Originally published at: http://boingboing.net/2017/03/13/awesome-guy-with-nsfw-tourette.html
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Thank you.
I was about to have my usual whinge about the excessive focus on the sweary aspect [1], but Lewis covers that in his “what is Tourette’s?” video.
Remove the coprolalia and replace it with squeaks and screams [2] and you’ve got me on a moderately bad day.
[1] Tourette’s and similar conditions are primarily motion disorders. The sweary stuff only appears in a minority of cases [3].
[2] Most of my vocal tics get suppressed into incomprehensibility, but when one does sneak through it’s usually an expression of self-directed violence. “Shoot me inna face” etc.
[3] It’s highly vulnerable to suggestion [4], though, so the media cliche of sweary Tourettists actually makes it more likely to happen.
[4] Notice how Lewis’ tics shape themselves to context? (e.g. when he talks about inarticulate verbal tics, he starts to huff and squeak). It raises a difficulty for Tourette’s outreach: the more you identify and “perform” as a Tourettist, the more Tourettey you’re likely to get. The surest way to get me ticcing hard is to ask me about my tics.
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Brave person making a difference, truly a wonderful thing.
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Brave kids there in that bottom video. They way they described it made it sound really difficult to live with (but I guess if it’s the only life you know then it is what it is).
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Before:
After:
Pictures taken about two years apart (my stuff is medically induced; I was a little bit twitchy/squeaky as a kid, but that was at most 1% of what I’ve had since the pharmaceutical poisoning).
The change in hair is because I can’t maintain sufficient stillness for it to be safe to have sharp things near my head.
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On the subject of Tourette’s, I thought Richard Herring’s podcast with Jess Thom was pretty good:
Do you mind if I ask you a couple things? Don’t answer if you don’t want to.
I just wonder what the experience of having verbal tics is like. All of us have our voices do things we don’t want them to do on occasion but there are lots of different ways that can happen. If my voice cracks while are singing a too-high note then you feel like you just physically failed to do what you meant to. We also have our bodies do things we don’t want, like muscle spasms. If I say the wrong word in a sentence then I just think I made a dumb mistake. So in both of those cases I integrate the experience of not doing what I want into my identity.
But I’ve also had experiences, though only internal ones (we’ll call it “hearing voices”) where something I think does not feel like it is integrated into my identity, and I’m tempted to assign it it’s own identity.
Not that these are the only two options (and not that everyone with verbal tics would have the same experience), but I wonder how verbal tics interact with identity. Is it like a “muscle spasm” where you feel like you just did something you didn’t want to do by reflex? Does it seem like the verbal tics have their own “identity” - that when you vocalize certain things it wasn’t you who vocalized them?
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There was a guy with Tourette’s that use to deliver parcels to our building, and he seemed to be trying to cover it up by singing, so he would start to curse or growl and then break into “woah-ohhh girrrrrl!”
Or maybe he didn’t have Tourettes’s. Surprisingly large number of videos on youtube of people with Tourette’s singing.
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I truly do feel for people with this condition, not only for the “it’s difficult to be around other people who don’t know” aspect, but because it truly seems to require so much energy in these severe cases.
Like, I don’t know if it’ll come across as callous or rude, and I’ll freely admit to not know a whole lot about it, but it seems like it would extremely tiring to have the near-constant vocal and physical tics, especially the slapping. I’m guessing people with Tourette’s get tired of the tics, but does one actually become physically exhausted beyond just being frustrated?
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I hope something comes out that may help you just as much without causing any problems. Doesn’t sound fun at all. But … on the bright side, long hair suits you.
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Jonathan Lethem’s “Motherless Brooklyn” had a protagonist with Tourette’s. I can’t speak to how accurately it’s written, but it was an empathetic treatment as I recall.
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I knew one girl who had a milder form of tourette’s. She’d squeak, kinda sounded like a duck at times. I’ve never been around someone that had a more pronounced version of it but judging by the video of the kid power washing it does seem very difficult with that severity of tics. Wonder what “a day in the life” would look like.
I’m probably missing the point of the video, but the conclusion I’ve reached is that I think I need a power washer.
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If it weren’t for the spasms, I’d just have assumed the swearing was because he was British. I do know some extremely sweary Britishers. In that first video, it looks absolutely physically (and, I presume, mentally) exhausting, though.
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If you have ever seen the clear-to-the-bone cuts a power washer can deliver… Let’s say a steadier hand is appropriate.
Lest you think I am a Tourettes hater, I worked with a person afflicted with this syndrome for 17 years in a professional setting as peers. We found a symbiosis and did some really great work together.
Then there’s the very well-respected Canadian surgeon with Tourette Syndrome; a MAJOR ‘Touretter’, but an excellent surgeon who shows now sign of his affliction when in the operating room. Read about him (and others) in ‘An Anthropologist On Mars’, by Dr. Oliver Sacks.
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Is that you, Bruce Dern?
I work in forestry restoration, BTW; saws and axes and brushcutters are a regular feature. Fortunately, my tics mostly subside when I have a physical task to focus on.
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I sort of knew my comment would be dissed… :=(
I am really glad you found a trade that suits you…
We all have “tics” that make us unsuited to various things. My list is really quite long…
Lewis himself agrees that he really shouldn’t be playing with power tools. And I don’t blame anyone who wants to stand well back when I start swinging sharp things around.
It’s all good. 
Prior to the forestry thing, I was a research scientist. Can’t concentrate well enough for that anymore, unfortunately.
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