Mar 5, 2017
Ellie Terry talks Tourette Syndrome and its representation || Diverse Reads 2017
Today, I bring to you another Diverse Reads 2017 post, featuring yet another 2017 diverse book and author.
But today's post is extra special to me, personally. Let me introduce to you Forget Me Not, an #ownvoices MG novel written in verse and features a MC with Tourette Syndrome - a disorder that I myself has been suffering from since I was 11 years old.
I am so excited and happy that this book was written, and is going to be published, hoping that a lot of kids around the world with Tourette Syndrome will get to read it and feel less alone, something I desperately wish that my younger self could've also experienced.
So today, we have the wonderful author of the book, Ellie Terry, who's here to give a breakdown on what exactly is Tourette Syndrome and its representation in MG and YA.
Thank you, Mishma, for inviting me to do a guest post on your beautiful blog! I am so excited about all of the wonderful diverse books coming out in 2017 and am happy to contribute with my debut novel, FORGET ME NOT, which is about a girl named Calliope who tries to hide her Tourette syndrome from her new school, while trying to convince her mother not to move them yet again, especially after making friends with the boy next door. Since the sale of my debut novel in 2015, I have been asked many questions about Tourette syndrome, but there are some that I get asked ALL THE TIME, so I thought this post would be a great place to discuss them. So, here we go...
WHAT EXACTLY IS TOURETTE'S?
Tourette syndrome is a neurological disorder that causes a person to make involuntary repetitive movements or sounds, called tics. While tics in general are common in school-aged children, those with Tourette's will have multiple motor tics and at least one vocal tic for an extended period of time, usually at least one year. These tics may come and go and new ones may appear in their places at any given time. When you hear the word: Tourette's, you may think of someone who shouts obscenities or uses crude gestures, since that is how most media portrays the condition (and for some, those things are in their repertoire of tics... and a little understanding towards them can go a long way) but some of the more common examples of tics are: repeating words or phrases, throat clearing, sniffing, squeaking, winking, tensing muscles, facial movements, shrugging the shoulders, or jerking the head. Symptoms can range from mild to severe. Most people with TS also suffer from co-morbid conditions, such as Obsessive Compulsive Disorder, Generalized Anxiety Disorder, Attention Deficit Disorder/ADHD, Sensory Processing Disorders, depression, as well as some behavioral disorders.
WHAT DOES TOURETTE'S LOOK LIKE FOR ME?
While I've had symptoms of OCD since I was a toddler, my first memories of tics were around age ten. I started pulling my thumbs down to my wrists over and over until I'd feel a loud crack, and then cry because of the pain. I'd wiggle and scrunch my nose and wonder why it was so itchy? Or why I didn't just use my hand to scratch it? I'd do a strange thing with my neck bones, sort of shifting them around in my throat.
In high school, things got even weirder. I rolled and widened my eyes, frowned, sucked in exaggerated breaths, tried to shut out the barrage of swear words that played in my head while I was suppose to be thinking about reverent things in church, cleared my throat, re-wrote the same math homework multiple times until it looked "perfect", sat motionless while scary scenes played out in my mind, and randomly flipped people off. It terrified me. I didn't know what Tourette syndrome was or that the weird things I did were called tics. Whenever my finger went up, I used my opposite hand to hold my arm down to my side, so no one would see. Luckily that tic was very short lived.
In college, a few more things joined my list: jerking my arm, twisting my hands, rolling my lips, slamming the side of my ankle onto the floor until it popped, and thrusting my jaw forward until that popped, too. I didn't know what was going on. Fast forward to four years ago... I finally saw a neurologist who gave me a definitive diagnosis of Tourette's Syndrome (although by this point I already knew I had it.) I had spent about six months prior heavily researching Tourette syndrome. Something my neurologist said at the end of that appointment brings me to the next question...
WHAT INSPIRED ME TO WRITE A CHARACTER WITH TOURETTE'S?
My neurologist inspired me. But not in the way you'd think. I guess I should also mention that some of the inspiration came from my oldest daughter, who also has TS. She loves to read and I was searching for middle-grade novels with characters with TS to share with her, so she wouldn't feel so alone. I found exactly... one. And it had been written twenty years earlier. (There may be more that I am not aware of.) But the BIG spark of inspiration came from what the neurologist said to me at the end of my first office visit.
What did he say?
You'll have to read FORGET ME NOT to find out! I know. I'm such a tease. But I can tell you that I did not take his advice. And I can tell you that as I drafted the novel, it became less of a project for my daughter and more of a therapeutic and rebellious endeavor for myself.
WHAT DO YOU HOPE READERS TAKE-AWAY FROM FORGET ME NOT?
My hope is that those with TS will read the novel, find themselves, and not feel so alone. My other hope is that those who don't have TS will read the novel, come away with a better understanding of what TS is and isn't, and learn to embrace whatever it is that makes them different from the rest of the world. And my greatest hope of all is that one day those with Tourette syndrome can sit in auditoriums, churches, book clubs, schools, movie theaters, and restaurants, and not only be able to tic freely without being embarrassed, but those around them will hardly notice or care, because they will be so aware, so understanding about what Tourette syndrome really is. And that will be a beautiful day indeed.
Bio: Ellie Terry writes heartfelt contemporary fiction for middle-grade readers. Her middle-grade debut, a verse novel titled FORGET ME NOT, will be published March 14, 2017 by Feiwel & Friends, an imprint of Macmillan. She lives in southern Utah with her husband, three kids, two zebra finches, and a Russian desert tortoise. Find out more at www.ellieterry.com or find her online through the links below: