Sorry

I wanted everyone to know that I might be posting less often soon.

This is because:

1) I’m getting better at managing my OCD and problems in general, so I have less need to focus on them and work through them.

and

2) I’m starting college in the fall, so I’ll have lots of schoolwork to concentrate on.

This might just mean that I post about the same amount, but have less time to read others’ blogs. That doesn’t mean I won’t catch up. And, most likely, no one cares! But I thought I’d post and let everyone know about this anyway.

In case anyone wonders, I plan on studying engineering so I can (hopefully) put my obsessiveness and repetitive checking to good use. 🙂

When a Deaf Man has Tourette’s

This post could also be entitled, “When an Idiot Publishes Articles.”

What’s making me angry on Google+ right now?

This. This is. Big angry right now.

There’s something wrong before we even get past the first paragraph:

“Coprolalia has been on my mind because I recently came across a fascinating case study. It is both straightforward and profound, equally suited to be a topic of discussion at a serious scientific conference or an impromptu cocktail party. It is, in short, just plain cool.”

Wow! I found an article about coprolalia that’s “just plain cool”! I wish I had an excuse to swear in public all the time like those awesome, cool people with TS! People with TS: you’re so awesome and cool! I’m sure that’s why you were constantly teased and bullied in school. Because of all that AWESOME COOLNESS.

Anyway, the case study mentioned is that of a 29-year-old man she calls “Signing Sal.” Apparently he’s been deaf since infancy, and also has Tourette’s.

Again from the article:

“In most people, coprolalia involves randomly blurting out obscenities. Sal, however, wasn’t shouting out obscenities—he was signing them.”

OK — absolutely no mention so far of the fact that few people with Tourette’s have coprolalia as a tic. In fact, this sentence implies that an automatic assumption of people with TS is that they, by default, have coprolalia. Greeeeeat.

“The implications are fascinating to consider. Sal’s case illustrates that coprolalia is a lot more than some mere muscular misfire, more than some vocal cords twitching like a bad leg. The fact that Sal’s utterances were in a language that uses hands, not voiceboxes, means that coprolalia isn’t a compulsion of vocalization, per se–it’s a compulsion of expression. That suggests that the outbursts contain some legitimate, meaningful content.”

Well, the implications are somewhat fascinating, though I suspect the person who wrote this article is doubtfully able to appreciate them, let alone tie their own shoes in the morning. Assuming Sal is real and really does this, the concept of signing coprolalia is interesting.

The famous TS motivational speaker Marc Elliot has said that his coprolalia comes more from his comorbid OCD, which causes him to think of the worst possible thing he could say at a given moment. I have thought this about coprolalia, too; though I don’t have it, it’s hard for me to imagine a physical urge to curse that is not, in some way, more cerebral at its core. That’s not to say I can’t imagine having coprolalia; but I can’t imagine it being entirely physical. That could mean, however, that I have a poor imagination. 🙂

“What the authors conclude from this accumulated evidence is that coprolalia, then, comes from some sort of urge to disrupt or disturb others. In fact, they say, coprolalia is a kind of linguistic aggression: ‘The utterance of obscenities is a form of aggressive behavior, and there may be failure in the control of these brief aggressive impulses in Gilles de la Tourette syndrome.’ That’s an entirely different dysfunction—and, in my mind, a far more interesting one–than some twitchy vocal cords.”

Well, I’m sure it’s more interesting to all you awesome and cool people who have about as much understanding of Tourette’s Syndrome as rocket science, but is it actually possible that the implications are not about aggression? People with TS swear not because they’re angry, but because they’re afraid of offending or disturbing people, and if anything this fear paralyzes them to the point where all they can think about is the very thing they least want to do.

I guarantee you that anyone with Tourette’s will tell you they are just as bothered by their tics as anyone around them, if not more-so. This means that if anything, people with TS have an urge to disturb and disrupt their own selves. They don’t, of course, but this is the only way that hypothesis would make sense.

It’s true that some people with TS have poor impulse control, and are prone to “rages.” However, there are also plenty of people with TS who do not have these traits. People with TS are just as different from one another as are those in the general population. We all have different appearances, interests, likes, dislikes, and tics. Tics are about a physical feeling, often mysteriously connected with OCD — not anger or aggression. If someone is cursing because they’re angry, that means it’s not Tourette’s that’s causing them to curse. That’s part of the diagnosis. The urge is involuntary.

Tourettic OCD

Yes, there’s really something called Tourettic OCD.

Apparently in cases of Tourettic OCD, people get the urge to do OCD-like compulsions, but the urge arises from a physical feeling; not a fear or obsessive thought. According to the article:

“TOCD sufferers report discomforting sensory experiences such as physical discomfort in body parts including hands, eyes, stomach, etc., or a diffuse psychological distress or tension, for example, ‘in my head’ or ‘in my mind.'”

What to make of all this? Will there one day be Chronic Obsessive Transient Tourettic Compulsive ADHADD — with a dash of Autism?

Tourette’s and Sensory Issues

This article is geared toward teachers so they can better help students with TS in the classroom. I’m using it to bring up a discussion about the possible link between TS, OCD, and sensory issues. The article, entitled TS is More than Tics, highlights awareness of multiple aspects of TS which are easily overlooked. One of these is “Sensory Integration Issues.”  It hasn’t caused severe problems in my life, but I know of a few specific, obviously sensory issues that I’ve had. First is that as a small child, I went through a phase of being extremely sensitive to light. I couldn’t bear to look up without getting an extreme headache. This was shortly after an infection I had and the doctor thought it was a sinus issue. It didn’t last but a few days or weeks before going away, but I feel like it still comes back now and then. Once in a while I’ll have a day when I can’t bear to look up without that pain. However, it usually just lasts a few hours and not the whole day. But there’s one more bizarre thing about it — logic tells me it must be light-related. However, it doesn’t always feel that way. When I was a kid for instance, I distinctly remember that I could be looking up even in a dark room and it would happen. That means it must be psychological in some way, but doesn’t make it any less real.

Second, when I was a child and my mom took me to the park to swing on the swing-sets, I found that when I’d come home at night and try to be still and go to sleep, when I got into bed I’d suddenly start feeling like I was back in the swing. That feeling of swinging back and forth came back to me and was very real and disturbing. It kept me awake for a long time. It felt like something I couldn’t control. Thus I began to think swinging on the swings was a bad idea for me. It could be that I simply stayed on the swing-set too long; or it could be that this is a normal thing that happens to kids sometimes. I don’t know.

Third, I’ve always had a thing about certain textures, especially paper — and especially when my fingernails are short. If my fingernails are short and the tips of my fingers touch paper in a way that doesn’t “feel right”, I get the willies really bad and feel like shuddering. I get an urge immediately afterwards to clench my fingers together, to get rid of the “bad” feeling. I’ve been thinking about this and realized it has some characteristics of a tic, but all my life I’ve just thought of it as a sensory issue. It will be interesting to see what my therapist has to say about it, but I have so many problems it’s hard to cover them all. 🙂

Also if it is a tic, it’s a tic triggered by a specific, external stimulus; as opposed to my breathing tic, which is affected by external stimuli but happens on its own as well.

I wonder if there could be a link between OCD and sensory issues as well. I know a lot of people with OCD/OCPD seem to be very particular about the way they wear clothes, and the way clothes fit or “feel.” I know that my mom had symptoms of classic OCD, not tics, and yet she had this same sensory issue with paper because I heard her describe it and remembered identifying with it.

C4’s “Obsessive Compulsive Cleaners”

I haven’t seen this new program yet — but if I did, I would probably be complaining about it, as are many others out there with OCD.

This article, from time-to-change.org.uk, puts it well by saying: “I’ve got a great new idea for a TV programme that I think Channel 4 may just be interested in. The programme would seek to tackle the national obesity epidemic by getting together a group of people with eating disorders to share their weight-loss tips with obese people.”

And here’s a YouTube video response to the show by LWMAMOCD.

It looks like there are lots of awesome people out there doing a great job of trying to spread true awareness of this often misunderstood disorder.

Unfortunately, I predict the stereotypes will not end — for the same reason that lots of other stereotypes never end. People cling to what they previously knew and believed. People want to use OCD as a catch-all term for cleanliness; and because they want to, they continue to, even though they may eventually learn that it’s technically inaccurate. Educating people before it becomes habit is key.

It’s also true that mental illnesses — like OCD — can be an exaggeration of what is, in moderation, a normal trait for people to have. Therefore, it’s possible that everyone truly does have a small inclination of OCD now and then. But for people whose lives have been seriously affected by obsessive-compulsive spectrum disorders, it is not a light or laughing matter. It would be like saying you have anorexia because you have sometimes thought about hesitating to eat, or because you have felt slightly guilty about eating. Sometimes people go as far as Libby Wolfson from the sketch comedy show SCTV with her line: “I’d kill to be anorexic!” by saying things like “I need to be more OCD” or “I wish I had OCD.” These people don’t know what they’re saying. They can’t possibly. Even if you wished to die, you probably would not wish yourself a slow and painful death first by torturing yourself with a debilitating disorder — unless you’re very masochistic, but most of us probably are not.

Phone Throwing?

The other day, I had to borrow a stranger’s cell phone to make a call.

The entire time I was on the phone, I was bothered by a thought in the back of my head: That I would somehow, accidentally on purpose (?), throw the phone to the ground. I was probably afraid of accidentally dropping it, too — but more than that, I was plagued by the thought that for some reason (probably because it was the worst possible thing I could do in that situation), I would throw it to the ground on purpose.

I held on tightly to the phone while I was using it, to make sure I wouldn’t do this — even though I probably wouldn’t.

It’s like there was this little voice inside my head telling me: “Throw the phone. Just go crazy and throw the phone down for no reason, just because you can.” But never, ever in my life have I actually done anything like this. Well — there was one time in elementary school when we were using scissors, and I thought: “It would be bad if I randomly cut some of my hair off with those scissors” and so I did precisely that — but it was such a small amount that I don’t think anyone noticed.

Just goes to show how simple tasks can be very distracting with the intrusive thoughts of OCD…

Medicine

On the “About” page of this blog, some of you may have noted I’ve written a bit about how I think the therapists we see should respect our wishes regarding whether or not to take medicine for our OCD (or similar disorders.) Now I’m going to put a fine point on that by saying, yes, that’s what I believe, but I also believe we should be open to taking medicine as it is, in many cases, a reasonable option.

But if it’s not truly necessary, medicine can often be a guessing game: Trying to find the one that works amongst all the others which don’t. Also, if you have multiple disorders, there is a chance that a medicine which improves one will worsen another. And in every case, medicine should never be a permanent solution; as Jeffrey Schwartz says in Brain Lock, medicine should be used as “water-wings” to help us get going when we need it. Even if we continue to need medication long-term, it still must not be all we rely on for our improvement.

It’s good to be skeptical, so if your inclination is automatically “I need medicine” — be skeptical of that. But if your inclination is automatically “I don’t need medicine” — it’s good to be skeptical of that, too. And, I really do have a hang-up about taking pills — which is weird, because so does Melvin in As Good As It Gets. When I was pregnant, I searched far and wide until I found special “petite” prenatal vitamins to take because the huge ones were just too much. I don’t talk about it a lot and it’s probably related to a fear of choking — it’s hard enough for me to eat normally with my breathing tic, let alone swallow a pill which could be a larger-than-usual choking hazard. I’m sure it doesn’t help that I saw unnecessary medicines overly taken wreak a lot of havoc on my mother’s health during my childhood.

Anyway, there’s how I feel about medicine. It’s really neither bad nor good; it’s a tool which can be used properly or improperly, just like any other tool.