When Olivia Roman was 5 years old, she noticed she was tapping her left foot with her right foot after every few steps, and assumed she was just being silly on vacation. On the second day of first grade, she found herself trembling from head to toe during an assembly. After a few weeks of meeting with neurologists, she was diagnosed withTourette syndrome, a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics.
“My parents explained it by telling me that we all have wires in our brain that send messages that control certain things we do,” Olivia, who is now 13, told Teen Vogue. “Therefore, the wires in my brain sometimes send mixed messages and that is why I can’t control my movements.”
Those movements are often hard or impossible to conceal, and can appear to be small jerks or twitches. Like many young people with Tourette’s, Olivia was nervous about how these tics would interfere with her life.
“The tics I currently have are complex tics,” she explains. “This involves more than one muscle group. My complex motor tics aren’t as rapid as compared to simple motor tic. It even looks like I am doing the tics on purpose." Right now, she experiences head and arm tics, which increase and decrease over time (a phenomenon called "waxing and waning"). "There are times I get a new tic and the other tics disappear," she says.
Understanding the forces behind her tics made a huge difference in her life, eventually leading her to become a youth ambassador for the Tourette Association of America. Now, she travels around schools in New York to educate others about Tourette syndrome.
She tries to help others understand what it's like to live with the condition by having them complete writing tasks with "assigned" tics, such as dropping their pencil or erasing every third word. She also combats myths and addresses questions such as “can’t you just stop your tics?” by describing how suppressing tics feels like “holding your breath,” and “getting bitten by mosquitos but not being able to scratch.” Last March, she travelled to Capitol Hill with fellow ambassadors to talk about life with Tourette's in an effort to lobby for increased funding for research. Olivia says she couldn’t have turned her negative experience into such a positive impact without being taught to be upfront about her situation at a young age.
“My mom was the force behind me being able to be open and honest with my friends and teachers,” she explains. “My mom would ‘role-play’ with me, every morning before school, teaching me how to answer questions and comments made by other kids. Over time, I started realizing that the more I told people, the less attention I got with my Tourette’s. Looking back, this was and still is so powerful.”
Still, in middle school she began to encounter bullying from other kids in school, who, as strangers, would make comments and stare. “They didn’t know anything about me,” she says. “As time went on, I was able to confront them and explain that I was not able to control my movements.”
While it took time, Olivia believes that her bullies eventually understood what Tourette’s was, thanks in large part to her willingness to be upfront about what her tics were, and eventually confront the people making comments. In one instance, she confronted a bully in person, telling him that his comments were a big deal, and involving their principal in the situation.
“The principal’s approach was to have us both in her office and she gave me the opportunity to talk about my Tourette’s,” she says. “I was also able to express how upset his comment and action made me feel. He did apologize and I knew he meant it. This particular incident made a big difference and we are now good friends.”
Olivia would like people to understand exactly what Tourette Syndrome is not: It is not involuntary vocalization of obscenities, otherwise known as Coprolalia, though about 10% of those diagnosed with Tourette’s might experience the cursing syndrome from time to time. Also, Tourette’s is not in her control at all, so telling her to stop won’t do anything. It's also frustrating to hear, since she’s more bothered by the tics than whoever is asking her to stop and is often working on controlling them already.
“I usually use strategies to suppress them,” she explains. “At 9 years old, I went to see a therapist who taught me techniques. The therapy is called Cognitive Behavioral Intervention for Tics. Usually taking in deep breaths and focusing helps me somewhat control them, but it’s usually temporary.”
Still, there are some times when her tics increase, like when she's "worried, nervous, scared, or just excited," she says. “If I’m going on a field trip or going on vacation, my tics will increase starting the night before. What helps me decrease my tics is when I am really focused, like when I am playing volleyball or taking a test.”
Olivia often does her presentations with her older sister Gabriella, who does not have Tourette Syndrome, and through these presentations, she’s come to understand that patience and an interest in people’s own worlds are key. After all, simply getting to know her own bullies has already helped a lot in her own journey. “I once heard a quote from a movie that was based on bullying. The quote is ‘kids who hurt, hurt kids,'" she says. "If this is true, I would say, talk to someone you trust about what you may be going through.”
Ultimately, Olivia wants people with Tourette syndrome and other conditions that can feel like a setback to understand that they are always more than their diagnosis.
“I have learned that having Tourette does not identify me as a person,” she says. “It is certainly a part of who I am, but it doesn’t stop me from doing anything I want to do. At least, I never viewed it that way. At times, it may slow me down, but it definitely doesn’t stop me!”
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