Captions by Tom Wilson. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014 1 1 Good evening, ladies and gentlemen. My name's Paul Barrett, and I have Tourette's syndrome. (PLAYS POIGNANT MELODY) About six years ago, the playwright Michelanne Forster, who has known me for quite a long time and in a number of whose plays I have appeared, she said, 'I never knew you had Tourette's,' and she immediately said, 'That's your one-man show. Yes! And we'll have a piano, cos you're a musician too,' and` and she immediately conceived the whole thing. For most sufferers, Tourette's syndrome is characterised by compulsive and convulsive twitching or ticking. I don't recall observing it in myself. First I rec` The first person was a little friend of mine, a school-age friend. I was about 8 or 9, and I still recall to this day to the exact point on the pavement where we were, um, when she said, 'Why do you keep doing that?' And I had this compulsion to keep turning in circles. And then I had to turn the other way to, sort of, balance it. And I remember Lynn pointing at me and saying, 'Why do you keep turning round like that?' Of course, I had no idea. It was` It just felt good. It was something I had to do. And she made me immediately, of course, conscious that, yes, I was doing this, and I had no answer for it. But that was just the beginning, you know. By my teens, they were pretty bad. My name is Analise Twemlow. (LAUGHS) I` <BLEEP> I'm 10 years old, 11 in November. Snowface! Snowface! BOTH CHUCKLE Shut the <BLEEP> up! I have <BLEEP> Tourette's syndrome, so, um, <BLEEP>, like, <BLEEP> I` Sorry, I'm just... (SIGHS) I've... I <BLEEP>` I have tics, so please don't pick on me and stuff like that. WOMAN: Yeah? <BLEEP>. And... they <BLEEP> can` And they <BLEEP> say <BLEEP>... (EXHALES) I'm Matthew. I'm nearly 14. I live in West Melton. LAID-BACK GUITAR MUSIC It's like` When you do something, it's like` it can be a vocal or physical tic, where you` it's like a hiccup. You can't really control it. But some people` Like, I can control it every now and then. Yeah. I'm Tania Humphreys, and I live in Rangiora, and I was diagnosed with Tourette's about seven, eight years ago. CURIOUS MUSIC I've got four kids aged from 17 to 3. It's just a big joke, pretty much, to them. They find my tics hilarious. Yeah, they know to avoid Mum when Mum's ticking. CURIOUS MUSIC CONTINUES The rabbit's trying to eat a big pellet. Hello, rabbit! She has some rude tics that you don't say, but some tics, you can go, 'Honk, honk, toot!' I know that one. And she can hit Caden eight times like this. I know that! Cos he hates it. But every time at dinner, she hits Caden. (LAUGHS) I've burnt myself in the kitchen. I've had a small tic and dropped a ham steak into a pan with a bit of oil in it, and it splattered up and got me, but, yeah, other than that, I don't really... worry too much about it. So` Oh yeah, and throwing drinks at people. Now, these tics are mainly physical. There's, oh, eye blinking, neck jerking, shoulder shrugging, jaw jutting. You name it; we'll twitch it. Yes, eyes in the head, mainly. They're very common ones, those. You see a lot of people with Tourette's doing variations on that over and over again. It's exhausting and deeply humiliating, because you` because, of course, you're completely conscious. You know, it's not like a fit, where you` you black out. You're horrendously conscious that you can't stop it. I've had a throat-clearing tic, so I was always going... (CLEARS THROAT LOUDLY) Um, I've, um, used to clap my hands and stomp my feet, and my husband called that our 'ole' tic, cos it was like a Spanish sort of thing to it. Um, I hit myself. I hit other people. Like, sometimes my hands will go flying out, and I'll collect somebody, um, or they can be just right there when my hands go, and they get` I now kick. I swear sometimes. Um, I have` What else do I get? I have a lot of vocal ones where I go... (CLICKS TONGUE) or 'pop, pop, pop'. I, um, have to go 'honk, honk' and 'toot, toot'. There's a lot of those sort of ones. PEOPLE CHATTER Honk, honk, honk. People think it's that thing where you yell out obscenities or profanities in very inappropriate places in public. Well, I'm sorry if this disappoints you, but only about 10% of people with Tourette's have that particular potty-mouth syndrome, and I'm not one of them. So piss off, you <BLEEP>ing voyeurs. Just kidding. <BLEEP> I've` I say` <BLEEP> I say` <BLEEP> I say` <BLEEP> I say the F-word. I` <BLEEP> I used to` I` <BLEEP> I` <BLEEP> Sorry. I` <BLEEP> I, kind of, do pull the finger sometimes. Coprolalia is the urge to express or release inappropriate words in inappropriate places and in inappropriate times. Um, I think it probably has something to do with that adrenalin response of saying something that people, sort of, react to, and it gives them that nice kind of positive` well, not positive but, you know, a good reaction. So, um, how it happens I really don't know, because you can have children as young as 5 with coprolalia. And it's just` I don't know. Don't know where it comes from. It's a really bizarre, bizarre tic to have. I am! <BLEEP>! <BLEEP>! I am! It's not in there. Hey! Sorry. She is on the severe end of the spectrum for Tourette's syndrome. She has quite severe motor tics as well as the vocal tics. I don't know. I don't know` Nobody knows why they get the coprolalia. It's just, um, luck of the draw, really. Only about 10% of people with Tourette's have that. Only about 10%. But they're the ones who get interviewed on Oprah or who get mocked ` and that's fine ` on South Park. Have you seen that episode? Somebody, 'Oh, I've got Tourette's.' (BABBLES, GULPS) Or` Or` Or, um, what's the other one? There was even a character in our own Shortland Street who had coprolalia. (PLAYS CABARET MELODY) # Now, you might have heard the word coprolalia. You might have asked yourself, 'What does that mean?' # Well, 'copro' means 'faeces' in Greek. Yes, poos. # So coprolalia means talking obscene. <BLEEP>! <BLEEP>! # Yes, it's fun to learn Greek the Tourette's way. (YODELS) # Yes, it's fun to learn Greek. It's so easy to speak. (YODELS) # (SNORTS, SPEAKS RAPIDLY) <BLEEP>! <BLEEP>! It usually starts in childhood. It's usually at its worst in teens. It's often gone through the 20s and early adulthood. Not in my case, unfortunately. Early puberty, and my tics are getting more and more noticeable, especially to my mother. 'Ken, you really need to have a word with Paul. 'I can't take him anywhere without him doing all this twitch business. Ken, are you listening?' 'Mm?' 'Paul. He` He came into the bank the other day. Everyone noticed.' 'Can't say I've noticed anything myself. Sure he'll be fine.' Oh, Dad, I wasn't fine! By teens, um, I was in full flight with the` the` the obsessive repeating, um, tics with eyes, head jerks, sniffing ` um, not too many vocal ones; um, mainly physical ones. And which` which` The bugger of it was ` apart from the humiliation, the fact that you get very sore` is that as if being a teenager wasn't difficult enough anyway. You're already sore, you're growing, and you're` it's strange things and, you know, wonderful things too, but it's a funny period, and you go mad for a few years. All boys go insane for a few years and then come back again. Uh, Karl. Uh, Karl. Building roads. Uh, Karl. Building roads. Building roads. Yes! Yes! Anything else? Yeah, James. Schoolwork is harder for me, easier for them. ALL CHATTER When you're always ticking and doing stuff, it's hard to focus. 'It's like when you're doing a math equation, you do a tic, and then you lose it.' He got into a lot of issues and trouble at West Melton School and was bullied quiet a lot and would just sit in the playground by himself or sit in the classroom and had no friends. I'd get a phone call at least two or three times a week at work. 'Come and pick him up,' or, 'He's been in a fight.' It's really sad to watch. It's horrible. And the tics` He's quite good now. He's actually very good at the moment. But some of the tics were horrible, and they changed, sort of, every month. They` There's something different. He has really bad nightmares, gets up screaming, running through the house. We've found him out in the backyard in his underwear. Um, he just gets out of the house, so we, um, have to barricade the doors and put mattresses up and bolt all the doors at night. We'll stand this mattress here so he can't go through the glass. This mattress here then slides across here. Yeah, it's across there. You gotta try and stop him from getting out, but you gotta make it so he's not gonna hurt himself if he is trying to get out. Mm, cos he runs really fast when he is out of bed. He just runs, and he's screaming, and he doesn't know where he's going. LULLABY MUSIC (YELLS) They get deemed to be, um, naughty, cos they're disruptive in the classroom. They're deemed to have learning disabilities, because they can't complete their work as fast as their peers. And then a lot of them do get, sort of, tested, and they're above average intelligence. A lot of parents I've talked to homeschool their children. The teachers and the kids don't understand them. The children get so distraught at disrupting those peers. They're very hypersensitive, um, and they feel` you know, they feel other people's, sort of, feelings towards them. And they don't want to distract people. They don't want any undue, you know, attention or pressure or what have you on them. Today we recognise Tourette's is a neurodevelopmental disorder. Neurotransmitters regulate messages through the basal ganglia, shown here in fetching lime green. The messages are sent through the prefrontal cortex, shown here in cheerful chunder yellow. But when they pass through the thalamus, shown here in this soothing shade of sky blue, the messages get screwed up thanks to susceptibility genes. So basically the syndrome is caused by faulty dopamine regulation at critical points in the brain's circuitry. In plain English ` my wiring is crap, and my filters are <BLEEP>ed. Toure` <BLEEP> Tourette's is a neurological <BLEEP> disorder that I have no control over. CHILDREN CHATTER Is that gonna work, you reckon, now? It's a neurological disorder where from my understanding is there's a part in the middle part of your brain that has, um, not wired properly, or it's sending signals wrong. And, um, yeah, so it just is flashing off all these impulses, and it's not filtering out, um, them. So, like, a normal person will be walking down the road. Their br` They might see somebody who looks really awful. Um, their brain will say, 'No, just keep walking.' Um, my brain might say, 'Uh, yell out "fatty",' you know? And it'll be like I can't not do it. It's not necessarily abuse towards people. It could just be that, um, I want noodles, so I'm gonna be walking around the supermarket screaming 'noodles'. It's` It's called, clinically, the premonitory urge. You know the word 'premonition'? People don't use the word 'premonitory' often as an adjective. To have a premonition ` the sense that something is coming. So in, sort of, clinical analysis of this condition, it's called a premonitory urge where you think, 'Oh God, here it comes. I'm going to twitch.' I have, like` It's like a build-up of energy at the back of me ` at the back of my shoulders or neck. I can just feel this, like, urge coming. And so it's not all the time; it's just some of the time. And so I can just` just be able to stop, put something down, move back, um, just` It's only a couple of seconds before it happens, so it's not like I've got big warnings. So` But, yeah, it's just like this build-up of thing behind you, so, yeah. High school ` the fourth form. It was there that I met my nemesis. Let's call him Gavin. 'Hey, Barrett, come here. Hey, Barrett, why do you keep doing this? Hey, what a bloody freak. 'You bloody mental? (CHUCKLES) Bloody queer? (GRUNTS) Oh, he's gonna cry. Oh, boohoo!' I had always been an easy target for bullies, but I was beginning to learn that acquiescence confuses the hell out of stupid people. 'Yeah, well, you must be a bloody` bloody mental.' 'That's right, Gavin. I must be mental.' 'Yeah, well, you must be a bloody spastic.' 'That's right, Gavin. I must be a spazzy. Couldn't have said it better myself.' 'Well, yeah, well,... yeah, well,... 'well, you giving me cheek?' 'Moi, le chic?! 'Absolument pas. Je vous assure, Gavin.' 'Huh? Bloody freak.' Uh, there was always that one, yeah. WOMAN: Tell me about that one. WOMAN: Tell me about that one. Uh, he used to pick on me a lot, and he was annoying. Like, at school, he used to just come along and hit me in the arm. It was annoying. CHILDREN CHATTER LAUGHTER LAUGHTER Slide it! REFLECTIVE MUSIC CHILDREN CHATTER CHILDREN CONTINUE CHATTERING 1 Uh, <BLEEP> I love playing with my friend Amanda and Hannah and stuff and Claudia and Liam and stuff and Alice and... if they would let me play sometimes. (LAUGHS, INHALES) and Alice and... if they would let me play sometimes. (LAUGHS, INHALES) WOMAN: Yeah? What sometimes happens? Well, <BLEEP> sometimes they wanna` <BLEEP> sometimes they wanna play by themselves. <BLEEP>. And yeah. CHILDREN CHATTER At primary school, it was really hard, because I didn't have anybody I could turn to. We moved schools lots. Um, it was, like, really really hard. And it took me till I was about 15, and I went, 'Nah, flag this, you know. I'm not gonna be like everybody else. I'm not gonna try and fit in.' And that's pretty much when the picking on stopped. You know, I gave up trying to fit in. I embraced who I was, and, um` and stuff, and people just went, 'Oh, OK, hello,' and all of a sudden, I have all these people I don't know saying hello to me. Well, I was so odd. I was into music and theatre, and I twitched. I mean, God, what chance... (LAUGHS) did I have? No wonder. (SIGHS) Now, I'd always known where my future lay, but it was customary to have a little consultation with the school careers adviser. So, 'Oh, come in, Paul. Uh, sit down. So, uh, what areas do you think you might be interested, then?' 'Oh, I'm going to be an actor.' 'Uh, oh,... (LAUGHS) yes, very amusing. No, I meant as a job.' 'Well, I'm` I'm gonna act. I wanna act professionally.' 'Yeah, but you thought about maybe being a` a plumber or a` or electrician or...?' 'A plumber or electrician? Oh, uh, oh, well, no, I` I can't say I've considered those, um, options.' I try to give his suggestions some serious consideration. Mm. # Plumber, plumber, plumber, plumber, plumber. # Electrician, trician, trician, trician, trician. # I'm on a building site. I'm wearing an unzipped blue boiler suit. I approach a fuse box. Suddenly, inextricably, I feel this overpowering urge to... (STRAINS) stick this screwdriver into this socket. Oh, it's so bad I can taste it. No! Yes! No! Yes! No! (IMITATES ELECTRICITY CRACKLING) Arggh! 'Um,... (LAUGHS) uh, sorry, sir, 'I` I really think perhaps in my future career I should be kept away from live wires.' SHOUTING, CHEERING For goodness sake! As soon as you two get` It's always the same people. PEOPLE SHOUT BANG! Now, ain't nobody gonna start nothing. This here's a party. Andrew, sing. (SINGS) Dum, dum-de-dum, dum, dum. # The farmer and the cowman should be friends. ALL: # Oh, the farmer and the cowman should be friends. That's more like it! That's more like it! # One man likes to push a plough. The other likes to chase a cow. # But there's no reason why they can't be friends. # Acting was the early` a very early instinct I had to perform and to entertain, so it was never a choice. It was always a sense of vocation that this is what I was going to do. Thanks, everyone. Thank you, everybody. Thanks, Paulie. > Thank you, everybody. Thanks, Paulie. > Good work. I'm hoping to become a midwife. I've gotta go back and redo my Pre Health at polytech, because it's been too long since that. That's so that we know it's your balloon. It's got your name on it because Jacob's balloon's blue too. BALLOONS SQUEAK, HISS 'I spoke to a couple of ladies when my friend was pregnant at one of her antenatal check-ups, 'and they were` I was` I said about swearing at them while telling them to push and stuff,' and they were, 'Oh, no, by that stage, we'd know about it, and it'd be funny.' So it depends on the people you get. Obviously, there's people that do not want somebody ticking and saying 'boogers' or something, you know, or 'shove it back in' once the baby's born. But, um, that's just the way it goes, and, um, you know, they will say, 'Look, you're not for us.' And you'll get others who are relaxed and can handle somebody going 'woohoo'. I wanna <BLEEP> be a kindergarten teacher <BLEEP> when I grow up, because <BLEEP> I love children. Actually not that sure yet. Still thinking. Wellington, 1980. I'm 23 years old, and I get offered my first professional gig. Now, Circa Theatre was a tiny space. Only seated 100 people, so the audience was very close. Very very close. Never mind. I'm on. Oh no, this is a new one. I get obsessed with popping and flaring my eyes. Oh shit, stop it! Stop it! Oh God, I feel like a cheap model. (GRUNTS) Anyway, the, uh, after-show drinkies, this, uh, quite well-known film director comes up to me and says, 'Well, interesting new talent on the scene, yeah. Good performance up there. 'And I love that little flaring thing you did with the eyes. Nice character touch.' And, of course, I was absolutely horror-struck. I had convinced myself that maybe they couldn't see it. Maybe they couldn't` But the audience is only that far away. Of course they can see it. But... it didn't stop me, and it didn't stop people casting me, I guess, so here I am. PEOPLE SHOUT # The farmer and the cowman should be friends. # Oh, territory folks should stick together. Territory folks should all be pals. # Cowboys dance with the farmers' daughters. Farmers dance with the ranchers' gals. # My grandad once told me I should go get an operation, and I was, like, 'No, no, no, no, no.' And he's, 'Yes, there's operations that can fix you,' and I'm, 'No, no, no.' And in the end, I said, 'Look, I don't need to be fixed. There's nothing wrong with me.' And, um, I think he told me I needed a lobotomy at that stage. Um, it was really` It was all really funny at the time. And, um` Yeah, but it was, like, 'I don't want it. I don't need it. It's not stopping me from living. There's no point in changing it.' So, yeah. So that's how I feel about it. So, yeah. <BLEEP>. <BLEEP>. It was fine for me, I'd probably` <BLEEP>. But` But` <BLEEP>. <BLEEP>. <BLEEP>. But not for my mum and dad. They're` They're` <BLEEP>. They feel it. They're, like, 'Oh my God. <BLEEP>. Oh my God. <BLEEP>. Stop that, Analise. Stop it. Stop that.' And they` <BLEEP> they were getting really annoyed at me. And, um` <BLEEP> And` And` And` <BLEEP> And` I'm just, like, 'No, I can't stop, Mum.' Yeah. You know, 'I'm so embarrassed. Can't you stop?' 'Oh, well, all right, then.' (LAUGHS) 'I was having such fun too (!)' No! Do you...? As I say in the play, 'Help me!' (LAUGHS) Just bloody help me. And it's not as if` Somebody said to me recently, um, helpfully, 'It's not as if they knew what it was in the '70s.' I said, 'It was diagnosed in the 1880s by Gilles de la Tourette.' <BLEEP> But I <BLEEP> <BLEEP> have a <BLEEP> pulling the finger tic. WOMAN: Mm, yeah, I imagine that could be quite annoying for you, eh. WOMAN: Mm, yeah, I imagine that could be quite annoying for you, eh. Yeah. Uh, yeah. (LAUGHS) Analise had always displayed traits of, um` Well, she is ADHD ` very much so. Um, but she also had displayed traits of OCD and, um` and those sorts of things. And then after the earthquake, um, she started cartwheeling, and she couldn't stop cartwheeling and cartwheeled everywhere, and we'd say, 'Analise, you can't do that. This is a shopping mall. Stop cartwheeling.' Telling her off. Sort of, 'Stop that.' Um, but she just couldn't stop, uh, and then not long after that, she started vocalisations ` um, noises ` at the beginning. Just really annoying noises. Um, and then she began stuttering, um, and so one day I just couldn't take the noise any more, um, and rang up the child mental health services and said, 'I can't do this any more.' Um, so we went back, and we probably had six months of her being, sort of, observed and being put on medication for ADHD. Um, and then just one day out of the blue, 'Oh, we think Analise has Tourette's syndrome.' ANALISE YELLS We don't treat her any differently. If we want to go out, we go out. Um, someone once said to me, you know, 'How can you let her go out like that? Why don't you just stay at home?' I thought, 'I'm not gonna wrap her up in cotton wool. 'She needs to be part of society, and besides, society needs to learn to accept her for who she is.' And all those people that sit there and make comments and, you know, um, think it's funny, don't laugh, because unless you know us, you shouldn't really laugh at us, you know? I'm` I'm happy for my friends to have a good laugh with me, because I know them; they know what it's about. But people that don't that sit there and make comments or judge you or judge the kids that have it that can't help it... Just ignore it. And, yeah, we can't` people like me can't help it, though. We can't help it, so, <BLEEP>, like, don't get angry if we, <BLEEP>, like, pull the finger at you. Just be like, 'Oh, that's OK. <BLEEP> I know you have Tourette's and everything and stuff.' You don't necessarily want people's, you know, overt sympathy, but you` you just want to be treated as normal, I suppose, you know. Because you are in every other respect. You're still normal. Just got this funny little thing you can't control, you know? (PLAYS MELODY) # If you meet a guy who is restless, obsessive but witty... # If you meet a guy who is fired up, impulsive, compulsive yet pretty damn smart, # but he just can't keep still,... # just won't switch off,... # don't be fooled by his antics. # Don't conclude he's an ass. # Don't send him off to the back of the class. # That guy you just met, # just let him be. # Cos that guy you just met ` # that guy you don't get ` # well, he might be me. # Captions by Tom Wilson. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014