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No longer invisible | A storyteller’s journey with Tourette syndrome

Elementary school had gone fairly well for author Jonathan Friesen. He attended a school near his house and since most of his fellow students lived in the same neighborhood, he knew almost everyone, and everyone knew him. With that familiarity—conditioned over several years in a web of relationships that exist outside the classroom—comes a certain willingness to accept things about people, even things you don’t necessarily understand.

Junior high was different, however. In fact, it changed everything for Friesen. He was forced to move from the smaller, neighborhood elementary school to a new and larger school, one where the kids didn’t know him as well.

Why would that prove to be so important? Because Friesen has Tourette syndrome.

He started to show symptoms when he was just 6 years old. With a family history of Tourette’s, he was born with a disposition toward what the Mayo Clinic describes as “a nervous system (neurological) disorder that … involves unusual repetitive movements or unwanted sounds that can’t be controlled (tics).” These may include repeated blinking of the eyes, shrugging of the shoulders or jerking of the head.

In elementary school, “People noticed it, but I was just kind of the odd kid,” Friesen recalled. “When I moved to junior high, that’s when things kind of changed.”

Friesen had what he calls “a big seizure” in seventh grade—in front of kids who didn’t know him as well as those in elementary school—and he soon felt somewhat stigmatized.

That feeling of being the “other” not only played a significant role in how he developed as a young man, but it also played a major role in how he would relate those emotions to his readers many years later.


An early storyteller
From a young age, Friesen loved to tell stories—and even write them, at least for a time.

“I was always a storyteller, Friesen said. “But what happened was that as Tourette’s got worse, my handwriting, which was close to perfect, just fell off the map. It was just horrible. Because of that, writing just as an act became a challenge. Even though I had stories to tell and writing maybe would have been a very natural outlet for those stories, I lost the ability to do it.”

Friesen even went so far as to avoid pens and pencils, believing he would not be able to control them adequately enough to write. Typewriters were a possibility at the time but without correction tape, they too became a hassle not worth his time.

Being a good storyteller—or “joker” or Friesen describes it—served him well when trying to deflect attention from his Tourette’s.

“I was good at making people laugh,” he said. “I usually did that to kind of redirect them … from maybe I had a big Tourette-related movement or tic and they’d be looking at me, and so somehow if you could make someone laugh and kind of redirect their attention, they wouldn’t ask me about it. I wouldn’t have to give an answer about this thing that I didn’t even understand myself. I learned how to tell a good story, tell a good joke to redirect people’s attention away from me.”

While the idea of being a natural storyteller was a strong influence in his life during high school, Friesen never was able to put those ideas on paper. Becoming a published author was possibly the farthest thing from his mind as he entered college.


An inkling of a career
“I went to college just because that was what I was supposed to do,” he said. “Whether I got that from my parents—and I think I did—that was your next life path. You get the diploma and then you choose which one of the colleges in your drawer who have been sending you stuff and who you are going to go to.”

In Friesen’s case, that meant Bethel University in St. Paul.

Admittedly, Friesen didn’t do well in college.

“I was a social novice,” he recalled. “I kind of just flew under the radar at Bethel, not knowing what I was doing. Just kind of floating around wondering why I was even in college. I didn’t belong there. At the time, I was just wasting my folks’ money.”

Eventually, he gathered enough courage to approach his adviser and ask what degree fit him best.

“Ironically, it was an elementary education degree,” Friesen said. “My folks were educators. That was kind of the one thing I didn’t want to be but if I could get out of college [with it], I’d do it. So I became a teacher.”

Even though the career, in a sense, kind of chose him, Friesen excelled in it and enjoyed teaching.

He went into special education after college and believed it was a good fit.

“They are people who are kind of … their life had gone a different direction than they probably would have wanted it, just kind of like mine did,” he said. “I kind of felt like I was at home there.”

At home he was. More than a dozen years later, Friesen was still teaching.


Trying his hand at writing
Nearly 15 years into a teaching career, Friesen still had not considered writing a book. For successful authors, no matter the genre, the typical career path follows years of struggle and desire and heartache. Friesen had yet to put his thoughts down, yet to feel the nearly insatiable desire to tell a story.

That would soon change.

“I wrote one article,” Friesen recalled during his teaching career. “That was a mistake, I think, because it got published. [I] wrote an article, sent it out, a $500 check came back and I thought, ‘Well, this is easy.’ Then I quit teaching because it’s easy.”

Maybe that was the catalyst into life as an author.

Friesen does recall, however, a point during his teaching career when he decided that he wanted to write a book. It was late in his teaching tenure, and this random thought emerged.

“It wasn’t based on any skill or anything,” he said. “I wanted to try to write a book.”

After the idea formed in his mind, he asked his wife what she thought about him becoming a writer.

“Are we going to eat?” she replied.

“I don’t know,” he said.

That was all he needed.

Armed with a newly published article and an agreed-upon vocation as a writer, Friesen quit teaching the next year, and the family struggled through several lean years.

His wife was homeschooling their kids, so Friesen was the only income.

“In retrospect, that’s not the way to do it,” he said. “But I think God was faithful.”

Success wasn’t easy or quick.

Years went by, and publication eluded him. Their savings account was slowly shrinking.


The story finally comes
Despite those being lean years financially, Friesen received some vital mentoring during this time from two Christian authors—Lauraine Snelling and Cecil Murphey—and that helped turn the tide.

Friesen’s first book—“Jerk California,” a book written for teens—was developed while mowing the lawn.

Nothing he had been working on had worked up to this point, and he thought, What do I know about that nobody knows about the way I know about it?

“I was thinking that as I was trying to start the lawn mower,” he said. “I was twitching like crazy and jerking and then, ‘What do I know about?’ I kind of paused for a minute and went, ‘Well, Tourette’s.’ I was living in Maple Grove at the time and by the time I got done with our little, tiny 45-minute mow, I had the whole story—start to finish. I had the title. I came in, I wrote the story. Two weeks later, it sold.”

The award-winning book tells the story of a young boy with Tourette’s who embarks on a journey to discover more about himself and his father.

“Jerk California” was a deeply personal book for Friesen.

“The first [book where] I knew every feeling, I knew every emotion that that character would have in all his situations he went through and everything after that,” he said.

Since that first book, Friesen has had to learn—or unlearn as he calls it—how to get inside the head of each character, something that was particularly easy with “Jerk California.”

“I keep assuming that everybody sees the world like I do,” he said. “I think everybody must see it through the lens of a boy who was sick and spent all his time in his room and didn’t have many friends when they were little. That’s how I see things. That colors everything. So it’s really an unlearning. When I write a character, I have to unlearn what I know about the world and say, ‘OK, had I been a socialite, had everybody in the school loved me, had none of the situations that I’ve had happened, then what would I have thought now?’ That’s a harder thing for me.”

But that challenge hasn’t been too difficult to overcome. Since “Jerk California,” Friesen has written several others, including his latest, “Both of Me,” which comes out this December. All of his books, to a certain degree, touch on similar themes.

“The books that I feel the most comfortable writing and have felt the most comfortable writing are books that are coming of age types of novels with characters who have significant points of pain that separate them from the world around them,” he said.


Being visible
Friesen’s experience as a young boy with Tourette’s gave him a particular insight into what he calls a “universal human need.” The desire to be noticed and affirmed.

“I sometimes got the ‘I see you’ but I didn’t get the ‘I like what I see,’” he said. “As I was writing, I always thought that was my little need. But the more characters I wrote, the more people I met and the more people I speak to, I kind of realized that was not my little need; that’s our collective universal human need. I kind of stumbled onto something, I thought, which was very simple actually but kind of profound in that every character I ever write is going to be asking those two questions: ‘Does anyone see me’ and ‘Does anyone like what they see?’”

Learn more at www.jonathanfriesen.com and find him on Facebook, where he will be giving away copies of “Both of Me.”



What is Tourettes Syndrome?
Tourette syndrome (also called Tourette’s syndrome, Tourette’s disorder, Gilles de la Tourette syndrome, GTS or, more commonly, simply Tourette’s or TS) is an inherited neurological disorder with onset in childhood, characterized by the presence of multiple physical (motor) tics and at least one vocal (phonic) tic; these tics characteristically wax and wane.

The exact cause of Tourette’s is unknown, but it is well established that both genetic and environmental factors are involved.

Genetic studies have shown that the overwhelming majority of cases of Tourette’s are inherited, although the exact mode of inheritance is not yet known, and no gene has been identified.

Tourette’s was once considered a rare and bizarre syndrome, most often associated with the exclamation of obscene words or socially inappropriate and derogatory remarks (coprolalia). However, this symptom is present in only a small minority of people with Tourette’s.

A person with Tourette’s has about a 50% chance of passing the gene(s) to one of his or her children.


Famous people with Tourette syndrome
Tim Howard – star goalkeeper for the US World Cup soccer team

Steve Wallace – NASCAR Driver

Eric Bernotas – US Olympic Bobsledder

Jim Eisenreich – Major League Baseball Player

James Durbin – American Idol Star

Jamie Grace – Christian recording artist

— by Scott Noble