美国国家公共电台 NPR A Father To His Son: 'I Know What It's Like' Living With Tourette's Syndrome

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RACHEL MARTIN, HOST:

It's time now for StoryCorps. And today, we hear from Josh Hanagarne. Josh has an extreme form of Tourette's syndrome¹, 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 blinking² 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 insane³ 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 yell⁴ or I will do something weird⁵ 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 smash⁶ you harder than a rhinoceros⁷.

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 solace⁸ 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.

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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.