Camp flips the twitch
For Adam Belcher, who has Tourette’s, a holiday camp was a life-changer. reports.
Shaun Bamber
When I was a teenager there was a woman in my small hometown who used to bark like a dog. In passing on the street, standing behind her at the bank, I remember this otherwise very normal-seeming person would periodically emit this short, sharp, high-pitched kind of ‘arfing’ noise.
I didn’t know this woman, not even her name, and I can’t recall anything else about her – just those weird barking noises.
I realise now she may well have had Tourette syndrome.
‘‘Some people think you’re just not right in the head kind of thing,’’ says Adam Belcher, who also has Tourette’s.
‘‘But it’s actually a neurological disorder to have Tourette’s: it’s not actually a mental health issue.’’
Belcher first started to develop signs of Tourette’s around the age of 13, although neither he nor his parents knew what it was at the time.
‘‘By the age of 15 or 16, we started to realise that there was definitely something going on here,’’ he says. ‘‘It turned out to be Tourette’s.’’
Now 30, Belcher is one of 109 people who last year attended what is known as Camp Twitch – a sort of holiday camp for youth living with Tourette syndrome.
The 2016 camp, held over five days in Rotorua, was filmed for the TVNZ documentary Camp Twitch, which will screen this week.
As Belcher says, Tourette syndrome is a neurological disorder which is characterised by involuntary outbursts and physical movements known as tics. It’s a little-known and littleunderstood condition in New Zealand, and before the first Camp Twitch in 2014 there was really nothing in the way of support available for those who have it.
While often associated with uncontrollable swearing – thanks largely to TV and movie depictions – less than 15 per cent of those with Tourette syndrome are actually affected this way.
Belcher’s tics are mostly physical – he stomps, he hits himself, he might run around or kick at the ground – but he also has certain verbal tics as well.
So I was uncertain of just what to expect from a phone interview with Belcher. How long would it take? What might he say? But thanks to a little something called Sativex, our conversation was perhaps one of the most fluid I’ve ever had as a reporter.
Sativex is a medicinal cannabis spray approved by the Ministry of Health for
'That was incredible, to actually meet other people with Tourette's and be around them... I honestly thought that I was the only person in the country who had it.' Adam Belcher
The Demolition Teams
use by those with Tourette’s. Belcher says it has changed his life.
‘‘I don’t think we would be having this fluent, calm conversation we’ve had if I hadn’t taken it,’’ he tells me. ‘‘If I don’t take it, you will know that I haven’t because my speech is not fluent. It’ll be distorted, it’ll have sounds in there, it’ll have cursing – whereas I have not cursed once while I’ve spoken to you.
‘‘It definitely helps big-time with my speech. And that’s a real big thing.’’
Without Sativex, Belcher says, ‘‘things start to go downhill pretty quickly’’. The simplest chores become a trial, from pouring a glass of water to using an ATM.
‘‘[Tourette’s] actually impacts on every aspect of my life – from the moment you get up and get ready for the day to get out the door you’re just constantly trying to stop those tics from popping out.’’ Kennedy, in the aftermath of the assassination of her husband – President John F Kennedy. ‘‘Holmes made a startlingly good double for Jackie Kennedy, and if Matthew Perry wasn’t a dead ringer for Senator Teddy, his tubby, panicky, weak-willed performance certainly magicked up the essence of him,’’ wrote The Daily Express’ Matt Baylis.
Conviction
The condition can also have more serious consequences.
‘‘I have injured myself on many occasions,’’ says Belcher. ‘‘I just got out of hospital last week because three weeks ago I accidentally punched out at the brick wall of my garage and bruised my knuckles, which turned into an infection.
‘‘That’s one example of quite a number of injuries that I’ve had. I’ve had torn ligaments in my ankle, I’ve had bursitis to my right elbow, I’ve had a broken foot. I kind of lose track a little bit,’’ he adds with a chuckle.
Amazingly, Belcher had never met anyone else with Tourette’s until he attended 2014’s Camp Twitch, aged 27. ‘‘That was incredible, to actually meet other people with Tourette’s and be around them,’’ he says. ‘‘It really helped me, because I honestly thought that I was the only person in the country who had it, because it’s just something that you don’t see really, you don’t really hear much about it.
‘‘A lot of us are hidden away. We don’t want to go out, we want to hide – or a lot of us do. Fortunately for me, I kind of have the attitude that I’m just going to do what I want to do, and live my life. But for some people with Tourette’s it’s not that simple.’’
Camp Twitch,
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