Answering my most Frequently Asked Question
Answering my most Frequently Asked Question
What does it feel like to have Tourette syndrome?
n.b. Welcome to all those new individuals that have tuned into White Noise since last week! If you’re reading this, but haven’t subscribed, join hundreds of fellow thoughtful, curious folks by subscribing below.
n.n.b. Today’s broadcast comes with yet another dash of novelty: A new section! Introducing The Best of the Rest. Moving forward, The Best of the Rest will accompany White Noise and contain a short smattering of articles, happenings, news, and other things that made me think or smile over the past few days.
Earlier this month, I set off alongside more than three hundred peers from over twenty countries on the Write of Passage.
An intense, distributed, five-week-long program, Write of Passage seeks to imbue its students with an appreciation for the unique leverage that online writing can generate and its ability to serve as a catalyst both personally and professionally. Specifically, the course promises to share “a step-by-step method for publishing quality content and distributing your ideas to your professional network, leading to unexpected opportunities and increased serendipity in your work and life.”
I am nearly halfway through and I can confidently say that it has underpromised and overdelivered. Through it, I have met some wonderful new friends, cultivated a few potent ideas, and further sharpened my writing process.
Each week, we are given different assignments that aim to stretch our comfort zones and challenge our preconceived notions about what constitutes “good writing.”
Our first assignment was to pen a response to the below:
“What is the definitive answer to the question that people ask you most often?”
When thinking about what I was uniquely qualified to answer, my mind drifted to a quote from late writer Jorge Luis Borges:
A writer—and, I believe, generally all persons—must think that whatever happens to him or her is a resource. All things have been given to us for a purpose, and an artist must feel this more intensely. All that happens to us, including our humiliations, our misfortunes, our embarrassments, all is given to us as raw material, as clay, so that we may shape our art.
Inspired by Borges, I sought to use my “humiliations…misfortunes…embarrassments” as fertilizer (or perhaps more appropriately, manure) for my garden of prose. I took the raw material that is my unique symptomatology and endeavored to describe the struggle that is my life with Tourette syndrome.
Though in my past writings I have obliquely touched upon my Tourette, what follows is my attempt to squarely describe the visceral frenzy of my everyday experience.
Every day, my spasms beget stares and my grunts give rise to gawks. I intimate from these expressions, gestures, and jeers--both spoken and unspoken--the following common questions:
“What are you doing?”
“Why did you do that?
“Are you okay?”
“What the hell?”
“What’s wrong?”
“What’s wrong with you?”
These questions and others like them puncture my days, deflate my demeanor, and punctuate my existence. All obliquely revolve around and touch upon the pernicious disorder with which I struggle on an unceasing, everlasting basis: Tourette syndrome.
Defined by the medical community as “a neurological disorder characterized by multiple motor and vocal tics lasting for more than one year,” Tourette syndrome encompasses everything from echolalia, the repetition of words, to coprolalia, involuntarily swearing. Although the media homes in on these components of Tourette, they only present in very few people.
You see, Tourette is a chimera of a disorder. On one day, it can cause you to stomp, shriek, or shout about shit; on another, it simply makes you shuffle your shoes or spring spittle from your mouth. To me, it counts as one of the most unpredictable, inconsiderate, and inconsistent diseases that exists. There is neither rhyme nor reason to its variety of symptoms and no two people who suffer from it are alike.
What began for me in the third grade as simple eye twitches and facial grimaces has since become a cacophony of motor and vocal tics that constantly plague me in my twenty-eighth year of existence. My syndrome takes the opportunity to behave inappropriately at the most inopportune moments. Candidly, I don’t think it a coincidence that torture and Tourette are nearly anagrams.
Above: Outer order, inner uproar.
To have Tourette is to live a life of controlled entropy. It is a careening, a hurtling through life, a mad dash not only to function, but also to keep neurological frenzy at bay.
It is a volatile sanity, an outlandish existence, a rush of frantic energy that can neither be controlled nor properly harnessed. It is a flubbing and fat fingering through life; one of harried chaos and of jostlings that constantly threaten to interrupt thoughts, words, movements, and existence, itself.
It feels like life lived at the precipice, the intersection of control and chaos; that subconscious, instinctual realization when you know you’ve arrived at the proverbial edge.
It is the skier careening downhill, narrowly missing a tree or ridge.
It is the child unsteadily learning to ride a bicycle, knowing that a crash and a bloodied knee are imminent.
It is the duckling projecting an image of serenity while pedaling furiously under the water’s surface.
It is the soldier, prone in his foxhole, trembling as bullets zip and whiz all around him.
It is death by a thousand turbulent minutiae; a life lived as a perpetual accident on the road about and around which people rubberneck.
By themselves, most individual tics aren’t injurious or harmful. However, much like water slowly dripping onto and eroding rock, over time they inflict serious damage. They compound and slowly drive the afflicted to exhaustion, frustration, and acquiescence.
I am a grizzled veteran of this long, grisly, ongoing war. My tics constitute the collateral damage of my personal war. This is not conventional warfare, rather, neurological warfare; a war waged across synapses and axons, soma and dendrites, its setting--my neurochemistry--lit up by electrical barrages of dopamine and serotonin. My wounds result from neurochemical events and leave invisible scars. Whether it be the suppression of a violent head jerk or a guttural grunt, my Tourette syndrome forces me to do battle every second. I have fought this good fight since the age of nine. As Publilius Syrus said in his Sententiae, “Pain of mind is worse than pain of body.” As one who knows mental and physical pain, I can say that the ache of a broken brain throbs more acutely than that of a broken bone.
No matter.
By God, I shall keep fighting.
For more on Tourette:
Standing Firm — A chronicle of my experience as a Tourettic ballboy at the U.S. Open
A Glaring Problem— A lively reflection on the outset of my time with Tourette
The Best of the Rest
At my core, I am an information junkie. Addicted to the rush of my brain’s pistons firing on all cylinders, I actively seek out knowledge that allows me to ride high on waves of cerebral delight.
Each week, the Best of the Rest will contain a short smattering of articles, happenings, news, and other things that induced such thought and happiness since my last writing.
🇪🇬 A Virtual Tour of Ramesses VI’s Tomb:
Egypt's Tourism Authority is virtually opening the Valley of the Kings to the public through a 3D tour. From the comfort of your living room, you can now stroll through corridors of Ramesses VI's tomb while admiring the intricate hieroglyphs and astronomical scenes along the way. Once inside the burial chamber, you can even take an up-close look at the former Pharaoh's restored sarcophagus.
♿ The 30th Anniversary of the ADA:
In 1990, the Americans with Disabilities Act—the ADA—was passed by Congress and signed by President George Bush, Sr. This landmark civil rights law extended the right to access public places and businesses to all people with disabilities, enabling them to participate in the same everyday activities as other citizens.
👔 One of the greatest cover letters ever written:
Dear Sir:
I like words. I like fat buttery words, such as ooze, turpitude, glutinous, toady. I like solemn, angular, creaky words, such as straitlaced, cantankerous, pecunious, valedictory. I like spurious, black-is-white words, such as mortician, liquidate, tonsorial, demi-monde. I like suave “V” words, such as Svengali, svelte, bravura, verve. I like crunchy, brittle, crackly words, such as splinter, grapple, jostle, crusty. I like sullen, crabbed, scowling words, such as skulk, glower, scabby, churl. I like Oh-Heavens, my-gracious, land’s-sake words, such as tricksy, tucker, genteel, horrid. I like elegant, flowery words, such as estivate, peregrinate, elysium, halcyon. I like wormy, squirmy, mealy words, such as crawl, blubber, squeal, drip. I like sniggly, chuckling words, such as cowlick, gurgle, bubble and burp.
I like the word screenwriter better than copywriter, so I decided to quit my job in a New York advertising agency and try my luck in Hollywood, but before taking the plunge I went to Europe for a year of study, contemplation and horsing around.
I have just returned and I still like words.
May I have a few with you?
Robert Pirosh
385 Madison Avenue
Room 610
New York
Eldorado 5-6024
Per my about page, White Noise is a work of experimentation. I view it as a sort of thinking aloud, a stress testing of my nascent ideas. Through it, I hope to sharpen my opinions against the whetstone of other people’s feedback, commentary, and input.
If you want to discuss any of the ideas or musings mentioned above or have any books, papers, or links that you think would be interesting to share on a future edition of White Noise, please reach out to me by replying to this email.
With sincere gratitude,
Tom