Curiously, Renee Harvey's tics go away when she sings. When she raises her voice above the happy din of her two-year-old son Neko and sings her favourite songs, it's the only time her hands stay still.
The rest of the day, her hands pluck at her clothing: pulling her jersey down, tugging the bottoms of her leggings over her shoes, scratching her face, and sweeping flipping her hair from one side to the other.
She lives on a government payment with her son, in a small unit at the end of a cul-de-sac in Tahunanui, Nelson, in New Zealand.
"It's a nice quiet street," she says. "Though not when I'm here."
Renee was quiet as a child, but since developing Tourette's at age nine, she has been scolded, smacked, thrown out of libraries, sent out of classrooms, and laughed at, all for "naughty" behaviour she can't stop.
When she looks at you, she fixes you with beautiful green eyes. But the rest of her body is uncontrollable.
She stands, takes a giant leap on to the rumpled double mattress in the corner of her lounge, jumps on it and turns in circles, steps off with a spring and over to the kitchen wall, which she hits with both hands. She sits back down again, but her elbows jump out and she tucks and untucks her legs. She hums and makes bird-like whistles, and lately, in the last year and a half, has started making small spitting sounds.
She does swear a lot, though tries to cover it up with "flip" and "shoot" and "frigging". Still, her voice has a tendency to rip through the air in a startling shout.
"What are you doing, mate? Stop it, mate, stop!" she tells Neko, who is pulling off his clothes. "Come on, don't jump all over me, don't, don't!"
As well as the startling outbursts, she frequently drops "I love you" into conversation, sandwiched between her sentences.
"It's not easy," she says.
She is childlike in her nervous energy, but although it's possible to concentrate very hard and suppress her tics, she doesn't see why she should - they just bust out again tenfold later on.
Beneath her apparent flightiness is stern resolve. She is the way she is, and if you don't like it, well - you can get used to it. She had to.
It's hard to talk about it, though, and to suppress the twitches to speak about her condition. But she says she's “just going to friggin' do it”; she wants to let people know what her life is like. She has only met one other person with Tourette's.
Renee Harvey is just 21, and her condition is incurable. In all of this, she is alone.
Where it all began
Her mum, Leanne Peeti, says that the tics began when Renee was in primary school, after a doctor prescribed Ritalin for attention deficit hyperactivity disorder. Her brothers Jai and Tane were also medicated throughout their early lives.
But Leanne says her children took the pills in place of a quality home life, one with secure parents and a safe upbringing. An alcoholic, she says her world was an ugly mess of not owning her problems and instead blaming her children for them. The medication kept the children quieter, helped her stay in denial about her own problems, and let her keep drinking.
Her kids were in and out of family homes and were well-known to local foster care groups.
"I'm not about to say it was a good upbringing at all," Leanne admits.
Her daughter was "a normal little girl" until the medication. After the second pill she took, she began involuntarily kicking her brothers, and kicking out a leg when she was sitting watching TV.
Then she started jumping from the floor to the furniture, screaming "I love you!" and yelling at herself to shut up. She would have to stand up and sit down three times before she could move away from the chair she was on. She was nine years old.
Harvey's grandmother, Sandra Rickard, says her granddaughter's condition is "a heartache".
"For a whole year we growled at her and smacked her because she was doing out of the ordinary things – hurting things, hurting herself. But we didn't realise and she didn't know – it was her Tourette's."
"It went from one extreme to the next, to the next, to the next," Leanne says. If there was a cup of coffee sitting on the table next to her, something in the small girl's head told her to push it, and keep pushing it until it fell off the table and smashed.
"I used to say to her: ‘What are you doing?' She'd say ‘What? I'm not doing anything'."
Renee says life was "depressing" and that school was "really hard, actually".
"I got bullied and picked on and stuff," Harvey says. She'd sit in class jerking her limbs spasmodically, and making deep sounds in her throat to try and cover it up.
"I was naughty back then, and being bullied didn't help. I used to be a little b… I was really bad."
Ritalin is associated with the onset or exacerbation of motor and verbal tics and the worsening of Tourette's syndrome, though such adverse reactions are very rare. However, common side effects of the medication include tremors and dyskinesia (involuntary muscle movement).
Leanne took her daughter off Ritalin when she realised that the ADHD may have been more to do with the home environment than biochemistry. But in 2008 it was resumed, as she hoped it would help with the Tourette's.
She only learnt later that Ritalin can affect the tics of Tourette's, and that 90 per cent of children with Tourette's have co-morbidities that include obsessive compulsive disorder, anxiety, and ADHD.
Sandra Rickard wants to buy her granddaughter a computer so she can communicate with others who have the condition, without the stress of leaving the house.
But the family can’t afford it, or pay for the internet connection.
"The best thing to do is bring this out. I hope and pray we can connect with other people who've got it," she says.
Looking to the future
These days, Renee and her mum are a tight pair, more like sisters. They joke one minute, snap the next, growl and praise within a single breath.
"We're just like friends but she's my mum when she needs to be," Renee says. "Sometimes she gets so tired out being around me, because I'm so fast and stuff."
"Sometimes it's so frustrating and tiring that I sit down and think ‘How the hell can I go on?"' Leanne says. "But then, how bad is it for her?"
Her daughter is "very cool for a solo mother with Tourette's", she says, adding, “She's very grounded and Neko knows his boundaries."
But the twitches have worsened as Renee has got older, and Leanne thinks she needs to learn different techniques to cope with it.
But Renee disagrees. She thinks that she'll never be normal, so why try?
"I ain't gonna suppress. I don't want to be doing that to satisfy other people's … problems, you know? I'm not going to change for anyone."
She's looking forward to October, when the first Camp Twitch, especially for Kiwi Tourette’s sufferers, will be held.
"It'll be blimmin' noisy," she jokes. But it'll feel good to be around people with the same condition, and to meet others who may actually be worse off.
"I want to see how they cope with it, how they feel and what their lives have been like, and be able to give advice to people who need it, especially the young children."
Maybe, she says, there'll be some others who aren't trying to hide the twitches and noises that come as naturally to her as breathing, and instead agree with her that although they'll never be normal, that might just be okay.
Besides, after a difficult life, things are going pretty well now for this young mum. She studies three times a week at a teen parent unit, and she’s just started singing lessons; her teacher tells her she has perfect pitch.
And when asked what she hopes for in the future, Renee knows what she wants: "To be a good mum, to be a proud woman ... and to just love me for who I am."
Go to stuff.co.nz to watch a video of Renee Harvey speaking about her life.
What is Tourette Syndrome?
Tourette Syndrome (or Tourette's) is a genetic childhood neurological disorder that causes an individual to have involuntary vocal and physical tics. The mutation of the gene/genes that causes it is not yet fully understood.
Stressful situations can also trigger a wave of tics, as can tiredness, and relaxation.
About three in every 1000 children will have the gene mutation that causes Tourette’s. The male to female ratio of those diagnosed with TS is four to one.
There is no cure, although medication can help to suppress some of the tics, and remission can occur in adulthood.
Contrary to popular belief, only a small percentage of those diagnosed with TS have coprolalia - an extreme vocal tic that causes them to repeat offensive words.
CAMP TWITCH The Tourette's Association of New Zealand is fundraising for Camp Twitch, a gathering for children and adults with Tourette syndrome. See tourettes.org.nz for more information and to donate.
- © Fairfax NZ News