Fuck it--I Love You: My Life with "Tourette's-like Symptoms"

In response to a potential "hysteria" outbreak at an upstate New York High School. About 12 teenagers were exhibiting "Tourette's-like Symptoms".

DISCLAIMER: I am neither doctor nor medical scientist. I do not have a stack of research from which to cite that I may quantify my observations. I can only tell you my story. 

 

In high school I developed Tourette’s Syndrome--or something like it. I was months into my unnamed affliction before I realized it wasn’t going away, and may have been getting worse. I didn’t quite decide to monitor myself so much as that was my natural problem-solving tendency at work. I didn’t keep journals. I didn’t speak to professionals. My tics were not spoken of on national television. I am unsure how many of my classmates were aware there was something more-than-a-little-odd happening to me.

 --fuck-it!…fuk-fuk-fuk…

I had heard of Tourette’s as the profane outbursts of younger children. I’m unsure if they tend to grow out of it, but I have also heard of teenagers and adults struggling to live productive lives with vocal and physical spasms. Now “Tourette’s-like symptoms” in upstate New York are the topic of discussion, and whether it is caused by poison or psychology. While I cannot comment on any other case but my own, mine, I know, is firmly rooted in my psychology.

And simply knowing that “it’s all in my head” does not make it go away.

--LOVE! …luv-luv-luv-you…

My tics began sometime after my father died when I was fifteen. I had been seeing a therapist to assist in my transition through adolescence following my parents’ divorce two years previous. I had been living with my father and doing my best to put my mother out of my mind whenever her presence wasn’t forced upon me with another guilt-laden phone call or visit. Then I woke up one Saturday morning to my mother walking into my room to tell me there was an accident. My father was never coming home. A week later the funeral was had and she was moving back in. It was HER house and we were HER children.

--HATE! you…hay-hay-hay…

Within a month I stopped seeing my therapist. My mother’s opinion that it was quack and my need for it ridiculous weighed heavily on my need for her approval. The effort it took to remind Mom to take me to appointments and fill my medication felt like acts of defiance, and that I could not do. More like a dog to a master, I was loyal more to my mother’s sensibilities than to my own. From a very young age, I was well-trained to take my concerns and accomplishments to Mom (not to Dad, as that would be an act of betrayal), by whom deep concerns were summarily dismissed, where accomplishments met indifference or irreverence.

--Chad-Chad!

Yet it was Dad who taught me to spell my name. J-U-L-I-A. I was four years old and I was so proud of myself that I ran from my bedroom, down the long hall of the double-wide, to my mother in the living room “Mommy! I can spell my name! J-U-L-I-A!” I shouted in my tiny screech.

 “Oh. Well that’s good, honey.”

I can still feel how the wind escaped my lungs as my powerful enthusiasm met the thud of indifference.

I was 10 years old and in the fifth grade before I learned to spell my middle name, Marie, when the first three questions on a spelling test were First, Middle, and Last names. In the stress of the moment, I couldn’t recall that I had known a girl named Anna-Marie, but, of course, that would be her name—not mine. I hadn’t cared about my name. I couldn’t.

From the thud of indifference at one end of my mother’s spectrum, it wasn’t long before I found the breadth of her dysfunction. Perhaps a year later, no more than two, it had occurred to me that my two brothers were named for other people. I had learned my PawPaw’s real name was J.L. --the initials were his name, which seemed to be common practice among my Alabaman kinfolk. So my brother James Lucas must be named for PawPaw. Our older brother, John Paul, must have been named for somebody, too. In our quasi-catholic household, I had heard the name, but I wasn’t sure, so I settled on my Uncle Johnny as his namesake.

My mother was amused by my clever observation and my mistake with John. Then I asked, “So who’s Julia? Who am I named after?” to which she elaborated on how I was supposed to be named Maria like my aunt, but that my father pitched a fit because then there would be two Marias. Now, she’s telling this to the daughter who first thought her brother was deliberately named for their uncle, so I didn’t fully believe the story, but I was too afraid to check the facts and ask Dad. Such would be an act of betrayal and require that I entertain certain truths I was not yet prepared for.

“I just liked the name Julia” was her final answer.  I accepted it, but was not satisfied, for my name then seemed far too arbitrary in light of my brothers’ namesakes: Deceased grandfather! The POPE for crying out loud!

I set out to find a name for myself more befitting the person I had wished to become. I spent a quiet afternoon stringing together phonemes of Sai, Phay, Sky with --lynn, --ia, –ann, and came to rest with Sheyenne. In all likelihood, I had heard the word on my family’s trip to Yellowstone when I was two, where it rattled around in my subconscious to be extracted four years later.

I liked my new name. I danced with it. I pranced with it. My soul could wear it like a new hat. My life made sense with my new name. Sheyenne.

 My mother came in and asked what I was so giddy about.

“I don’t want to be named Julia anymore! I want to be named Sheyenne!” I shouted in my tiny screech. My euphoria made me forget my fear, my loyalty, my ever-vigilant mind toward my mother’s sensibilities.

“I GAVE you that name! You are going to KEEP it and you are going to LIKE it! Do you underSTAND me!”

Text does not grant justice to the force of impact of the swift verbal bludgeoning those words effected. But imagine, and some may know, the feeling of a young boy –innocently, and with complete trust—telling his chauvinistic father he wished he had been born a girl. Imagine the reaction of that father, the fear of his son (and all that may mean) no longer being his son, the fear of explaining to his own chauvinistic father why there is now a granddaughter where a grandson once stood. Imagine that fear overriding any sense of patience a parent would have for the vulnerable creature in their care.

--Luv-luv-LOVE-you…

--TRAVIS!

--Tr-Tr-Tr…

I never brought Sheyenne up again. I woefully played with her in my imaginings. A storyline borrowed either from a book or movie, about a damsel held captive waiting for a hero to rescue her, gave me the place to put Sheyenne for safe-keeping. Away from my mother’s jealousy, my imaginings would have her caged. Bound. Confined. Locked away.

It was the binding of my young spirit which caused my Tourette’s. After two years as a teenager of slowly, cautiously, stretching my wings, believing the cage was still around me, I had not yet realized my full span. My ability to fly still untested, I woke up to find that my hero was dead and I obediently crawled back to my place behind the bars.

--Brandon!

Had someone been listening closely, they would have heard me stammer one to a few words beneath my breath. While my tics seemed to be of different categories: profanity, passions, or particular boys’ names, they fell into the general group of Things Which Would Deeply Embarrass Me If Someone Heard Me Say Them. These tics had a very specific purpose: to dislodge a train of thought which was currently causing me pain. The tic itself was highly involuntary while the immediate relief was gratifying. If I allowed my associative thinking to hop from one topic to another, I would eventually land on a memory I wish I didn’t have.

--I love you! …Brandon!

A fake cough or throat clearing would sometimes be required to hide what I may have just said. Brandon and Chad were classmates of mine, as good as friends. Embarrassment was dangerously close as they were occasionally in the room when I would tic, unable to control which words came out of my mouth. (I don’t know who ‘Travis’ is, specifically, it was a popular name and I encountered about six over the course of a day.)

Today I still tic, but not nearly to the degree I had been. At work, I’ve developed a habit of vocalizing most frustrations with legitimate curses thrown about—a defense mechanism for my defense mechanism—so when a tic inevitably slips, no one bats an eye. In the car, alone and more able to let my tics do as they may, I will shout full sentences just to banish a stubborn synapse, compulsively cross myself (never been religious) or kiss my fingers as if I had someone to blow it to. 

Meditation is helpful. I seek out the shards of shattered psyche which have been quietly chafing against my soul. I acknowledge myself, asking how I was broken in this way. I ask myself how I can be made whole again. The miles that I run outside (3 on my lunch break, 7 every other Sunday) work much like yoga. It is just me and my music, and time and space, and I’m accomplishing more than I ever thought I could. Sometimes, at full power, full stride, I feel like I’m flying.

Recently I have been watching Rio with my young daughter. While it’s an adorable movie, one image strikes as a painful cold spot within my torso but separate from my body: the green parrot spinning around within the cage “I’m a pretty bird! I’m a pretty bird!” and when the cage is finally opened – he keeps spinning.

That is Tourette’s as I know it.

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