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.

A Relative Quiet

I apologize for not writing more in the past few months. The two posts on OCD took it out of me to some degree, and I’ve been taking a break from writing about mental illness.

But then something else happened. My daughter signed up for a second year of National Novel Writing Month (NaNoWriMo), and using her sly daughter Jedi magic she roped me into doing NaNoWriMo as well.

Ok, to be fair I’d wanted to do it, but she’s the catalyst that made it happen.

The idea behind NaNoWriMo is that each participant, during the month of November, writes fifty thousand words of a novel. Or to put that another way, each participant writes, on average, 1666 words per day for a solid month.

I’ve had a couple of ideas for novels hanging around for a while. None of them are very inspired, but one itched to be written more than any other. It’s a novel about a girl with TS and OCD who struggles with her own identity, her own value, her own place in the world. She’s thwarted by so many things that people with mental illness are thwarted by: indifference, outright animosity, misunderstanding, and distrust. And like many with mental illness, not all of that comes from the outside.

So far I have just over ten thousand words on the page with… forty thousand to go. (Yes, I’m behind schedule.) In those ten thousand words it’s already taken me places I didn’t expect to go, and shown me sides of my characters I didn’t expect to see. It’s hard work, but it’s a fun journey.

I don’t know if this novel will ever see light of day. I hope so, but that’s a whole ‘nuther story.

Intrusive Thoughts

“What has been seen cannot be unseen, what has been learned cannot be unknown.”
― C.A. Woolf

For the reasons in this quote from C.A. Woolf, I have shied away from writing about intrusive thoughts. They’re terrible things. When taken out of context they can be used to paint the person experiencing them as a monster. The rest of this was written at the risk of being judged in that light.

Symptoms of OCD tend to kick in a little later than the symptoms of Tourette’s Syndrome. My first tics showed up when I was three or four. I experienced my first intrusive thought several years later when I was in elementary school. It was strongly visual, as most of mine have been, and only hit me when I was in church.

I was raised Catholic back when Pope Paul VI was in the Vatican. The message from Rome revolved around abstinence, not coveting thy neighbor, and the hellfire and damnation awaiting those who strayed from the one true path. The priests at our church were all too happy to pass the message on to us in the most strident tones.

One Sunday as I sat in the pew listening to the admonishments from the pulpit, I had a flash vision of everyone in the church naked, grimy, coated with grease and dirt, clawing at the walls like rats in a sewer, trying to escape, and desperately fornicating.

As a young kid I didn’t have any real knowledge of how sex actually happened, so the vision was a little fuzzy on the details. This is an important point to keep in mind with intrusive thoughts: they come out of your own head, so they can only use what you already know. I was a kid. I knew what dirty looked like. I knew what greasy looked like. The ditch behind our neighborhood offered plenty of opportunities to watch rats trying to escape rising waters. But sex? No clue.

That first time I was too shocked to react. I just knew I didn’t want to go back in the nave of the church. So from then on whenever we went to church I sat outside. Or I sat in the restroom, claiming I had diarrhea. Or I sat in the crying room. Anywhere but in there where the naked, greasy, clawing rats were.

One of the messages the priests were very clear about was that it wasn’t the act that made a sin a sin; it was the thought. The very thought of coveting thy neighbor was a sin. The very thought of murder was a sin. The very thought of taking the Lord’s name in vain was a sin. The thought of all of the churchgoers having greasy, dirty, wild sex? You gotta be kidding me.

My seating arrangements didn’t go unnoticed. Nuns would stop to talk to me, as did a couple of the priests. One Sunday I worked up the nerve to ask how serious they were about the whole ‘the thought is the sin’ thing. I was treated to my own private sermon right then and there. I drew the only conclusion I could: I was hell-bound.

Being a good Catholic, I decided to go to confessional, but my parents wouldn’t hear of it. “You’re too young! What could you have done that’s a sin?” Oooooh… You have no idea. In the end family won out over religion and I never went. It’s just as well. I’m pretty sure I’d have been burned at the stake.

I’m making light of the religious consequences of that first intrusive thought, but at the time it was mortifying. Every Sunday it came back. I couldn’t stop it. I couldn’t un-think it. And the Church made quite clear I was going to hell for it. It felt like the entire universe had dumped me off a cliff and laughed as I fell.

It was the first, but it was far from the last. Several years later we stopped going to church and that particular intrusive thought faded. When my wife and I had our first child I was treated to the parent’s special: graphic visualizations of my child dying through my own negligence.

At the time I worked on a university campus and had to park several blocks away. This was Texas. This was the summer. By nine in the morning the interior of my car easily reached 120F. Each morning I’d drop my daughter off at day care, park my car, walk to my office, reel from the overwhelming knowledge I’d left her in the car, sprint back to my car, knowing I’d find her cooked, bloated body strapped in her car seat, only to find the car empty. I’d walk back to my office, feeling guilty anyway (the thought is the sin, after all!) and go through it all over again. Wash, rinse, repeat.

Ever since that one all of my intrusive thoughts have centered around my being responsible for the deaths of others. Back when my kids had all entered elementary school I had what is to this day my worst one: Every time I saw one of my kids or my wife, I witnessed myself stabbing them in the chest. I would see their faces register shock and betrayal, see their eyes glaze over as they died, and watch them slide off the knife and fall to the ground. Each time I looked at them it would repeat. Over and over and over. I spent close to six months experiencing myself murdering my family thousands of times.

Of course it showed on my face. My kids would try to hug me and I’d either flinch or stand, stiff as a board, awkwardly trying to return the favor. “What’s wrong?” they would ask. What was I supposed to say? What could I say that would explain what I was experiencing, but not frighten them away forever? “Nothing, hon. Just nerves.” It’s all I had.

I told my wife about that intrusive thought years later, after it had faded into the background. It freaked her out a lot less than I was afraid it would. But of course by then she knew all my quirks. It was just one more to add to the list.

More recently I’ve had one that centers around stabbing myself, triggered by seeing a knife on the kitchen counter or in someone’s hand. That one flares up every couple of weeks, and is still going on. I found I can counter it by turning all the knives on the counter so they’re handle-out tip-in, and leaving the kitchen altogether when it’s particularly bad. It’s not perfect, but it serves.

I eventually made peace with the implications of thinking such horrible things. Years ago I wound up in a therapist’s office under less than ideal circumstances. Because of those circumstances, during our first session she informed me that if she ever thought I was a danger to myself or others, she would push a button that would call the police. At the end of the session they’d escort me to the state hospital.

As much as that might sound like a threat, in that context it was meant as a promise. A promise that no matter what happened next, no one would come to harm for it. I clung to that promise like a lifeline.

That was the first time I ever spoke of my intrusive thoughts. I told her everything. About church, about my children, all of it. She listened patiently, asked pertinent questions, but didn’t seem alarmed. At the end I asked if the police were waiting for me outside.

“No,” she said.

“Why not?” At that point I didn’t know if I was safe to go home.

“Because you’d never do any of those things.”

I found her words hard to believe at the time. The thought is the sin, right? By virtue of my thinking it, I must be capable of carrying it out. Right?

As I learned during subsequent conversations, I was wrong. Intrusive thoughts don’t convey your deepest, darkest desires. If anything they indicate the opposite; they embody all the reprehensible things most antithetical to your nature. They’re your brain’s way of throwing you under the bus and sneering as it runs you down. Having them doesn’t make you an inherently bad person any more than having tics does. Being unable to shut them out doesn’t make you weak any more than being unable to stop ticcing does. They’re just one more part of the puzzle that makes up the mind of a person with OCD. Nothing more, nothing less.

It’s difficult to convey the importance of that conversation. It was the first time I knew my family was safe from me. It was the first time since I was a young child that I truly believed I wouldn’t go to hell just because of how I was made. It didn’t make everything better, but it meant I wasn’t beyond redemption.

So here’s the quote from C.A. Woolf in its entirety:

“What has been seen cannot be unseen, what has been learned cannot be unknown. You cannot change the past, but you can learn from it. You can grow from it. You can be made stronger. You can use that strength to change your life, to change your future.”
― C.A. Woolf

It’s in the second half of that quote that I put most of my hopes with this post. If others can learn from my experiences and not unduly judge me for them, it won’t be a wasted effort. And if I can spare anyone even the smallest measure of the grief and despair I went through at the hands of my intrusive thoughts, then some good will have come out of them after all.