome.
It focuses on how the condition intertwines with my memories of
childhood, approaching a frequently misunderstood topic with humor
The first time I got my leg stuck in a broken drainpipe, I was naked. As my preschool teacher dismantled the pipe to free my entrapped (and freshly nude) limb, a new crease crept from her cheek to her chin. She was twenty-five and had eight wrinkles. When school began she had zero. (In my defense, I held direct responsibility for only seven, and I contest the validity of the evidence that charged me with three.)
When my parents regaled Dr. McGoogan with my laundry list of strange behaviors,1 he smiled rows of perfect teeth like books facing the wrong way on the shelf. Glossy white pages tumbled open to words like “creative” and “neurodivergent” and “comorbidity,” nice words with nice “t”s to turn over and over on your tongue. As I sat on my hands and swung my legs, my eyes wandered over the upside-down scrawl on his black-and-white sheet: Diagnosis: Tourette Syndrome.
Tourette Syndrome (also known as “Tourette’s” or “TS”) is a neurological condition “characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics” (National Institute of Neurological Disorders and Stroke). TS involves at least one vocal tic. It is hereditary and comorbid with OCD and ADHD. (If you have all three, congratulations! You win a can of Campbell’s Neuropsychological Alphabet Soup.) Approximately 200,000 Americans live with TS. The condition is named for neurologist Dr. Georges Gilles de la Tourette, who discovered it in 1885.
I would learn all of this later.
For years, I knew Tourette’s as my built-in brain gremlin, the voice that commanded me to bang my head and clear my throat and twist my eyebrows until the hairs pirouetted like helicopter seeds. Yet the voice told me to do not-so-suffocating things, too. Spinning in the rain until the world smeared like watercolors. Scaling beech trees despite my fear of heights. Disrobing, jumping in the inflatable pool on the playground, and then investigating a shattered drainpipe. (For the record, the school gave me an award for exposing that public health hazard. However, the accolade’s name – the “Nudie Beauty” award – somewhat undermined its résumé potential.2) I breathed adventure, ticking and ticcing towards the next discovery like a neurotic Indiana Jones. No matter how many times I lost my path, the chatter of compulsions and curiosities followed me through the maze. A constant, if unsolicited, companion in exploration.
The DSM-V classifies Tourette’s as a tic “disorder,” a problem that requires treatment. Something broken. Something not-quite-right. Something you can pinch and tuck and drown in Xanax and proclaim, “All better.” Dr. McGoogan and my parents carefully floated words towards each other like day-old helium balloons, stiffly volleying them as they trembled in the air. I glanced back at the sheet, turning the word over on my tongue. Tourette. It tasted French, and I liked it. I also liked that it contained the word “tour” because a tour promised an adventure: an old-smelling art gallery, a rain-scented path through a tangle of beech trees, or, best of all, a library with a twisty staircase like the one in Beauty and the Beast. I lived for the labyrinth: sometimes I was Theseus; sometimes I was Daedalus; always I was David Bowie, magic-dancing through the shelves.
However, not all magic twirls through tangled bookshelves and sings in the rain and sparkles like fairy dust and releases chart-topping reggae fusion singles.3 The voice in my head is my curse. I felt like Aurora in Sleeping Beauty: bewitched at birth to prick my finger on a spinning wheel (again and again and again and again). But this curse lurked in my DNA, incurable by kiss (true love’s or otherwise) or prescription. I wondered if a demon lived inside me. The Catholic officiaries in my community did not help to ease these suspicions, instead reprimanding me for asking too many questions in Sunday School (“If Noah’s ark landed in ancient Mesopotamia after Pangea fractured, then how did wallabies get to Australia?”4 and for repeatedly clearing my throat during Communion.) I became a disciple of loneliness, resigned to weave through the labyrinth with only a friendly, twitching demon by my side.
There’s a saying that goes something like, “You are never so alone as in a crowd.” (I don’t know who said it. Maybe I did.) Tourette’s has a way of making you feel alone, like you’re onstage squinting through the spotlights at an audience that won’t look you in the eye. When I tic in church, I am alone. When I tic in school, I am alone. When I tic at the supermarket or the committee meeting or the hardware store, the library or the parking lot or the elevator, the soccer game or the Christmas party or Carnegie Hall, I am alone. Then I feel a different kind of lost, the kind that makes you hug your knees under the nightshade, or where the path lies before you (all bright and alive) but you just stare, stare, stare.
The kind of lost where you don’t want to be found.
So I discovered ways to lose myself.
When I funneled all of my focus into an activity, the tics lessened. The voice in my head did not go entirely mum, but it quieted. Stilled. Listened. When I sang, the demon nodded its head to the beat. When I wrote, my fingers danced and twitched about keyboard like a glitching Franz Liszt.5 When I ran, my legs windmilled in a familiar ticcing rhythm, the demon heaving and straining until, eventually, it fell into pace. In those breezy moments, I was free.
Of course, exercising my creativity will not exorcise the voice in my head. I could sprint from Greensboro to Galilee6 and Ol’ Faithful Azazel7 would be waiting for me at the finish line. I will never outrun my demons. All I can do is enter the labyrinth again and again, and Bowie knows it isn’t a day outing. However, I’ve realized that the mutation which condemns me to glitch like an infected Lenovo ThinkPad also instills in me insatiable curiosity and an obsessive drive to improve the world. (Not to mention a proclivity for punning that may incite my brother to strangle me one day. I can’t help but put some antics in semantics.8) Like Harry Potter’s psychic connection with Voldemort, my curse is also my greatest blessing. (Except, unlike Harry, I can’t innately speak to snakes. I had to take a class.9)
Here’s the thing: everyone’s fighting something. That’s one of two things I know for sure. (The other is that oatmeal raisin cookies were created by the CPSU during the Cold War to lower American morale. They look like chocolate chip cookies and taste like trust issues, and that’s a fact.) But in my extremely short time as a moderately successful human (if we measure success by the amount of peanut butter a person can consume in one sitting10), I find that the worst of the human experience can bring out the best of human ingenuity. (Not in the case of the oatmeal raisin cookie, but sometimes.) I accept that the voice in my head is here to stay and, more importantly, that I don’t want it to leave. I’m rather attached to it. Besides, it gets lonely in the labyrinth. It’s nice to have the Minotaur (Minotourette?) for company.
When I say that getting lost is my greatest gift, I receive a dismissive waving of hands. (“Nice try, Katie. Your inability to locate your living room without Google Maps11 is not a superpower.”) But the subtle art of losing yourself is just that – an art, the product of excess creative energy that can be channeled through piano-playing, marathon-running, poetry-writing, opera-singing, and the occasional drainpipe misadventure. “Disorder” implies “wrong,” but there is no right way to be. Heredity gave me a reservoir of nervous energy, and rather than dulling it with dams and Dexedrine, I run faster, write longer, sing higher, am kinder. I create it away. The alleles that urge me to touchthefloortouchthefloortouchthefloor also afford me laserlike focus, letting me lose myself in letters, people, paintings, in winding woods and twisty staircases. I get lost to find myself and to live with the self I find. The tics and twitches are me like my matrimonial devotion to Justin’s chocolate hazelnut butter is me or my passion for making academic rap videos is me or my use of the vocative comma in email greetings is me or my desire to befriend both Oscar Wilde and Ernest Hemingway so I can make jokes about “the importance of being Ernest”12 is me. I do not succeed despite my condition; I succeed13 because of it, and to mute it is to blunt my creativity, my curiosity, my identity itself.
So when Dr. McGoogan drifts a stale red balloon with an “Rx” scribbled behind a boldfaced question mark, my mom stands. She plucks the question out of the air and squeezes. It pops with a flat crack and she flicks it onto the floor. As she strides toward the door, tugging my dad along, she pauses. Turns. Smiles. “Let’s go, Katie” she says. And for once in my life, I obey.
The first time I got stuck in a broken drainpipe will not be the last. I walk into the labyrinth again and again, a restless adventurer getting lost, trying and testing and ticcing and knowing that I’ll never get out, that I don’t want to, that all I can do is stand at the crossroads of Was and Will and explore the maze in between, and if I am wrong, at least I am myself. That’s the only life I want to live.
Now, if you’ll excuse me, I need to find my way down from this tree.
"Katie Danis’s proudest achievements include devouring two watermelons in one sitting, setting the plot of Oedipus Rex to the tune of “Rude” by Magic!, reading Harry Potter and the Deathly Hallows 72 times, and running the research/commentary blog www.probablylostkatie.wordpress.com