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Tourette Syndrome Awareness Month… Dang, I Missed It!

Posted by Tom Benedict on 17/06/2014

I’m an utter dweeb. I completely missed Tourette Syndrome Awareness Month. It ran from May 16th until June 15th. And now? It’s June 16th. Yeah. Missed it by one… friggin’… day…

So here’s my belated post for TS Awareness Month!

Since I’m so late to the game this year I figure everyone else who’s writing about TS Awareness Month will have covered the basics: motor and vocal tics, the underlying neurochemistry, the genetics, etc. I’ll skip that part. I figure a bunch of other people have covered stereotypes, misconceptions, and all that jazz, so I’ll skip that, too.

Instead I’ll talk about movies! I like movies, and these are two of my favorites. Both touch on TS, though neither one ever mentions it by name. In fact, I doubt any of the people who made these movies even had TS on the brain (so to speak). When Hollywood film makers actually try to portray TS they tend to fail miserably. But when they come at it at an angle… Sometimes they get it right.

Movie #1: Star Wars

If you’ve ever wondered what it’s like to be around someone with vocal tics, watch Star Wars. Any of the movies will do, but Episode IV is the classic. R2D2 tics like mad throughout the entire movie. Yeah, sure, sometimes he’s talking to C3PO, but most of the time he’s just ticcing away. (He’s also an utter smartass, especially to C3PO, but that’s a whole ‘nuther topic.)

The funny thing is when he and C3PO are bumming around the Death Star, R2D2 is ticcing non-stop up and down the halls. “Boop deep wop boink!” And none of the storm troopers bat an eye! It’s like the Empire just went through this massive round of sensitivity training or something and everyone is trying not to make eye contact. Meanwhile R2 and 3PO are busy sabotaging the computer system using R2’s sonic screwdriver. (Oops! Mixed metaphors!)

Those characters in the movie who didn’t get the Empire Sensitivity Training tended to fall into two camps: those who thought R2 was cute (Luke and Leia, mostly) and those who thought R2 was irritating (Han Solo, Uncle Owen, and, oddly enough, 3PO himself). R2 drove 3PO up the wall to the point that they parted ways for a time on Tatooine. But here’s the catch: R2 had to listen to himself 24×7. Welcome to the wonderful world of vocal tics. No matter how much someone with TS might bother you, you always have the option of walking off into the desert alone. The person with TS is relegated to listening to themselves until they’re zapped by Jawas.

Which brings me to…

Movie #2: Frozen

WARNING: Spoiler Alert

People sometimes ask me if I really have TS. My tics can be easy to miss if you’re not looking for them. It’s not because they’re particularly subtle. I just suppress like nuts in public. When I was a kid I couldn’t, and I stood out like a sore thumb. As I got older I learned how to hide them: Turn away so the person next to you doesn’t see your shoulder jerk. Hide your vocal tics in exuberant outbursts. Look down at your book so people don’t see your nose twitching and your eyes rolling off to one side. It’s not perfect, but it serves. Eventually people doubt that you have tics or figure you can stop them at will. Of course the next logical question is: If you can stop them whenever you want, why tic at all?

Why indeed?

The answer, of course, is that I can’t. I don’t really stop them. I hide them. Or minimize them. Or try to keep them quiet. Tics can be suppressed, but only for so long. They never really go away. Eventually things reach the breaking point and the tics come out on their own.

So what does all this have to do with Frozen?


For the first half of the movie she’s trying like crazy to suppress her tics. Society sees them as bad, so she begins to see them as bad. Her family consults experts (aka Trolls) and they tell her they’re bad. She hides from the people of Arendelle, from her family, even from her own sister. It’s not that she’s afraid she’ll be judged. She knows she will be. So when she slips up and the cat is finally out of the bag she runs off to the mountains, lets her tics loose, and…

Wait a second! She gets this friggin’ awesome ice palace up on top of a mountain, complete with her own sound track and wardrobe! When I let my tics loose I just get a sore throat and joint pain!

But I digress…

Eventually society catches up with her, drags her out of her own personal Utopia, and locks her up. I don’t want to give away the whole movie to anyone who hasn’t seen it, so I’ll skip to the end: People do finally accept her for who she is, starting with Elsa herself. I mean honestly, what’s not to like? She can freeze out invading fleets, summon ice monsters at will, and she’s an utter badass at impromptu ice sculpture.

Elsa’s character arc in Frozen is remarkably similar to how many people with TS adjust to their own diagnosis. Unfortunately our society hasn’t quite caught up with the people of Arendelle, who, in the end, welcome Elsa with open arms.

I bet we just need to work on our impromptu ice sculpture.

– Tom

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Uncharted Course

Posted by Tom Benedict on 15/01/2014

In all the years I’ve had Tourette’s Syndrome I’ve never medicated for it. In my case there’s never really been a need. The tics have rarely been so bad that they have interfered with my daily life, and most of the people I live with and work around have accepted that they’re there. It hasn’t always been this way, but I’ve managed to weather through most of the difficult times, too. I’ve come to peace with the idea that I’ll have tics for the rest of my life. It is what it is.

Unfortunately, this changed recently. For the last six months my shoulder-shrugging tic has led to chronic pain in both shoulders. It’s so bad now I can’t lie on my side without serious discomfort. Getting to sleep at night has turned into a real chore. I could take something for the pain, but the larger question is whether this will lead to more permanent damage down the road.

So I talked to my doctor. The upshot is that yes, without treatment, this will likely lead to permanent injury. So we discussed options. My goal is to reduce the frequency or the severity of the tics without getting rid of them altogether. Partly this is because I’m used to having tics and just want to reduce them enough to stave off injury. The other reason is that if this tic goes away, I’d like to go back off medication. And the only way to find out if it’s gone away is not to medicate to the point that it is masked completely.

Last night I read through all of the possible side-effects, took a deep breath, and took my first dose. The one I’m using was originally designed to treat high blood pressure, which I’m borderline on. It’s just serendipitous that it also reduces tics associated with TS. Yay for me. Other effects include lower blood pressure (of course), dizziness, fatigue, etc. Pretty typical for a blood pressure medication, and not too bad for something used for a neurobiological disorder.

So what do I do my first day on meds? I go to work at 14,000 feet of altitude! Exactly where you don’t want any of the following: low blood pressure, dizziness, fatigue, etc. I managed to weasel out of driving any vehicles, but among other things I wound up operating a sheet metal shear, a bending brake, a drill press, climbed ladders (more than one, for a total of about fifteen climbs), climbed stairs, and operated a crane – everything I shouldn’t have been doing. How did it feel? LOUSY!

The one good thing is that the shoulder shrugging tic has abated to the point that I only tic a handful of times a minute. Not bad compared to the once every couple of seconds I was ticcing even a day ago. And the severity of the tics is less as well. It’s almost as if my body can’t muster up the energy to do a full-throttle tic. This could be the fatigue, of course, but I doubt it. In my experience fatigue typically exacerbates tics rather than improving them.

My doctor urged me to give it a month before drawing any conclusions. It takes about that long for the transient effects of introducing a new chemical to your body to settle out. I figure it’ll take about that long for the pain in my shoulders to subside, too, so it’s a good number to work with. I’m giving it a chance.

– Tom

Posted in Tourette Syndrome | 3 Comments »

Some OCD Humor

Posted by Tom Benedict on 09/05/2013

It's not the OCD

I swear, doc, it’s not the OCD. I just don’t want to step on this crack!

The lull in my OCD that I’ve been enjoying for the past few years is coming to an end. I’ve seen the warning signs for weeks. I’m back to not letting my foot cross two different kinds of flooring. Back to having to “even out” – when one foot steps on something, the other one has to as well. Back to having to line stuff up and make sure things are symmetric. It’s baaaaack!

As exhausting and frustrating as the compulsions are, it’s the intrusive thoughts that are, to me, the worst side of OCD. I’ve tried to write about them in the past, but inevitably I erase whatever I write and put it off. “I’ll write about it next time.” The truth is I probably never will. It’s too easy for the reader to misunderstand the implications, and the thoughts themselves make even the best Wes Craven movie look dull. They’re not fun, and until they’ve run their course you can’t get away from them.

Which is why it’s important to take the serious parts of your life, hold them at arm’s length, and laugh at them. Call it whistling in the dark. Call it having a twisted sense of humor. Call it whatever you like. I’d rather laugh than cry.

Besides, that really was one big-ass crack in the ground. I had a camera. I had to play.

– Tom

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Jobs, Vacations, and the Nature of Stress

Posted by Tom Benedict on 09/01/2013

As I think I mentioned earlier, a few weeks ago I took a vacation. It was my first one in a year and a half. My first one since my wife went into the hospital with a brain tumor. WAY overdue. My vacation was two weeks long. On day two, my younger daughter got sick. By the end of the first week there was only one well person in the house. It wasn’t until the last two day of vacation that we were all finally well again. On the face of it, it probably sounds like a disaster. In reality, it was heaven.

Aside from two parties we went to (each safely in the “all’s well” periods of the vacation), we didn’t do anything. We couldn’t. We were all sick! We slept late. We ate comfort food. We hung out together. We played cards. We caught up on rest. We actually relaxed. It was exactly what we all needed. Some of us just had to run high fevers to get it.

Any time my stress levels change significantly, it’s fun to watch my tics to see what they do. In the months leading up to vacation, I had a loud vocal tic that was getting steadily worse. After a couple of days in the eat, sleep, and be sick house, it was gone. So was my neck-wrench tic. So was the slap like a seal tic. Most days I hardly ticced at all. The one time they really came back was when I took a phone call from work. But the next day they were gone again.

All good things come to an end, though, and eventually the kids went back to school and I went back to work. I had one day to get back on my feet, then the pace picked up and things were back to normal. In the five days since I’ve been back we’ve done an instrument change, torn apart the prototype camera to fix two leaks and install replacement parts, and had one catastrophic failure at the summit that has shut us down completely for the foreseeable future. Five days. That’s all it took. The seal-slap is back. The neck-jerk is back. And the drunken pirate “HO!” tic is back as well.

But it’s different. Except for the shutdown, I’ve enjoyed being back at work just as much as I enjoyed being on vacation. The challenges seem fresh now. It feels like we’re making two steps forward for every step back on the cameras, rather than the other way ’round. I’m not just running to stand still. I actually feel like I’m running.

It’s nice.

– Tom

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Tic Dreams

Posted by Tom Benedict on 29/11/2012

I haven’t written much about Tourette’s Syndrome recently because so much else has been going on: the cameras at work, plans for my panoramic KAP rig, and the prospect of branching out into RC AP. But my tics have been getting progressively worse.

In part I think that’s because there’s so much going on. Stress has always exacerbated my tics, and the past year has been highly stressful. Caffeine is another trigger I’ve unfortunately been over-using lately. And tics will wax and wane on their own, regardless of stressors. I’ve been in a lull for years. They were bound to peak some time.

One of my primary tics at the moment clearly evolved from another tic. The strange thing is the original tic is still there. It’s almost as if it bifurcated, or split like an amoeba. It started as a shoulder jerk (what is, in my mind, humorously referred to in the DSM as a “shrugging” motion). Over time the shoulder jerk became more and more pronounced, pulling my entire arm into the mix. Eventually my arm wound up snapping up so hard I’d hit myself in the chest with it. Or with the hand that’s at the end of my arm, rather. This persisted for some time, but it wasn’t done changing.

It’s not all that comfortable to keep smacking yourself in the middle of your chest. The truth is it hurts. So I tried to head it off at the pass by jerking my arm into my leg instead. This worked better for two reasons: First, the constant bruise in my sternum finally started to heal. And second, it’s easier to be nonchalant about occasionally smacking yourself in the leg than it is to look casual about whacking yourself in the chest. Just ask any overly stereotyped Hollywood ape!

“I’d like a latte and a croissant.” >smack< >smack< >smack<

“Um… Do you want a banana with that?”

In time the “hit myself in the leg” tic developed into its own entity. I still jerk my shoulder, though the violence of these moves has tapered off to the point that my arm is no longer so intimately involved. And now I smack my leg without involving my shoulder much at all. Voila. Two tics for the price of one.

It was thanks to the help of my wife that I came up with a less-awkward name for the “hit myself in the leg” tic. The two of us had gone into town to buy groceries. We were standing in the store near the milk, and it hit full-force. >whack< >whack< >whack< >whack< >whack< all in the space of a few seconds. She stared at me, grinned, and started smacking the backs of her hands together. I had to laugh. “Sorry, hon,” I told her, “you married a seal.” We didn’t stop laughing until we got home.

I have another new tic that didn’t evolve like the seal tic. It came out of nowhere, all on its own. For the first time in my life I have a loud vocal tic: I shout, “HO!” I’d say this is a Christmas tic, but it winds up sounding more like a pirate singing, “Yo ho yo ho” at the top of his lungs, but so drunk he forgets the “yo” part. It doesn’t have that jolly ring that Santa Claus is known for. And after yelling “HO!” several dozen times, it starts to sound like a hoarse, drunk pirate.

So far I’ve been able to avoid doing this in public. Most of the time, anyway. Most people with TS can suppress tics to some degree, but they always come back with a vengeance later. That’s how it is with this one, too. I’ll suppress it when I’m around people, but as soon as I get some time to myself it’ll come out full-force. Unfortunately I’m not always aware that I’m not alone, so I’ve had some slip-ups, mostly at work. I’ll walk into an apparently empty room, shut the door, and “HO!” “HO!” “HO!!” Then someone will poke their head around the corner and look at me in alarm. “Merry Christmas?” Weak…

As I said, it’s my first loud vocal tic. Up until now my vocals have been pretty quiet. So this is new territory for me, despite having had tics for over forty years. It’s got me stressed. (Did I mention that stress exacerbates tics? Yeah…) I’ve been assured by my co-workers that they don’t mind my tics. And for the most part they really don’t. I’ve certainly done the seal tic around them enough to know they’re cool with it. But no matter how tolerant you are, having someone suddenly yell “HO!” is bound to get a response, like, “Holy CRAP, Batman! What the @#%! was that?!” I try not to push my luck.

But the weirdest part about all this isn’t the tics themselves. It’s that I’ve started dreaming about them.

Let me back up a little. First, I don’t tic in my dreams. I don’t know if that’s typical of people with TS. It’s just how it is with me. And for the most part I don’t have good dream recall. The ones that stick are the oddball dreams. I remember years ago, when I did software development, I had a dream in source code. It was C. I came into work shaken to the core. One of the other guys asked what was going on and I said, “Um, dude, have you ever… um… like… dreamed in C?” He leaned back and smiled at me. “You mean, like in source code? A dream where you’re the code?” He knew! “YEAH!” I said. He leaned out the door and yelled, “Hey, he’s dreaming in code now!” It turns out everyone there dreamed in source code. Get that deep into writing software, and it’s apparently inevitable.

The tic dream was almost like the source code dream. It was weird! It’s not just that I was ticcing in my dream. The dream revolved around it. Kind of like a dream in which you can fly. No matter what else is going on in the dream, once you start flying you kind of go, “DUDE! I can FLY!” At that point your dream is about flying. Everything else suddenly becomes irrelevant. I don’t remember much about the tic dream except that all of a sudden I yelled “HO!” and started jerking my shoulder. The person I was talking to looked at me in surprise and said, “What’s got into you?” And for the rest of the dream I was ticcing. Seals, drunk sailors, shoulders, and all.

It wasn’t really a nightmare any more than my daily life is a nightmare. I don’t even know if I reacted in the dream. Like I said, my dream recall is pretty crappy. But I remember waking up and thinking, “That was weird,” followed swiftly by, “No, that’s a drag.” I see dreams as a biologically mandated form of escapism. But instead of getting some cool dream where I could fly, I got a dream that was… normal.

This is why I don’t watch reality TV. If I wanted reality TV, I’d watch myself. I’d rather watch some fantasy or science fiction show where one of the characters can fly. ‘Cause that’s cool!

– Tom

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Tourette Syndrome Awareness Month

Posted by Tom Benedict on 17/05/2012

Guess what? May 15 – June 15 is Tourette Syndrome Awareness Month! (Don’t sweat it if you didn’t know this. Until about an hour ago, neither did I. And I have TS! So relax.)

I tend to roll my eyes when someone mentions an awareness month. “Did you know this is Fuzzy Puppy Awareness Month?” “GOSH! NO! ‘Cause puppies need help being noticed. Really.” Just kidding. But honestly, I think the TS awareness month is a good idea. I’ll get to why in a minute. But first I want to touch on why I think a lot of awareness months really don’t work.

The problem with most awareness months is that people use them to brow beat their fellow creatures. “This is Bad People Suck Awareness Month.” “Ok.” “Are you aware bad people suck?” “Umm… Yes?” “I doubt it. You might think you’re aware of this, but I’m going to make you really aware of how bad they suck.” “Uhh… Can I just go back to reading my book?” “See?! You’re ignoring me! You suck! You’re a bad person!” It’s not much fun. So when people hear that Feburary 13 through March 18 is awareness month for thing X, Y, Z, most people just tune it out or point out those dates are longer than a calendar month. At the very best it’ll be for something they don’t relate to. At the very worst someone will make them feel bad for not relating to it. No fun!

So when you have an awareness month, keep it upbeat. Keep it interesting. And truly try to improve awareness rather than just shoving it in people’s faces. That’s how I’d like to see Tourette Syndrome Awareness Month handled.

Now on to why I think it’s a good idea! Most people are aware that TS exists. Hey, I’m a lot less subtle than a cute fuzzy puppy when my tics are going full-throttle. The problem isn’t with the awareness of the condition itself. The problem is that most people aren’t aware of what TS actually is. The stereotypical image of someone with TS walking around swearing and barking is precisely that: a stereotype. Certainly there are people with TS who have coprolalia (uncontrolled swearing) and barking tics. But not everyone does. There’s more to it than that. Here’s what TS is to me:

TS is a neurological disorder. I really was born this way, kinda like I was born with blue eyes. Sorry. I didn’t come with a money-back guarantee or a 90-day warranty (just ask my parents!) As Popeye said, I yam what I yam.

TS is only a part of who I am just like being left-handed is only a part of who I am. But just as being left-handed doesn’t define me as a person, neither does having TS. Knowing I have TS is just scratching the surface.

TS provides me with all manner of quirky behavior. I twitch. I jerk. And sometimes I let go with an explosive sound or two. But the truth is everyone has quirky behavior. Some people have to have their coffee just so. Some collect little glass figurines. Some have to vacuum daily or they feel unclean. Everyone has quirks. Mine just have a label.

TS is distorted by the popular media, and as a result is largely misunderstood by the general public. This is unfortunate, and is the main reason why I think having a TS awareness month is a good idea. The image presented by the media is a stereotype. Move past it.

TS has been a vehicle by which I learned to have a sense of humor about myself, and not take life so seriously. It presented very real obstacles as I was growing up. Sometimes it got so bad I had to choose: should I cry or should I laugh? TS taught me to choose to laugh. And the punchline to the joke? Everyone faces obstacles growing up. We could all stand to take ourselves a little less seriously and laugh a lot more.

And finally, TS has been an avenue to meet so many wonderful people who also have TS or who know someone with TS or who are just curious about it. The TS community is one of the most compassionate bunches of people I’ve ever met.

Don’t believe me? Then you’re in for a treat. This blog entry is my way of spreading awareness of Tourette Syndrome during TS Awareness Month. And this video is how a fellow TSer decided to spread her awareness of Tourette Syndrome. Take a look. Meet her. See for yourself that TS is more than just tics:

So have a great Tourette Syndrome Awareness Month! Bake some cookies. Call a friend you haven’t talked to in a while. And if you see someone ticcing while you’re out and about, give ’em a wave and a smile. It’s a recipe for a better day.

– Tom

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Pre-Digested Information

Posted by Tom Benedict on 29/12/2011

Earlier today I was watching a video on Youtube in which Emma, a person with a tic disorder, set out to answer some common questions about her tics, and about tic disorders in general. She made a really good point in the video that got me to thinking about news and media in general.

In the video, Emma points out that coprolalia (uncontrolled swearing) really only occurs in 10-15% of the people with Tourette’s Syndrome. I knew this statistic before watching the video, but then she went on to point out that the reason people associate TS with uncontrolled swearing is because it is the most glaring, obvious, and easy to make fun of characteristic of TS. So it’s the one that’s covered the most thoroughly by popular media, at the expense of actually covering “typical” TS.

That’s something to think on! Take a condition like Tourette’s Syndrome. The best that our news and reporting services can do is cover a tiny percentage of the population with the condition, and play that up as “being” TS? Wow! Way to go, guys.

Now think about any of the other news stories you’ve heard over the past few months or years: Our kids are failing in school; Schools are failing our kids; Our communities are overrun by sexual offenders; Stop buying beef because it’s contaminated with mad cow disease or e.coli or salmonella; Cities are inherently dangerous; Concealed handguns keep us safer; We need tighter gun control to be safe; A supervolcano / megatsunami / mega asteroid will destroy all life as we know it; We’re doomed.

See a pattern?

Unfortunately I can’t offer any sort of alternative because the only real alternative is to do your own research. And where do you go for that? Video. The printed word. The Internet (oh boy… save us…) Everywhere you turn to find information, someone has already pre-filtered it for us. It’s practically inescapable.

So the only real solution is to be a skeptic. Not a cynic, mind you. A skeptic. Look for the holes in the logic. Ask the questions that beg asking. And be aware when you’re really getting an answer and when you’re being fed a line of BS. Form your own opinions.


– Tom

P.S. Nope, I don’t have coprolalia. When I swear at someone, it’s because I think they need to hear it.

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Tourette Syndrome

Posted by Tom Benedict on 30/11/2011

This is going to sound like it’s coming out of left field, but I can’t come up with a good segue from the stuff I normally write about. So I’ll jump right in:

I have Tourette’s Syndrome. I also have OCD, which is a common comorbid condition with TS. I’ve had motor and vocal tics since I was about four or five years old, but I wasn’t diagnosed until my late twenties. It’s not that the tics weren’t present the whole time. They were. I just didn’t know what they were and didn’t know where to go for help.

Taking over twenty years to get a diagnosis for something as obvious as motor and vocal tics may sound odd, but keep in mind when all this was going on. My first tics showed up around 1973. There was almost no public awareness of TS in the 1970s. Even in medical circles it wasn’t widely known despite almost a hundred years of medical history since Gilles de la Tourette first documented it in 1885. In the 1970s there was no Internet. There was no Youtube. There were no blogs to read or Google searches to be done. Even with all these modern resources, it’s hard to find information about something you can’t name. It was ten times harder back then.

This didn’t stop my parents from trying, however. My mother took me to a couple of doctors, none of whom had any experience with TS. One went so far as to tell her that the best course of action would be to have me committed. She took my hand and walked out of the doctor’s office. That was the last time my parents looked to the medical community for answers about my tics.

Growing up with motor and vocal tics wasn’t easy. It didn’t help that I had no clue where they were coming from. I couldn’t even tell people I had TS because I didn’t know what it was. I got teased. The really sad part, though, is that most of it came from my teachers. There were two in particular who took real pleasure in pointing out my flaws to the entire class on a daily basis. I like to think some of the kids realized just how atrocious it really was, but most of them went right along with it. They were just kids. And our teacher, the role model, was the instigator.

The point to understand about teasing like this is that it isn’t the immediate impact of the words themselves that does the most damage. The real harm is the cumulative effect. This is what makes it so hard to ignore verbal bullying. If ten people tell you you’re worthless and only one says you’re doing ok, it’s hard not to believe the ten more than the one. After years of teachers and classmates seeing only your failures, you begin to doubt there were ever any successes.

Because of all the negative feedback I received over the years and because of some subconscious memory of that doctor telling my mother to have me committed, by the time I was twenty I was terrified of letting anyone see me tic, much less discussing them openly. I figured it was just a matter of time before someone made a phone call and had me taken away. I had no doubt they would do it for the very best of intentions. But I knew that I would never see light of day again. I knew this the way that you know when you turn on the tap, water will come out of the faucet. I never discussed it, so no one ever set me straight.

One of the lowest points in my life was when I developed a really noxious sub-vocal tic where I had to breathe in a particular pattern. Unfortunately the pattern had more exhales than inhales, so when that tic was hitting hard I would inevitably run out of breath. I could be on a bus, in a classroom, or lying in bed, and I would slowly turn purple as I ran out of air. The sensible thing, of course, would have been to take a deep breath. But taking a breath broke the pattern! It meant I had to start over! Even after I was married I would lie awake in bed, slowly running out of air, terrified that my wife would wake up, see what was going on, and for my own good make that phone call. [1]

It feels awful to admit all this. It smacks of paranoia. But that’s exactly what it was! I couldn’t stop the tics. I couldn’t control them. I didn’t even have a name for them. So I assumed the worst. It wasn’t until the late 90’s that I even heard the term Tourette’s Syndrome. It was some time later that I read about it and realized what it meant.

I remember very clearly walking into my doctor’s office and saying, “I think I may have Tourette’s Syndrome.” It was the first time I’d let down my guard and let my tics show. At the end of the interview they wrote 307.23 in my chart – the ICD9 code for TS – and gave me a referral to a specialist. It was the first of many visits to many doctors. The paranoia was over. Now that I knew what to look for, I was hunting answers.

I can understand when I read or see someone who rejects their diagnosis of TS. It’s not hard to put yourself in their shoes. But for me it was an epiphany. To me those simple words, “I think you’re right: you have TS,” meant no one would take me away. No one would ever make that phone call. I wasn’t really crazy. This was just how I was. For the first time since I was four years old, I was truly free.

It would be great to say that my tics don’t bug me any more. I’d be lying, though. They do. I’m not bothered by the fact that I have them. They’re a part of me the same way being left handed is a part of me. But when they’re really going strong they’re exhausting and often painful. Since letting down my guard almost fifteen years ago, I’ve lost the ability to suppress them. These days when I tic, I tic. They’re a lot like the Energizer bunny. It doesn’t matter if I’ve pulled a muscle or have a cramp. They just keep going. And going. And going.

The tics were never the real issue, though. It was other people’s reactions. If I could change one thing, it wouldn’t be to get rid of my tics. It would be to change how other people see them. As it turns out, I’m not the only one with a desire to change the public perception of TS. I recently started looking for videos by people with TS about TS, and found some real gems. Unfortunately there’s also a lot of stereotyping out there as well. For someone who doesn’t know any better, it can be hard to tell them apart. So in an effort to set the record straight, these are some of the Youtube channels that really caught my eye:

  • Lena has TS. She also has a really lighthearted and honest delivery in her videos that make them a joy to watch. She covers the ups and the downs, coping in public, telling people about TS, and much much more.
  • Megan has TS and OCD (the same as me!) She has a number of videos about TS and OCD in which she discusses a lot of the day to day issues with TS and how she deals with them. Thanks, Megan!
  • Emma has a really great attitude about TS. When you go through her stream, keep an eye out for her Tic Project. It hit a little close to home for me.

I only listed three channels, but there are a lot of other good videos out there. I could get all maudlin and say how much I wish I had videos like these when I first started to tic. But the past is the past, the sky is blue, and there’s a fair wind blowing. Have fun watching the videos. Tic a little, laugh a lot, and for crying out loud get out and fly a kite.

– Tom

[1] My wife has assured me this was a really goofy assumption to make. She really is the best!

P.S. Thanks to Lena, Megan, and Emma for giving me permission to link to their channels. Keep making videos!

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