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Tourette Syndrome Update
July 28, 2014 1:31 PM   Subscribe

One of the first Ask questions I ever asked was about my Tourette Syndrome. A few different commented or contacted me to say that they'd never seen TS described so accurately before. I recently rewrote and expanded that comment into an article for xojane, and as a result, have been asked to present a keynote speech at the Tourette Syndrome Foundation of Canada's yearly conference in October 2015.

I want to thank the community for providing a safe place for me to start working out my thoughts on my disorder, years ago, and for being so supportive. Also, I want to point out how awesome it is that you own the copyright on your own posts, which is what allowed me to repurpose some of the writing from my Ask post into a separate article.
posted by Juliet Banana to MetaFilter-Related at 1:31 PM (69 comments total) 133 users marked this as a favorite

That is so rad! Congratulations!
posted by rtha at 1:41 PM on July 28 [5 favorites]


Oh my god you're giving a keynote! That's always been one of the items on my magical thinking list of things I want to do (for the record I also want curly hair, to become a VP at work and become a Canadian citizen). This is wonderful news, congratulations.
posted by kate blank at 1:41 PM on July 28 [3 favorites]


Awesome! That's really cool, and it's a great article.
posted by restless_nomad (staff) at 1:41 PM on July 28


Amazing! Love the xo jane article, you'll be great at the keynote!
posted by ellieBOA at 1:49 PM on July 28


I didn't realize that your article got its start here, which makes me love it even more.

The whole description of TS was so eye opening -- like I've understood what it was theoretically for a while now but now I feel it a little bit more. Such great writing.

Also this part:

I think most humans, not just those with TS, could benefit from making mindfulness of their brain’s triggers a daily practice in their lives, and consciously choosing alternate actions when their brain’s natural impulses work against your health and happiness.


is a little wordy to get tattooed on my face but it's SO IMPORTANT and really spoke to me.

Congratulations again!
posted by MCMikeNamara at 1:51 PM on July 28 [24 favorites]


How fabulous!

Congratulations!
posted by jamjam at 1:51 PM on July 28


Congratulations! Hope you'll follow up to let us know how it goes.
posted by scody at 1:53 PM on July 28


Fantastic!!! Congratulations!!
posted by zarq at 2:00 PM on July 28


Great article! Congrats.
posted by drjimmy11 at 2:03 PM on July 28


Excellent news. Well done!
posted by MartinWisse at 2:09 PM on July 28


Very cool. Congratulations.
posted by readery at 2:09 PM on July 28


Great news! Congrats!
posted by bfranklin at 2:18 PM on July 28


That's great! Go get 'em!
posted by ThePinkSuperhero at 2:19 PM on July 28


Really interesting article, and congratulations on the speech! Hope it all goes great.
posted by billiebee at 2:19 PM on July 28


That was really interesting, and you're going to knock 'em dead in the speech.

Good for you, both for living this story and for telling it.
posted by gauche at 2:34 PM on July 28


Fantastic - congratulations!
posted by headnsouth at 2:39 PM on July 28


The article is awesome, getting a keynote is awesome, and I'm pretty sure you're awesome. Well done.
posted by Holy Zarquon's Singing Fish at 2:42 PM on July 28


Wow, that's terrific!
posted by Glinn at 2:42 PM on July 28


<3
posted by shakespeherian at 2:49 PM on July 28


Nicely done! Congrats!
posted by benito.strauss at 3:01 PM on July 28


Congrats! You're an excellent writer, and I remember that question well.

Go get em at the keynote! Amazing!!
posted by sockermom at 3:03 PM on July 28


This is so great. I've got tears in my eyes. Congratulations!
posted by alms at 3:05 PM on July 28


Congratulations!
posted by Dip Flash at 3:11 PM on July 28


Such a crazy informative question. I am bipolar and have ADHD and when I'm manic I'm pretty sure the dopamine is in high supply. Unfortunately not in the prefrontal cortex. I struggle with the same things, but I usually channel it during my drive home. Tons of finger tapping on the car door, blasting music, jumping in my seat, and blowing nicotine vapor clouds. The dopamine rush is often a strung out feeling. In a way it is for many people "the" strung out feeling.
posted by aydeejones at 3:12 PM on July 28


Note: i don't struggle with it year round. This is the highest time. And I've actually turned the verbal diarrhea into a written form over the last 20 years. I'm a menace to chat rooms. Enough about me, that is awesome and I wish you the best.
posted by aydeejones at 3:14 PM on July 28 [2 favorites]


Also the driving comment is obviously from a different place given that you walk. On a real bad day, I have an heirloom piano that I just massacre. The finger tapping and piano will give me acute arthritis sometimes. But nothing beats just beating the hell out of a real piano and I even open the window so my neighbors hear it and get some compliments because I've actually gotten somewhat decent. There's definitely a "look at me!" component to PFC deficiencies but after years you learn to dislike the attention most of the time.
posted by aydeejones at 3:20 PM on July 28


This is so awesome! Congratulations!!!!
posted by Westringia F. at 3:25 PM on July 28


UNFETTERED KUDOS AND CONFETTI
posted by The Whelk at 3:41 PM on July 28


Congratulations!
posted by Navelgazer at 3:44 PM on July 28


Great job, everyone!
posted by FAMOUS MONSTER at 3:44 PM on July 28


That's pretty badass! Great job!
posted by tofu_crouton at 4:04 PM on July 28


Wow, that's awesome!
posted by Eyebrows McGee at 4:25 PM on July 28


Congratulations. It's a great article!
posted by alltomorrowsparties at 4:43 PM on July 28


Awesome! I really liked your description of "that cold, creeping reflex"
posted by oceanjesse at 4:47 PM on July 28


Congrats! I still await my call to speaking engagements on the lackluster attractions of Korean beer.
posted by stavrosthewonderchicken at 4:48 PM on July 28 [1 favorite]


That's really cool. Congrats.
posted by spitbull at 4:49 PM on July 28


And here I thought perhaps Juliet Banana couldn't get any cooler.

Way to go!
posted by Lutoslawski at 5:29 PM on July 28 [4 favorites]


Huge congratulations. That's really badass.
posted by gingerbeer at 5:39 PM on July 28


This thread evidences another great achievement by, and well-deserved accolade awarded to, one of our dear MeFi colleagues; and it is sweet and meet that we have this opportunity to applaud Juliet Banana. However, it's also terrifyingly obvious that it will lead to the inevitable destruction of our society.

Think about it: once Juliet Banana triumphs at this keynote-delivery opportunity, every conference, symposium and think-tank across the country will demand the thoughtful insights of a similarly intelligent and charming MetaFilterian for their own discussionary purposes. MeFi's brains will be well and truly drained as members are summoned to fix all the many and various problems of the world, and no-one will be left on this website to "LOL", "ROFL" or even to "DTMFA".

Sure - we may end up curing cancer, solving the whole I/P thing and finally figuring out what the hell that "one weird trick" actually is. But if a single motherfucker doesn't get dumped already, won't we will ALL feel that our contributions to world peace and global happiness are ultimately meaningless???

In that context, I think we should elect a representative of the site to stay at home and ensure that every motherfucker is processed in accordance with our time-honoured traditions. Vote #1 quidnunc kid and I promise to keep the site ticking over while you all rule the outside world as keynote philosopher kings and queens - safe in the knowledge that, back at MeFi, not a single favorite band will EVER be left wondering whether or not they suck.
posted by the quidnunc kid at 5:42 PM on July 28 [38 favorites]


I wrote a big comment just now about my own experience with tourette's and how years of uninformed medical professionals and a lack of support or medication led me to learn my own cognitive tricks to hide or transfer some of my more noticeable tics, but on reflection my comment didn't add a whole lot to your article - you've pretty much said it.

What I would like to add is another explanation of what it feels like for non "sufferers".

You know that feeling when you step on a crack with, say, your left foot? And for a little while you maybe feel a slight urge to even things up and step on a crack with your right foot? It's almost synaesthetic - somehow a feeling of an absence of having stood on a crack.

That's what tourette's feels like for me, except far more intense. It's in my eyelids, my shoulders, and my face. It's in my feet. It's in my mouth, fingers, neck, calves, throat, and actually pretty much anywhere else in my body that I have the ability to move or touch or think about. And, in fact, it's in anything that I can perceive as an extension of myself. Mouse cursors, shower-heads, the bit where a fishing line hits the water. It's exhausting, and embarrassing, and sometimes painful.*

But it's something you can own and make work for you. I'm impulsive in the most extreme sense of the word and that's a problem a lot of the time, but I also think it's why I'm spontaneous and (I think, I hope) a lot of fun to hang out with and a not terrible goalkeeper.

Congrats!

* If you don't have tourette's and want to try something fun, push your index finger into your desk like you're pressing a remote control with low batteries - not as hard as you can, but enough to cause mild discomfort if you were doing it for longer than a second or two. Then do that a dozen times a minute. All day at work. For a year.

Or tighten your quad muscle until it almost hurts. 1000 times

Or maybe blink your eyes and push your eyeball into the top of your eye-socket. This one's hard to explain but do whatever works for you, as long as you do it constantly for 3 weeks.

What about saying "Mark Ruffalo" as often as possible for a week. See how many ways you can get that satisfying KR/GR sound at the top of your mouth between "Mark" and "Ruffalo" into a sentence. Try it in meetings: "It's been a gr.. kr GRKRKRR GR! great fiscal year," then quietly so nobody else can hear "gr gr Mark Ruffalo gr krkrgrgr GR gr grgrgr krrrrruffalo". Try it on the phone, in supermarkets. It's fun.

Or click your mouse violently. Or kick your toe into the floor. Or clear your throat. Or cough or whistle.

And how's your right shoulder? Are you sure you don't need to touch it to your chin for no reason at all? Are you absolutely sure? Because I do. All day. And I've got a hundred possible excuses lined up just in case someone asks me why.

posted by ddd at 5:59 PM on July 28 [12 favorites]


COol
posted by Potomac Avenue at 6:43 PM on July 28


Freaking rad! Congratulations.
posted by en forme de poire at 6:54 PM on July 28


Congratulations! Excellent article!
posted by GenjiandProust at 6:59 PM on July 28


This is great news. And every one of these descriptions is so spot on. I've been dealing with TS for 45+ years and while I can control it to a small degree, it still rules my life in ways that are so random. I thank all of you for sharing, and congrats to you, Juliet Banana for getting up there.
posted by sundrop at 7:02 PM on July 28 [1 favorite]


That is a great article! Congrats!
posted by whistle pig at 7:45 PM on July 28


That is so wonderful! Congratulations!
posted by mothershock at 8:12 PM on July 28


Congratulations! We can brag that we knew you before you were keynote-famous, basking in your reflected glory.
posted by medusa at 8:31 PM on July 28


This is fantastic, congratulations and good luck with the speech!
posted by arcticseal at 9:38 PM on July 28


Congrats on the keynote and thank you for writing this article. It's really hard for people with debilitating diseases to articulate how it affects them in a way that's relatable, and you've done a great job here.
posted by radioamy at 9:48 PM on July 28


Thanks for writing and sharing this -- it's incredibly informative. Congratulations on getting it published!
posted by Margalo Epps at 10:27 PM on July 28


It's people like you who change things for the better, Juliet. Just here in this short time you've educated a whole bunch of people about something we knew almost nothing about and we all know we've gained some very important knowledge.

Compliments to your writing skills are in order, but also compliments to the person who opened up her deepest sadness and frustration to the world in the hope that her difficult experiences may strengthen and encourage others to have hope and keep forging ahead. I'm very moved by your courage.

I have little experience with Tourette Syndrome, but dopamine and I are well acquainted; I have Parkinson's and take a "truckload" of meds to keep my dopamine levels up enough that I can function. If I go too far with those meds, I'll develop the antsy, twitchy, jerky movements you describe. I've only had that happen a few times and it was just a terrible, terrible feeling. I also have a thing called Periodic Limb Movement Disorder which involves one or the other of my legs tightening up - starting in the thigh - then folding up with the knee bending and the hip also and the ankle, then the leg hyperextends hard and fast with the toes turning up and spreading apart in a big kick. I feel it coming on and can't stop it, which is why I bring it up here - and it just irritates the living bejesus out of me. It gets going sometimes over and over for hours and because this is so irritating, I can at least partly understand what you're experiencing, but yours is more than just a leg. I don't know how you stand it, let alone how strong you must be to take hold of the problem and work on finding a way to replace the tics with something that works better. You're amazing - that's all I can say.

Thank you for sharing your story with us and thank you for the hope you give to others all over the place - not just Tourette people, but all of us. And many sincere congratulations on your keynote speech! You're going to change the world by encouraging others to come forward; together you can teach the doctors.


Isn't it funny (not) that up until twenty or so years ago, dopamine was not a word most of us were even familiar with and now that same word seems to be connected to more disorders every day?
posted by aryma at 11:12 PM on July 28 [1 favorite]


Congratulations, Juliet Banana! You just get cooler every day, and it is awesome that we have you here at MeFi.
posted by daisyk at 1:07 AM on July 29


That's very cool.

If you have time and feel like it, would you share an update on how things went after that ask.me post you linked? Did you find something to replace the hopping? Did any of the mefite suggestions help?
posted by lollusc at 2:00 AM on July 29 [2 favorites]


If you made a comic out of this, I would totally buy it.
posted by oceanjesse at 3:24 AM on July 29 [1 favorite]


And you also inspired me to send a postcard a long way....

You rock from here to Neptune.
posted by ambient2 at 4:33 AM on July 29


If you have time and feel like it, would you share an update on how things went after that ask.me post you linked? Did you find something to replace the hopping? Did any of the mefite suggestions help?

The hopping continued to be pretty bad for a few years. It eventually turned into running laps back and forth across my apartment (on it's own, not through any deliberate influence on my part). The urge to run was so overwhelmingly strong and mindless that I couldn't turn it into anything else.

Eventually, someone moved below me, we hated each other for a few months, and out of respect for the noise I was creating in her apartment I set up a dog gate in my apartment so I physically can't run the length of it. Not a perfect solution, and not quite as inspiring as the article, but hey, that's what life is like sometimes, you know? Imperfect solutions and going with whatever works.

I still burst out of my house to run laps around the block a lot, and I'll politely excuse myself during dinners in restaurants to run back and forth on the street outside a few times, but I don't hop anymore.
posted by Juliet Banana at 7:22 AM on July 29 [4 favorites]


Big congratulations! Wonderful piece and I am sure you will rock the keynote address!
posted by BibiRose at 8:28 AM on July 29


Congrats!
posted by Sophie1 at 9:35 AM on July 29


Wonderful article and wonderful news! Congratulations!

Your article articulated so well how it feels to have compulsions, as I know them as someone with OCD.
posted by xingcat at 10:19 AM on July 29


Oh wow. Thank you for this.

I have two young relatives with Tourette's, and I have read about it and tried to do my best to empathize with and tolerate their behaviors, but nothing has actually made sense to me the way these explanations have. I have some pretty big sensory issues myself, so I get completely overloaded being around those kids and I find myself losing patience with them, and worst of all, just sort of thinking of them as a couple of little jerks, even though I know they aren't.

Understanding the condition isn't going to magically increase my ability to tolerate their behaviors in the moment, but I feel like I'll at least be able to empathize and understand them better, and stop those creeping subconscious perceptions that I hate so much.

Thank you, Juliet Banana and ddd. Trying to understand those kids has been a constant, nagging issue for me for many years now, and this has helped me enormously.

PS I'm not just saying this to suck up to a famous person, either. ONLY PARTLY.
posted by ernielundquist at 10:24 AM on July 29 [1 favorite]


Well done. Huzzah!
posted by homunculus at 10:27 AM on July 29


Wow, so amazing. Thank you for the wonderful education.
posted by TravellingCari at 11:36 AM on July 29


Wow, well done JB.
posted by marienbad at 12:28 PM on July 29


This is fantastic! Way to go!

You've helped so many people already, and now you're going to help even more!
posted by cadge at 2:02 PM on July 29


Very informative and generous of you to share.
posted by Foci for Analysis at 2:19 PM on July 29


Congrats Juliet Banana!!! That is super exciting. *MeFi high-five*
posted by désoeuvrée at 2:43 PM on July 29


Excellent work and good luck with the speech! And the photo in the little pool is stunning!
posted by danabanana at 5:16 PM on July 29


Congratulations, thanks for the informative article, and good luck with your speech!
posted by Quietgal at 6:57 PM on July 29


Congratulations! Your xoJane article was awesome, and I know that you will rock the keynote!
posted by baniak at 6:38 PM on July 30


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