Redefining normal

Logan Kurtz used to have one wish: “I remember looking up every night, even if I couldn’t see the stars from my room, [thinking], ‘Just make me normal,’ ” said Kurtz, a handsome 16-year-old from Topanga. “I knew I was different from other kids.”

Tourette’s syndrome has been a defining aspect of Kurtz’s life since he was 4. Over time, Kurtz has learned to accept that for him, normal means life with Tourette’s.

“It wasn’t about changing the Tourette’s, it was about me changing,” he said. “I thought to myself, ‘Other people need help, and I want to make a change in this world.’ I’m young, I’m able, I want to do something.”

Kurtz found his outlet in educating the world about Tourette’s and other impairments such as Asperger’s syndrome, bipolar disorder, Down syndrome and muscular dystrophy.

The method by which Kurtz would raise awareness was inspired by a class election — which he lost — that ultimately resulted in a greater accomplishment. 

“It wasn’t to win,” he said of running for sophomore class vice president at Calabasas High School, where he had just transferred from private school. “It was because I was new to the school and I just wanted to get my name out there so people would know who I am.”

During his speech, many of the 500 students before whom he spoke noticed his tics and later commented on them.

“People asked me what was going on with my eye, my neck. I got tired of constantly explaining what Tourette’s is,” he said. So he created a Facebook page titled “Help Spread the Word About Tourette’s Syndrome” and invited his classmates to join.

“It was supposed to be a place for people to spread the word and learn what Tourette’s is, but a month or so later, people began using the page for helping others with problems,” Kurtz said. “People are now using the page to get advice.”

One of the first appeals for advice, Kurtz said, came from a boy asking how to control his head jerks when he’s lying down to go to sleep.

Kurtz has similar tics, including stretching his neck to the side, contorting his nose, closing his eye, flinging his arm, dragging his foot and kicking his leg, mostly on the right side of his body. Kurtz, who is right-handed, has trained himself to stay calm, because the tics become more unmanageable when he is stressed. He clears his mind before tests to stay focused.

“They’ve been getting a lot better,” he said. Tics either improve or worsen around adolescence, according to the National Tourette Syndrome Association.

Kurtz tries to control his tics, especially in public, but it’s not always easy.

“It’s actually painful the way I control my tics,” he explained. “I tighten the muscles around it or I hold the area. Even though people accept me for my tics, and I’m confident, the tics are still a little embarrassing and very painful.”

Through his Facebook page, which has about 800 followers, Kurtz recently shared advice with a mother of a girl with Tourette’s who snaps her legs and arms, about ways to make the tics less painful. But the teen wanted to extend his reach to help more people with Tourette’s as well as other disorders.

So, in January, his 12-year-old sister, Gia, suggested Kurtz start a Web site with the same aim. She also suggested the name DefinitePossibilities.com.

With the assistance of Web developers who volunteered their time, the site launched just in time for National Tourette Syndrome Awareness Month, May 15-June 15.

An important fixture of the site is the discussion forum, which allows users to connect with one another.

“It’s a place where everyone with disorders, disabilities and addictions can come together and help each other out,” Kurtz said.

“When you are little, and you have some major issues, you become isolated from society,” Kurtz’s mom said. “Kids and adults aren’t always nice or don’t always think, so as parents we try to protect our kids.” She thinks her son’s endeavor will give people with disorders confidence “to go out into society and not be embarrassed.”

Kurtz is more embarrassed about not becoming a bar mitzvah because of his difficulty learning foreign languages than he is about having Tourette’s.

“I didn’t want to just go up on stage and spend an hour or two speaking Hebrew if I didn’t know what I was saying,” he said. “I was offered [the option] to do it in English, but I didn’t want to. If I do something, I want to do it to the full extent.”

Kurtz, who plans to become a bar mitzvah after college, has stayed in touch with his faith through his involvement with his local BBYO, an international Jewish youth movement formerly associated with B’nai B’rith. He recently was elected communications chairperson.

“Everyone really respects him,” said Michael Zhitnitsky, 14, a fellow member of Kurtz’s BBYO chapter.

Kurtz’s can-do attitude despite his disorder and the difficulties that came as a result — including bullying — has helped him flourish and find his way.

Kurtz was highlighted as a “Hero” in the spring 2011 Tourette Syndrome Association newsletter and was invited to speak at Oak Park High School about living with Tourette’s. He also won a spot on the Calabasas High School varsity boys’ wrestling team, an impressive accomplishment for any young athlete, let alone one facing physical challenges.

Kurtz feels that his struggles and his triumphs alike have made him the well-rounded person he has become. And he no longer looks up at the stars in the middle of the night wishing he were “normal.”