Teenage Diaries Revisited: Growing Up With Tourette's
Originally published on Mon May 13, 2013 10:19 am
Name: Josh Cutler
Hometown: New York, N.Y.
Current City: New York, N.Y.
Occupation: ESL teacher
"I look just like a normal person, except after a while you'd realize I don't act much like a normal person."
Josh has Tourette's syndrome, a neurological disorder that causes uncontrollable tics and verbal outbursts. He took his tape recorder to high school, documenting his efforts to live a normal life. "Girls are a very touchy topic with me," he said. "A lot of the Tourettic things I do seem to drive other people — including girls — away."
Josh overcame Tourette's enough to become a public school teacher in New York City. But it hasn't been easy for him. He was put on probation by the New York Department of Education two years ago and is currently fighting the charges. Until his case is resolved, Josh's life is in limbo.
On recording his teen audio diary:
"After my story aired [in 1996], even complete strangers from around the country went out of their way to drop me a note. My well-wishers ranged from ordinary people, to a man in prison in Texas, to a young lady named Emily, who also has Tourette's and with whom I still correspond. The lesson I learned from documenting my experience is that in some ways the cold, cruel world is not as cold and cruel as I used to think it was."
Produced for All Things Considered by Joe Richman and Sarah Kate Kramer of Radio Diaries, edited by Deborah George and Ben Shapiro.
ROBERT SIEGEL, HOST:
From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.
AUDIE CORNISH, HOST:
And I'm Audie Cornish.
This week in our series Teenage Diaries Revisited, we're finding out what happened to these teenagers.
AMANDA BRAND: Hello. Nope, wrong button. There. Hello.
JOSH CUTLER: Let me do the introduction now. My name is Josh.
BRAND: My name is Amanda.
MELISSA RODRIGUEZ: My name is Melissa Rodriquez.
FRANKIE LEWCHUK: Hi, my name is Frankie and I'm going to give you a little tour from my Cadillac here.
JUAN: Here I am. My name is Juan and I'm here in the U.S.
CUTLER: It's my radio show, thank you.
(SOUNDBITE OF MUSIC)
CORNISH: Years ago, those teens told their stories on our program with help from independent producer Joel Richman of Radio Dairies. And that last voice we heard...
CUTLER: It's my radio show, thank you.
CORNISH: ...is Josh. He's now in his 30's and what he shared on ALL THINGS CONSIDERED back in his teens went beyond your average awkward high school experience. Josh has Tourette's, a disorder that causes involuntary ticks and verbal outbursts.
Here's his new radio diary.
CUTLER: And action. OK. My name is Josh Cutler. Here we are in my room. It's the same room I grew up in. It was exactly the same room that I was recording my first show in. So now here I am, 16 years later.
CUTLER: Here, here it is. Here is. Which laundry are we doing first, the whites or the colors? Whites?
CUTLER: OK. Here we go, stupid (unintelligible). In you go.
I still live with my parents. But aside from that, I would certainly save my life has changed quite substantially. For everybody who's listening out there, I mean, is your life the same today as it was 16 years ago? Probably not.
(SOUNDBITE OF COMPUTER TONE)
CUTLER: OK, let me log in to my email. What? Where? Great, two more girls just wrote to me. All right, I'm going to call up my dating profile. I'm typing in my screen name, password, to log in. Just says I'm a 33-year-old man from New York. Says that I'm never married, didn't...
CUTLER: I have an athletic and toned physique and am five foot seven, and Jewish and I don't smoke and I drink moderately. I'm not laid-back or low-key or down to Earth. There's no mention of long walks on the beach. It's actually slightly aggressive but that's just my temperament. You know, that's just how I am.
Sixteen years ago, I did a story about growing up with Tourette's. In order to understand what my life was like then, as opposed to now, I guess it's something you'll really need to hear for yourself.
(SOUNDBITE OF 1996 RADIO DIARY)
CUTLER: Hi, my name is Josh. I'm 16 years old and I live in New York City. If you saw me on the street you wouldn't notice anything different about me. I mean I look just like a normal person.
(SOUNDBITE OF A MOAN AND SCREECH)
CUTLER: I have Tourette's syndrome. It's a neurological disorder that...
Basically I had absolutely no control over anything I said.
(SOUNDBITE OF SCREECHING)
CUTLER: Everybody thinks things that they wouldn't actually say, but my filter wasn't there.
(SOUNDBITE OF 1996 RADIO DIARY)
CUTLER: You suck. Sorry.
And that's why sounded like when I was in high school.
(SOUNDBITE OF SCREECHING AND SCREAMING)
CUTLER: And I still have ticks all the time but I'm not out of control like that.
(SOUNDBITE OF NOISE)
CUTLER: I remember, back when I was in high school, people expressed concern. And a lot of them said that I wouldn't really amount to anything, that I shouldn't even bother going college. In their view, I was - my life was so overwhelmed by Tourette's that they didn't think that I'd be able to do it. So I've basically built my entire life on proving people wrong.
(SOUNDBITE OF BANGING)
CUTLER: Here is my diploma from Vassar, which is in Latin. And I got off to a rough start in college but since I did such a good job turning it around, that I won the Leo M. Prince prize for The Most Noteworthy Improvement. This probably isn't an award that anybody sets out in advance to win.
Here's my Hunter diploma, where I got my Masters in teaching ESL, English as a second language. I started teaching in September of 2004, in a third grade class at an elementary school in Queens. I was an awesome teacher. But I've been suspended with pay for my teaching duties. So now I'm fighting the charges and I've been waiting for well over a year for a decision. These things take a while.
CUTLER: A really long while. Some teachers have waited years without getting a decision. I'm still employed by the New York City School System. And since I'm not allowed to teach for the time being, I'm just sitting around in limbo. But we'll talk about that later.
(SOUNDBITE OF AN ALARM)
CUTLER: No matter how bad of a day I'm having, as soon as I come here that basically disappears.
This is like my therapy, jujitsu. The only thing that takes precedence over jujitsu in my life is when the Yankees are in the playoffs - nothing else.
UNIDENTIFIED MAN: Ready. (Foreign language spoken) One, two, three.
UNIDENTIFIED MAN: One, two, three.
UNIDENTIFIED MAN: One, two, three.
CUTLER: In order to cope with the stress of the having ticks all the time, your body needs some type of outlet on that level that can adequately deal with it.
UNIDENTIFIED MAN: (Unintelligible)
CUTLER: Jujitsu has had a profound effect on making by Tourette's better. That's the main reason I decided to do it.
UNIDENTIFIED MAN: (unintelligible) One.
STUDENTS: Kick. Kick.
UNIDENTIFIED MAN: Two.
STUDENTS: Kick. Kick.
CUTLER: Now I've met people who are surprised when I tell them I have Tourette's.
STUDENTS: Kick. Kick.
UNIDENTIFIED MAN: Two. (unintelligible)
(SOUNDBITE OF A RINGING PHONE)
CUTLER: Hello. Hey, Heather. Good. You going to be around tonight? Great, OK.
So I have a date tonight. It's the first date. I've never met this girl before. I'm going to wear my - the same sweater I wore today, the same jeans I wore today. I don't really care about putting together some type of ensemble - just go as I am.
(SOUNDBITE OF RUSTLING)
CUTLER: That's usually how I roll. Putting my shoes on.
Dating with Tourette's is really not as big of a deal as somebody could potentially think it might be. Everybody has some baggage.
(SOUNDBITE OF A DOOR CLOSING)
CUTLER: Hey, Dad.
(SOUNDBITE OF A TELEVSION)
CUTLER: What's going on in the game?
RICHARD: Aww, Pettage(ph), it's three nothing with...
CUTLER: I'm texting the girl. I'm telling her I'm on my way.
RICHARD: You know, Josh.
RICHARD: When you are out on a date...
CUTLER: Oh, God.
RICHARD: Oh, your mother and I wonder about it. Sooner or later, if you get close to a girl...
RICHARD: ...you've got to reveal it. You've got to discuss it. You can't...
CUTLER: Now, why don't I just bring you out on a date with me and you can tell me what to say?
RICHARD: And we...
RICHARD: We can't obviously tell you how to run the most intimate part of your life. But if you want some help, I mean, open up to them about this.
CUTLER: Oh, I'm willing to be open and vulnerable. But it's not necessary. I want the date to be about me as a person, not me having Tourette's.
RICHARD: Look, quite frankly, Josh, I think you'd be surprised by how much, if they like you, they will empathize. But, you know, that's a father's advice which is meant to be ignored.
CUTLER: Oh, I better get going.
RICHARD: What time is your date?
RICHARD: Oh, for gosh sakes, Josh, it's 9:33. Come on, Josh. Get out of here.
CUTLER: I'm heading out.
In case you listeners were wondering, certain things I just don't feel comfortable recording.
(SOUNDBITE OF DOOR CLOSING)
CUTLER: Which Red Hook do you have there?
UNIDENTIFIED WOMAN #1: I have the pilsner and the ESP.
CUTLER: I'll have the ESP, please.
Yeah, that date didn't go very well. Now I'm at a bar with my friend, Dave. Why don't you introduce yourself.
DAVID: I'd love to. I'm David. Josh and I have been best friends for the last eight, 10 years now.
CUTLER: More than that.
DAVID: Since we were in college. So, tell me about the lady situation.
CUTLER: I've had ebbs and flows. I had a really good date with a girl last week. Since I've only had one date with her, I'm not going to say her name just yet, because it's as of yet to be proven whether she's important enough to be mentioned in my show.
DAVID: Does it start with an M?
DAVID: Does it start with an N?
DAVID: Okay. So you meet a girl on a dating site or somewhere, does it come up in conversation that you have Tourette's?
CUTLER: Usually happens during the date. Like they'll usually see me having ticks and say what's going on. And I'll just let her know and the whole discussion will last maybe 15 or 20 seconds. And then that will be it.
DAVID: OK. From my perspective, like when we first met, I knew something was a little bit off, right? But I didn't care. You know? It doesn't really matter.
CUTLER: It's true.
DAVID: You're little bit different. So am I.
CUTLER: How do you see me having changed since college?
DAVID: Well, certainly more calm, more sedate, I would say. I mean, everything is relative. You're not a particularly sedate person, but...
CUTLER: You noticed that.
DAVID: No, but in college, you'd just be bugging out, ticking all the time. You'd go through these ticks where you'd, you know, flap your arms kind of like a bird. Remember? There was a period when you'd walk through a door and immediately go, whoo, every time you'd walk through a door. That has certainly left you.
So to the naked eye, it seems like Tourette's impacts you less now than it did maybe 10, 15 years ago.
CUTLER: That's unequivocally the case.
DAVID: How does it manifest itself, though? Like, does it affect your day to day life?
CUTLER: It does, but certainly not to the degree that it did.
DAVID: I'm going to get another beer. Next round's on me.
CUTLER: All right. So it's a Sunday morning. I'm sitting here in my plaid pajama pants and my T-shirt. I'm drinking my coffee that I just made, which is a blend of Dominican Barona and Guatemalan Finca and I have it on a little coaster next to my computer. As far as ticks go, you know, when I'm at home and nobody's around, or it's just me and my parents, then I have ticks all the time.
But I never expose the worst of my ticks to the public. But in order to really give an accurate explanation of what I deal with every day, I guess we need to have some ticks in my story. As far as trying to record ticks, it's kind of like going into the forest and being a wildlife photographer. You know, the animals don't come out on command just 'cause your there and you want to take pictures of them.
They'll either show up or they won't. But at least I'll give it a shot, so here we go. I'm lying on my bed in my room on my side with part of my head on my pillow. I have ticks all the time, but once the tape recorder goes on, then I feel like it's - I feel very self conscious about it and I kind of clam up, I guess. There's some that I would just never share at all and there are others that, I guess, they're less embarrassing and I guess I'll record those.
If you could see me, you'd see my face twitching a little bit right now. I'm also clenching my toes and moving my legs a little bit and my face is having a few twitches here and there. I'm listening to the traffic outside. (Makes noise) That's enough. I'm done.
CORNISH: In just a few minutes, we will return to Josh's radio diary. As he explained, Josh had been teaching third grade ESL in the New York City public schools, but he has been suspended from the classroom. We'll hear why when our program continues.
(SOUNDBITE OF MUSIC)
SIEGEL: From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.
CORNISH: And I'm Audie Cornish. We return now to our series Teenage Diaries Revisited and Josh's story. He suffers from Tourette's and as he said a few minutes ago, he was a teacher, but he's been suspended and is awaiting resolution of a disciplinary case against him. Here is the conclusion of Josh's radio diary.
CUTLER: Hi, it's Josh again. I'd like to tell you about something that happened to me yesterday while I was out running. I left my house and I stopped at a gas station. And I was standing in the parking lot drinking a Gatorade. I guess I must have been having some ticks. I don't really know for sure. And all of a sudden, the cops pull up and come up to me.
He started questioning me about whether I'm angry about something. I told him I'm not angry about anything. I later find out that somebody reported me as an emotionally disturbed person. And then it made me wonder. I mean, is my behavior really that strange that somebody would mistake me for being emotionally disturbed?
So I just got off the 7-train in Flushing. I'm walking down Main Street. In New York, the place where teachers are sent when an allegation is made against them is referred to as The Rubber Room. I'm going to go swipe in with my cybershift card that records my attendance. How are you? Good. Have a good weekend? The hours of my day are 8:30 in the morning until 3:20 in the afternoon. I'm basically sitting in an office, helping out with various chores that they need done.
All right. So I'm going to make some copies, hold on. As of Monday, March 18th, I will have been in The Rubber Room for two years. My parents think I should leave and go do something else, but I'm not going to do that. Oh, I'm fighting this to the very end, no matter what. This is what I'll continue to do until my situation is resolved, whenever that may be.
During my seventh year of teaching, I had a class which was much larger than I ever had before. I also had a very violent group of kids. I would sometimes have to grab their arm to stop them from being seriously injured. And one of the most violent kids in my class accused me of intentionally bending his wrist to try to hurt him, that I hurt him and said bad words to him.
He said that I was doing this repeatedly. Well, yes, I did break up fights repeatedly, but I never intentionally caused harm to a child. Of course not. I was a great teacher, probably still am. I didn't always have the best test scores or the most beautiful classroom, but when I would read to the kids I'd make up all kinds of crazy voices and I'd act everything out.
Like, if a character was clumsy, I would actually get up and fall on the floor 'cause I understood them and they understood me in our own ways. I'm getting out the transcript of my teacher termination hearing. Here's the sound of all the documents relating to my case falling on the floor. It says New York City Department of Education versus me. I'd like to read you some of the testimony.
A colleague came into the hearing room and here's what she actually said. Question, why were you afraid for your safety? Answer, people in, she mentions the name of the school, know that Mr. Cutler has some bizarre tendencies. Question, what do you mean by that? Answer, well, so Mr. Cutler has openly told me that in social situations, he doesn't always behave appropriately because of medical issues. Then a few minutes later, and his behavior is unpredictable and it's strange.
I've been thinking that over every single day, even though that moment occurred over a year ago. Did she say what everybody else was feeling, too? You know, I've spent my whole life trying to act in such a way that people don't think I'm unpredictable or bizarre. I've been questioning it ever since, whether I really have been doing such a good job of appearing normal to the outside world.
I'm eating with my mom. We're eating some stuffed grape leaves, since we haven't had time to make dinner just yet.
MIRA: So what do you want to talk about?
CUTLER: My question to you is what do you feel the biggest changes you've seen in me are over the past 16 years.
MIRA: How have things changed?
CUTLER: Take a minute to reflect.
MIRA: When you were younger, I could come between you and all the people who didn't understand your illness. Now, you're a man and you're out in the world and when the world doesn't understand, there's nothing I can do but stand and watch you get hurt. That's how things have changed and that's really hard.
CUTLER: I could imagine so.
MIRA: When I watched you in your teaching, the thing that I felt was that they obviously saw your symptoms, but children accepted you for who you were and I think that's why you loved teaching so much. I think the Tourette was more under control. But now, in the void that losing the teaching has created, I think that your symptoms have gotten much worse.
You look like you wish I hadn't said that. You know I think you should just move on.
CUTLER: It's exactly what they want and that's why I'm not doing it.
MIRA: I know that, but I hope you find your way to something else. I think it would be good for you.
CUTLER: I know.
MIRA: I felt that you separated from us a lot less since all this happened.
CUTLER: Well, of course.
MIRA: You know, the fact that you're still at home...
CUTLER: Well, try not cooking so well.
MIRA: You say it's the cooking.
CUTLER: It's not just the cooking. It's the laundry. It's the everything.
MIRA: As long as the world keeps proving an unsafe place, I don't think you're going to want to leave.
CUTLER: Given everything that's happened, I think it's a pretty understandable feeling to have.
MIRA: I'd agree. And I think that the cooking and the cleaning...
CUTLER: They're really secondary.
MIRA: They're secondary to the feeling of safe harbor.
CUTLER: Is there anything more you want to cover? 'Cause I've really reached my attention span limit with this. All right. Let's shut this off. I picked the song that I want to close my program with. It's "No Man's Land" by Winger. It's awesome. I don't know that it's my absolute favorite song, but it's certainly one of them and it's a good way to close out a show. If I do another radio show in 16 years when I'm 50, maybe I'll talk to you then. And cut.
CORNISH: Josh Cutler lives in New York City with his parents, Mira and Richard. Josh's story was produced by Joe Richmond and Sarah Kay Kramer of Radio Diaries and edited by Deborah George and Ben Shapiro. At our website, you can hear the old Teenage Diaries and find out about our search for new teens to tell their stories. Submissions are due by May 31st. That's all at NPR.org/diaries. Transcript provided by NPR, Copyright NPR.