I guess should mention that I have Tourrette syndrome. It’s not too bad, and in general you wouldn’t necessarily notice unless you hung out with me for a while. As I hope that you all probably know, Tourrette is not primarily characterized by uncontrolled swearing, despite what this idiot, who is clearly faking it, may do or say. Coprolalia – literally ‘shit speech’ – is extremely rare. People with Tourrette express a collection of motor and sometimes verbal tics which wax and wane with intensity and change in character over time. I mean, I do curse, but that’s just your regular swearing. In any case, I rarely if ever talk about my Tourrette since I don’t usually think of it as something that defines my personality, it’s more like a limp that occasionally gets worse when the weather is bad. It hasn’t prevented me from getting a faculty position, from doing my research, from teaching or from raising a family (more on that later). For the most part, I just have several tics, mostly facial, and clear my throat a lot. Occasionally I let out little grunts or repeat words, but that’s when I’m stressed out. Some of the tics are mental – meaning a specific thought or sequence is repeated in my head, forcing me to, for example, turn the light on and off twice. I can imagine that if that is taken to an extreme it would be similar to obsessive compulsive disorder. I also tend to abuse computer keyboards.
Most people don’t ask me about it, even close friends and colleagues I’ve known for years. I’m pretty good at hiding it when I teach or give talks, and if I’m focused on what I’m doing (like giving a lecture or dissecting a brain) then they mostly go away. I don’t usually book meetings right after class though, because sometimes after suppressing the tics for an extended period of time they get quite bad for a while, at which point I just hide in my office. People in my lab don’t ask about it either – I guess that would be weird for them, sort of like asking your PhD advisor about that lump in his neck. When people do ask, if its a friend who genuinely wants to know what’s up with the faces, then I tell them. If its some stranger in the street, I tell them to fuck off. I don’t ask them about their hemorroids, do I? Then why is it their business? But for the most part, I don’t make this something that is front and center in my life, it is just part of who I am, and part of my body language. That is why I’ve never tried to take medication to suppress it, and basically know how to manage when my tics act up, and know how to, for the most part, avoid situation which would lead to my tics getting worse. Unless the tics were unbearable and making me non-functional, I wouldn’t want to take drugs to correct some slight weirdnesses in my behavior. Alcohol in small quantities does sometimes suppress them too. Coffee has no effect wither way.
As a neuroscientist, I’ve been asked why I don’t work on Tourrette syndrome. After reading the available literature, I realize that we understand very little about the etiology of the disorder (maybe I’ll write about this another time) and maybe because of my intuitive insight into it, I feel like it is very unlikely that any research I can contribute would actually get closer to generating a sane treatment for the disorder. I mean, I know about the side effects of most psychiatric drugs and would certainly not risk surgery to have a deep-brain stimulator implanted in my brainstem. That’s just fucking nuts, just for a bunch of tics? Again, if tics were rendering me non-functional it might be a different story. So the short answer is that I don’t think I would have anything significant to contribute to this field.
So that’s it for now – hopefully you have gained a little insight about what Tourrette’s is like. Most of us lead normal lives, have families and jobs and generally function well within society. The New York times recently had a nice profile of several people with Tourrette. It’s worth watching. I do worry about my kids a bit, the prevalence in offspring of parents with Tourrette is ridiculously high. I do notice little tics in my kids and worry, but then again after visiting their preschool class I realize that most kids of that age are ultra twitchy and laden with tics too, so hopefully they will correct themselves. If they do develop Tourrette’s then hopefully I can serve as a role model of how to cope with being quirky and a bit different.