Conversationally Speaking
I thought it might be interesting to talk about the effects Tourette Syndrome can have on something as basic as our ability to participate in a conversation. My wife and I have a 2 year old son now, and a huge percentage of our interactions with him are based around helping him learn to speak. He's right on schedule as far as learning goes. He can parrot just about any word he hears, though he hasn't quite mastered the "v" sound yet. It's really endearing when he says, "I luh you!" Verbal communication is so important from such an early age. Yeah, it's important to be able to write coherently, but have you ever heard someone yell, "Quick! Write 911!" No. No you have not.
Which is why it can be so frustrating that TS can have such a negative impact on our speech. I try never to speak (HA!) for anyone else in my blog, so I'll stick mostly to my own experience. I have a ton of mouth and jaw tics that interfere with my speech regularly, though I'm not sure how often anyone else really notices. There's the obvious, like when someone asks me a question but I'm mid-tic and it takes me a few extra seconds to respond. It's also hard for me to think clearly enough during a tic to formulate a response, which adds to the weird gap in the conversation as I wait to complete the tic and THEN figure out what to say.
Then there are times when I'm mid-conversation and I'm about to say something and I feel a tic coming on. I will reliably, like 95%ish of the time, try to rush the words out of my mouth to beat the tic and it all comes out garbled. This is super frustrating. I can't count the number of times I've tried talking to people and they climb this sort of ladder of frustration that starts with, "What's that?" at the bottom, "Can you say that again?" in the middle, and "I really can't understand a word you're saying," at the top. Those are the times I have to just stop trying to talk, take a real deep breath, and fully concentrate on seizing control of all the muscles in my mouth and jaw and neck and force the words out. Even then, by that time I'm usually super embarrassed and want to just crawl into a little hole. Anyone reading this who knows me in the real world has probably had an experience with me like the one I describe above. Sorry, gang.
The last way my tics directly effect my speech is when I start to tic just right in the middle of saying something and I feel like I'm about to mangle and then swallow my tongue. I might need to jut my jaw out or make it "click" in just a certain way, or my lips might want to make a kissy face and a bird noise, or I might need to complete the dreaded (but now mostly dormant) teeth clacking tic. This also makes me garble my words and I often need to start from scratch with whatever I was trying to say. This, too, is exceptionally frustrating.
So how do I manage this problem? Simple! I don't talk that much! It's easier to talk to people I know intimately, like my wife or my immediate family, and I've never had a problem I can think of when talking to my son. Outside of that, however, I'm really selective about how often I talk and the complexity of what I'm trying to say. I feel like I have to plan, or maybe pre-load is a better term, what I'm going/trying to say. Even then, once I start conversing, I start to feel pulses of anxiety as I wonder when a tic will derail me. I'm also really really self-conscious about my eyebrow raising tic, which I think is by far my most frequent tic. It's constant, and hard to miss if you're close enough to have a conversation with me.
It's occurred to me lately that I'd like to not feel this way about talking to people. I think the best way for me to go about feeling better might be to just tell the people I speak with most often how self-conscious I am and to ask them for their patience. I'm not sure what the etiquette is regarding how people should react when I'm ticcing during a conversation, so I asked Twitter. Thanks to everyone who got back to me! The consensus seems to be that people prefer that our conversational partners just keep on going as if we aren't ticcing or that, shock of shocks, we're ticcing and it's nothing really of note. I really admire this take on conversing while Tourettic, and I'm looking forward to having some conversations with people about conversations.
Which is why it can be so frustrating that TS can have such a negative impact on our speech. I try never to speak (HA!) for anyone else in my blog, so I'll stick mostly to my own experience. I have a ton of mouth and jaw tics that interfere with my speech regularly, though I'm not sure how often anyone else really notices. There's the obvious, like when someone asks me a question but I'm mid-tic and it takes me a few extra seconds to respond. It's also hard for me to think clearly enough during a tic to formulate a response, which adds to the weird gap in the conversation as I wait to complete the tic and THEN figure out what to say.
Then there are times when I'm mid-conversation and I'm about to say something and I feel a tic coming on. I will reliably, like 95%ish of the time, try to rush the words out of my mouth to beat the tic and it all comes out garbled. This is super frustrating. I can't count the number of times I've tried talking to people and they climb this sort of ladder of frustration that starts with, "What's that?" at the bottom, "Can you say that again?" in the middle, and "I really can't understand a word you're saying," at the top. Those are the times I have to just stop trying to talk, take a real deep breath, and fully concentrate on seizing control of all the muscles in my mouth and jaw and neck and force the words out. Even then, by that time I'm usually super embarrassed and want to just crawl into a little hole. Anyone reading this who knows me in the real world has probably had an experience with me like the one I describe above. Sorry, gang.
The last way my tics directly effect my speech is when I start to tic just right in the middle of saying something and I feel like I'm about to mangle and then swallow my tongue. I might need to jut my jaw out or make it "click" in just a certain way, or my lips might want to make a kissy face and a bird noise, or I might need to complete the dreaded (but now mostly dormant) teeth clacking tic. This also makes me garble my words and I often need to start from scratch with whatever I was trying to say. This, too, is exceptionally frustrating.
So how do I manage this problem? Simple! I don't talk that much! It's easier to talk to people I know intimately, like my wife or my immediate family, and I've never had a problem I can think of when talking to my son. Outside of that, however, I'm really selective about how often I talk and the complexity of what I'm trying to say. I feel like I have to plan, or maybe pre-load is a better term, what I'm going/trying to say. Even then, once I start conversing, I start to feel pulses of anxiety as I wonder when a tic will derail me. I'm also really really self-conscious about my eyebrow raising tic, which I think is by far my most frequent tic. It's constant, and hard to miss if you're close enough to have a conversation with me.
It's occurred to me lately that I'd like to not feel this way about talking to people. I think the best way for me to go about feeling better might be to just tell the people I speak with most often how self-conscious I am and to ask them for their patience. I'm not sure what the etiquette is regarding how people should react when I'm ticcing during a conversation, so I asked Twitter. Thanks to everyone who got back to me! The consensus seems to be that people prefer that our conversational partners just keep on going as if we aren't ticcing or that, shock of shocks, we're ticcing and it's nothing really of note. I really admire this take on conversing while Tourettic, and I'm looking forward to having some conversations with people about conversations.
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