Life with Tourettes

RAHNI SADLER: So tell me what your Tourette's symptoms are now. What do you feel? What happens to you?

RUTH: Uh, I often describe, for everyone else who doesn't have Tourette's as... It's... (TICS) ..like a sneeze that wants to come out and it's going to come out and you might as well just let it out. I also describe it as like having a fizzy can and you're shaking it and...Wankers. Wanking. (BOTH LAUGH) You have a fizzy can and you're shaking it and it's just better to just let it go. Urgh. Faggots. Buggeries. Once you let it out it just erupts and I think that's where I am with my Tourette's. (LAUGHS)To the Batmobile. Kick him in the nuts. Push him.

RAHNI: We first met Ruth Ojadi in East London...

RUTH: (AUSTRALIAN ACCENT) Another (BLEEP) dingo. Alright. Last one out's a wanker.

RAHNI: ..on the Underground, taking the train into town.

ANNOUNCER: This is a Piccadilly line service to...

RUTH: Shitville. (TICS)

RAHNI: For her fellow passengers, what she says is confronting.

RUTH: Can we kill him yet? When can we kill him?

RAHNI: For her, it's uncontrollable.

RUTH: Cellulite. (TICS) Wankers. (TICS)

RAHNI: Further north, in a Liverpool pub, Luke Montague is about to order a pint. It might take a while.

LUKE: (TICS) Bollocks. Bollocks. Wankers.

RAHNI: How does it feel, physically?

LUKE: Tiring.

RAHNI: Back in London, Jess Tom is being made up for a performance that will...

JESS: Biscuits. (TICS) Help. Biscuits...

RAHNI: ..take the biscuit. The word "biscuit" - why the word "biscuit"?

JESS: Oh, gosh, I wish I knew. Biscuit. Why certain words... Biscuit. ..become tics is a complete mystery to me. As well as being sometimes a worry - like, you worry what the next tic will be... Biscuit...it also can be quite a delight. Help. Biscuit. Sand. Help. I'm stuck down a well.

RAHNI: How do you go dating?

LUKE: (TICS) Wankers. Um, I did speed dating once. That was interesting. It was the only time I could offend women in bulk, to be honest.

RAHNI: Luke, Jess and Ruth have Tourette's...

RUTH: Oh, he's cheating on you. Urgh. He's cheating on you.

RAHNI: ..as do 1% of the population - 220,000 Australians. 10% of them have the form that compels them to swear but for most it's as mild as a facial tic or even throat clearing. It's largely hereditary and beings in early childhood. (TICS)

JESS: Action. Alligator snap. Help! I'm stuck down a well. And relax.

RAHNI: Jess was a small child when her Tourette's developed.

JESS: When I was about six...Biscuit...that's the first age that I can feel like I can date it and I made a sort of squeaky noise with my mouth and I remember knowing that I couldn't just stop.

RAHNI: At first, her behaviour - her tics - seemed little to worry about.

JESS: Biscuit. They were much, much less noticeable... (TICS) ..when I was younger than they are now, less noticeable to other people. The sensation hasn't actually changed that much for me.
My muscles will contract and move into uncomfortable positions and that can be painful. Biscuit. The sensation is... Biscuit. ..really overwhelming. It's like a constant surge of...sort of discomfort and it's impossible to be still. Sometimes it feels like there's itching powder in your blood and there's no way of being still or comfortable. Biscuit. Sand.

RAHNI: How are you feeling right now in your body, at this moment? Does it hurt? Is it annoying?

JESS: Biscuit. It's not annoying. It's... Biscuit. You know, it's difficult to describe something that's always been part of my life.

(LAUGHS)

RAHNI: What does it feel like when your body is doing these things? Do you feel like you have any control over it or are you arms just doing exactly what they want?

RUTH: What they want. My arms are doing exactly what they want and for me it's best to do that. I feel sometimes I get... I often describe my Tourette's maybe as like a two-year-old trying to escape and, like all small children, it's best just to let them get it out of their system.

RAHNI: Ruth is a 26-year-old singer. She has little control over what she says.

RUTH: Whoa. Wankers. (TICS)

RAHNI: It's involuntary...

RUTH: All hail Lucifer.

RAHNI: ..but what she says can...

RUTH: Lucifer. Wankers.

RAHNI: ..and does offend people around her.

RUTH: (TICS) Cellulite.

RAHNI: For reasons that mystify her, her condition is intensified when she's out in public.

RUTH: Penis.

RAHNI: She accepts it now but for many years she struggled to understand and to cope. Ruth now limits her day-to-day activities for fear of embarrassing herself and others.

RUTH: Knock, knock. Who's there? Lucifer. Hello, Lucifer.

RAHNI: Let's take Lucifer shopping.

RUTH: (LAUGHS) Indeed!

RAHNI: When was the last time you came clothes shopping?

RUTH: In an actual shop? Maybe two, three years ago.

RAHNI: Do you ever sit there and wonder why on earth this had to happen to you?

RUTH: When I first got diagnosed, every day, every minute I used to think, "Why me? I'm quiet. I do my work." (TICS) "No-one else seems to have it in the family. Why has it chosen me?" Wankers.

RAHNI: Tell me about some of the more negative experiences you have had.

RUTH: (TICS) I remember going to a restaurant, actually, when I had just been diagnosed. I didn't want to go out but my sister persuaded me to go out. Pirates. Oh, my God. It's a pirate. And I just wanted to get back into the car and go home and she was taking ages and I said, "Oh, what's going on?" She was like this. "Heading out." Apparently one of the guys had asked, "What's up with her?" and she'd stopped to explain that I had Tourette's syndrome and the guy said, "Oh, it's such a shame, oh," and I just thought, "I really don't want that to follow me," for someone to sort of just say, "Oh, that's such a shame."

RAHNI: To pity you.

RUTH: "Oh, she would have been OK," or, "She would have been fine if she didn't have that." I think that, for me, is worse than someone making a nasty comment because when someone pities you, it's almost compassion but in the wrong way and that's often harder to talk around or to make someone understand that, "No, actually, I'm OK. I'm actually living my life to the fullest," and it's just humanity but in a different way.

RAHNI: Taking a stroll - Luke will be with us in a tick. He wouldn't mind that line. He's turned his condition into his livelihood. Luke's a comedian. We met him warming up.

LUKE: Hello. My name's Luke. It's great to be here performing at the Hilton Hotel for one person in front of a mirror. (TICS) Wankers... As you can tell, I've got Tourette's and there are certain things you can't do with Tourette's which is bingo calling... Yes. My name's Luke I suffer from Tourette's...(TICS)

RAHNI: Later that night...

LUKE: (IMITATES SCOOBY DOO) Shaggy! I've never watched Scooby Doo. That's the (BLEEP) weirdest thing.

RAHNI: Exposing the lighter side of his Tourette's for an audience is one thing but being the centre of attention in daily life is another. The next day we visited Liverpool's Museum and Aquarium.

LUKE: (TICS) (BLEEP) off.

WOMAN: Wow! Look at the fishies.

LUKE: I find it physically tiring because you're trying to hold it in because you don't want to release the tic but you've got to release it eventually and you just feel physically drained, like you've just run a marathon. (YELPS) Your tensing everything up and when you've released it, there's that relief and you just feel physically drained.

(CLAMPS JAW)

RAHNI: Does that hurt? Do you ever hurt yourself?

LUKE: No.

RUTH: Rahni! She's got the runs.

RAHNI: So what else do you suffer from? You do have coprolalia - so you do have the swearing part - but you have so many other symptoms.

RUTH: Yeah. I have echopraxia - so that's the mimicking of people's gestures. I have echolalia - repeating back people's sounds. So I've become Australian. Oh, this is ace. This is bonza. Really is bonza.

RAHNI: You have today.

RUTH: Dingo. Dingo! (AUSTRALIAN ACCENT) Great big (BLEEP) dingo. I have a lot of wear and tear on my joints as well. For the minute, I've escaped knee surgery but I really think I'm gonna have to have it on my shoulder. I've had botox injections on my shoulder as well, to help reduce some of the movement. (LAUGHS) That's not really worked.

RAHNI: Jess, who's a childcare worker, has also suffered physically. She's sometimes forced into a wheelchair. So violent are her tics, her Tourette's can make her a danger to herself.

JESS: People respond differently, I think, when I'm in the wheelchair. I wear gloves that protect my knuckles from when I bang my chest all the time, padded gloves that protect my chest. Biscuit. Actually, people often worry about my chest. It stopped bruising years ago. Biscuit. It doesn't bother me anymore.

RAHNI: Yeah! Really?

JESS: But what does happen is my knuckles, if I don't wear the gloves, my knuckles sort of erode and crack and that can be very painful from the repetitive rubbing of the... Sand. Biscuit. (YELPS) Things like the plastic cutlery and plates and... Biscuit. Cups with lids - all of those things just take a lot of the unpredictability and challenge out of situations and keep me...drier. (LAUGHS)

RAHNI: It's easy to laugh but, for Jess, things can get very serious. Her tics become so intense they appear like a seizure. Jess asked that we show this. Have you ever felt embarrassed?

JESS' SISTER: No. I felt angry, a lot of the time, at people's reactions and I think that that's something that I feel much...I think I feel that more than you do. When people react badly I get quite grumpy about it 'cause she's my sister and I think the people pointing and laughing in the street is really... It's not OK. I've told a few people that.

RAHNI: Have you?

JESS' SISTER: Yeah.

RAHNI: What did you say?

JESS: She's quite fierce.

JESS' SISTER: (LAUGHS) I said, "It's OK if you want to come up and talk to us but pointing and laughing is not cool."

JESS: And claptrap. Claptrap and action! Hi. My name's Ruth and you're watching Sunday Night. This is take two. Biscuit, biscuit, biscuit, biscuit, biscuit. Dingoes.

HUGH RICKARDS: Tourette's syndrome isn't one thing, it's a bunch of things, maybe 50 things with 50 different courses all sort of the leading to this, roughly, the same sort of place.

RAHNI: Tourette's is little understood. It's not even known what triggers it but neuropsychiatrists like Hugh Rickards believe the secret may lie in the centre of the brain.

HUGH RICKARDS: We're pretty sure that a bit of the brain called the basal ganglia is the bit that's different and one of the things that the basal ganglia does is that it filters, drives, ideas and thoughts. And, really, what's happening in Tourette is you've got to a break down of that filtering process so you're getting, if you like, non-salient of thoughts or very mildly salient thoughts
coming right to the front of your attention, saying, "Do me now, say me now," and that's what's really happening, I think, in the brain of people with Tourette's.

RUTH: (TICS) Queer.

RAHNI: Did you choose to try and suppress it?

RUTH: Oh, yeah. I did a pretty good job of suppressing. However... (TICS) In the evenings when I used to go home, I was just exhausted, shattered, ratty, over it, and it just came out even more than what it would've. (SINGSONG) Paedo in a Speedo. It's a constant thing that you sometimes have to, you know, put your warrior suit on to be able to do anything with.

RAHNI: It wears you down?

RUTH: Yeah. Emotionally, it has been very crippling. I think that's the biggest part of my syndrome that I deal with - It's the anxiety and the depression, to be quite honest.

RAHNI: Yeah. What's the worst part? What causes the anxiety and depression to exacerbate?

RUTH: Just knowing sometimes that there is - this is it, this is the syndrome. It's not going to get cured. (AUSTRALIAN ACCENT) Oh, g'day. Time for 'Home and Away'. OK. Wicked. Shall we...shall we roll with it?

RAHNI: Perhaps most remarkable about Ruth's condition is that when she sings...

RUTH: Shut up!

RAHNI: ..it leaves her alone. Music is her escape.

RUTH: (SINGS) To kill a mockingbird Is to silence the sound that seduces you...
I'd always grown up with music. I played piano from when I was about five or six at my mum's and realising that when I sang, there was just some sort of release and I didn't tic doing it.
(SINGS) That burning fire in your soul to know you're still alive...
Just to be able to get, like, mundane tasks done, like cleaning the bath out, I realised that if I sang, I would just stop and I could get the whole bath cleaned in like 5 minutes instead of 20 minutes and without knocking everything over. So, it was just like, "Right. I'll do this."

RAHNI: On a mission to demystify Tourette's, to celebrate its humour and creativity, Jess has set up a website which gets thousands of hits every day. And when she's not doing that, she, Ruth and Luke help raise awareness in the wider community and offer support to fellow sufferers like 11-year-old Pearce.

RUTH: What I noticed with Tourette syndrome is that, err, any other condition, any other disability, people feel empathy towards that person. Whereas when you have Tourette syndrome, err,
it's a joke, it's a laugh.You can take it. There's something to be said for for being able to walk around and eff and Jeff, as it were. Happy birthday! (BLEEP) Happy birthday!

JESS: It's not my birthday! Thank you.

RUTH: You're gonna enjoy that since you... It's a (BLEEP) book. No. But there's so much more to the syndrome that people actually understand, you know.

RAHNI: If they found a cure for Tourette's, would you want to be cured?

LUKE: No. I wouldn't want to be cured because, you know, it's a part of me, it's who I am, you know. I don't see why I should change just because other people have a problem with it and it would feel like something was missing.

RAHNI: You wouldn't want it to go away? You wouldn't want it...to be less of a hassle?

LUKE: (BLEEP) you, you slag. No. I just wanna... I'm just enjoying being myself.

JESS: I created a... Biscuit...a superhero character called Tourette's Hero. Biscuit. I'm Tourette's Hero. Biscuit. I am the first, the world's first - biscuit - fully fledged Tourette's Hero - biscuit - superhero biscuit.

RAHNI: And what are Tourette's Hero's superpowers?

JESS: Being able to randomly collide words together and make people laugh. There's been a crisis. Imagination levels have plummeted... Biscuit..and we need your help. Biscuit. I'm not looking for anybody to feel sorry for me, biscuit, or want to try and fix me. Biscuit. I want people to understand, to think about it. Biscuit. To celebrate the interesting bits about Tourette's and if they know somebody with Tourette's or meet me offer support and friendship and empathy, biscuit. Can anybody think of a really good character?

RUTH: A dingo! (AUSTRALIAN ACCENT) Stole my baby!

JESS: Biscuit. And my mission is to change the world. Biscuit. One tic at a time.

RUTH: (SINGS) Can't you see how my heart yearns to misbehave.

END