Correcting Tourette’s jokes

I don’t want anyone to think I’m against joking about Tourette’s.  With Tourette’s,  you have to keep a sense of humor, and it CAN be funny. What I do have a problem with is “Tourette’s jokes” that are just mislabeled coprolalia jokes. While some people with Tourette’s have coprolalia, uncontrollable swearing,  the vast majority do not but if the only thing you know about Tourette’s is what you see on TV, movies, internet memes and even the news, you might think that Tourette’s is just about swearing.  Laughing at uncontrollable swearing is funny and I do laugh at it but as soon as it’s called Tourette’s I stop laughing.

I know a lot of people think that this is being overly sensitive. I’ve had people tell me I need to learn to take a joke. Recently, I had one woman tell me that her son is blind - and she makes blind jokes all the time, why can’t I just laugh at myself? I do laugh at myself. When my vocal tics sound like Chewbacca, I say I wish I had a Wookie to English dictionary so I can understand what I’m saying. When my walking is interspersed with popping up on my toes and high knees I think of Monty Python’s “Ministry of Silly Walks” and wish my walk could be more like John Cleese’s and less like Michael Palin’s. I laugh at these things and I welcome my friends to laugh with me. When I’m so focused internally on keeping my body under control that I forget to look out for where I’m walking, it’s funny, my friends will probably never let me live down the number of objects I bumped into on a short walk in down-town Toronto. These things are funny, because like the mother of a blind child making blind jokes, they are true. The jokes I don’t find funny are the stereotypes, especially the swearing one.

Uncontrollably saying socially inappropriate words or phrases is called coprolalia. While coprolalia can be a symptom of Tourettes, it is a rare symptom and it is not exclusive to Tourette’s. Coprolalia can also be a symptom of other conditions like traumatic brain injury, strokes and some medications. Less than ten percent of people with Tourettes ever experience coprolalia but it is Tourette’s best known symptom because it is so frequently used in jokes.

It may not seem like a big deal to most people to relate swearing and Tourette’s since coprolalia is a symptom of Tourette’s but as one of the 90%+ of people with Tourette’s who do not experience that symptom, I can say that the stereotype that Tourette’s is synonymous with swearing has had a noticeable effect on my life. It gets old having to explain over and over that, yes, I have Tourette’s; but, no, I don’t swear. It’s annoying to have people tell me they wish they had Tourette’s so they could swear all the time. It’s inconceivable that I have had the experience of one of my tics causing me injury while out shopping and the kind stranger who stopped to help me turned and laughed at me when I said I have Tourette’s – there I was doubled over in so much pain I couldn’t stand upright and she thought I was “lucky” because despite what she had just witnessed, she thought Tourette’s was just about swearing. If that weren’t enough reason to not find it funny, there is also the fact that most doctors who are not neurologists, know as little about Tourette’s as the average person, meaning, they think that swearing is part of Tourette’s so that when a child presents with tics but not swearing, the pediatrician thinks it can’t be Tourette’s. Many of us go years before receiving a diagnosis. I was twenty one when I was diagnosed. Based on my school history, I could have been diagnosed when I was eight, that’s thirteen years of being unable to explain why I did the things I did, thirteen years of being the “weird kid,” and thirteen years of being punished for things that were beyond my control simply because I didn’t have one of the rarest symptoms of my condition. There are many others who have a similar story.

So I don’t find jokes that make Tourette’s out to be just about swearing funny but I’m not without humor. I know that making jokes about uncontrollable swearing is funny, it’s just the Tourette’s label being attached to the swearing that I object to. With that in mind, I’ve edited a few memes I found on Facebook to use the correct term in the joke. Use them; it’s funny because it’s true. See someone sharing one of them in its original form? Send them the edited version. It’s okay to make jokes, just make sure you use the correct term for what you’re laughing about. I welcome Tourettes jokes, as long as they’re actually about Tourette’s and are laughing with not AT a person with Tourette’s.

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A Lesson in Gift Giving from Mrs. Roe

When I was young I had an elderly neighbor named Mrs. Roe who lived diagonally across from us. I was pretty young when I knew her, I was eight when she died, but she taught me several lessons that have stuck with me. One of those lessons was on gift giving which being in the season for shopping seems a good lesson to remember.

I would draw pictures for her then race up the stairs to her apartment to give them to her. She always happily accepted them and hung them on her refrigerator. There was more of my “artwork” on her refrigerator than at home. Even though she was always happy to accept my drawings I have always felt that I’m not very good at drawing so one day I tore a page out of a coloring book to bring her. She wasn’t very happy about that at all.

She sat me down and explained to me that even though my own drawings weren’t perfect they were made by me and that is what was important to her. That a coloring book is someone else’s work and she didn’t know that person so their picture didn’t hold the same meaning to her that one of mine did. She told me that when you give someone a gift it shouldn’t be that you give them just something; the gift should have meaning between the giver and receiver.

That conversation happened probably 25 years ago and the lesson has stuck with me ever since. Most gifts I give are handmade and when I do buy a gift I look for it to be something that has meaning and the receiver will remember, not just something that they’ll like and falls within a specific price range.

Every year when the Christmas season rolls around and I see a flood of advertising for all the “must have gifts” of the season and news about crowded shopping malls and people fighting to get the best deals I wonder what the point is. Am I the only one who had a Mrs. Roe to teach me that there should be meaning behind giving a gift? I kind of wish more people did.

Watercolor by Mrs. Roe

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Is Tourette’s Cursed?

It’s a few days after Halloween so I’m probably a few days off from when I should be discussing witches but I have to pose this question. At some point in history did some ancient Touretter upset a local witch so badly that she put a curse on all who have this particular syndrome? Some days it sure feels like it. It seems that it’s not enough that we have to live every day with a condition that is embarrassing and often painful, on top of everything our condition throws at us we have to deal with society’s ignorance and use of Tourette’s as a punchline.

I belong to a few support groups on Facebook. They are closed groups because some of the topics we talk about are embarrassing and people are more willing to talk openly if they know what they say isn’t going to be posted to their friends newsfeeds (of course yesterday Facebook had a glitch which did that even on closed groups, thanks a lot Facebook.) We talk about everything in those groups both the good and the bad. Often it seems that there is a lot more bad than good.

Without being too specific because privacy is an issue here are some of the topics that have come up in the last week:

  • Someone’s neighbor called the police because of the sounds coming from their house.
  • A parent was having trouble finding a neurologist who treats Tourette’s in their area.
  • Someone injured their back ticking and was having difficulty getting around the house because of it.
  • A child was having suicidal thoughts but thanks to a family pet found reason to want to live.
  • A child was held inside during recess to finish an assignment despite the child have an IEP that specified that recess could not be taken away, they need that unstructured time to burn off extra energy.
  • A parent didn’t want to medicate their child but the child wanted to try medication.
  • Several parents blamed themselves for not noticing that what their child was doing was Tourette’s and not just a cute “habit.”
  • A school tried to tell a parent that their child didn’t qualify for a 504 or IEP because their grades weren’t failing.
  • A child received an award for being “most improved” in his class.
  • Someone needed an MRI but couldn’t hold still so they had to stop and reschedule for an appointment when they can be sedated first.
  • A teen being mocked and physically assaulted by classmates for being different.
  • Parents voiced concern over their own anxieties.
  • Someone FINALLY got an appointment with a neurologist; earliest appointment available is next year.
  • A teacher decided to try and “redirect” a tic they didn’t like seeing in the classroom, the child is now referring to himself as stupid because he can’t stop. (There are methods that can be used to redirect or substitute tics but these should be practiced by trained therapists only, not a teacher)
  • We celebrated a few birthdays.
  • A family member who doesn’t understand the waxing and waning nature of Tourette’s saw someone during a waning period and insisted that they were “healed by God.”
  • Someone was advised by their doctor to start using a wheelchair because tics were making mobility a problem.
  • Someone was kicked out of a Wal-Mart for “being too loud.”
  • Parents couldn’t agree on the right way to handle their child tics.

In addition to all that we also had a boy reading the book “The Schwa Was Here” by Neal Schusterman in his middle school class. He came across this passage:

It was Howie who suggested the Elephant Man theory. We had all been trying to

figure out what condition Crawley’s granddaughter suffered from that was bad

enough for him to pay me to spend time with her.

“I mean, she’s got to be ugly in some basic, unnatural way to make it worth money,

says Howie.

“Maybe not,” said Ira. “Maybe it’s Tourette’s syndrome.”

“What’s that?” I asked.

“It’s where you have these little seizures and can’t stop curs¬ing people out.”

And then this:

Lexie finally stepped out of the shadows. I didn’t see any¬thing wrong with her at all. Tourette’s syndrome, I thought. Any second she’s gonna start cursing me out.

He went to his teacher and told her that he was offended, she told him to write the author. That was it. There was no class discussion clarifying that that is not what Tourette’s is just “maybe you should write the author.” It took his mother going to the school administration to arrange to have the school counselor come to the class and explain to the class what Tourette’s is and that a member of the class has it but he won’t be cursing anyone out. I’m sorry but this story just royally pissed me off so it needs more than just a bullet point. I’ve read part of the book and it seems like a good middle school level book except for those two passages. I can understand the average teacher using it in a classroom and not even noticing the Tourette’s reference being misinformation  because most people don’t know that that is not what Tourette’s is but this was a class with a student with Tourette’s, the teacher knew there was a student with Tourette’s and had no class discussion planned! In a middle school setting where bullying is common that is just giving a potential bully ammunition. He went to the teacher, she had a chance to discuss with the class what Tourette’s really is and didn’t take it. His mother contacted the teacher and still no class discussion. The fact that it took his mother going to the school administration and complaining to finally have it explained to the class that what the book said was not correct is appalling but the sad thing is, it’s not that shocking to me anymore that this would happen. The belief that Tourette’s is about swearing is so common that people don’t feel the need to correct that misperception when they see it, even teachers.

Then there was TV. People post about hearing Tourette’s used in TV all the time. It used to be that we would get angry and respond to a TV show using Tourette’s as something other than what Tourette’s really is. We would write letters to networks and post on Twitter and Facebook pages of anyone involved in the show but almost never got any response so we’ve pretty much given up. This week there was both good and bad. The good was that the family of a man with Tourette’s who was being tormented in his community went to their local news looking for help to get the bullying to stop and the story was picked up. The downside to that story is that there was a need for it in the first place. There were two “bad” uses in TV this week. On CBS’s Elementary when Holmes is spouting his guesses for why Watson and her friend haven’t spoken for a year and a half Watson quips “he’s got a form of Tourette’s.” Nothing about Holmes behavior in that scene was Tourette’s like, I can think of a few other things to call it (Asperger’s seem more appropriate to me but that would probably get a lot more outrage) but not Tourette’s. The other bad use was on the MSNBC program, The Last Word on Oct. 30th Jonathan Capehart said “But you know Senator McCain, I guess he just had to Tourette’s it out, he had to get it out of his system.” There was nothing in the clip of McCain speaking that even remotely resembled Tourette’s but there does seem to be a trend of labeling politician’s behavior as Tourette’s like. Are people with Tourette’s not insulted enough so we have to throw in association with politicians? Isn’t that a bit of a low blow to a group that’s already down?

My own week? I didn’t really go out much this week but while running errands I found myself being followed by giggles, and had to explain that I have Tourette’s several times. I also had an incident when a woman took offence at a grown woman yelling “Ma” in the middle of Target. After a quick explanation of Tourette’s she did become apologetic. I also had a friend on Facebook share a picture with “Thank you for making me so angry that every time I open my mouth it appears that I have Tourette’s Syndrome” written on it. When I called him out for using Tourette’s like that when he knows better his response was “FYI that pic that i posted was in no way directed towards you. I hope you didn’t take any offense.” Yes I was offended. This is a friend who knew me when my Tourette’s was at its worst, who knows that I am trying to educate people on what Tourette’s really is and he didn’t think I’d find it offensive!?!

Everything I’ve written here happened in one week. Just one week and that wasn’t even everything or from the largest group of people. Is it any wonder why I feel like Tourette’s carries a curse beyond just the curse of having Tourette’s? Tourette’s is an always changing condition of ups and downs but the public perception of Tourette’s never seems to change. I need that to change. It’s not easy watching your friends suffer due to ignorance that seems like it should be so easy to fix. I need to break the curse but I don’t know how. I know that the way that attempts to raise awareness are currently handled isn’t working and my own attempts while they are helping just aren’t reaching enough people to make a dent in the ignorance that is out there. So please, can anyone help me figure out how to break this curse?

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My Flashpoint set visit

Now that I’m finally allowed I’d thought I’d share some of my visit to the Flashpoint studio with my fellow Flashpoint fans. It’s been a long wait and I’m sorry I had to lie to a few people but I was sworn to secrecy.

Back in November when Sharon Mustos asked me to help her out with the Flashpoint Team One Facebook page by becoming an admin she made the offer that if I was ever in Toronto I would be welcomed for a set visit. My first reaction was awe at the trust Sharon had in me to even make such an offer. My second was concern that this would change the relationship I have with other fans, the friendships I have made on the page mean so much to me and I didn’t want to do anything that would strain those friendships. My third was how cool a set visit would be but the fourth reaction hit hard, me making the trip to Toronto was very unlikely.

On the internet no one can see or hear me tic but I tic all the time and my vocal tics tend to be loud, not something you’d want to hear on a TV set. Of course even before getting to the set I would have to travel to Toronto. The only thing truly predictable about Tourette’s is that it will always be unpredictable but for me it’s pretty predictable that if I’m around a lot of people my tics will get worse, sometimes it’s so bad that the tics will actually cause injury. Me traveling alone is a risk so as much as I wanted to visit the set I was planning to pass it up. If it hadn’t been for Mary Catherine Headley planning her own trip to Toronto, which happened to coincide with my birthday, I never would have gone. I had second, third and even forth thoughts about the trip since as well as I’ve gotten to know MC online we’d never met in person. Turns out she was either the absolute best person I could have gone with or the worst, I still haven’t figured out which but that’s a story all by itself.

It turned out that the only day they were at the studio that week was the day we arrived so after an overnight bus trip, meeting MC at the bus station, making our way to the hostel to drop off luggage, a trip to the bank for cash and a trip to Tim Horton’s for caffeine we went back to the hostel where we were lucky enough to get an early check-in and tried for a nap before we were supposed to meet Sharon and Victoria at the studio at 5. The nap didn’t work out, too excited to sleep, instead I checked in on Facebook and Twitter and messaged my lie that I was having intermittent internet issues to John Arnold to cover my absence. I don’t think John is ever going to let me live that lie down, even after I sent him a “moose that poops” keychain and Maple Leafs t-shirt to apologize (the Maple Leafs tee was really because it was so funny watching on Twitter as Enrico convinced him he should be a Leafs fan when John didn’t have a clue about ice hockey). I also taught MC how to text since Mary Drury kept texting her and MC doesn’t text, good thing we got that lesson out of the way early because there was a lot of texting during our trip. When we finally headed out to find the studio I was very glad I was with MC because I was so busy taking in my surroundings I would have gotten lost on my own.

We were a little early getting to the studio so we hung around outside and decided to mess with Mary Drury since she kept texting us; we sent her texts that we were lost using random  locations we remembered from Flashpoint episodes as our area where we thought we were. Little did we realize she was pranking us at the same time.

After enough stalling to not be too early we headed inside to the production office where we met Sharon and Victoria at the door and then Chantelle once we were inside. It was weird to finally meet them after so long of “knowing” Sharon as FPTO and Victoria as Flashpoint Katie. After walking past empty offices with familiar names, Chantelle’s desk, and a room where a meeting was going on with familiar faces visible through the door we arrived in the writer’s room. Sharon excused herself and left us there with Victoria, Chantelle and a wall full of spoilers! I tried not to look at that wall but yeah I got spoiled, can’t wait to see it all play out on screen. Sharon came back and led us back to Bill and Anne Marie’s office where Angelo and Mary Drury were waiting to surprise us. Remember how I said she was pranking us while we were texting? They were hiding further down the street watching us laugh. They were supposed to have got there before us but since we were early they were stuck until we went in. It was a huge surprise, we had made plans to meet Mary later in the week and Angelo had been saying he needed to wait and see what his schedule was like before committing any plans to meet. They’re both jerks for that but it was a great surprise.

The meeting we had passed earlier ended so we got to meet a bunch of producers and writers, to be honest to say my head was spinning from the experience would be putting it mildly so I don’t think I could list everyone we met. Actually I’ll probably miss a lot of the detail of the day there was just so much going on. I remember that Mark Ellis and Anne Marie La Traverse were not there, I embarrassed MC by telling John Calvert about her finding all the oopses in “Shockwave”, and Stephanie Morgenstern quizzed me on my ability to quote every line in the series. The quiz was a little tough, she chose one of the easiest quotes “Making the world safe so that others may eat pie” but I was surrounded by all these people that I look up to as they’re responsible for making my absolute favorite TV show and I was trying not to tic in front of them (I really didn’t want to tic in front of them. I had warned Sharon that I can hold my tics for short periods but if I was having trouble I would have to not be on set while they were filming and I really didn’t want to miss that.)It took a minute but eventually I got my mouth to work. I had brought a box full of my SRU ornaments which I gave to everyone, since Anne Marie wasn’t there one was left on her desk and there was debate whether Mark needed his own or if he and Stephanie could share MC thought he should have his own but share won out. Of all the times I’ve been asked if I sell my ornaments I have to say being asked by Bill Mustos made me laugh, I’m the person who tells fans they can’t sell their own Flashpoint merchandise, and during the long wait for merchandise I had to say it often.

Next we headed downstairs for a stop to look in on where all the props are stored with an explanation from Sharon on what was going to happen with everything once they finished filming, then on to wardrobe where we were told we could look around and take pictures. MC and Mary were taking pictures of a rack full of SRU uniforms but I spotted something much more interesting than shiny new uniforms across the room. A pair of vests that looked like they’d been through an explosion, they looked to be Sam and Spike’s vests from “Shockwave” I guess they could be from something in season 5 but being a fan not quite as obsessed with “Shockwave” as MC but close I’d like to think they were. We both took lots of pictures.

After wardrobe we finally headed to the actual set. Mary and Angelo telling us about their visit last year when it was the hospital from “Slow Burn” built on set. We saw the interior of the command truck which didn’t look even remotely truck like. We walked around the back of set for that day to get to where they were actually filming and that is where this story stops being told chronologically accurate. It was so much awesome all at once that I don’t think I could put everything in order if I tried. A lot of things kind of blur together.

Having checked Twitter earlier I recognized part of the set from one of Ted Stokes’ behind the scenes photos and I got to meet Ted, and I gave him one of my ornaments. We got to watch a few takes, we could really only see a little bit through a door but we could see everything on screen. There was a funny moment between takes when Hugh was swearing about something, looked up and realized I was right in front of him. It was like he had a sudden personality change, his demeanor change to totally nice guy and said “sorry, didn’t see you there.”   Unfortunately during two takes my wonderful, loud vocal tic thought it was time to show its ugly head. I managed to hold back until it was safe to make noise again both times it was just barely and the tic came out weird but still pretty loud. After one of them Sharon gave me a look (concerned look) and that may be why she decided it was time to move us along to visiting the SRU “barn.” There was a lot of talking and things being explained but honestly I can’t remember a lot of it. I had a quick chance to meet Olunike before she had to rush back. We took pictures sitting in the actors chairs, MC beat me to Sergio’s so I got David’s, the pictures all came out dark since we couldn’t use a flash. We wandered around, we all took pictures sitting at Winnie’s desk, we tried to help Mary figure out how to use her camera. Tried being the operative word, she has the same camera as me but I couldn’t get the settings right. Sergio came over to say hello and we all took pictures with him, I bet he’d join our Angelo Fan Club.

Next we headed down to the locker room. I have to say something that has always bugged me is that in “Never Let You Down” they show Jules’ name being removed from her locker room and replaced with a sign that said “women” which bugged me because the other locker room sign said “guys” which worked with “Jules” but not with “Women.” Turns out they had changed the sign to “Men” we just never saw it because the outside of the locker room isn’t seen all that often. I was bad inside the locker room, in a moment of impulsiveness I pushed Angelo into the gun cage and closed the door behind him, and then the bell rang. Not being able to open the door without making noise Angelo was stuck until the bell rang again. If you’re going to lock your friend in a cage it’s probably good that there’s something interesting to look at in there, it’s also probably a good thing that all those guns were fake. We did get some great pictures of Angelo in the cage.

We went back up and had some time with Hugh, Enrico, David and Sergio. We each took pictures with them. I ducked because someone said I could be Jules but I’m taller, Mary wanted a butt shot, MC and Angelo just stood there. Mary didn’t get her butt shot. I got the chance to thank Sergio for tweeting my blog post for Tourette’s Awareness Month, it may not have been a big deal to him but most projects aimed at Tourette’s awareness never reach anyone who isn’t already well aware of what Tourette’s is so knowing that my blog was seen by so many Flashpoint fans really means the world to me.

We went outside where there was a taco truck that day and the smokers in the group all took a smoking break. Way too many smokers in this group although being allergic to the tobacco plant I’d say being around one smoker is too many. After standing around for what seemed like too long, I’m not one to stand still, we walked around all the different trailers before going back inside. We stopped back on the set they were filming at and I got to see Amy Jo but I didn’t get to meet her since she was busy at the time, before heading back to the production office to wrap up our visit. We talked some more, really if I could remember everything I still wouldn’t be able to write it all down, before saying our goodbyes to Victoria and Chantelle and heading outside.  Angelo headed off and Sharon offered to drive the rest of us back so we’d have more time to talk. On the way out she told us the secret of her parking spot at the studio but not the full secret because she left out the “who” part. It was the perfect start to my awesome week in Flashpoint City.

Thank you to everyone at FLASHPOINT who made it such an amazing experience for me

A.N. Mary Catherine would like me to note that the reason I felt she was either the best or worst person I could have traveled with was because she is completely oblivious to my tics. On a crowded street she looks like a deaf person as everyone else turns to look for the source of that loud noise she has no reaction. It was great to have no worries ticking around her but at the same time I wonder; if I had had a bad day and my tics started to hurt me would she have noticed before I really hurt myself?

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The trouble with working small

I have no idea why I like working so small, I just do. It’s just what works best for me except sometimes it doesn’t. As my work gets smaller and smaller my work needs to get more consistent or things just don’t work out. I have one mandrel for coiling each size jump ring I use so all of my rings are consistent. I’m careful when I cut my jump rings that the cuts are all perfect and if a ring ends up being less than perfectly round I throw it away rather than risk having it cause a pattern to not work out.

With all that I do sometimes a pattern just comes out either looser or tighter than expected and until it happens I can’t predict it happening. I can only find one explanation for why this happens, with as small as I’m working the margin of error has become so small that even the slight variance allowed in wire of the same gauge can be enough to cause a piece to fail. I recently found myself with a good chance to illustrate this problem, also the reason I’m writing this particular blog post, while working on making examples of my snake earrings so I can list them on my store.

It’s been two years since I started making chainmaille snakes. I have snake necklaces, bracelets, rings and earrings. Some have seemed looser or tighter to make but all have worked until now. I recently acquired a true red that I don’t normally use but needed for one of my awareness ribbons. It seemed like a good color for a snake so I made a pair of earrings in red and teal. It came out much tighter than the pair I had already made in green and hematite but I thought the first one had come out a bit loose so I thought nothing of it until I tried making a pair in red and yellow, tried being the operative word. The weave felt too tight from the beginning and when I started making the turns in the body rings started to break. I tried to make it work but ended up giving up when I had broken half as many rings as I’d successfully woven into the pattern.

Not much I can do but say I guess I won’t be mixing red and yellow in anything in the future but man it’s frustrating to have something so small capable of stopping me in my tracks. What’s my next project?

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Help me cure the one thing I hate about having Tourette’s

Having Tourette’s has definitely made my life different. It’s hard to be “normal” when I’m always drawing people’s attention for the weird sounds I make or the odd behaviors that I just can’t stop doing. I avoid a lot of situations especially crowded places where people stare and sometimes openly laugh. I deal with aches and injuries when my tics get bad. On bad days it can make it impossible to work with my hands, a big problem for someone who works with tiny pieces of wire. I wait for movies to come out on DVD rather than risk upsetting other movie goers with my often loud vocal tics. When I was in school my outbursts were disruptive to classes, teachers were often frustrated with me and other students weren’t exactly accepting of my weirdness.

As many negatives as Tourette’s has brought to my life I’m not sure I’d ever want to get rid of it. With all the bad it has also brought good. I am a different person with Tourette’s, a better person, than I would have been without it. I know what it’s like to be different and I’m a more accepting person for it.  I grew up knowing I was different but not knowing why. I remember how that felt so now I make myself available to parents of children with Tourette’s to help them understand what their children are going through. I know what it’s like being bullied and having no one stand up for me… I also know what it’s like to have that one person stand up for me so I try to be that person for others. I like the person I am and I’m sure that had I not been through the struggles of life with Tourette’s I would not be the same person.

If there were one thing I would change it would be people’s perception of the disorder. When I tell people that I have Tourette’s most have little to no understanding of what Tourette’s is. Often they think that it’s a swearing disorder like they’ve seen on TV or in movies. The thing is Tourette’s is not a swearing disorder. The involuntary utterance of obscene words or socially inappropriate and derogatory remarks is called coprolalia. While a small percentage of people with Tourette’s do experience coprolalia the vast majority never do and coprolalia is not exclusive to Tourette’s, it may be a symptom of other neurologic disorders too.

It hardly seems right to stereotype an entire disorder by one rare symptom that it shares with other conditions but that’s how it is with Tourette’s. Any time I see Tourette’s mentioned somewhere it’s as the swearing stereotype. I see it everywhere. A quick joke on a TV show. In movies characters with “Tourette’s” (coprolalia) are used purely for comedic effect (Reality check: Real Tourette’s can be way funnier than just random swearing). In interviews celebrities often refer to themselves swearing like they have Tourette’s. It even shows up in news programs. With popular media doing so much to reinforce the myth that Tourette’s is a swearing disorder it seems to be an impossible task trying to educate the average person on what Tourette’s really is. I do my best to educate everyone I can about Tourette’s; my friends in the Tourette’s community all do the same. We educate one by one and in small groups. When the myth is used on TV, it is seen by millions. Hard as we try educating one by one we just can’t fight against a myth that gets so widely spread by popular media.

As a group the Tourette’s community tends to be overly reactive when we see the ‘Tourette’s is swearing’ bit. It may seem funny to someone who doesn’t have Tourette’s but as a person with Tourette’s it only adds to the lack of understanding I experience. I encounter people who think I’m lucky because they think it means I can swear freely. I’ve had a few opportunities to speak with people who had mocked me and found that until they saw my tics start getting out of control they had no idea Tourette’s was a serious condition. I know parents who struggle with schools that focus on the potential that a child might swear in class while missing the point that the ‘bad behaviors’ the child is being punished for IS Tourette’s. So when we see it on TV or a celebrity’s tweet, a joke with Tourette’s as the punch line it’s upsetting and we respond. We write feedback on network websites, we post on Facebook pages, we send tweets to actors and writers. We almost never receive a response and when we do it’s usually just “sorry you were offended” and nothing more. No changes have come from our efforts.

The one time I personally have received a response was from a TV writer who often responds to me. He had re-tweeted someone else’s picture of a t-shirt with “What do we want? A cure for Tourette’s. When do we want it? (expletive).”  To say I was upset at seeing this would be an understatement. Here is someone I respect, a writer on my favorite TV show, who’s written some of my favorite episodes, who I follow on Twitter and most importantly seems to me to have a good understanding of right and wrong. Yet there he was making fun of MY condition. In my anger I responded with the first thing to come to mind which was to call him a jerk. I shouldn’t have done that. I should have stopped and realized that maybe he didn’t know that joke is offensive. He sees the condition portrayed as a swearing thing as often as I do maybe even more since TV is his business. Had I been thinking I should have first asked him if he realized that tweet was offensive. From the tweets I received in response to calling him a jerk he didn’t know how offensive it was because he didn’t know that Tourette’s isn’t about swearing. Had I not reacted emotionally I would have first asked him if he realized that it was offensive to equate Tourette’s with swearing and used it as an opportunity to educate him about what Tourette’s really is. By calling him a jerk I put him on the defensive and less open to understanding why I was upset. I wish I had responded differently, I may have still called him a jerk but I wouldn’t have started off with it. I already knew but this incident really highlighted that being reactive isn’t accomplishing anything. If I want anything to change I need to start being proactive about it.

If I want to make progress in getting people to see that Tourette’s isn’t about swearing I need to be proactive. Instead of waiting for someone to be involved in reinforcing the myth and then trying to tell them why it upsets people with Tourette’s I need to work on educating them before they do it. With social media maybe I have a chance at getting my message seen. I’d like to ask everyone who reads this to pledge not to be part of continuing this myth that Tourette’s is a swearing disorder and then share this post. Share it with your friends and family and then if you follow a celebrity on Twitter or like them on Facebook send it to them too. Share it with actors and writers, anyone in a position to be heard by many. I’m not optimistic enough to hope I can completely change how people see Tourette’s but maybe I can get my message seen by enough people to at least have fewer people confusing coprolalia for Tourette’s.

I’m not saying I want to see referring to Tourette’s as a taboo subject. In fact I’d like to see more mention of Tourette’s, make it more well-known so I don’t always have to explain, I’d just like to see it used as it really is. If random outbursts of swearing is your thing use it but call it what it is, coprolalia.

Ready to learn more about Tourette’s?

Web sites

http://tsa-usa.org/aMedical/whatists_cov.html Tourette Syndrome Association

http://tourette.ca/ The Tourette Syndrome Foundation of Canada

http://www.atrandom.ca/ An excellent Tourette’s documentary, you can choose how long you want to watch, it is different every time it’s viewed just like no two cases of Tourette’s are exactly alike

http://watch.thirteen.org/video/2135738235 “Different is the New Normal” a great hour long documentary

http://www.tourette.it/tourette.it/home.html for anyone who speaks Italian this site was recommended, I don’t speak it myself but I trust the person who sent it to me.

Books

“Against Medical Advice” by James Patterson and Hal Friedman

“Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had” by Brad Cohen with Lisa Wysocky

“Tic Talk: Living with Tourette Syndrome, a 9-year-old boy’s story in his own words” by Dylan Peters

“Twitch and Shout: A Touretter’s Tale” by Lowell Handler

Movies featuring Tourette’s

Phoebe in Wonderland

Front of the Class

The Tic Code, I love the way Gregory Hines’ character deals with the bully in this movie.

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Writing about myself

Today marks three months that I’ve been on Etsy. So yesterday I decided that it was finally time to put something in the “about” section of my profile there. I sat staring at the blank screen for a long time wondering what the heck I should write. I suck at writing about me. I could probably write a book or even several books of self-doubt but something positive? Something about me that’s going to make someone be interested in buying my jewelry? Honestly I often wonder if what I’m making is even worth trying to sell. Yes I know I need to work on my self-esteem.

I thought about writing about my love of movement and my need for obsessive activities but if I really got into explaining that I think I might lose potential customers afraid of catching my crazy. I thought about writing something about my Tourette’s since raising awareness is so important to me but Tourette’s doesn’t define me and while it does effect the type of work I do explaining that connection would take more than a short “about the artist” allows. I thought about just borrowing some of the great things my Facebook friends have left in the comments every time I post photos of my latest piece but how to choose which to use? Maybe post something about sculptural chainmaille, what it is and how I make it would be a good idea but I have wood pieces listed there too and you never know when I might add something else. Do I write something about chainmaille and something about my wood scrollwork and then just add on every time I decide to play with something new? Knowing me I’d never update it.

In the end after spending the better part of a day getting nothing written I just went with the short and simple:

I make things. The smaller and more insanely complex, the better.

It works. What more do I really need to write about myself?

http://www.etsy.com/shop/kateevans68

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