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A Father To His Son: 'I Know What It's Like' Living With Tourette's Syndrome

Sep 1, 2017
Originally published on September 1, 2017 8:23 am

Josh Hanagarne is a dad, a librarian and an author. He also has an extreme form of Tourette's syndrome. But he doesn't let it and his tics — his involuntary movements and sounds — stop him from living his life. He says he actually chose to work in a library because it was the quietest place he knew of.

Josh first started showing symptoms of Tourette's syndrome when he was in elementary school, about the same age that his son Max is now.

Not everyone with Tourette's syndrome has the same tics. Max, 9, describes his dad's as "you hitting yourself and making a lot of noise."

"You've seen me hit myself hard enough to almost knock myself out," Josh, 39, says. "I also do all of the blinking and the face things and the little ahem noises."

Josh's form of Tourette's is so extreme that his tics have been severe enough that they've put him in the hospital before.

"To me, it feels like when you have that urge to sneeze so bad that you just feel like you'll just go insane if you don't let the sneeze out," Josh says.

But he says that's not the most difficult part of living with Tourette's.

"The hardest thing I do every day is decide to go outside or not, because I know when I walk into a group of strangers, I will yell or I will do something weird and they will all look at me," Josh says.

Max knows this and he's seen it happen. When he was a few years younger, he and Josh were buying milk in a grocery store when Josh had a tic. A man nearby looked at Josh and "in his face, you could just see he was annoyed." The man kept looking at Josh.

"I was finally at the point where I was going to tell him to stop looking at me, but you stepped in front of me and you said, 'Turn around right now or my dad will smash you harder than a rhinoceros,' " Josh says to Max. "And then when he turned around, you said, 'That's right.' "

The man didn't turn around again, Josh says with a laugh.

"I mean, I don't really care if people are being mean," Max says. "Like, if they're gonna be mean, they're gonna be mean."

Josh agrees with Max and says that's the right attitude to take in those situations.

"When I learned I was going to have you, there was no guarantee that, because I have Tourette's, you would have it, but I did have a better chance of passing it on to you and that really did worry me," Josh says. "When you started having tics, I felt like I had made your life harder."

Max hasn't been diagnosed with Tourette's syndrome by a doctor, but Josh says he knows Max has it because of how familiar he is with the symptoms. Max first started talking about his Tourette's with Josh when he was 7 years old.

"I'm starting to make noises and sometimes my eyes just roll back into my head, and I have to, like, get on the ground until it goes away," Max says. "It hurts; it doesn't feel good. I feel like everybody knows it and like they're all watching me. I don't like that."

Josh says there's not much to like about that.

"I mean, it's been happening a lot lately, and I have a fear that it might get worse," Max says.

Those are the same fears Josh has for his son, he says.

"Maybe it will, but we'll deal with it when it comes," Josh says. "The solace, I hope, is that even if I can't make you feel better, you will know that I know what it's like. You'll know I understand and hopefully we'll just be able to lean on each other."

Audio produced for Morning Edition by Jud Esty-Kendall.

StoryCorps is a national nonprofit that gives people the chance to interview friends and loved ones about their lives. These conversations are archived at the American Folklife Center at the Library of Congress, allowing participants to leave a legacy for future generations. Learn more, including how to interview someone in your life, at StoryCorps.org.

Copyright 2017 NPR. To see more, visit http://www.npr.org/.

(SOUNDBITE OF MUSIC)

RACHEL MARTIN, HOST:

It's time now for StoryCorps. And today, we hear from Josh Hanagarne. Josh has an extreme form of Tourette's syndrome, where his tics - his involuntary movements and sounds - have been so severe, they have put him in the hospital at times. He first started showing symptoms when he was in elementary school, around the age that his son Max is now. Josh has fewer tics when he speaks, and he recently sat down with Max at StoryCorps.

JOSH HANAGARNE: How would you describe my tics?

MAX HANAGARNE: You hitting yourself and making a lot of noise.

HANAGARNE: You've seen me hit myself hard enough to almost knock myself out. I also do all of the blinking and the face things and the little noises. To me, it feels like when you have that urge to sneeze so bad that you just feel like you'll go insane if you don't let the sneeze out. And the hardest thing I do every day is decide to go outside or not because I know when I walk into a group of strangers, I will yell or I will do something weird and they will all look at me.

Do you remember when we were in the grocery store? You were only like 4 or 5 years old. We were buying milk, and I had a tic. And this guy looked at me. And in his face, you could just see he was annoyed. He did it once and twice, and then he did it again. And I was finally at the point where I was going to tell him to stop looking at me. But you stepped in front of me. And you said, turn around right now or my dad will smash you harder than a rhinoceros.

MAX: (Laughter).

HANAGARNE: I know. And then when he turned around, you said, that's right. And so he didn't turn around again.

MAX: I mean, I don't really care if people are being mean. Like, if they're going to be mean, they're going to be mean.

HANAGARNE: That's the right attitude. When I learned that I was going to have you, there was no guarantee that because I have Tourette's you would have it. But I did have a better chance of passing it on to you. And that really did worry me. When do you remember you and me first talking about your Tourette's?

MAX: I was about 7.

HANAGARNE: And what are some of the tics you have?

MAX: I'm starting to make noises. And sometimes, like, my eyes roll back into my head. And I actually get on the ground until it goes away. It hurts. It doesn't feel good. I feel like everybody knows it and, like, they're all watching me. I don't like that.

HANAGARNE: There's not much to like about it.

MAX: I mean, it's been happening a lot lately. And I have a fear that it might get worse.

HANAGARNE: And those are some of my fears for you, that it will get worse. And maybe it will, but we'll deal with it when it comes. The solace I hope is that even if I can't make you feel better, you will know that I know what it's like. You'll know I understand. And hopefully, we'll just be able to lean on each other.

(SOUNDBITE OF MUSIC)

MARTIN: That's Josh Hanagarne talking with his 9-year-old son Max about living with Tourette's syndrome. They recorded their conversation in Salt Lake City, Utah, where Josh works as a librarian. And like all StoryCorps interviews, this will be archived at the Library of Congress. Transcript provided by NPR, Copyright NPR.