Face Time

The last several years I’ve had a tic in which I hit myself. It’s undergone a kind of upward progression, first showing up as a leg hitting tic, then one where I’d punch my hips with both hands as hard as I could, then about a year ago it turned into one in which I’d hit myself in the chest. (I gave this tic to the main character in a short story I wrote at the time. See? It really is contagious… in fiction!)

When I was tired I’d occasionally miss and hit myself in the neck, but over time that’s what it transitioned to. In my late twenties I could tic-substitute to some degree (replacing one tic with another), but I lost that ability after a couple of years of being almost tic-free in my late thirties. Still, I really REALLY didn’t want to crush my trachea, so I forced my hand to go up higher and not hit myself in the neck. It took a couple of months, but now it’s settled on hitting myself in the face.

Which, aside from giving myself the occasional split lip, would be all well and good. Except that it’ll hit when I’m holding things in my hand.

A term that rattles around any discussion of tics and Tourette’s Syndrome is “premonitory urge”: a feeling that a tic is coming. Some people with TS get premonitory urges for each of their tics, some get no warning at all, and some experience the premonitory urge for some tics, but not for others.

I got some measure of warning with the leg-hitting and chest-hitting, and the premonitory urge almost necessitated dropping whatever I was holding so I could get it just right. It would sometimes involve hitting myself four or five times before the tic was satisfied.

Not so with the face. No warning, no premonitory urge, no nothing. It just happens out of the blue. The first time I hit myself in the mouth it came as a complete surprise. Except for a couple of years studying martial arts I’ve never been much of a fighter, but even with sparring, I forgot how much getting hit in the mouth can take your breath away.

For the most part I hit myself on the jaw, but a couple of times a day I’ll land a good one on the mouth. A couple of weeks ago at work I was talking on the radio and wound up bashing my mouth and nose with the radio because it just happened to be in my hand. Even after having this version of the tic for months, I’m still surprised when it happens. I stared at my radio and thought, “Seriously?”

I have to wonder where this will go next. Will it turn into a “pat yourself on the top of the head” tic? Or will I wind up looking like a one-man show version of the Three Stooges? (Oh please, don’t let me get “Nyuk nyuk nyuk” as a vocal tic!)

A more pressing question that went through my head a few weeks ago as I was cutting vegetables for dinner was: what happens when it’s something worse than a radio?

Previously, I’ve written that the severity of the tics themselves is not always an indicator of the severity of impact on the person with TS, and that to some degree that’s governed by the views of the society in which the person lives. While that’s true, severity of impact can also come down to other variables, such as where a person is standing or what they’re holding in their hand when a tic occurs, as I learned with my radio.

It also comes down to what you decide to do about them. Do you push forward? Do you retreat? Do you change  medication? Your environment? There’s no one right answer, and no two people with TS are likely to make the same choices.

I didn’t stop cutting the vegetables. I didn’t put down the knife. Instead I finished, cleaned it, and put it away the same way I always do. And the next day I picked it right back up again. A fella has to eat, after all.

Don’t Think Of These As Meat Thermometers

Despite my last post, in which I made the case that the increasing number of panic attacks I’ve been having don’t really have anything to do with TS or OCD, the reverse isn’t necessarily true. The increase in panic attacks has resulted in an increase in tics, and my intrusive thoughts have been off the rails. I even added a new one.

Several years ago, my wife and I watched a movie in which a medical examiner pinpointed the time of death of a body by measuring the liver temperature using a meat thermometer. I remember thinking at that time, “Huh! That’s the same kind of thermometer I use to measure the temperature of the milk when I’m making coffee.” So weird! Ah well. Whatever…

A Measure of Steam

A couple of weeks ago as I was making my second cup, I was struck by the sudden urge to measure my own liver temperature. The thermometer was right there. It’s sharp. It’s designed for this. The need to stab it into my liver was so strong, I had to force myself to drop it for fear I’d actually do it.

I wound up doubled over the sink, trying not to vomit.

Every time I looked up at the pitcher of milk, ready to steam, I’d see that thermometer clipped to the side just waiting for me. Back in the sink I’d go. I did eventually make that second cup of coffee, but it was an ordeal.

It’s never easy to talk about this stuff. Even when talking to people who know about OCD, it’s hard not to worry that they’ll judge you, think you’re bonkers, or worse, think you’re dangerous. I hemmed and hawed about telling anyone, but finally opened up to my wife.

She didn’t know what to make of it at first, but she listened as I described the urgent need to impale myself on a thermometer that, up until that point, had only ever been used to make sure I didn’t scald the milk while making coffee. In the end she promised to steam the milk for me, and I promised to get help.

We both kept our promises. I’m getting help, I haven’t stabbed myself, and she’s been helping with the coffee. More than that, though, she’s been finding ways to laugh even when it feels like there’s no laughter left.

A while back my wife took up knitting. As with most things she sets her mind to, she transitioned quickly from beginner to advanced projects. Right around the time the thermometer began begging to be used, she started making me an intricately cabled alpaca wool hat.

Right after she transitioned to making the crown, I came home from work to find her holding up a knitted tube with an ungodly number of double-pointed needles poking out of it. She pointed to them and said, “As long as you don’t think of these as meat thermometers, you can try it on.”

I had to laugh.

I let her lower the thing onto my head, knowing all those pointy things were practically touching my scalp, just begging to be rammed in. It was an absolute skin-crawling nightmare.

But the hat fit great! It’ll even keep my ears warm.

Once the meat therm… needles are gone.

It’s Not Always The TS (Or The OCD)

Any time you have any kind of mental health condition it’s tempting to blame everything on the diagnosis. Having a hard time? Must be the TS. Not relating well to others? Must be the TS. Fatigued all the time? Must be the TS! Right?

No, not always.

This goes hand-in-hand with the oft quoted phrase, “I have TS but it doesn’t have me.” People are more than just the sum of their diagnoses, and life is more than just a set of symptoms.

Earlier this week I visited my doctor to discuss a recent increase in anxiety. As part of the visit I had to fill out a mental wellness questionnaire they’re asking everyone to fill out, not just people who are there to talk about their anxiety. It consisted of a series of questions you’re supposed to rate on a scale from “never” to “every freaking day”. (Paraphrasing here.) The questions were things like, “Have you lost interest in your hobbies?” “Are you unable to focus on the tasks at hand?” “Have you had thoughts of harming yourself?”

My answers read like they’d been filled out by a bored kid who just circled the biggest number for each answer; the number that meant “every freaking day”. (Paraphrasing here.)

But of course that’s the case, right? This is someone with TS and OCD, right? Anxiety has to go with that, right? Depression, too, right? Must be related, right?

Right?

Not really, no. Sure, all those things are true, but that’s not why I circled the most dismal answers to each of the questions. I circled those things because a lot of crappy stuff has been going on in my life recently and I’m depressed and anxious. It’s entirely situational, and I expect my disposition to improve once the situation changes. But for now I’m feeling pretty rotten.

Late last year my cat contracted tuberculosis. A few months later my father fell and hurt himself, and needed someone to help him get back on his feet (so to speak). Shortly after I got back from helping my father, my cat died. Shortly after that my father had two strokes. Shortly after that I found out my aunt was dying. And shortly after that I was told that the family of the boy who’d beaten up my son at school was pressing charges against him. For assault.

Anxiety? Yes. Depression? Yes. Reasonable cause for almost daily panic attacks? You betcha.

Even slightly related to my TS or OCD? Not at all.

The visit went well. We talked about the questionnaire, the anxiety, the panic attacks, and all the contributing factors leading up to where I am now. We both agreed it’s practically all situational and that things really should improve over time, provided no other disasters happen in the meantime. I went home with an as-needed prescription I hope not to have to use much, and never to have to refill.

Oh, but I need to get my cholesterol checked again. It’s been over a year.

(And nope, that doesn’t have anything to do with TS or OCD either. That has to do with being human.)

 

Takes a Lickin’ and Keeps On Ticcin’

One point about Tourette’s Syndrome and tics seems to cause a good bit of confusion – the idea that they’re voluntary. (Hint: They’re not.)

Tics are a lot like a yawn: You can try to suppress them. You can occasionally stave one off for a while. But when your body says it’s time to yawn, eventually you’re going to yawn. (Another similarity between yawns and tics is that when you yawn you look dorky as hell. Not so different with a tic. So don’t judge. Everybody looks like a dork when they yawn, and everyone yawns.)

The great thing about yawns is there’s a cure: Stop hanging around with boring people. Or get some sleep. Something like that. Eventually your body stops needing to yawn, so you quit having to do it. Tics? Not so easy to fix.

Years ago I wrenched my neck from a repetitive head jerking tic. I went to the doctor to see what they could do to help. Of course I was still ticcing the whole time I was in the waiting room. I kept ticcing after they’d ushered me into an examination room. I was still ticcing when the doctor walked in. “What seems to be the problem?” they asked. I explained about the neck, and how much it hurt. “Stop moving your head like that.” “What?!” “If you’ve hurt your neck, you should stop moving your head like that so it can heal.”

No shit, Sherlock!

The problem, of course, is that you can’t. I sure couldn’t, anyway. How long can you suppress a yawn? A couple of seconds? A minute or so? Maybe. A week? Good luck with that.

My brother ran into this particular buzz saw harder than anyone else in my family. When I was a kid one of my tics was to make a loud snorting sound. Every couple seconds it would go off. SNOOOORK! (For those readers who are laughing to themselves at my expense right now, remember you look like a dork when you yawn!)

During the pivotal cliff-hanger scene of the season finale of one of my brother’s favorite shows, one of the main characters opened his mouth to say The Line that set up The Dilemma that would haunt The Audience until the next season. And right at that moment, SNOOOORK! Ohmigawd, I thought he was going to kill me!

He scoured the TV Guide for the next couple of months, trying to catch a rerun of the show so he could finally hear the line and understand what had been said! (Yes, this pre-dates streaming video by… oh… thirty years?) Finally, only weeks before the next season started, that same episode aired. He watched avidly, waiting for The Line. I sat on the couch trying as hard as I could to snork silently to myself. The Scene came, the actor opened their mouth for The Line, and… SNOOOOORK! I’d been suppressing so hard the whole time, when it came out it came out BIG!

Yeah, that time he really was gonna kill me. I had to run, and run hard.

The point to take away from all this is that a person with TS really can’t stop the tics. You can tie them up in a straightjacket and shove a ball gag in their mouth, and they’re still going to tic. You can threaten them with life and limb like my brother did, and they’re still going to tic.

So when someone tells a person with TS to “just stop it”, it’s sure’s hell not going to stop them from ticcing. It’s just going to make them feel bad about it.