Belleville teacher battles Tourette Syndrome: I never knew the word 'can't'

Published online at BND.com, 2 September 2013.

By JAMIE FORSYTHE — News-Democrat

Jen Stenger always wanted to be a teacher. And she wasn’t about to let anything get in her way.

Not the uncontrollable motor tics she has had since she was 6 years old. “We just thought it was habits,” she recalled. “We just didn’t have the knowledge.” Not the diagnosis at 16, when she was a junior in high school, that she has Tourette syndrome. And certainly not the fear that her students might think she was “weird.” “I never let Tourette — or anything — get in the way of something that I wanted to accomplish,” Jen said. “I never knew the word ‘can’t.’”

Jen, now 35 and living in Swansea, has worked at Belleville School District 201 for the last 13 years and currently teaches English at Belleville East High School. She also teaches at Lindenwood University-Belleville and Southern Illinois University Edwardsville. To help other educators like herself, Jen recently published a book, “The Life That Chose Us: Educators with Tourette Syndrome.”

In her early years of teaching, Jen never disclosed to her students that she had Tourette syndrome.

“It’s something I didn’t talk about openly,” she said. “I was very self-conscious. I didn’t want to be seen as the weird person or the teacher who had a disability or the freak.”

Now, she spends a day the first week of school talking about her condition and how it has affected her life.

On Aug. 20, Jen took time to explain her disorder to students in her senior-level class on developing writing skills.

Tourette syndrome is a neurological disorder that “makes you have tics or involuntary motor movements,” Jen told them.

Her motor tics include popping her elbows or other joints; hitting herself in the chest with her hand; and jerking her neck, arm or back.

“It can hurt,” she told students. “It sucks, but you just have to live with it and figure out ways to deal with it. I want you to know what it’s like so you’re comfortable with it.”

She talked about how mainstream movies typically depict people with Tourette syndrome as having verbal tics and shouting obscenities or inappropriate comments. Less than 10 percent of people with Tourette have verbal tics, Jen said.

“Since talking about it, a weight has been lifted off my shoulders,” she said in an interview.

After the class, senior Cortez Holman said Jen is a “very nice teacher. She’s straight to the point with everything.” He called her “very brave” for choosing teaching as a profession. “Certain people wouldn’t want to express these types of things.”

Marci Reeves, an English teacher at East, described Jen as energetic and compassionate toward her students. “By her having a disability, she’s able to walk in students’ shoes,” Marci said. “She demands more. She knows she doesn’t have to limit kids, because she’s not limited herself.”

Jen is not alone

Jen credited Matthew Davis, her adviser and mentor while she was earning a doctorate in education at the University of Missouri at St. Louis, with helping her find the courage to talk about what it’s like to have Tourette syndrome. He advised her to seek other educators with Tourette syndrome for her dissertation.

“I really didn’t know how many would be out there,” Jen said.

She used Tourette Syndrome Association’s Facebook page to locate other educators with Tourette. She interviewed seven fellow public schoolteachers afflicted with Tourette in six different states during the summer of 2011.

It was reassuring for Jen to find others who have gone through similar experiences as herself. “I always tried to prove my worth as a teacher,” she said, and so did they.

Jen especially enjoyed getting to know a retired middle school French teacher by the name of Sue. (Jen didn’t disclose last names or locations of the teachers she talked to in her book.)

“It wasn’t a particular story that I loved so much but more so her outlook on life and the way she viewed living life with Tourette syndrome,” she said. “She wasn’t about to let Tourette syndrome stop her or get her down. Sue sums it up best when she said to me, ‘Life is 10 percent what happens to you and 90 percent what you do about it.’”

The following fall semester, Jen conquered her fear and openly disclosed to her students for the first time that she has Tourette syndrome. She realized she shouldn’t be scared to talk to her students.

“Kids are so accepting. They are so resilient,” she said. “If you give them the information, they are accepting. If you explain things to them, it doesn’t bother them.

Just the facts

Following discussion of Tourette syndrome with her students, Jen answers their questions. One senior asked if she has to take medication.

Jen said she takes several medications in an effort to control the number of motor tics she has. She works with a neurologist at Barnes-Jewish Hospital in St. Louis.

“The biggest side effect is it makes me tired. I definitely get a lot of sleep,” she said. “To me, it’s worth it. I’d rather be a little tired and want to drink coffee than ticking uncontrollably.”

When interviewing for teaching jobs, Jen recalled “holding in tics. I didn’t openly disclose I have a disability.”

If she concentrates, Jen said she can suppress her tics for a while.

“This is usually followed by a release or relief period where your tics are greater than normal,” she explained.

“For instance, I can be a bridesmaid in a wedding and stand in front of a church and be relatively tic free, but I am concentrating very hard. I can also be relatively tic free at the reception following the wedding or for an entire evening if I go out on a date. Generally speaking, the next day, my tics may be a little worse than usual because I spent four to six hours consciously suppressing them.”

When not teaching, Jen enjoys staying active.

“It doesn’t limit me in any way,” she said of having Tourette. “I’ve learned how to deal with it and still be successful in life.”

Jen has run three full marathons and five halfmarathons and participated in a few triathlons.

She spent the summer boating, swimming and water-skiing.

A book for others

Being open with her students at Belleville East gave her the confidence to pursue writing a book.

Jen spent the spring transforming the dissertation she wrote for her doctorate degree into a non-fiction book. In June, she self-published “The Life That Chose Us: Educators with Tourette Syndrome.”

The book, which is available for about $14 at Ama  zon.com  , discusses dismodernism, the “belief that disability is what we all have in common.” It holds that everyone will likely be disabled in some form sometime in his life.

“I wanted to get my book out there, because there are no books out there on educators with Tourette syndrome,” she said. “I want to get the word out there that educators with disabilities, in this case specifically Tourette syndrome, are successful, competent educators. We have something to contribute.” Jen Stenger was diagnosed with Tourette syndrome at age 16, but she hasn’t let it stop her from achieving her dreams: