Lars Doucet on Tourette's, Narcolepsy and Being Exorcised

Uri Bram: Welcome! I’m delighted to be here today with Lars Doucet, a writer and thinker and technologist and generally excellent person.

Lars Doucet: “Generally excellent person” Allegedly. :)

Uri Bram: I have proof and several witnesses to boot.

So, Lars, I feel weird saying it but… we’re here to talk about your brain.

Lars Doucet: Yeah so I have Tourette’s syndrome and Narcolepsy. Specifically Tourette’s syndrome with ‘all the fixins’ -- all of the sub-symptoms like echolalia, palilalia, facial tics, motor tics, verbal tics, and even sometimes the “famous” symptoms like coprolalia and copropraxia, though those are much more rare, generally. (I’ll explain what those mean).

• Echolalia -- compulsive repeating of things others have said just now.
• Palilalia -- compulsive repeating of things you yourself have said, or syllables of the same word, etc.
• Facial tics -- little twitches and involuntary movements all over the face
• Motor tics -- involuntary movements all over the body. Hand fidgeting, leg movements; typically mostly small and rapid, but occasionally can be big and exaggerated, though the latter is rare
• Verbal tics -- any involuntary utterance. Majority of these are grunts and clicks and squeaks, but they can be words, sentences, or sometimes even entire paragraphs, though the latter is rare.
• Coprolalia/Copropraxia are described below.

I have all of the above symptoms, and have had the extreme manifestations of all of them, though my average day to day symptoms are quite minor. Overall I would say I am “on the extreme end of a moderate case” -- people with genuinely extreme cases of Tourette’s have a hard time even functioning in everyday life because their tics are so prevalent, violent, and overpowering.

I also have Narcolepsy, specifically Narcolepsy with Cataplexy -- so I don’t actually fall asleep randomly during the day; my main symptom is that I’m prone to losing control of most of the muscles in my body (Cataplexy) in response to relatively minor stressors and elevated emotional states.

Most people have heard of what I call “TV Tourette’s” and “TV Narcolepsy”, which are actually not-inaccurate depictions of the conditions, they’re just a narrow presentation that focuses on the “juiciest” symptoms.

“TV Narcolepsy” is falling asleep randomly. The real symptom is “excessive day-time sleepiness”, sometimes informally referred to as a “sleep attack” which is basically what you see on TV. I don’t actually have that (falling dead asleep randomly throughout the day), though I am excessively sleepy during the daytime, I suppose. My main issue with Narcolepsy is the cataplexy, and it gets exacerbated by my tourette’s symptoms. The main thing with cataplexy is it can be triggered by noise, stress, anger, excitement, happiness -- so you really have to manage your emotions harder than other people, which isn’t always possible.

“TV Tourette’s” is compulsive cursing, which is a real thing -- coprolalia, literally greek for “poop-speak”. I have that, though it’s not super common. The thing about it is that it’s not really “compulsive cursing” it’s more like, being compelled to involuntarily say anything you shouldn’t say right now in the current context, which shifts a lot depending on where you are and what you’re doing and who you’re with. Obviously cursing is a subset of that, but it’s not like coprolalia magically makes you say the F-word specifically, it can also make you say, “whatever I’m thinking right now in the least charitable and most offensive way,” which is something I kind of live in fear of; it happens about once every 3-5 years and as luck would have it that cycle hit me just a few days ago.

But this is not the most common manifestation of Tourette’s. Most Tourette’s symptoms are pretty minor -- things like motor tics, facial tics, making grunting sounds, things like that. Complex vocal tics and coprolalia are pretty rare. Another nightmare symptom beyond Coprolalia is Copropraxia -- the “praxia” here meaning “touch,” and so this is being compelled to make rude gestures or touch people inappropriately against your will. For me the way this manifested was punching my friends in the nuts back in College (seriously). I learned to keep myself at a safe distance as much as possible whenever I felt I might have symptoms, because that’s a horrible thing to do to someone even if I can’t always help it. Again, I want to emphasize that stuff is pretty rare, it happened like three times in my whole life, but you have to build your entire life around making sure it doesn’t happen. There’s other even more horrible ways copropraxia can manifest -- there’s this TV show called “Nurse Jackie” where one of the doctors has Tourette’s with Copropraxia and he uncontrollably grabs women’s boobs. That’s actually a real thing that happens, they’re not making it up! (Thankfully, it’s never happened to me). The problem with that show’s presentation is not that this is a made up symptom -- it is a totally real thing that happens to some people -- but that they’ve set it up so there’s a DOCTOR with that symptom who has made no effort whatsoever to a) disclose to his co-workers that he has this condition and b) build safeguards into his life to protect the people around him. Like seriously, I find it hard to believe that a self respecting medical professional who knows they had that condition would just surprise their coworkers by grabbing their boobs and then only afterwards awkwardly mumble they have tourette’s…. And then it happens again and again like a punchline. I don’t mind TV depictions of Tourette’s, in fact I welcome them; the fault here is that the writers don’t seem to have functional brains capable of working out the consequences of how this would go in real life.

Uri Bram: Wow, yes. Can you talk a little more about the energy it takes to manage your emotions, and to arrange your life around these very occasional but really impactful manifestations? I’m not even sure how to ask this question but there’s something philosophically about… the ongoing effort and energy to manage something that to others seems really occasional.

Lars Doucet: Yeah so the general philosophy you’re gesturing at is “spoon theory” which is a way people with various conditions (I think it came out of the chronic fatigue community) used to describe dealing with intangible -- but finite -- mental resources throughout the day. You can use that model to describe my life but it’s honestly not a perfect fit. Living with Tourette’s and Narcolepsy is more about cutting out anything that’s going to cause a problem. Like, people who knew me in high school and college see me now and say “Wow Lars your symptoms are all gone!” Well, I’m not presenting symptoms right now, but I’m just as afflicted by my underlying conditions as I ever was. The difference is I control my life and my environment now and I keep myself on a short leash. You can’t really fight the symptoms directly, suppress them, “hold it in”, etc. By then it’s too late. I liken it to a boat on the ocean -- when the storm is raging you will be working super hard to bail (“suppressing symptoms”) but you will be having symptoms like crazy (ie, the amount of water in the boat). But if you make very sure to watch the weather radar and steer absolutely clear of anything but still waters you will be barely putting in any active energy at all to manage your symptoms (ie, not bailing any water), and your boat will be empty and dry nonetheless (ie, not having any symptoms, or at least not a large amount).To be clear, I have plenty of personal motivation to avoid the symptoms if I can too, because they’re just really unpleasant. So even if nobody’s around I would prefer to not have symptoms.

And again I don’t mind depictions of the condition on TV, some people get really upset about that, but again most of the depictions aren’t inaccurate even if they are a bit selective. The famous South Park episode for instance is actually pretty good. And I don’t mind it being used as a joke now and then either, the only one I really find irresponsible is the depiction in Nurse Jackie, and frankly mostly just because it insults my intelligence as a viewer. I find it ridiculous that a medical doctor of all people would behave that way. Most people I know with Tourette’s put Canadians to shame with how much they punctuate every sentence with reflexive apologies.

Uri Bram: That’s amazing. Reminds me of that Seinfeld line: “And this offends you as a Jewish person?” “No, it offends me as a comedian!”

I guess another question I have, though I have no idea if you’d want to answer it, is… how do you feel about luck, the universe, the random cards we are dealt in life and then have to play?

Lars Doucet: You’ll have to be a bit more specific :) I definitely feel like my ability to cope has a lot to do with me having a good support network growing up and being able to avoid overly punishing treatment when I had a lot of high profile meltdowns and failures from my symptoms as a kid. Like, I’ve had some bad experiences (forcible exorcism, being detained by police) but they’ve been thankfully rare, and most people in life have been nothing but supportive. Not every kid with my weird brain diseases gets that.

Uri Bram: Ahahah I don’t remember where you wrote about it but that line about “avoid nice ladies who give you exorcisms” was so so good.

There was also the time a nice Russian lady put Russian epilepsy pills in my mouth because she thought I was having a seizure, but thankfully nothing bad happened from that.

Uri Bram: So the question I really have is, like…. I spend a lot of my time feeling sorry for myself about the various injustices that the world has done to me, and I think that (while it’s uncomfortably shaky ground to compare injustices) I haven’t dealt with anything like the stuff you’re describing. And what I kinda wanna know is how pissed off you are at God/chance/the universe/etc. But I truly don’t know if this is answerable! It seems hard for you to answer beyond saying vague philosophical things.

Lars Doucet: Vague philosophical things are my jam, yo! So I’m a pretty devout religious person (the exorcism bit was from this one particular old lady who cornered me and I’m pretty sure she’d be considered a heretic even by her own denomination’s standards -- she was kind of out to lunch and believed she had the power to command tornadoes and hurricanes and stuff). It’s actually a pretty funny story because I think the whole episode was more awkward for her than it was for me -- I was attending a vaguely pentecostal church at the time and she wanted to “talk to me about something” and before I know it I’m sitting in this small room with her and her husband (both very elderly) and she’s “rebuking the spirit of this” and “rebuking the spirit of that” and … well, one of my cataplexy triggers is awkwardness. So I just immediately go limp. And she’d just gone on this big speech about how she had the power to command spirits and the forces of nature with no delay. Like, she’d command it, and it would be done. And then I just go limp because this whole operation is just so bizarre. And she’s there chanting and saying all this stuff and getting increasingly frustrated that nothing is happening, and I certainly can’t do anything about it --- I’m fully awake and can hear her and everything, just with no high level muscle control. That’s how Cataplexy works, I just have to wait it out. And the person I felt most sorry for was her little elderly husband who you know is thinking something like “I”ve been married to this woman for 50 years and I just have to stick it out another 10 until the finish line comes.” And he’s mumbling to himself something like, “Well dear I wonder if… you know, perhaps… I was thinking…” and just kind of trailing off. Eventually the Cataplexy wears off and I shake her hand and say “Thank you very much Ms. So-and-so” and just bolt out of there. I later left that church for unrelated reasons (everybody else was always super nice and non-delusional), and long story short I’m an Eastern Orthodox Christian now, but I always get a kick out of telling that story. It seems to violate everybody’s expectations of how it’s going to go.

Anyways, I’m very grateful for how my life turned out. I’m not one of those people who’s like “well actually this bad thing that happened is a good thing because of” -- no, weird brain diseases are super bad and things would be better if I didn’t have them. Sometimes people try to be encouraging and say things like “I think your condition is beautiful.” C’mon, don’t patronize me. You think cancer is beautiful too? Tourette’s sucks, Narcolepsy sucks, if I had a pill that cured it I’d take it in a minute, end of story. But, I can certainly appreciate that it’s sharpened me and caused good things to happen to me despite the bad. For one, it got me over my fear of public speaking. Turns out that when you massively embarrass yourself constantly in front of everybody all the time you don’t really have much to lose anymore by getting up in front of a microphone! It’s also made me kind of have a defacto radical honesty kind of mindset, not so much out of principle but because it makes me such a terrible liar. I’ve stumbled into an incredibly brazen but disarming personality half-way against my will and at least in my current cultural context it works out well for me. I just stumble into conversations like a bowling ball and slap all my cards on the table and tell people exactly what I’m about and then we just proceed from there. Honestly, the best thing that came out of that is meeting my wife. I told her exactly how I felt about her shortly after meeting her but without any expectations of setting up a relationship and then like a year later when she decided she actually liked me we got engaged and were married shortly thereafter. Twelve years and three kids later and we’re still happily married.

Uri Bram: Ahh congrats I’m super glad to hear that. Also from my side I wanna agree that you’re incredibly disarming and just generally seem ridiculously cool.

Lars Doucet: The important part for me to remember is it’s not something I get to take much credit for. It just kind of happened to me and I just have to roll with the best I can make of it. I am glad that I live in Texas where this kind of bold personality style isn’t something people tend to bristle at.

Uri Bram: Yeah I mean I’m non-religious but used to be religious, and while I didn’t accord with the Everything Happens For A Reason school (and bristle like you at the Your Suffering Is Beautiful school), I did have a feeling that my life meant something and that while I couldn’t take credit for anything there was credit to be taken. And recently I don’t have that, the world just has a meaning-shaped hole in it.

Lars Doucet: You know as a religious person one thing I think is important for religious people to remember is that, according to our own tradition (well, some of our traditions at least), it’s not like bad things need to happen so that good may come -- the general problem of evil aside. Like this is not the best of all possible worlds and all that. The way I like to think of it is this world has a whole bunch of messed up nonsense, and I participate in that nonsense and actively make the world worse in so many ways, and despite all that seeming inevitability that all things that are terrible forever have the upper hand and all is lost -- good is able to come out of it anyways, and I can participate in that good, and strive towards it, and the ultimate source of all that good is the God that I worship. What I reject is “let’s be happy that you got Cancer because in some sense it’s all part of God’s plan”. C’mon man, disease, death, these are the enemy. They are bad things. Let’s call them bad and not have such a narrow view of this omnipotent being that we worship that if we’re not forcing ourselves to put on big fake cheerful smiles every day he’s somehow going to lose the next election or whatever.

Uri Bram: Amazing, what a way to say it.

Well, it’s as on-topic as it’ll ever be: you alluded earlier to having an embarrassing coprolalia-related meltdown a few days ago, something that only happens every 3-5 years. What happened?

Lars Doucet: All right so let’s start with the meltdown. This is a thing that happens every couple of years. People think that the worst thing that could happen with coprolalia is saying something rude at a funeral, or in church, or at a wedding, or some-such. That’s actually less worse than you might imagine, because presumably people in those settings know who you are. Where you’re in trouble is when you’re in a situation with people who don’t know you, and even then if you blast out something like “holy frozen fartsicles, batman!” you can probably follow that up with an explanation that you have Tourette’s syndrome. What you can’t easily walk back is when, say, you’re on an industry Q&A panel for your job and you scream at one of the other panelists and call him a liar to his face in front of all your colleagues and friends. Someone you already weren’t necessarily on super buddy-buddy terms with and that you’d previously been critical of. And then that sets off an argument, and then that triggers a cataplectic attack, and it’s on a Zoom call, and nobody knows what’s happening and the conversation continues awkwardly without you because people don’t know if you just huffed off stage like an angry baby or whatever, when actually you can’t move most of the muscles in your body, and when you get back on to explain what happened and apologize the other guy is (rightfully) raging mad at you, and the worst part is -- apart from the personal attacks you really regret -- you actually do believe most of the things that came tumbling out of your mouth.

The context for this is that I am a professional game developer, and recently I’ve become a consultant, and I have developed a reputation for being highly critical of certain kinds of blockchain-backed games based on the sale of non-fungible-tokens, particularly those based on land economies. My -- much more professionally stated opinion thanks to the magic of text and the blessed delete button -- is that these kinds of games are generally unsustainable, and that recreating the economic structure of the real world real estate market in a digital game is the absolute worst way to create a stable platform that invites users in to build creative experiences for others. And I have a lot of very persuasive analysis backed by data, facts, lessons from the real world, and the 30-year history of MMO games -- where every game I’ve studied that has had truly land-like assets has also had a full blown housing crisis.

But, none of that warrants acting unprofessionally, even if I can’t help it, and especially when others don’t know that they’re on the receiving end of a neurological meltdown, as opposed to “the real me.” The challenge for me is to avoid getting myself in situations in the first place. It’s always a bit of a mess -- the traditional twitter-activist disability narrative that I sometimes bristle at is that everybody out there is just horribly ableist, and they need to accommodate us, and everything is their fault. I think that’s too simplistic. Honestly, most of this energy seems to come from folks who don’t even claim to be disabled -- and I don’t want to speak for all disabled people here either, let alone other Tourette’s patients!

Here, in my particular case, let me explain the nuance of the situation -- I have a condition that causes me to occasionally do horrible things to other people. I can’t always control this. But other people have a God-given inalienable right to not have horrible things happen to them. And society accommodating me and me accommodating the individual rights of other people are two goals that are in tension and can never be perfectly satisfied, but that tension has to be respected. Some people are nervous about acknowledging these tradeoffs because it’s an opportunity for whatever anti-disability coalition might exist to ratchet back the “accommodating the disabled person” aspect of things, but at least -- for me personally -- I’ve almost never encountered that. Is it because I’m white, privileged, etc? Probably yes. That one time I was detained by police because my symptoms made me look super sketchy probably went a lot better for me overall than it would have if I was also Black, or if I had dressed in a way that marked me as visibly poor, or if I spoke with a lower class accent. But because it’s never cost me much to err on this side of the equation, I choose to do so because I know that not respecting the tension is probably going to be damaging for other Tourette’s and Narcolepsy patients because “surely you’re just making this up” is always looming in the back of somebody’s head, so it’s always very important for me to absolutely minimize how much I ever “benefit” from the condition in any way -- ie “getting away” with seemingly outrageous behavior.

Anyways my point is, I can’t always avoid these things, but it’s important to try, and to minimize the damage my symptoms can cause, and also somehow avoid creating a super big mental guilt complex about it either. One thing I always am surprised by when I write about my conditions is that I forget how scary they sound to other people! And they say things like “I’m so sorry you have to deal with that” and “How horrible that must be!”

Honestly my average day is very much like yours probably is and I don’t think about all this stuff too much. I have a very cushy life and a loving family and I have a stable job. Really I just set up my environment to keep myself stable and safe for those around me and just kind of let it run on autopilot. But every few years I get a little lazy, I push myself a little too far and take a meeting I shouldn’t, and I get tired of disclosing all my conditions for the 100th time before a talk, and then the 125th time it bites me in the butt, and the cycle repeats.

Uri Bram: Lars, this was incredibly informative and thought-provoking and also incredibly entertaining, I appreciate it immensely. I’m thinking that might actually be a good answer to end on, but I’m hoping I might tempt you to come back another day to talk about the economic philosophy Georgism -- which, for our audience, this may sound like a sharp segue but is actually deeply related to the comment just now about blockchain, NFTs, real-world real estate and the economics of digital games. Lars, how does that sound?

Lars Doucet: By George, I’ll be there.

Uri Bram: Truly this was one of the most interesting conversations I’ve ever had. Can you please tell our readers where to find you online, etc?

Lars Doucet: You can find me on twitter at larsiusprime, I have a blog at www.fortressofdoors.com, and I occasionally write for Game Developer Magazine and a few other publications.

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