Two lives collide, create comfort in face of Tourette Syndrome - KCTV5

Two lives collide, create comfort in face of Tourette Syndrome

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Jim Fussell's book, Ticked: A Medical Miracle, a Friendship, and the Weird World of Tourette Syndrome, is about that condition, but also about two lives colliding to create comfort in the face of it. Jim Fussell's book, Ticked: A Medical Miracle, a Friendship, and the Weird World of Tourette Syndrome, is about that condition, but also about two lives colliding to create comfort in the face of it.
It was Fussell's work as a features writer for The Kansas City Star that led him to the man he calls his hero. It was Fussell's work as a features writer for The Kansas City Star that led him to the man he calls his hero.
KANSAS CITY, MO (KCTV) -

It is estimated 272,000 people in the United States suffer from Tourette Syndrome. It can be a debilitating and painful condition that a lot of people don't understand.

But a metro man is hoping to change that.

When most people think of Tourette's, they picture someone who randomly and uncontrollably blurts out obscenities. That is actually just one rare manifestation of the condition.

Jim Fussell's book, Ticked: A Medical Miracle, a Friendship, and the Weird World of Tourette Syndrome, is about that condition, but also about two lives colliding to create comfort in the face of it.

It was Fussell's work as a features writer for The Kansas City Star that led him to the man he calls his hero.

It happened when was assigned to interview Oprah Winfrey.

"It was 2004. She was coming here for her Hello Gorgeous tour," Fussell said.

Like he does with most in-person interviews, he started by explaining the ticks she might see.

"I was explaining to Oprah that I had Tourette's. She explained that Jeff had been on her show and he had Tourette's, and I had to see this tape," he said.

What he saw was life-changing. Jeff Matovic, a man whose Tourette's was severe, being transformed by a groundbreaking surgery.

"I never knew a world of stillness," Matovic said. "Being able to do the simple things ... to write, to read, the sit and do nothing."

The men met and bonded instantly.

Fussell got hope from the journey of Matovic, and they became a team behind a book that aims to inspire and explain.

"I'm on camera now, and I'm trying to hold back as much as I can," Fussell said.

But when he lets go, like he did for a moment at this week's launch of his book at Unity Temple, people will see the tick and the hair combing he uses to soothe it.

There are contraptions in every corner of Fussell's house to help address another aspect of the condition.

Pain comes from the physical pressure that builds and builds with every moment he holds back the instinct to jar his head sideways. It is a movement so severe that he can literally feel his brain hit his skull.

"I don't get sleep. I don't get any respite from it. It's just always, always there, and it's always building," Fussell said.

But he has to hold back, and not just to avoid embarrassment.

"If I did the shaking as much as the shaking wanted to happen, I would give myself a concussion and pass out," he said.

In Matovic's case, it was far worse. It was uncontrollable and on the verge of killing him.

"They estimated that had I not had the surgery, my body was ticking at such a rapid pace, my body would have burned itself out and killed me within six months," Matovic said.

Matovic still has Tourette's, but has none of the ticks that once crippled his ability to do the simplest things.

"There were times when I tried suicide, because Tourette's can be that evil," Matovic said.

Fortunately, he failed, so the pair could succeed in telling their story - a story they hope will spread the word about a misunderstood world and inspire those living in it.

"Life doesn't have to be over if you have Tourrette Syndrome. Stay in there. Don't give up. You don't know what life will throw at you that's right around the corner," Fussell said.

Fussell hopes to someday get the same surgery Matovic had, but he can't yet.

It is still experimental and only being performed on a trial basis for people with the most severe cases.

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