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.

Sometimes I Don’t Know Whether to Cry or Scream

Most of what I’ve written up to this point has focused on Tourette’s Syndrome. A common theme with the diagnosis of TS is the possibility of one or more associated conditions – co-morbids.

As with anything else, the symptoms of a co-morbid condition have to be severe enough to cause significant impairment in order to warrant a separate diagnosis. Simply being a little scatterbrained isn’t enough to warrant a co-morbid ADHD diagnosis, nor is the need to wash your hands a little more than normal sufficient to warrant a diagnosis of co-morbid OCD. The symptoms have to have enough impact to justify the diagnosis, which means that in many cases the symptoms of the co-morbid condition can be more difficult to deal with than the tics from TS.

That’s the case with me and OCD. My tics can be a real pain in the neck sometimes (pun intended), and have landed me in physical therapy from time to time, but OCD worms its way straight into your head.

OCD describes two separate phenomena that, more often than not, go hand-in-hand: obsessions and compulsions. Obsessions are intrusive thoughts or thought patterns. Sometimes these show up as images. Sometimes they’re urges. Sometimes they’re runaway thoughts you just can’t reign in. Compulsions, on the other hand, are repetitive behaviors, patterns of behavior, or mental acts you feel compelled to do, for want of a better term. In the classic case these often happen in response to or to ward off obsessions, but they don’t necessarily have to. They can be their own thing.

Like the tics associated with TS, the severity of obsessions and compulsions will vary over time. Sometimes they can be so mild that you’re only peripherally aware they’re there. Other times they color everything you think and do. And, like tics, they can be triggered by outside events.

I don’t have many compulsions. In a previous post I mentioned that I don’t step on cracks, or more accurately I don’t step on color divisions. The example I used in that post was walking through a crosswalk. I have to have my feet either only on bare pavement or only on the white lines, but not both. On bad days I have to step on the same number of white lines with each foot. As awkward as this sounds, I’ve managed to take up most of the slack by adjusting my stride. When I’m walking with other people they hardly ever notice.

Years ago I had a hand washing compulsion. But like the not-stepping-on-cracks thing, for the most part people around me rarely noticed because we, as a society, have created so many opportunities for people to wash their hands discretely. For me it wasn’t just about washing my hands, though. I had to rinse them clean. At one point I was seeing a doctor for my OCD, and just before each appointment I’d stop by the restroom to (can you guess?) wash my hands (surprise!) But for some reason they stocked the restroom with the goopiest, stickiest, slimiest lotion soap known to humankind. During one of my sessions I was particularly agitated, and the doctor asked what was wrong with me. I think I was holding my hands like they were coated in dead fish goo. “Why would a doctor who treats people for OCD keep lotion soap in their restroom?!” I don’t think I ever convinced them there was anything wrong with this. I also don’t think they saw the humor.

I should probably leave the hand washing compulsion on that lighthearted, self-deprecating note, but that would be a disservice to other people who have that compulsion. It’s not always funny, and it’s not always safe. When that one was at its worst I had to scrub my hands with undiluted bleach and Scotchbrite pads. Months of doing that damaged the skin on my hands to the point that it’ll never really recover. (Remember that part about causing significant impairment? Not kidding.)

But for all that the worst part of OCD for me is the obsessions. The intrusive thoughts.  The spiraling negative feedback loops. I’m going to save intrusive thoughts for another post. They’re a touchy subject for reasons I’ll get into when I write about them. For now I’m going to focus on spiraling negative thoughts.

Have you ever had a conversation that you felt you got the worst of? Then for the next hour or so you play it back in your head, trying to figure out what you should’ve said? Trying to figure out what they might’ve meant by what they said? Wondering how that could’ve gone better? Instead of doing that for an hour, do it for months, replaying every conversation you have, wondering what you said and did wrong, wondering if you’re chasing off every friend you have. Wondering why anyone likes you at all. Now extend that not just to conversations, but to everything you see and do.

Negative feedback obsessions are the classic case of Catch-22: damned if you do, and damned if you don’t. Every gut instinct is telling you that the worst case scenario is going to happen, so your every thought is drawn there. How to deal with it. How to get through it. Trying to figure out what people will do and say, and trying to figure out all the ways the situation could get even worse.

It’s easy to say, “But when you find yourself thinking that way, couldn’t you just focus on positive things?” It’s not that simple, though. Not considering the worst case scenario feels negligent. If you don’t plan for it you’ll be unprepared when it does happen. You won’t deal with it. You won’t get through it. You’ll be caught by surprise by the things people will do and say, and when the situation gets worse you’ll be left standing like a deer in the headlights.

The people around you tell you that you’re over-reacting, and what they’re saying makes sense. But your mind is telling you the worst is yet to come. You begin to doubt your own doubts, and wind up in a situation in which no one is advocating for you, not even yourself. You’ve second-guessed yourself so many times you don’t know what to believe any more. You don’t know whether to cry or scream, and find yourself wishing it was all just tics.

Tics and Traveling

One of the down-sides of having Tourette’s Syndrome is that you simply can’t blend. Most of the time this isn’t an issue, but there are certain circumstances under which it’s a virtue.

An obvious one is espionage. You have two spies entering a building. One looks strangely like Daniel Craig – wears a tux like he was born in it, exudes suave and confidence, and has those piercing blue eyes that draw you to him like… Ok, actually that’s just as bad as having tics. Start again!

One is completely nondescript: average height, average weight, a forgettable face, no bling, no flash. Someone like that is going to be able to get in the building and probably gain access to whatever they need through basic social engineering. “Hey, is there a restroom around here? Oh, no, I won’t be a minute.”

The other spy has TS… Yeah… EVERYONE is going to notice them. Everyone will remember they were there. It’s like that part of the cop show where they ask the only witness if they remembered anything else about the incident. “Well there was this one guy who kept whacking himself and saying, ‘Cheeseburger!'” This is why I’ve never considered espionage or crime as a career choice.

Another circumstance in which having tics is a drawback is having to travel by air. Ever since 9/11 the world has become more paranoid about the security and safety of air travel. I’m glad, because I’d like to know that’ll never happen again. But at the same time it makes it more difficult for people with TS to fly because security staff are trained to look for people who stand out. Who look different. Who act different. People who don’t blend in.

I have a long long list of incidents I’ve had with airport security. For a while I couldn’t fly without being pulled out of line at every security checkpoint. My bags were searched. I was searched. I’d go through the backscatter machine like a good little traveler and still get the pat-down search. In one instance security came up to me at the gate during boarding, pulled me out of line, and emptied my bags onto a table. I was already inside security! I was about to board the plane! It was humiliating. It also made me late for my flight.

It got to the point that I really hated to travel at all. If I lived anywhere but an island, I’d have sworn off air travel altogether. But out here in the middle of the Pacific I really don’t have the option to drive.

So several months ago I paid my fee, gave them my fingerprints, and submitted to a background check by the Department of Homeland Security so I could qualify for TSA Precheck and get a TSA Known Traveler Number. I passed, of course (can’t see me tic in a background check!), and got my KTN.

Question was, would it actually help? Last week I had a unique opportunity to put it to the test.

Last Sunday my sister called to tell me that our dad had fallen ill. She and my brother couldn’t fly out to be with him and help him through all the doctor’s visits, so I offered to. “Hey!” I thought, “What a great opportunity to use my KTN and see if I stop catching so much crap for my TS!” Problem was I couldn’t find anywhere to enter it on the airline’s booking page. “Oh well,” I figured, “I’ll do this test some other time.” So I flew out there without it.

I didn’t even get on the first plane before the run-ins started. “Sir, please step over here.” Sure enough, they ran my bags twice, ran me through the backscatter, pulled me out of line, patted me down, and damn near stuck a radio tracker and a numbered ear tag on me. “Have a nice flight, sir.” Right…

I stayed for a week, got my dad to all his appointments, and got him on the road to recovery. Once I was sure he was going to be ok I made arrangements to fly home. While booking my ticket for the return flight I finally found the little checkbox that let me say I’d gone through the TSA Precheck process and enter my KTN. When I printed my boarding passes I looked to make sure it said “TSA Precheck” on them. Sure enough, there it was. Yay!

But the real test was the security checkpoint. I went in the “TSA Precheck go here” line (which was incredibly short!), did not take off my shoes, did not pull my laptop out of my bag, and… did not get harassed by security. At all. No backscatter, no pat-down, no glares, no nothing. When they told me to have a nice flight I honestly thought this time I might.

And I did. It was glorious.

The one other thing I did for this set of flights was to get a medical ID bracelet made. (In teal, no less! Happy TS awareness month!) It’s not the full-blown Medic Alert bracelet that has an 800 number with a patient ID number and all that. I don’t need that kind of service. I just needed something that said I had TS, and an emergency contact number (my wife) so that if anyone had questions they could call and ask.

My thought was that if airport security decided I looked like a threat and pulled me out of line while I was boarding my plane I could show them the bracelet and say, “Hey, I have TS. I’m not ticcing because I’m nervous or on drugs, I’m ticcing because I tic.” But it never came up. And now that I paid the government to fingerprint me and dig into my past, it might never happen again.

One can only hope.