Control
Just a note to start: I write and post these blog entries in the space of an hour or so, depending on how hard I have to work to wring the words from my brain. I haven't yet started to write on one day and then edit the next day before posting. I have a spectacular wife, an amazing son, and an acceptable dog who deserve all the attention I can give them. They get most nights of my week. If my posts, like this next one, seem a little stream-of-consciousness, it's because they are.
I think a big part of why so many people have trouble accepting that Tourette's Syndrome is a real thing that affects a person they actually know is because many of us, TS patients and not, have a fraught relationship with control. When I think about how I perceive others, I realize a lot of my feelings and thoughts about a person relate to how they control themselves and how they try to exert control on their surroundings. I'd bet I'm not the only one.
I imagine I'm walking down a crowded city street. It's 5:15 in the evening, and everyone is getting out of work and heading home or out for dinner or to a night class or whatever. I can probably pass or walk with two hundred people walking just a block or two, and I don't notice 195 of them. One guy is stumbling over drunk, wearing a Giants jersey yelling how Eli Manning is the greatest quarterback of all time (he is). Another guy is in line for a cab with ten other well-dressed businesspersons (ever be typing something weird like "businesspersons" and be totally shocked when the red line indicating your word isn't actually a word DOESN'T show up? That's how I just felt writing "businesspersons" thrice). The other ten people are chilling, but this dude is blowing his stack every time a cab passes by their line. He's practically in the street, screaming at any cab that goes by as he shakes his briefcase. There's a guy so wrapped up in his Facebook on his phone that he's slowing everyone near him, making other people go around him like a rock in a river. There's a woman screaming at someone on her phone, causing the same problem. Finally, there's a guy with Tourette's having a tic attack. He's moved himself off to the side under some scaffolding so he's out of people's way, but the movement catches my eye anyway. He has strong arm tics that make him jerk his arms out to the sides. Hard to handle at the best of times. A nightmare on a crowded city sidewalk at 5:15 in the evening.
I didn't notice or register the other 195 people because they were under control, acting as I expect (this version of me doesn't have TS, so my expectations of behavior are a little stiff. ...also this version of me is immensely wealthy). I noticed the other five people because they've violated my expectations of how a person should control him or herself in public. The drunk is a drunk and is probably going to knock someone else over. The guy screaming at cabs is just an impatient jerk, the two on their cell phones just can't be bothered to either get out of everyone's way or to wait to use their phones, and the guy ticcing is making me uncomfortable. Also, this version of me is a judgmental jerk. I don't know that the drunk has been struggling with alcoholism, the guy waiting for a cab is trying to get to his daughter's basketball game, the Facebook guy is upset because he heard the ex he's still in love with got engaged and he's seeing if it's indeed FB official, the woman screaming on her phone is screaming at the boss who just fired her, and the guy with TS cannot stop ticcing. Period.
I'm going to switch from "I" to "We" here. I think a lot of our judgments of others come from how well we think they control themselves, especially relative to ourselves. No matter how hard you or I try to explain to a non-TS patient the urge to tic and the sheer impossibility of meaningfully suppressing them, I think it's just not a thing they can comprehend. I'm not even sure if I could really imagine the other way around. I mean I do, don't get me wrong. I'm headed in the direction of accepting my tics, but I still find myself imagining how it would feel for my brain to leave my body alone. I'm not sure my imaginings are a reasonable facsimile of being neurotypical, but whatevs. We've all heard some variation of "You could control it if you wanted to," as if your tics are some weakness of character. I think that's as much a wish they're making as much as it is a judgment on the TS patient.
The loss of total control of our bodies is something a TS patient deals with every minute of every day, to say nothing of comorbids. We're used to it, even though it sucks. Trying to think about it from the neurotypical side, it must be scary as hell to see! I read a tweet recently that said something to the effect of "Don't judge people with disabilities, because you never know when something will happen to you or a person you love and suddenly you're one of us". I'd bet that most people take for granted that their bodies will only do what they instruct them to do, and to imagine that they could lose that must be frightening. It's easier for them to believe that our tics are a weakness on our part rather than a random booty-ass lottery ticket that could affect anyone in their family. Society is based around the idea that you can count on the person next to you to control himself, and a person who to an extent can't do that is an anomaly and a cause for alarm.
Also, it's worth mentioning that I'm a straight cisgender white Christian American male, so I get a whole heck of a lot more leeway regarding my behavior in public than darn near anyone. I'd be curious to hear from people of different backgrounds regarding their experiences with how people expect them to behave and control themselves in public and how these expectations have intersected with their TS.
I think a big part of why so many people have trouble accepting that Tourette's Syndrome is a real thing that affects a person they actually know is because many of us, TS patients and not, have a fraught relationship with control. When I think about how I perceive others, I realize a lot of my feelings and thoughts about a person relate to how they control themselves and how they try to exert control on their surroundings. I'd bet I'm not the only one.
I imagine I'm walking down a crowded city street. It's 5:15 in the evening, and everyone is getting out of work and heading home or out for dinner or to a night class or whatever. I can probably pass or walk with two hundred people walking just a block or two, and I don't notice 195 of them. One guy is stumbling over drunk, wearing a Giants jersey yelling how Eli Manning is the greatest quarterback of all time (he is). Another guy is in line for a cab with ten other well-dressed businesspersons (ever be typing something weird like "businesspersons" and be totally shocked when the red line indicating your word isn't actually a word DOESN'T show up? That's how I just felt writing "businesspersons" thrice). The other ten people are chilling, but this dude is blowing his stack every time a cab passes by their line. He's practically in the street, screaming at any cab that goes by as he shakes his briefcase. There's a guy so wrapped up in his Facebook on his phone that he's slowing everyone near him, making other people go around him like a rock in a river. There's a woman screaming at someone on her phone, causing the same problem. Finally, there's a guy with Tourette's having a tic attack. He's moved himself off to the side under some scaffolding so he's out of people's way, but the movement catches my eye anyway. He has strong arm tics that make him jerk his arms out to the sides. Hard to handle at the best of times. A nightmare on a crowded city sidewalk at 5:15 in the evening.
I didn't notice or register the other 195 people because they were under control, acting as I expect (this version of me doesn't have TS, so my expectations of behavior are a little stiff. ...also this version of me is immensely wealthy). I noticed the other five people because they've violated my expectations of how a person should control him or herself in public. The drunk is a drunk and is probably going to knock someone else over. The guy screaming at cabs is just an impatient jerk, the two on their cell phones just can't be bothered to either get out of everyone's way or to wait to use their phones, and the guy ticcing is making me uncomfortable. Also, this version of me is a judgmental jerk. I don't know that the drunk has been struggling with alcoholism, the guy waiting for a cab is trying to get to his daughter's basketball game, the Facebook guy is upset because he heard the ex he's still in love with got engaged and he's seeing if it's indeed FB official, the woman screaming on her phone is screaming at the boss who just fired her, and the guy with TS cannot stop ticcing. Period.
I'm going to switch from "I" to "We" here. I think a lot of our judgments of others come from how well we think they control themselves, especially relative to ourselves. No matter how hard you or I try to explain to a non-TS patient the urge to tic and the sheer impossibility of meaningfully suppressing them, I think it's just not a thing they can comprehend. I'm not even sure if I could really imagine the other way around. I mean I do, don't get me wrong. I'm headed in the direction of accepting my tics, but I still find myself imagining how it would feel for my brain to leave my body alone. I'm not sure my imaginings are a reasonable facsimile of being neurotypical, but whatevs. We've all heard some variation of "You could control it if you wanted to," as if your tics are some weakness of character. I think that's as much a wish they're making as much as it is a judgment on the TS patient.
The loss of total control of our bodies is something a TS patient deals with every minute of every day, to say nothing of comorbids. We're used to it, even though it sucks. Trying to think about it from the neurotypical side, it must be scary as hell to see! I read a tweet recently that said something to the effect of "Don't judge people with disabilities, because you never know when something will happen to you or a person you love and suddenly you're one of us". I'd bet that most people take for granted that their bodies will only do what they instruct them to do, and to imagine that they could lose that must be frightening. It's easier for them to believe that our tics are a weakness on our part rather than a random booty-ass lottery ticket that could affect anyone in their family. Society is based around the idea that you can count on the person next to you to control himself, and a person who to an extent can't do that is an anomaly and a cause for alarm.
Also, it's worth mentioning that I'm a straight cisgender white Christian American male, so I get a whole heck of a lot more leeway regarding my behavior in public than darn near anyone. I'd be curious to hear from people of different backgrounds regarding their experiences with how people expect them to behave and control themselves in public and how these expectations have intersected with their TS.
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