Ed's Tourette's

     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'm learning that one of the more ludicrous and amusing and frustrating aspects of having Tourette's is trying to discern the difference between an intentional action and a tic. I think most people would never have to question this sort of stuff, so I think members of the TS community (both patients and caregivers) are uniquely qualified to discuss matters of intent. Prior to my diagnosis, this is something I wouldn't have even bothered to think about.          How do you define intent as it relates to an action you take? I mean I know I CAN breathe intentionally, but I rarely do. If I am, it's usually because a doctor is listening to me breathe or I'm trying to blow up a pool float or something. I walk on purpose, but the action itself is pretty automatic. Drinking aside, I'm not consciously putting one foot in front of another. If someone throws me a ball, I (try to) catch it reflexively. It's not an intentional movement, it's a reflexive one. ...

I'd intended for tonight's post to be about my tics. I was going to list them, describe them, and talk about how they make me feel. I decided not to do that. First, it's a little humiliating. Nothing productive can come from listing the involuntary movements and sounds I make. There's not much I can do to control them, and I'm working towards accepting my tics and integrating them into a generally positive self-image. There's also a weirdly voyeuristic quality to listing tics so that someone who isn't a TS patient can read them and be like, "Oh, that's weird." Trust me, I know that turning my head to stare into a light in the middle of a conversation is weird. Second, and as I've already mentioned in a previous post, tics are only the tip of the iceberg. They are the outward facing aspect of Tourette's. If someone has a problem with my tics or thinks my tics are funny or decides to judge me because of them, then that says a heck of a l...

I mentioned in my previous post that I was diagnosed with Tourette's Syndrome just this past December at age 37. My attempts at diagnosis started roughly 25 years earlier. When I say "my attempts", I really mean "my mom's attempt" at diagnosis. My mom didn't (and still doesn't) miss anything about her three boys. She noticed when I began to shake my head and fling my arms out, and both she and my dad noticed my quiet grunts. I can't remember how old I was exactly, but I do remember that the first time a classmate made fun of me was in the 5th grade. He's a failed rapper now, and I try not to be happy about that. My failure rate is high. Anyway, at a checkup during the summer time, my doctor asked our pediatrician what she thought it might be. "Nervous tics" was her answer, and vividly remember my mom telling me that as we drove across train tracks. Not even sure which train tracks they were. My mom said the pediatrician told her t...

Impostor syndrome isn't a disease in its own right, but the feelings it generates can be so oppressive that it might as well be. People from all walks of life struggle with this phenomenon. I imagine a baseball player just promoted to MLB might feel this way. A person who earns a promotion at work and is breathing the rarefied air she once thought reserved for people she perceived to be better than her might experience it too. On top of my normal tics and the stress and anxiety they can sometimes produce, I also obsess over whether or not my TS is severe enough to even merit the attention I give it. To my knowledge, there are no official levels of Tourette's that might be used to separate patients by severity. I can tell you that my tics don't cause public disruptions. I can probably count on two hands the number of times in my life someone outside my immediate family has commented on or questioned my tics. I know a significant number of other TS patients have tics that a...

Hello! My name is Ed, and I have, among other things, a wife, a son, a job, a beer belly, a love of gardening, a great chili recipe, and Tourette's Syndrome. All of those things are parts of me, but none of them tells the whole story. I'll be using this space to do that. If you've somehow stumbled upon this blog without knowing what Tourette's Syndrome (TS henceforth) is, here! Have a  link ! I have a feeling that if you asked 100 people with TS to explain it to you, you'd hear 100 varying responses with a few common threads. For me, it's knowing that at all times, I have only partial control over my body. That might sound awful to you and sometimes it is, but try to think about it from my point of view: I can only remember being like this. I'm a little iffy on the exact timing, but I think I became symptomatic sometime around 4th or 5th grade. If I recall correctly, my first symptoms were an irrepressible urge to shake my head and to fling my arms out. Th...