No Problem! I’m OK. Go!

Years ago a friend got me into rally racing. I was only ever involved as a fan, despite his plans to take my VW Golf GT and race it. In the end he wound up with my car, but I moved away before either of us had the chance to stick a roll cage in it, much less race.

Regardless, it stuck with me. To this day my two favorite auto sports are autocross and rally. I don’t keep up with either one to the degree I could tell you who’s on top in any given year, but I enjoy watching them.

Earlier this week I hit Youtube and went through some rally compilations. These things tend to be mostly crashes, which really don’t interest me all that much, but you can find compilations that also highlight the incredibly skillful driving that makes rally what it is.

And then I found one that highlighted another side of rally that I hadn’t really thought about before.

Rally racing is a good metaphor for life.

“But the road is slick!”
“Drift the turn and keep going.”

“But my bumper just ripped off!”
“Your car just got lighter. Keep going.”

“But I just clipped a telephone pole!”
“Your car’s still running, right? Keep going!”

“I just flipped upside-down!”
“Your fans will flip you right-side-up! KEEP GOING!”

The first segment in the video summed it up beautifully. The driver hits a pothole in the road, rolls the car over on its side, and still manages to get it back on four wheels. His comment to his co-driver? “No problem!” To which his co-driver replies, “I’m OK. Go!”

We’ve been working almost every day on a project at work to prepare for the arrival of a new instrument. It has involved tearing down retired instruments, grinding down mounting studs, drilling concrete, installing new mounting studs, new plumbing, new wiring, painting, crane lifts, high work, you name it. It’s been a massive effort on the part of almost everyone I work with.

Somewhere in there several weeks ago I developed coprolalia: uncontrolled swearing. This is the tic the media would have you believe is the defining characteristic of Tourette’s Syndrome, when in reality only a relatively small percentage of people with TS ever exhibit that symptom – somewhere around 10%. But as I’ve pointed out in the past, tics come and tics go. There’s no telling what tic will show up next. In my case, it was taking one of my complex vocals and adding “Fuckers!” to the end of it.

Like most of my tics, it came as a complete surprise the first time. I wasn’t even particularly upset when it hit. I’d just stopped off in a lab to grab a tool and let out some tics in the relative privacy of the room. After my normal Hup! Hup! Growl combo, that word came out. I remember thinking, “Where did that come from?” But by the end of the day it had come out several more times, and I knew. Fuckers…

Of all the tics associated with TS, coprolalia and copopraxia (rude gestures) are, from a social standpoint, some of the roughest. It’s easy to feel isolated when people are staring at you because you’re jerking your arms around or growling, but it’s a whole lot worse when they’re covering their kids’ ears and glaring at you like you’re some sort of demon for what’s coming out of your mouth. I’ve managed to make a life for myself in which there’s little room for people to react to my arm jerking or growling, but I couldn’t predict what would happen with the addition of my latest tic.

What happened was that life went on. In the weeks since the tic first showed up we drilled new holes in the floor, installed the new mounting studs for the new instrument, painted the floor, installed clean room curtains, mats, and a garb station. We serviced other instruments, pumped cameras, and did all the other things we need to do to keep the place running. I made coffee for my family in the morning, ate breakfast, went to work, came home afterward, made dinner, read to the kids, and went to bed. And I ticced. Oh how I ticced.

Wash, rinse, repeat.

I’d hit a pothole. It threw me for a loop. But I got all four wheels back on the road and got the car pointed in the right direction. “No problem. I’m OK. Go!”

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He stuck WHAT up your nose?!

Earlier this year I was diagnosed with GERD, or to use a more common and not quite as accurate term, acid reflux. I’ve had symptoms for over fifteen years, but things finally got so bad that I had to do something about it. I went on medication, had an ENT stick a camera up my nose, and had a GE stick a camera down my gullet. Good news is I don’t have any signs of esophageal cancer or Barrett’s Esophagus, and I can eventually come off the meds. Bad news? My diet is forever changed for the blande… er… better. Or so I’m told.

In the middle of all these doctor’s appointments, one of my tics kicked me in the ass. Or, rather, punched me in the throat.

Several years ago the leg-hitting tic I’d had for a while did this upward migration to hitting my hips, and finally to hitting my chest. That’s where it’s still landing, but now I’m also hitting myself in the chin and mouth. Somewhere along the line the two merged into one “hit yourself in the chest, then the chin” tic. They can still show up by themselves, but the combination is the more common one at this point.

Which is all well and good unless the tic just splits the difference and goes straight for the throat, as it did back in August. I was at work, a loud noise went off, and wham, I’d punched myself in the neck hard enough for something to crack. The pain felt like I’d been stabbed.

All of this happened at our remote job site which, if you’re into the obvious, is remote. The nearest EMTs are an hour away and the nearest hospital is an hour and a half if you’re willing to speed. Because of this, a bunch of us are trained as emergency medical responders, including me. Throat trauma is one of the things we train for, so I used what I’d learned to assess the damage. It went something like this:

Are you coughing up blood and increasingly unable to breathe? No? Thank goodness, ’cause that calls for an advanced airway. The nearest one is an hour away at best, and you’d need one a heckuvalot more quickly than that if either of these were true.

Is the pain increasing or subsiding? Subsiding? Great. Means you’re gonna make it.

All of that took me about two minutes. Two really stressful, freaky minutes, but I realized I’d heal. The pain took over two weeks to go away completely, but by day two I was able to speak normally, if quietly. Life moved on.

Last week I had the follow-up appointment with my ENT. (It had actually been scheduled earlier, but I had to re-schedule several times because of other stuff that was going on. Normally this timeline would’ve been a lot faster.) I told them about the throat injury and asked for them for their opinion. It went something like this:

“Did you cough up any blood?” No. “Is the pain gone now?” Yes. “Congratulations, you’re gonna make it.” Cool. “I’ll let you know if I see anything.”

Lucky for me, they were already planning to stick a camera up my nose!

(Never in my wildest dreams did I ever guess a sentence like that would come out of my mouth at any point. Isn’t life just a wacky ball of fun at times?)

Good news is there’s no lasting damage. I had some irritation to one of my vocal cords, but I had a particularly loud vocal tic that morning, so I’m choosing to chalk it up to that. Otherwise I got a clean bill of health and a nose full of Lidocaine.

Which just goes to show that tics aren’t always harmless, medical training really can come in handy, and sometimes having some guy say, “Lemme stick this up your nose” is a good thing.

One Unguarded Second

When I leave work to go home I almost always have to stop at the same left turn light in town. It’s not fate or bad luck or anything; it’s just how the light is timed. For some reason I’m almost always the first car in line, so I have a completely clear view of the intersection as I wait for all the lights to cycle.

Just before my light turns green, the people on my right get to make their left turn. It’s a parade of cars going right past my windshield, each driver lost in their own story. This one’s angry. This one’s singing along to the radio. This one’s using their cell phone (which is against the law here, but that doesn’t stop people.) This one’s yawning. This one’s picking their nose. Each one is in a separate world going through separate things. As each car passes it’s one unguarded second in their lives into which some guy – me – gets a glimpse.

And then I turn left, and the person in that lane gets to look into my life for one unguarded second as I pass them. And then they see the next driver. Then the next. Then the next.

I’m sure there are times when they can’t figure out what my story is. The days I’m stretching my jaw hard enough to crack. Am I yawning? Yelling? The days I’m punching myself in the face. Am I mad at myself? Swatting a mosquito with my fist? The days my head jerks to one side. Did I see something I had to look at? Am I dancing to the music?

I try to catch their eye to see if I can figure out what they think I’m doing. Only rarely have I had another driver make eye contact. Most of the time I just see another driver staring at their own light, wondering when it’ll be their turn to go.

There are times when observation turns to judgement. Earlier today I read an article by Emily Cromwell in which she related just such an incident. But on the whole I get the feeling that people are too wrapped up in their own lives to do more than stare, once in a while, at something that doesn’t make any sense to them. They might go home and tell their family or their friends what they saw. They might not. They might be like me and just wonder how the rest of the story goes.

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.)

 

Another Crappy Thing About OCD

I suffer from mood swings. I can be on top of the world one minute and on the bottom the next. Once I’m at the bottom I tend to stay there for a while. At one point I wondered if this was indicative of bipolar, but after doing my own research and talking to a doctor I’ve come to the conclusion it’s not. A much more plausible explanation is that this is yet another wunderfuckingful manifestation of OCD.

In earlier posts I mentioned that tics don’t stop, even when they start to cause bodily harm. Some of the worst, for me, have been head-jerking tics that wrench my neck. Even when I pinch a nerve and my muscles spasm, the tics don’t stop. They keep going and going and causing more and more damage until I’m back in a doctor’s office, waiting to hear, “Well if they’re hurting your neck, why don’t you stop?”

Because. I. Can’t.

I’ve learned the same kind of thing happens with OCD. I fixate on a thing, and I can’t stop studying it. Eventually the need for information invades every aspect of my life. Whatever I know isn’t enough. It’s never enough. So I’ll stay up late, I’ll read on the computer when I should be doing other things, I’ll buy books I can’t afford because I need to know.

In so many many ways this has served me well. Unlike the tics, I’ve benefited from the information overload. I’ve steeped myself in Old Norse culture. My browser history is chock full of visits to sites describing stereo recording techniques I’ll never use. I have shelves of books detailing the history of machine tools. I learned these things not because I needed to, but because I needed to know.

None of this information has ever helped me win at Trivial Pursuit. In some ways it hasn’t helped at all, except that I feel better for knowing. All I know is that I can’t stop, any more than I can stop ticcing. Even when it hurts.

The one drawback of this obsessive approach to learning is that I’m a constant novice. I always find myself at the grassy foothills of a mountainous learning curve. As soon as I make any real headway into a subject, my mind jumps the rails and plants me at the foothills of yet another subject, staring up at the cliffs. As much as it’s invigorating to learn new things all the time, it’s also exhausting.

And, as I’ve learned over the years, not all experts are very accepting of the perpetually ignorant, no matter how driven they are to learn. The beginner questions I ask are often met with scorn and derision rather than real answers. But no matter how painful it becomes, I can’t quit. I can’t stop. I have to keep reading and asking and putting my foot in my mouth. It’s hard not to come away from these interactions feeling genuinely stupid.

After a while, feeling stupid really starts to grind on the soul. I wish I could tell my mind when to jump the rails and leave a subject behind. I wish I had some measure of control over the things I fixate on. I wish I could just stop. Why don’t I?

Because. I. Can’t.