Taking on Tourette

Senior doesn’t let Tourette Syndrome get in the way of her passion for music

Lindsay Haight, Logan Lair, and Kate Muldoon

It was the end of freshman year, a week before finals, and all she could think about was summer right around the corner. Suddenly, she felt an urge. It was like a sneeze but in her neck. All of a sudden, her shoulders rose towards the sky as her head shot backwards. Katie Wilson ‘20 had received her first tic.

“It feels almost like when you know you are going to sneeze. It’s like, ‘I’m going to sneeze! I have to sneeze!’ And you can try to hold in the sneeze for a little while, but it doesn’t go so great, and you sneeze eventually,” she said.

She had developed Tourette syndrome, a neurological disorder where a person makes involuntary movements or sounds called tics that the person has little to no control over. As of now, the cause of Tourette syndrome is unknown, but genetics has been shown to play a role in its development.   

Wilson’s journey has been different from most people who have Tourette syndrome, who find out about their condition at a much younger age. “The most common age is between seven and eight years old,” Wilson said.

This gives the people surrounding the person with Tourette syndrome much more time to get used to life with tics before some of the most important years of their life. High school is a hard time for almost everybody, especially when you find out you have an incurable syndrome that will affect the rest of your life. 

“I didn’t know what it was. It was this crazy neck movement where I was kicking my head backwards in class,” said Wilson. “I didn’t know whether or not I was doing it on purpose.” 

 Although high schoolers are arguably more mature than seven- and eight-year-olds, it was still hard to get used to, which made it tough for Wilson. However, people who knew her before freshman year were more accepting than others. 

“[Katie] just needs you to respect her and give her space, and so I think that’s definitely something that me and the rest of my friends have learned to do,” Wilson’s friend Annalie Haralson ‘21 said. 

Things became even harder when she developed verbal tics. Her first one was squeaking. This became difficult to deal with in class. She started missing school for weeks on end. More tics started developing, which made it worse. It was a downward spiral from then on. 

“When I first got tics, I started missing a ton of school because I didn’t know how to cope with it,” Wilson said. 

Her number of classes has dropped significantly. “So, I aid in the forum, I am in psychology, AP Lit, and then I aid in the Intensive Learning Center,” she said. “So those are my classes at Monarch, and then I’m in two classes online.”  

Last year, a new light entered her life, Watson. In March of 2019, she got a service dog to help with some of her tics. 

Watson is still in training but will soon be ready to follow her everywhere she goes. “His job is to help keep me safe,” she said. “I have a fair number of tics that hurt me. They’re self-injurious tics.” 

Before having Watson, she had to rely on her peers to help her during these self harming tics.   “In the past, it’s been something where I walk into class on the first day of school, and I’m like, ‘Hey, by the way, would you be comfortable restraining me if I start hitting myself?’ Which is awkward at best.”

Wilson’s friend Evan Childre ‘20 has been one of the people to help her. “One time [in percussion practice], we were rehearsing something, and I had to stand there with Katie and hold her arm back from punching herself,” he said. “She just whispered to me and she said, ‘Thank you.’”

Once Watson is fully trained, Wilson and her peers will become more comfortable with each other, which she hopes will help her socially. “Hopefully, in future situations where that might happen, I would be able to rely on him to do that and not have to put that sort of pressure on other people that I don’t even know,” she said. 

Watson isn’t the only thing that has been supporting Wilson. 

The biggest help in Wilson’s life has been the music program. She is a key component of Monarch’s marching band, and playing percussion helps with her urge to tic. 

“Tics are unique in that they’re distractible, which means when I’m playing music, they stop or at least significantly calm down because so many different parts of my brain are active when I’m playing music.”

Music has been such a positive influence in her life that it’s not just the music, it’s the people, too. 

“When she’s focusing on the music, it takes so much concentration and mental energy that she can’t break into Tourette, and so it’s really awesome because then she can just do what she loves and be who she is,” Haralson said.

When Wilson started playing music in 5th grade, she immediately fell in love. Over the years, its importance in her life has grown. “I would say the biggest help in my life has been the music program.” It has helped her through the good times, and especially the bad. Whenever I’m having a really bad ticking day, I know I can pick up a pair of mallets. I can do that, and it’s like I don’t have to be out of control anymore.”

For the longest time, Wilson felt like she wasn’t in control of her own body. She could tell that what she was doing was wrong, but she couldn’t stop from harming herself. “I’ve had a two-year-old inside of my brain going, ‘Why are you hitting yourself? Why are you hitting yourself?’ And there was nothing I could do to stop it.”

Throughout all of this, she has stayed positive and started to embrace her Tourette syndrome. She learned about her syndrome, and she eventually trained to be a youth ambassador for the Tourette Association of America. “I’m educated on how to present to various different types of groups about Tourette syndrome and raise awareness.” She was also trained how to talk in media interviews. “I was interviewed by 9News a while back, which was cool.” 

Wilson has dedicated many parts of her life to focusing on making people aware of Tourette syndrome. She takes the time to explain what Tourette syndrome is, so that when people ask questions, she can answer them and help spread awareness.

From having some of the hardest years of her life, to being successful in school and out of it, Wilson has faced one of the hardest challenges someone can experience, and turned it into good. 

Even though Tourette syndrome is a serious condition, Wilson continues to think of others before herself. Her friends say she is one of the kindest people at Monarch. 

“She’s really caring. She wants to make sure everyone is safe. I think especially in our drumline, she’s pretty concerned with looking after everyone,” Haralson said.