Blanket Sea

Arts & Literary Magazine

Month: March 2019 (page 1 of 2)

“What ‘Raising Tourette’s’ Means to Me as Someone Diagnosed in My 20s” by Gretchen Gales

While scrolling through options to watch On Demand, I noticed a show I had never seen before pop up on the screen. It was the recently premiered six-part docuseries on A&E called “Raising Tourettes.” The show follows the lives of kids and teens with Tourette’s Syndrome and the people in their lives.

Tourette’s Syndrome is a neurodevelopmental disorder that is classified by the presence of both motor and vocal “tics,” or uncontrollable mannerisms. There are also comorbid (co-occurring) conditions that can also be associated with Tourette’s such as anxiety, ADHD, OCD, and more. It is a condition that someone is born with but manifests during late childhood through the preteen stage. I’ve recently had an uptick (pun intended) interest in media related to disabilities, primarily Tourette’s. Why? Because after many years of wondering exactly why I was different, my suspicions were reaffirmed when I was finally diagnosed with Tourette’s as an adult at 22 years old.

Here is a quick recap of my life leading up to that point:

At 8 years old, I participated in a church Christmas play as an angel. My role was simple: stand still and smile at the audience. Instead, I kept stretching my neck out like a giraffe reaching for a leaf at the top of a tree. No matter how I tried to stop it, nothing would work.

My concerned parents called the pediatrician’s office for their first available appointment. They were dismissed, saying they were “overreacting.” The second time I went, I was finally referred to a pediatric neurologist, who confirmed that I had nervous tics that would probably go away with age. But instead of disappearing, it just manifested as more tics. Repetitive blinking, head nodding, sniffling, leg shaking, and foot twitching were just some of the tics that waxed and waned throughout my childhood and teen years, some persisting to this day. I also developed anxiety and panic disorder that made it difficult to do new things or to travel.

No doctor, not even the pediatric neurologist, had ever made the connection to my other conditions and my tics as being Tourette’s. It was often dismissed with medication and a follow-up appointment the following year to half-heartedly mention that it could or could not get better or that I just needed to stop watching TV. I eventually stopped going to fruitless neurology appointments and tried facing my mystery condition in secret.

I did a halfway decent job of hiding it, too. I sang in choirs, played several instruments, got good grades, and hung out with my close group of friends. But in stressful situations when my tics and anxiety got worse, I couldn’t hide it. People would ask what was wrong with me or what was going on, but I would deny that the tics even happened. I hoped that by pretending they didn’t exist, my problem would go away. Instead, it made them worse. I would sit in discomfort at concerts, school events, or crowded venues with loud noise and a plethora of people and tried to suppress the tics that were building up in my body. I would make excuses as to why I couldn’t go out and do things other kids and teens found fun. When I would try to get over my symptoms, it wouldn’t work. Not only would I feel frustrated, I felt like a freak. I never thought anyone could understand what I was going through, some sort of medical anomaly.

When old childhood tics and problems resurfaced during college, it was my boyfriend who suggested that I could have Tourette’s. The more I researched about the condition, the more my life started to make sense. The way my anxiety and tics faded in and out of my life, why I suddenly felt the need to have a giraffe-neck at eight, why I always felt out of place. Every day, I am becoming more and more comfortable embracing Tourette’s as a large part of who I am as a person.

Though I was excited to see the show, I was still hesitant to watch it. I’ve often read books or seen movies or shows portraying people with disabilities get overshadowed by the “martyr-parent,” where the focus is completely on the hardships of a parental figure or the “normal” sibling over the person with a disability. It emphasizes people like me as a burden rather than just being a person with different abilities. While addressing the feelings and hardships of caregivers is an important aspect of our narrative, it isn’t the one that should be getting the most attention. Even so, I took a risk and began watching the show.

There are several kids of different ages and genders on the show. All have Tourette’s that presents itself in a different way, but openly acknowledges the fluidity of the condition. The first episode focuses on Kristin (17), Charlee (13), and Kaden (11). The kids are visibly comfortable with their parents and their parents in turn have a lot of understanding for what their kids are going through. Kaden’s mom reveals very early in the show that she also has Tourette’s and coaches and supports him. Kristin’s mom suffers from anxiety issues that make her relatable to her daughter. Charlee’s parents, though visibly concerned and frustrated with how the hormonal changes affect her Tourette’s, express support for their teenage daughter. All of their parents encourage their kids to be open about their Tourette’s while encouraging them to find other parts of their identities outside of Tourette’s.

Not only was I pleasantly surprised by the show, I felt validated and heard through every kid that shared their story. Though the show’s title seemed to imply that it would focus on the hardships of raising a child with Tourette’s, the perspectives of the kids are front and center. It also addresses that Tourette’s is commonly stereotyped as the “cursing condition” even if it only makes up a small percentage of the population. Only one of the kids featured, Charlee, has the tic known as coprolalia that causes cursing and other inappropriate gestures. Throughout the entire episode, I was clearly able to see the very relatable and human features of each kid. More importantly, I could see myself. I saw my fun, geeky, and overly-prepared side through Kristin. I saw the way I threw myself into new worlds like art and music through Kaden’s own enthusiasm for playing the cello. I saw my love for dogs and need for control over the things in my life through Charlee.

The show ends with a screen that encourages people to look up more about Tourette’s on the Tourette’s Association page and reveals that 1 in 100 school-aged children have the disorder. Many of those cases – like mine – are not as severe as those shown on shows like “Raising Tourette’s” and can easily be under-diagnosed or completely dismissed as “not as bad,” so even that small note is an open door for less severe cases to be validated as well.

The only big problem I’ve seen so far with the show is due to production choices to presumably make the show more appealing. Towards the beginning of the episode, we see Kristin finding her classes, a normal thing for her to do. She acknowledges that she must prepare in advance for things that other kids don’t have to do, such as telling her teachers about her seat preferences and having an “escape plan” for when her tics and anxiety get out of control. Shortly after we’re introduced to Kristin, we see a shaky camera finding Kristin in the school hallway having a string of tics against the lockers. There is a pretty unnecessary addition of ominous music playing in the background to drum up the drama. While there are always “high stakes” situations that can happen with Tourette’s related to comorbidity – such as Kristin’s past tic and panic attack episodes – if the goal of the show is to bring positive awareness and understanding to Tourette’s, then they should have used the raw footage without the extra effects.

Nevertheless, the show is a big step to normalizing a condition that many people – even many medical professionals – have zero or a limited understanding of. It is a chance for more people to understand that we can live a happy and fruitful life and a step towards showing others like me that we don’t have to hide anymore.

 

Image source: Red Arrow Studios

 

 

Gretchen Gales is the executive editor of Quail Bell Magazine. She is the author of a children’s book, The Wall (DoDream Organization) and has been interviewed for her writing achievements at Dear English Major, Her Campus, and For Creative Girls. Gretchen’s written and visual works have appeared in The Huffington Post, Ms. Magazine, Bustle, and more.

Art by Lia Pas

“body map”

(An outline of a naked woman is embroidered on linen in the same bone white colour as the linen. She stands legs together, her right hand covering her groin, her left hand palm up, extended slightly to her side. She looks to the right. Her body is covered in squiggles, dots, and lines in blues, burgundies, greens, and greys. Some of the markings are done in thick stitches, some in thin lines. Her belly is clear of markings. Her face is a mask of green lines, feathery lines cover her shoulders and chest. There is a thick band of intricate burgundy stitching around her waist. Her forearms and hands are covered in thick undulant lines. Her right leg has bands of burgundy along the muscles, with small dots around them. Her inner left leg has a thick line of blue running up it, with thin branches spreading towards her outer leg.)

“Hand (paresthesia) 1”

(On bone white linen, there is the faint outline of a hand, fingers apart. The hand is filled with thick dark blue lines intertwining and crossing over. There are finer thin lines in bone white beneath the thick blue lines. At the wrist, the thick blue lines end in strands of thick thread, hanging over the edge of the linen.)

“Neuraesthenia”

(On a pale natural linen, there is the pale outline of a woman’s lower legs and feet, heels together, toes apart. From the soles of the feet, thick red/orange lines coil beneath. From the big toes moving upwards, thick blue and off-white lines rise up through the inner calves and branch off at the knees. These lines coil and intertwine in a brain-like shape, and then move back down in wavy lines like a wide skirt around the ankles.) 

“Neural Overload”

(In the centre of some bone white linen, there is a spine embroidered in a thick satin stitch. Emanating from the spine are thick burgundy lines in an undulant oval shape. This oval is bisected across the middle. In the top half, there is a section outlined in burgundy filled with coiling blue lines and a similar section in the bottom half. The rest of the undulant oval is filled with fine coiling burgundy lines. The spine is very straight, the rest of the embroidery is very coiled and busy. )

“push, pull, and tingle”

(On a deep purple linen there is the outline of a left hand in a slightly lighter purple. The hand is palm up, fingers slightly curled inward except for the pointer finger which is straight. On the pads of the tips of all the fingers and thumb are miniscule white dots. On the tips of the fingers and in the centre of these pads are white knots. These knots are connected to two triangles in lines of white thread, the peak of one directly above the tip of the thumb, and the other peak below the palm. On the left edge of the top triangle is a star shape in light blues and whites. In the centre of the palm is a grouping of tiny golden yellow knots. On the palmar pad of the thumb are tiny light blue knots connected by small stitches in a map-like design. Leading out from the pinky is a similar map-like design in navy blue. Between the two blue map-like designs is an area of tiny purple knots.)

 

Artist’s Statement

I am a multidisciplinary artist who works in text, music, sound, and image. Until 2015, most of my work was performative and incorporated music, video, and movement. In 2015, I became ill with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and was unable to move much at all. I was also so sensitive to sound and vibration that even listening to music was painful. Reading was confusing, and writing extremely depleting. While watching a period drama, one of the women characters was told to “take to her bed and work on her embroidery,” and I thought, “I have taken to my bed. Why not do some embroidery?” My mom had some embroidery materials, brought them over, and I was smitten with the process. ME/CFS demands rest and calm. Embroidery is a slow art and something I find very restorative. 

My initial subject matter when I started embroidering was some of the text/image pieces I had created before my illness based on old anatomical illustrations. It was through these pieces that I honed my craft in hours spent reclining with needle, thread, and hoop in hands. Then one day during a meditation session I began to see all my neurological symptoms: pain, tingling, and twitches, as lines of stitching on cloth. It is at this point I began to illustrate my invisible ME/CFS symptoms and have named this series “symptomatology.” I embroider primarily with cotton thread on linen but have also started experimenting with silk thread recently. For my symptomatology pieces, I start with the shape of my body or whatever body part I am focusing on. I use old anatomy illustrations or photographs of myself as a guide and then meditate on what I am feeling in the moment, stitching the sensations freehand in the moment. 

 

 

Lia Pas is a Canadian interdisciplinary creator who makes work as text, sound, movement, and image. Since becoming ill with ME/CFS in 2015, Lia has focused primarily on textile-based work exploring anatomy and symptomatology. An essay on her current creative process is forthcoming in the In Copore Sano anthology (The Operating System, 2019). Her poetry has been published in numerous literary journals as well as in her book what is this place we have come to (Thistledown Press, 2003) and her chapbooks vicissitudes (Underwhich Editions, 2001) and Husk (JackPine Press, 2008). Her videopoem about the heart—susurrations (2009)—can be found on Vimeo. Lia’s music has been performed by chamber ensembles, used as soundtracks for short films, and broadcast on CBC and BBC radio. She has worked extensively with movement artists and was composer/librettist for Fihi ma Fihi (2015), a full-length dance-rock-opera with La Caravan Dance Theatre. She can be found online at liapas.com, on Instagram and on Twitter.

Poetry by Juliette Sebock

Wintergreen

I could never drink root beer,
Which was a shame when we went to the soda shop
And everyone crossed the intersection
For a dollop of ice cream in their nearly-too-cold cup.
It tasted like it smelt,
And it smelt like walking on Pop-Pop’s back
And brushing against his psoriasis
And not asking about the scar that ran up his spine.

Years later, I tried.
But the smell still smelt like
Lying in bed, shivering from the cream
That tried to help the knots in my shoulders
And the knives in my eyes.
So I settle for a Coca-Cola float
With a hot water bottle,
Washing down a pain pill cocktail.

It doesn’t help.
The medicine, OTC, prescription,
Ice pack, hot pack,
Icy-hot in an A&W glass.
The braces just leave marks
And invite questions from those who only smell the wintergreen
Of some sort of pain-relief cream.

 

The Cure

It starts somewhere small.
Shoulder.
Elbow.
Waist.
It sneaks up, then sneaks along.
Flooding, burning, fingertips.

Doubled-over,
Palm pressed in orbit.
The pressure, the darkness,
Nothing helps.
Sleep?
Touch?
Solitude?
An endless cycle,
A never ending search.

 

This poem originally appeared in Juliette Sebock’s chapbook, Mistakes Were Made (2017).

 

Juliette Sebock is a poet and writer born in small-town Pennsylvania. She loved writing from a young age but worked a variety of other jobs before settling on it as a career path. She graduated from Gettysburg College in 2018 with a B.A. in English and focuses in American and British history. After several years of undergraduate journalism and work with sources such as Her Campus Media and The Mighty, she turned her focus primarily to poetry, publishing the chapbook Mistakes Were Made in 2017. Currently, Juliette is working on lifestyle blog, For the Sake of Good Taste, as well as on a variety of poetry and prose pieces. When she isn’t writing (and sometimes when she is), she can be found with a cup of coffee and her cat, Fitz.

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