Tourette’s Syndrome, A Personal Account

Before detailing my personal experience with Tourette’s Syndrome, here is a current medical definition and description of the condition and its symptoms.

Tourette’s Syndrome

(Gilles de la Tourette’s Syndrome)

Tourette’s syndrome is a hereditary tic disorder that begins in childhood. The syndrome is probably autosomal dominant with variable penetrance; the specific genetic abnormality is unknown. Male: female ratio is 3:1 Simple transient tics and Tourette’s syndrome form a continuum or spectrum.

Symptoms and Signs:

The movement disorder may begin with simple tics (eg. facial grimacing, head jerking, blinking, sniffing) that progress to multiple complex tics, including respiratory and vocal ones (eg. loud, irritating vocalizations; snorting.) Vocal tics may begin as grunting or barking noises and evolve into compulsive utterances that are often loud or shrill. Patient’s may voluntarily suppress tics for seconds or minutes. Coprolalia (involuntary scatological or obscene utterances) occurs in a few patients. Severe tics and coprolalia are physically and socially disabling. Echolalia (immediate repetition of one’s own or another persons words or phrases) is common. 

The Merck Manual, eighteenth edition. Page 2379 Published by Merck Research Laboratories, Whitehouse Station, New Jersey. 2006

Tourette’s Syndrome is a genetic neurological condition, one which I am pretty sure I inherited from my maternal grandmother. Though she was never diagnosed (what with mental conditions being stigmatized in her day), even before my diagnosis I knew whatever my problem was, I shared with her.

Before my diagnosis, I saw several alleged “specialists,” including a hack who gave me caffeine and Oreos. His treatment focused superficially on my fear of rodents, which still beleaguers me to this day, despite his half-hearted efforts. After that, a full psychiatric and intellectual evaluation was conducted by a classicist psychologist, who, with no diagnosis, brought my mother to tearful hysteria, postulating that I may need a neurological workup (a highly invasive procedure involving pins being inserted into the brain). He, however, could not degrade the results of my IQ test, which were quite exceptional; the running theory about that guy is that he resented that his son played softball with my sister and me, our family being middle class.

I at last thought that maybe the trials and tribulations of being picked on by my peers would end when I was ten, the day I was excused from a day camp I was attending to visit a neurologist named Doctor Joice Africk at Tulane University Hospital. She spent all of ten minutes with me, having me write my name and draw a smiley face and a couple of other minor tasks. This was probably to put me at ease and eliminate what is known as “doctor’s office syndrome,” which makes Tourette’s Syndrome very difficult to diagnose. Kids, used to doing their best to suppress their motor and vocal tics, will often have an outburst in the car with their parents and then show none of their usual symptoms around the doctor.  Dr. Africk quickly, without a doubt, informed my parents that I had a textbook case of Tourette’s.

My fifth-grade year, I returned to school with letters from my parents to all of my teachers informing them of my diagnosis, explaining the condition as the doctor had, and requesting that they sensitively inform, and, in their own words, explain to my classmates. All of my teachers did as asked, some sending me to the office, some elaborately planning for the principal to summon me through the intercom at the proper time. After this, teachers and other faculty were far more understanding. My classmates continued to cruelly ostracize me. Of course, if reprimanded, they saw to it that the next school day was particularly miserable for me.

I was placed in the gifted language arts class in sixth grade. My regular sixth-grade teacher for that class period was out sick, and her language arts class was dispersed. Miss O’Dwyer, the gifted teacher, was thoroughly impressed by my voluntary, active participation in a class that I hadn’t spent a moment in, or been at all prepared for. She requested my presence in her class for the rest of my time at Audubon Montessori.

When I began seventh grade, the real nightmare began for me. Despite timeless thought, effort, and research on the first day of school on what to do, where to sit, and precisely what to wear (though it was an annex of Audubon Montessori I somehow thought that the eighth graders above me would, at last, accept me), I was met with laughter as soon as I entered the cafeteria that first day. I discreetly disposed of the meticulously chosen blouse and denim skirt in a dumpster near my home.

To add insult to injury, I was assigned the very back locker in the already chaotic, cramped locker room which all seventh and eighth graders shared. Each day, at least before and after school, I trudged through what felt like some circle of hell, holding back tears and doing my best to ignore the taunting impersonations of my vocal tics coming at me from every direction. The absolute worst day of my youth was when my father arrived early to pick me up from school. As I was enduring the mockery, rushing to pack up, I heard one of my adversaries cry out, “S**t! Her dad’s right there!” Neither he nor any parent should have to see such a thing happening to their child.

My last two years at Audubon Montessori were virtually unbearable, particularly because statistically, for boys and girls the tics and other symptoms are at their worst during puberty. Although more boys are diagnosed with Tourette’s Syndrome, the severity of its symptoms is far worse for girls. I also found that, even later on, menstruation was a major trigger for my various symptoms.

My reputation preceded me with Holy Name and Newman students because I went out with a couple of boys from these schools whom I met at  The Valencia’s 7:00s and 8:00s Icebreakers (as the middle social club was called). It was there that I learned that people I would not meet until high school knew me as the “Twitch B**ch”. One of the aforementioned dumped me out of embarrassment and due to the ostracizing he underwent for not hating me. As an adult, I have taken it upon myself to rob these snide brats of the nickname and take away its malicious power by turning a variation of it into my personal tagging name. I  plant my tag, the former weapon against me, in bathroom walls in bars all over Uptown in hopes these now fully grown, chastising jerks see it; a taunting reminder to them that I am alive, well, and don’t care about them. They, on the other hand, become horribly indignant if  I am anywhere they are, while I proceed to have a good time and choose my jukebox picks strategically to push their egocentric buttons.

During the turbulent days of my youth, my parents’ numerous friends from jogging in cross country races and in Audubon park were my friends primarily. They liked me and got a kick out of me, finding me precocious. The only trouble there was the fairly common manifestation of Tourette’s that will cause people to involuntarily stare at the breasts and genitals of other people; the more wrong I knew it was to look, the more my Tourette’s compelled me to. The condition, in general, is of an adversarial nature. If I am in a loud, brightly lit place, motor and facial tics (twitching, blinking, etc) run rampant for all to see. If I find myself in a dark, quiet setting such as a movie theater, enter the vocal tics (hiccup sounds, throat clearing, and other disruptive, unpleasant sounds). I have been eternally excused from jury duty because one of my vocal tics could be mistaken as a reaction, influencing other jurors, and interfering with the due process, something which I take very seriously.

Usually, a tic begins with what some call an obsession (hence Tourette’s Syndrome’s vague categorization as an obsessive-compulsive disorder), an unpleasant thought or image that lingers in one’s mind until they succumb to the compulsion to make tic. This alleviates the mental discomfort, but then others’ response to the tic often becomes the problem, causing sadness, stress, and anxiety causing further tics. It’s a vicious cycle.

Often one can only leave a place if their symptoms have become too much of a problem.

I learned the hard way how one-sided crushes I developed on boys would be received: hatefully, with exaggerated disgust, and at times bringing forth decades of wrath and mockery, often accompanied by the periodic poisoning of close friends against me. An extreme example of this crude, judgmental phenomenon is a guy named Mark, upon whom, during a particularly regrettable lunch period during eighth grade, I developed a crush out of sheer boredom. A female friend of mine in his grade, bearing good intentions, approached him and told him I found him I found him attractive. I shall never forget the hateful, spite ridden look on his face. I quickly sent my friend back over to him, recanting. It was too late. He continued to harbor this grudge against me through the rest of middle school, high school, and time we spent attending the University of New Orleans, provoking his friends to mock me and even taking a susceptible, eager for acceptance, mutual friend out for a day in the sun, playing hackie sack with the “cool” kids. My friend would then ignore me as well as other full-time friends of his and mine for a week or more. When said friend finally spoke to me again, it was all about “hanging with Mark at The Butterfly.” All of this for a momentary lack in taste.

Naturally, for high school, I chose DeLaSalle, a former all-boys’ Catholic school turned coed after the closing of several girls’ schools in New Orleans, including Mercy and Holy Angels. I wanted to be around boys. I wanted uniforms since public school dress codes did not favor my unusually long legs. I did not want to worry about fashion. Most importantly, I wanted to be as far removed from the cruelty of my peers at Audubon Montessori, from which I finally departed after completing eighth grade.

My freshman year at DeLaSalle was, at first, almost bearable. People made fun a bit about my voluntary solitude; I was terrified of trying to interact with or befriend anyone. Fortunately, at that point, the only former Audubon classmates were quiet and definitely feeling out of place themselves. I had endured a full athletic physical during freshman orientation with intentions of going out for track and cross country; I had run the 400-meter two years in a row for my middle school track team. After all the  unpleasant blood work with faculty and administrative political animals barging in and out of the room where the physical took place, I entered the first cross country team meeting of the year, as I had been instructed at orientation, only to feel how unwelcome I was hit me like a ton of bricks with a hint of CK1. These girls wanted nothing to do with me. I turned tail, never to return.

Some part of me thought I could do alright in the theater program. I mounted the stage with confidence and read my audition scene for the stage adaptation of Of Mice And Men, which would be the first school play of the year. There was only one female role and the two choices were clearly more experienced and even alternated performances, so I never took that personally. However, after the audition, I had what seemed to be a very nice conversation with a guy from my AP Geometry class, who, as it turned out, also wasn’t cast. He showed his true colors when a rather boisterous female classmate, not anticipating the impact of her actions, blurted out during a group activity how I found him cute. This was only the beginning of assaults on my dignity and intelligence at the hands of the idiot’s equally idiotic friends. “Hey, Margaret! He REALLY  likes you!” Cue the histrionic display of woe by the guy in question. I stopped pursuing crushes at school after that.

My youth was not about social acclimation or rites of passage; it was war, and not unlike war, hellish. I ran across expansive campus commons, still making bell and avoiding the adversaries whom I was forced to profile while coordinating my routes of avoidance. I was fortunately rigorously trained in cross country since age eight by my caring, supportive father.

I was so detached, broken, and robbed of most hope the final semester of my senior year in the embarrassingly preemptively promoted class of 2000 that I gave up. I had some serious accomplishments in the playwriting field working with the director Mikko of Mikko Presents… Youth (in the case of the Le Chat Noir show comprised completely of my work). Some people were feebly apologetic, but the damage was done. I barely graduated.

The experiences of my youth continued to haunt me, and many bartenders try to refuse me service (as if my tics could even resemble drunk). I self-medicated and felt deserving of nothing. I am unsure exactly when I developed Borderline Personality Disorder, but, my mutilated self-esteem led me into scenarios as awful as drug addiction and a terribly abusive relationship. Many people end up in such predicaments for various reasons, but in my case, I felt worthless and undeserving; the perfect mindset to fall under the duress of a monster who fed off of making me feel wrong and always to blame. However, that is a whole other matter.

In closing, I would like to say to children, adults, and parents of children with Tourette’s Syndrome, do not let the ignorance of others bring you down. This is not a punchline, but it does not have to do the damage it did to me. Today, awareness is much more common, thanks to The Tourette’s Association of America and other awareness groups. It’s further spread by celebrities speaking out for themselves and others, including Jeff Goldblume and British actor Matt Smith (the 11th Doctor of the television show Doctor Who, whose cause is Tourette’s Syndrome awareness). To those who have Tourette’s: do not let the snobbery of others not happy with themselves break you; and to those who don’t, but may know or meet someone with this condition, please try to understand, and stand up for those unjustly ostracized for a genetic neurological disorder.

Margaret Marley is a regular contributing author for Big Easy Magazine. Be sure to check out her interview with Duke Stewart, as well as her other artist profiles and articles here.

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