Movie Review: The Road Within

In several (ok MOST) of my previous posts I’ve poked fun at Hollywood filmmakers for doing such a shoddy job of portraying Tourette’s Syndrome and, to a lesser degree, Obsessive Compulsive Disorder. To be fair there have been films that got it right, most notably Front of the Class. (Obvious reason: the author of the autobiographical book the movie was based on has TS!) But the vast majority of the films coming out of Hollywood just… miss the point.

But now I have to add another to the list of films that got it right: The Road Within.

I toyed with titling this post, “Why I Should Stop Making Fun Of Hollywood”, but it seemed a little too long. Even so, the sentiment is true. Obviously there are filmmakers who can and do get it right.

The Road Within scored points with me for a couple of reasons: First, Gren Wells, writer and director of the movie, got her facts straight. The portrayals of TS and OCD in the movie really are spot on. I really didn’t find anything I could point to and say, “Stereotype!” much less “Wrong!” Next, the performances by Robert Sheehan and Dev Patel, each playing a character with TS (Vincent) and OCD (Alex), respectively, were also spot on. Each picked up on the frustration that can hit when the events of the world around you are running completely counter to what your brain is telling you it needs. And each did a wonderful job of balancing the human aspects of their characters against the outward signs of what’s going on in their characters’ heads.

But what really won me over with this movie was the humor. It’s full of humor the way humor so often strikes us in real life: raw, painful, and for some inexplicable reason just… funny.

Too often movies with TS or OCD characters go after the slapstick gag: the swearing tic at just the wrong moment (badump bump) or having to gingerly step over cracks in the floor (rimshot!) But in The Road Within one of the funniest moments came about because Vincent, Robert Sheehan’s character, wasn’t swearing. Wasn’t ticcing at all, actually. And not five seconds later, Vincent’s reaction to not ticcing caused one of the more emotional scenes in the movie. For me, anyway, because he echoed a sentiment I’ve often felt frustrated by. I found myself simultaneously laughing and thinking, “Damn…”

And that, right there, is what really sold me on the movie. I’ve never identified with the TS character in Deuce Bigelow. I’ve never really identified with any TS character I’ve seen in a movie, with the exception of Front of the Class. But I found myself identifying with both Vincent and Alex in The Road Within. As I watched the film I kept thinking, “Yeah. That.”

In writing all this I’ve utterly neglected the third character that makes up the main trio in the movie: Marie, played by Zoë Kravitz, who has an unspecified eating disorder. I have no experience with eating disorders, but one bit of dialog in the movie sold me on her character. Vincent and Marie are sitting in a car, talking. Vincent asks the most obvious question: “Why can’t you eat?” Marie replies, “It’s not that easy.” As simple as this sounds, it made enough sense to Vincent that he didn’t press further.

One review I read of this movie seemed to miss that point. It accused Gren Wells of backing down from really tackling issues of mental health, and cited that same exact scene to make the point. But to me it carried the day. How many times have I been asked, “Why can’t you just stop?” I know I’m projecting, but how many times was Vincent asked that in his life? Whether it was Sheehan’s acting or my own projection, when Marie answered his question with that simple sentence it seemed like Vincent reacted the only way he could: realizing it was the same damn thing with the same damn answer. If it really was that simple, he wouldn’t tic and she would eat. But it’s not that easy. It never is.

In the end the movie asks something of its viewers that people I know with TS and OCD would ask of the people around them: Stop thinking of us as a diagnosis. Think of us as people. Sometimes our needs make no sense: a need to know things are clean, a need to make a sound or move a certain way, a need to gain just an ounce of control over a body that so often isn’t under our control at all. But sometimes they’re the same needs as everyone else’s: the need to eat, the need to sleep, the need to feel accepted or even loved by the people around us. The Road Within is more a story about three people than it is a story about three people with mental health issues. I think it’s better that way.


Faking It – Why This Is Silly

If you’ve ever cruised Youtube videos made by people with TS, one of the most common comments is, “They’re faking it.” Here’s why this is a silly thing to say:

First, unless the person making the comment is a specialist who’s well-versed in neurological conditions, how the hell would they even know?! This is the equivalent of someone walking up to you and saying, “That noise your car is making is just a loose tail light. It’s coming from the front of the car because the engine is faking it.” (Please don’t ever let this person work on my car!)

Here are some other reasons why it’s silly to assume people with neurological conditions are faking it:

I’ve seen your house. It’s a mess. You can’t possibly have OCD!

Most of the time this comment comes from people having seen the movie Sleeping With The Enemy. For starters OCD is never mentioned, so it’s a little odd to associate those symptoms with OCD. It’s a closer match to obsessive personality disorder. I don’t have OPD. I have OCD. But as I mentioned in my last post I’m not a neat freak at home. That’s just not how my obsessions and compulsions manifest. Intrusive thoughts? Yes. Not stepping on cracks? Yes. A reasonable expectation of a clean kitchen before I start cooking? Yes, though I think that’s human nature rather than any three-letter acronym tacked on my chart by a doctor. But I’m not a neat freak. Besides, I have kids. There’s no greater power of chaos in the universe than kids. If I was like the character in Sleeping With The Enemy my kids would’ve driven me crazy years ago.

I talked to you the other day. You weren’t ticcing at all. You can’t possibly have TS!

If you talked to me any time in the last six months I’d have to say you need new glasses! But tics wax and wane. Right now mine are peaking, but in the past they’ve been relatively mild. Unless someone was looking for them they might not be obvious at all. For a period of over a year my two main tics were a breathing tic that only I was really aware of and a tic I did with my ears that had no visible outward component. I had others, but those were the biggies. That was the year I was diagnosed.

Another reason someone with TS might not visibly tic is because they might be medicating. To put this another way, saying someone with TS who’s not ticcing while on medication is “faking it” is like telling a hypertensive who’s medicating that their 120/70 blood pressure proves they’re “faking it”. Take either one off their meds and it’s a completely different story.

You’re just doing it for the attention!

People say there’s no such thing as good press or bad press… just press. But there is such a thing as good attention and bad attention. Good attention wins you the respect and admiration of your peers. Bad attention gets you punched repeatedly during recess. Guess which one this falls under? Very very few people go looking for this kind of attention.

But you don’t do that swearing thing!

Ok, first of all anyone who says this about me must have blinders on and ear plugs in. I swear all the time! I even swear when writing this blog. I just don’t have a swearing tic. Swearing is only a requirement for a TS diagnosis if you’re a Hollywood filmmaker. The definition in the DSM only mentions it as one example of a vocal tic, not as a requirement for a diagnosis. To put this another way: Not everyone with TS has a swearing tic. Get over it.

I know you’re swearing on purpose! That’s not a tic!

No kidding. See above.

I’ve seen the Tourette’s Guy. He’s hilarious! You’re not like him.

No, nor are most people with TS. I really don’t know his story, so I can’t say much about him. But if you’re looking for a typical case of TS, that’s not even close to what it would look like.

(I know I said there’s no “typical case” of TS. I’m trying to point out that judging an entire group of people based on one particular stereotype, regardless of its validity, is silly. Work with me here.)

You’re just doing it for the attention!

Already covered this one. See above. (Sheesh! Why is this one so common?!)

You’re just…

Ok, enough. Here’s a thought exercise: Let’s say you’re someone who has multiple motor and vocal tics, and you want to go see a movie. You know full well people will stare at you when you’re in line for the tickets. You know they’ll stare, laugh, or yell at you to shut up once you’re in the theater. You know you’ll be judged and found wanting before you’re ever even given the chance to offer an explanation. And you have to go through that thought process every single time you want to go see a movie. Or go out to dinner. Or go to the beach. Or visit your kid’s school. Or any of the myriad things people do on a daily basis. And for some non-zero number of these that thought process leads to the conclusion: I’ll just stay home. They win.

WHY exactly would people want to “fake it”?

That’s just silly!

Sometimes It Really Is

There’s an old joke: If they really are out to get you, are you still paranoid?

At one point I made the mistake of asking a doctor that question. I thought it was funny. They took me seriously. Suffice it to say that I paid them their hourly rate for almost an hour to hear their very detailed answer. The short version is this: Yes, you’re still paranoid, but if they really are out to get you your days are numbered anyway.

At the time I thought the doctor missed the point. (Humor! Har!) But the more I live with TS and OCD the more I realize they’re right. Just because someone really is out to get you doesn’t mean you aren’t paranoid. Just because I swear at someone doesn’t mean it’s a tic. And even when the guy with OCD feels the need to clean, maybe it’s because the house actually is dirty.

When I got home from work the other day the kitchen was a mess, the dining room had stuff all over the place, and it looked like a pack of rabid wolverines had passed through, leaving dirty dishes and rubbish in their wake. I felt like my skin was trying to crawl off my body so it could hide in my shoes! It was my turn to cook that evening, so I scrubbed out one corner of the kitchen and hid from the germs while I made dinner.

About an hour later my family came in, tossed grocery bags in my tiny clean corner, and breezed right back out, never once acknowledging the mess they’d left for me to find, or the fact that they’d just cluttered up the one clean place in the entire kitchen. I didn’t exactly blow my stack, but I didn’t use my inside voice, either. As I was pointing out the dishes, the wrappers, the rubbish, and everything else, I could see the looks on their faces: It’s the OCD talking.

“Maybe so,” I wanted to scream at them, “but that doesn’t mean the house isn’t a wreck!”

I’m not a neat freak at home. I’d love to be, but I know how that can take over my life. I’ve learned to let stuff slide, at least a little, so I don’t get trapped in cleaning routines. But there are limits – reasonable limits – and those limits had clearly been exceeded.

This is one of the real gotchas with neurological conditions like TS or OCD, or paranoia for that matter: You can become marginalized because the people around you begin to attribute everything you do to your condition. Even worse, you can do it to yourself.

But sometimes the house really is a mess.

And sometimes I really am just swearing.

(Does that mean they really are out to get me?!)


P.S. At this point all my swearing is voluntary. I’ve never had coprolalia as a tic, but as I’ve pointed out in other posts the tics associated with TS change constantly. Could I wind up with a swearing tic in the future? Sure! Could I live my entire life without getting one? Sure! Would I still have TS if I didn’t? You bet.

Teasing, Bullying, And Finding A Place

For some reason I missed this video when its creator, Olivia Matlin, posted it to Vimeo back in 2014. I only ran into it last week:

Living with Tourette Syndrome from Olivia Matlin on Vimeo.

It’s a short series of interviews with a number of kids who have Tourette’s Syndrome. As far as I know it’s unique in that the person doing the interviewing has TS as well. (Way to go, Olivia!) At various points in the interview process the questions are turned around, and the interviewee is interviewing the interviewer. So when she interviews these kids it’s really a two-way interview. Pretty cool stuff!

(Did I get all the parts of speech with the word “interview”? No? DARN!)

This video brings up a subject I haven’t really touched on yet: bullying and teasing. In case you didn’t know, yes it happens. Kids are the perfect detectors of the condition scientists like to call “not like me”. They can spot “not like me” from a mile away. And once spotted, it must be explored. Poked at. Prodded. Brought to light, never to sink beneath the surface again. Want to know how to avoid being bullied or teased? Be exactly like everyone else. Want to know what’s really really hard to do when you’re constantly ticcing? Mmmyeah… You guessed it.

Sadly, this isn’t limited to kids. Most of the teasing I got came from two of my teachers rather than my classmates. I spent all of third and fifth grade under the microscope, with every flaw laid wide open for everyone to enjoy. I could go into all kinds of lurid details about some of the teasing I got as a kid, but I won’t. Suffice it to say that most kids and an uncomfortably large proportion of adults seem to think that it’s their personal duty to point out every difference, every flaw, every “not like me” they can in an effort to improve the people around them.

It’s enough of a drain to have to tic every waking moment. It’s a heckuvalot more of a drag to be under the constant barrage of, “Stop it.” “What’s wrong with you?” “Are you a retard or something?” “Shut up already!” “I HATE YOU!”

Oh dang… I said I wasn’t going to go into the lurid details. Skip that last part. Sorry.

Here’s a little tip: Pointing out a person’s flaws to them does not “fix” them. It just makes them feel miserable. So here’s my plea: DON’T FEEL THE NEED TO FIX EVERYONE! IT’S NOT YOUR JOB! It’s that simple! Want to stop bullying and teasing? Set a good example and don’t do it.

In my first several drafts of this I tried to point out that the teasing and the bullying decreases once you become an adult. While that’s true for me, it’s not true for everyone. This is why you still see discrimination and harassment suits filed by people with TS. For my part I’ve only really been teased once in the last fifteen years, even though my tics have become more severe over time. What’s the secret? I wish I knew. Maybe I’m just lucky. Maybe I just hang out with a cooler bunch of people these days. Maybe I’ve just found a place in which I can be myself without being judged.

Or maybe I just got fed up and told the assholes to go take a hike and stop consuming my oxygen. We may never know.