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10 Questions You Always Wanted to Ask

10 Questions You've Always Wanted to Ask a Person with Tourette's Syndrome

"I've never accidentally stabbed anyone, but I have accidentally burnt someone with a cigarette butt."

by Berivan Kilic
29 November 2016, 2:00pm

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Bijan Kaffenberger. Photo by the author

This article originally appeared on VICE Germany

Some people will do whatever they can to attract attention. They'll go on a naked dating show, for example, or stand for an election. But others can find themselves at the centre of attention just by going about their day-to-day, whether they like it or not. One of those people is Bijan Kaffenberger, who has Tourette's syndrome.

Tourette's is a neurological disorder that manifests itself in tics – sudden, involuntary movements and sounds. The first symptoms, like blinking and twitching, generally start when people affected by it are about six or seven years old. Only 10 to 15 percent also have coprolalia, the urge to vocalise swearwords. Medication can help reduce the tics, but there's no absolute cure for Tourette's.

Bijan, 27, was born in Darmstadt and lives in Frankfurt. After studying Economics, he now works as a consultant for the Ministry of Economics in the German federal state of Thuringia. In his free time, he watches every home game of his favourite football team, SV Darmstadt 98, and hosts a YouTube show called Tourettikette, where he answers viewers' questions about style and etiquette.

I went to see him in Frankfurt and asked him some more questions about what it's like to live with Tourette's.

Photo by Benjamin Kahlmeyer, courtesy of Hyperbole TV

VICE: Have you ever called someone a name on purpose and then blamed it on your Tourette's?
Bijan Kaffenberger: No, I haven't. If I honestly tell someone they're an asshole I mean it and I won't hide behind anything. I find it pretty difficult to keep things like that to myself, to be honest. You need to be able to deal with that if you want to spend time with me.

Have you ever exploit your Tourette's in any other way?
There was a rumour going around that I grope women's breasts, but I really don't. I do use my Tourette's sometimes to get out of having to do the dishes, but that's really for the best – I could break everything. I once met a girl who I asked to tie my shoelaces. She actually did it, and I laughed so hard she finally caught on I was just taking the piss. I have no trouble tying my shoelaces.

What is oral sex like with Tourette's?
If I'm relaxed and can let myself go I don't have as many tics. It would be terrible if oral sex wasn't an option for people with Tourette's. Generally, it doesn't get in the way of sex at all.

Should I stay away from you when you're holding a knife?
I love cooking, but I'm not comfortable holding sharp knives. You won't be the only one in danger, though – my tics will most likely move the knife towards myself in ways I can't control. I trust myself and have a good sense of my own body, but I'm still scared I might hurt somebody. I've never accidentally stabbed anyone, but I have accidentally burnt someone with a cigarette butt. There aren't any laws that people with Tourette's can't drive, but I think I'd be a danger to myself and the world around me if I got behind the wheel. I couldn't do that to my grandmother. She's a really nice lady who always worries about me – she thought it was already too dangerous for me to ride a bicycle [laughs].

What was your worst experience caused by Tourette's like?
When I was about 10 I went to an observatory with the Boy Scouts. We were all so excited about it. It was completely dark, but there were projections and we could watch the stars while someone from the observatory was giving a presentation. I was so excited I kept shouting things out. Nothing complex or offensive, just loud coughs and noises. The worst thing was that I wasn't able to explain what was going on, why I was doing that. When you're a kid, you're pretty much helpless – which is probably why I remember that time in the observatory so vividly. In general, I have more tics when I'm stressed or around a lot of people. Being in a situation where I know I have to be quiet makes it a little harder.

Bijan in one of his Tourettikette videos

Does it suck to not have complete control over your own body?
I wouldn't say I have less control over my body than other people, even if it seems like it. I don't know what it's like not to have it, so I can't tell you if it sucks. I'm used to it.

Does it upset you if strangers laugh about your tics?
Some people don't understand it and stare or laugh. It's not great, but it doesn't affect me that much. But when someone makes an ignorant comment or is obviously making fun of me, I confront that person. I can't deal with people talking shit. If I have to explain twice to someone, "I didn't mean that, I have Tourette's," and they still ask stupid questions or insinuate I'm doing it on purpose, I feel I'm completely right to tell them off.

Does it offend you when people joke about Tourette's in general?
The film Lommbock will be released next year. It's the sequel to the 2001 German comedy Lammbock, about two stoner pizza delivery guys. There's a guy with Tourette's living in a trailer outside the pizzeria, and he's hilarious. I can laugh at that, I can laugh at myself. I won't laugh at lazy or shallow jokes – no matter whether they are about Tourette's or not.

Do illegal drugs help you with Tourette's?
I was prescribed pills against Tourette's and ADHD, but I quit them when I was 14. It's difficult to drink alcohol when you're taking them, for example. They make you tired and drowsy. I smoked weed when I was younger, but I can't tell you whether it [was good because it] was a form of self-therapy or just because I liked it. It's good for me – it relaxes me – but I grew out of it.

Thanks, Bijan.

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