Blanket Sea

Arts & Literary Magazine

Category: Reviews

“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.

“Mind as Body: Review of Sabrina Benaim’s Depression & Other Magic Tricks and Brenna Twohy’s Zig-Zag Girl” by Jordan E. McNeil

When people speak of the body, I find they mostly mean “body” in the physical sense: organs and sinew and genetic makeup. But for me, my recently diagnosed mental illness and lingering grief are just as much a part of my body as my blood and my bones. Body, to me, is similar to identity or the sum of all the parts that make me me and you you, and our mind—and what goes on there—is a large part of that.

Poets Sabrina Benaim and Brenna Twohy address these aspects of body in their most recent books: Depression & Other Magic Tricksand Zig-Zag Girl, respectively. Depression and grief and just pure emotions are presented and explored in these poems—how they affect your attempts at living your life, how they can be or become part of who you are. While each book focuses more on one of these that the other (Benaim on depression/mental illness; Twohy on grief/emotion), they are doing similar work with their interpretations of the body.

Depression & Other Magic Tricks

I found Benaim’s book via a video on Button Poetry’s Facebook page. It was a recording of the poet sharing her poem “explaining my depression to my mother a conversation,” and it entranced me. “mom,/my depression is a shape shifter;/one day it is as small as a firefly in the palm of a bear,/the next, it’s the bear./those days i play dead until the bear leaves me alone.” (pg 6) Her poem so clearly presented what it feels like to have depression and anxiety, in ways I’ve been unable to put into words for those who have not experienced it themselves, that I followed the link to order her book immediately. When it arrived, I was not disappointed with the rest of her poems. While “explaining my depression” is not the opening poem to the book, it still works to encapsulate the book as a whole: a young woman attempting to understand this part of her identity, of her body. “mom still doesn’t understand./mom,/can’t you see?/neither do i.” (pg 8)

Utilizing various forms (prose poetry, erasure, spoken word), the book follows the progression of living with a mental illness and coming to terms with it being part of yourself, part of your body and your identity, to it’s conclusion. The final poem of the book, “follow-up a prayer/a spell,” shows the speaker of the collection more at peace: “i am feeling better/so i say/good morning/& mean it//yes/today/is a good morning/to exhale/to feel joy//with the release of breath/i no longer need to be holding” (pg 69). The speaker is not fixedor cured, because that’s not how depression works, but she is better, for now. She’s accepting help in all forms (“if i need more help i will let the people offering help me//if i need more help i will let the medication help me/i forgive my body for being a machine after all”) and realizing that as a part of her body, she can live with it. And the moment is beautiful.

Zig-Zag Girl

Twohy’s book caught me with the opening poem “A Coworker Asks Me If I Am Sad, Still,” a wonderfully poignant piece about grief, but also could be read as speaking about depression, and often the two are friends and bedmates. “A Coworker Asks Me If I Am Sad, Still/& I tell her,//grief is not a feeling,/but a neighborhood.//this is where I come from/everyone I love still lives there.” (pg 9) The book is segmented into three sections (Zig, Zag, and Girl), but as a whole it focuses on various types of grief—loss of a sibling, possibly to suicide; loss of love, even though it was with someone you shouldn’t’ve been, possibly toxic and misguided—with undertones of mental illness and womanhood.

Section 1, Zig, is clearly focused on the loss of a brother at an age where it’s unexpected. But the other two start to merge these themes together, showing how all of it can become entangled in each other. How it can become entangled in yourself. Section 3, Girl, shows recovery of what can be recovered from, and acceptance of what cannot. The ending couple of poems, “I Am Not Clinically Crazy Anymore” and “when the crazy came back” encapsulate what it’s like to have a mental illness, to have intense grief, and how you push yourself to keep going. “this body knows withstand. knows/what the morning looks like when she says stay.//the crazy/is a quitter.//you have a perfect/attendance record for this life.//& I will stay./& I will stay.” (pg 52-53)

I’m not sure if Benaim and Twohy would say they wrote poetry of the body in these books if asked, but I think they did. And they did so in a way that’s easy for anyone, even traditionally non-readers of poetry, to pick up and breathe in. Both poets are performance poets, having competed in various slam competitions and sharing their spoken word at events and in video, and they both utilized that skill in these books of poetry. There is an attention to language and sounds that sing to the reader, but it’s spent in more “plain” sentences, easy to read and understand and commit to memory. They don’t utilize as many of the techniques and aspects some may consider “high poetry,” such as complex metaphors or a high vocabulary, but show how even “plain” speaking can be poetry.

These poets are simply telling it how it is, which is so important when dealing with mental health. There is less stigma associated with it nowadays, but it’s still around. People are still afraid they are going to be misunderstood or judged if they speak about their mental illness; others will refuse to speak at all because it’s not something you talk about. These poetry books are doing important work within this conversation, this realm of discussion, by presenting poems that are poignant and linger in the mind, but are easy to read and devour. (This also means that these books are doing important work in the poetry realm as well, serving as an access point to those who may normally not read poetry. Both of these would serve well as a book you press into that friend’s hands and say why don’t you give this a try.)

Another thing I found interesting was the reoccurring theme of magic (not wizards and spells as much as magicians and shows) within these poems. Benaim has a five poem series entitled “magic trick,” as well as references in other poems and the title; Twohy has magic show centered poems “Shell Game” and “Zig-Zag Girl,” and also shows it in her cover art, which is designed to look like the book is a pack of cards being opened.

These intrigued me because when I was younger, I was obsessed with magic tricks, desperate to learn to impress friends and family and maybe, one day, complete strangers. But as I read these books, I realized how perfect this idea of magic was when talking about depression and anxiety. Magic tricks, at their core, are about illusion and misdirection. It doesn’t matter if you’re doing card tricks, or street magic, or sawing a woman in half, how you get away with it is that simple. Make it look like you’re doing one thing, then do another; keep the audience’s attention over here, while you truly do the trick over there.

Depression and anxiety are the magician, and you are the audience. They like to tell you that one thing is going on, when most likely it’s not, or not to the degree in which they are convincing you. They turn a simple slight of hand into a production so large you feel unable to deal with it. This is how they get you. In these books, however, Benaim and Twohy flip that script, show their speakers (you, the audience) doing the magic. Showing that you can live with your mental illness, you can have them be a part of you. And maybe you can make some magic along the way.

          in some stories,
          
the protagonist has to kill the bad thing to release its light.

          in my story,
          
i am the protagonist & the bad thing,
          
i have to learn how to bend the light out of myself.

                                                                                                                   i can do that magic.                

(“on releasing light” by Sabrina Benaim)

 

Jordan E. McNeil writes, rages at videogames, and takes selfies with goats. Her work can be found in Jenny Magazine, Penguin Review, Rubbertop Review, and Willow: Women in Lit Lifting Other Women. She can be found on Twitter, @Je_McNeil.

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