9/23/07

And now, our feature presentation

Movies. I love them. I was a huge film buff as a kid. I still am to some degree. The problem with movies for me is the ticcing. I don't know why but my tics increase big time when I am watching a movie. The same is true for TV. It's gotten to the point that I will not go to the movie theater with anyone. I do go to the theater but always by myself. When people question this, I just say I like to go by myself, which is absolutely true, but still I am not against going with others. I am against ticcing like a mad man and having people I know catch me.
I went to see the movie, Maze by myself. It was the middle of the day on a weekday. There were maybe 5 people in the theater. The combination of watching a movie and watching a movie with tics in it forced my ticcing into overdrive. I was ticcing loudly, too. But you know what? I was thinking, here I am in a theater watching a movie about TS. How can anyone in this theater look at me and not understand? I am just like the guy you are watching on that screen. That's me! Deal with it! But no one said anything.
My girlfriend always wants to watch movies with me. She wants to sit on the couch and watch a movie with me, like normal couples do. But I told her I don't watch movies with people. Ha. that sounds insane. I tell her that it makes no sense. You can't talk during the movie. It's not interactive. Why should we both spend those 2 hours watching a movie together when we could be doing more productive things with our time together? Movies can be watched by yourself. When we are together we should be spending time talking or doing something together.
Anyway, that is what I tell her. And I do believe that to some extent. I mean, we should be valuing our time together. But sometimes I am tired and do just want to watch a movie with her. I know how badly I will tic and so I don't. And the reason I give her is the one I have already laid out for her. "I don't watch movies with people."
I wonder why I tic so much when I watch TV or movies. It's the same when I play video games. It's actually much worse when I play video games. I have read a lot of information about touretters' tics subsiding while playing video games. Not for me. They get much worse. I guess for kids it is about focusing on the task at hand.
Maybe as an adult video games seem less like a task and more like recreation. I do miss them, though. Hell, I grew up on Nintendo. There are plenty more constructive things I can be doing with my time.
It's funny. I love film. And, although I almost completely stopped watching television, I did grow up on it and did love it at one time. And I certainly loved playing Nintendo, Commodore 64 and Sega Genesis. What's funny is that it is at these times when TS gets the best of me. It's like the demon sees I am enjoying myself too much and makes sure to put a stop to it. Oh, well. I will just stick to reading, I guess.
My girlfriend is coming into town tonight. We will be spending the next two weeks together. I doubt I will be writing during that time. She doesn't know I have TS, let alone that I write about it for all to see.
Maybe, we will watch a movie when she gets here.

9/20/07

"Maybe just happy"

Nirvana has a song on their album In Utero called "Tourette's."
I was a big Nirvana fan in high school. I remember the day the album came out. I rushed it home from the record store, tore off the plastic, popped the CD in and listened. I liked to read the liner notes along with the music when I was hearing a new album.
Serve the Servants, Track 1, was playing and I started skimming through the titles of the songs in the liner notes. There it was. That word. What's it doing here? Why was it in Nirvana's world? Was I seeing things? No. There it was!
Tourettes. My heart skipped a beat. Was I about to find out that Kurt Cobain had TS? Can he relate to my situation? This man whose songs I idolize? No way. But there it was. It said, "Tourette's."
OK, take a deep breath. I begin to read the lyrics. Now, Kurt Cobain was not known for writing the clearest of songs. His lyrics usually took many listenings to grasp the meaning within. And this song apparently was no exception. Here they are:

moderate rock...Moderate Rock
May day, every day, my day
Could've had a heart attack,

my heart We don't know anything,
my heart We all want something fair,
my heart

Hey(5x)

Out of town, out of sight,
is my heart Queen of lies,
today, my heart One more on the phone,
my heart One more at the door of my heart

Hey(5x)

Mean heart Cold heart(7x)

Yeah... Uhh....

What the fuck? Not only was I disappointed but confused. Does he have TS? Does he know someone with TS? Does this song have anything to do with TS? Why is it called Tourette's?
Maybe Cobain did have TS. Maybe he knew someone who did. Maybe that song is about TS. I don't know. Those lyrics don't relate to the TS that I have.
That plagued me for years. Every time I heard the song it made me angry. And if you know the song, TS or not, it seems designed to do just that. So, I started to think that maybe that was his point. The way that song sounded was the way I feel inside when I come face to face with the reality that I know I cannot escape from. I have no control.
Maybe Cobain was bridging his experiences with that of a touretter. But how would he know anything about TS if he didn't have it? Cobain suffered. He was a depressed, drug addicted, tortured man who was physically ill with some sort of stomach deal. He had no control of his life. He was a rich and famous rock star. But he was miserable. He felt trapped.
Now, that I can relate to. I feel trapped all the time. And when I hear that angry song called Tourette's it speaks volumes to me. I know what that feels like. I know. I am angry. I am trapped. I want to yell and scream just like Cobain does in that song.
I will probably never know why Cobain wrote that song. I probably do know the pain he felt when he wrote it, though.

9/18/07

Digging to China

I'm sitting here trying to watch a video on my computer. And the whole time I am obsessively plucking my chest hairs out with tweezers. And some of them I can't get to. And it is driving me nuts. I get so angry. So frustrated.
These are compulsions that need to be dealt with and I can't do it. I put the tweezers down and angrily started typing this. Ok. I am calmer, now.
I have memories of being very young and lying in my parents' bed. I used to try and pluck my father's few grey chest hairs out. Obviously as soon as I did it he would get very angry, yell at me, etc... And I would have to stare at them, begging to be plucked but there was nothing I could do about it. So, eventually, I would go back for more. When he calmed down and forgot about it I would pluck again. It's a good thing for him, he is all grey, now. No need to clean up the strays.
I did this with people's hair, too. If I saw one stray hair sticking up, I had to pluck it. I did it to my brothers. I did it to students sitting in front of me in class. Ya know what? Come to think of it, I still do that to my girlfriend sometimes. She gets livid when I do. Ha. She probably just thinks I'm weird. And this is true.
Sometimes I work at plucking a hair out of my arm or chest for so long that I dig and dig until it is bleeding. I used to use my teeth in class in high school. I remember my best friend, after class asked me why I was eating my arm.
But I get them out eventually. And then I am ok until I see they grew back. The little bastards. Always growing back. Maybe one day I will lose interest.
I used to bite my nails obsessively. I don't do that anymore at all. And I stopped cracking my knuckles. The truth is I haven't stopped a damn thing. I just replace one tic with another.
I stopped biting my nails because it didn't make my fingers look so hot. I stopped cracking my knuckles, neck, back, etc because it can't be good for me. Ya know, shaking my head and slapping myself can't be good for me either. Bound to cause some injury. Why the fuck can't I stop that? Can't I replace those tics with something else?
I will. New tics come, old tics go. And the veteran tics either stick around forever or just make cameo appearances every once in a while.
OK. I've got plucking to do.

9/16/07

Hung

I have an enormous headache. I have had it all day. I was out drinking last night. I got home at 4 am and didn't sleep much. The ticcing just makes the headache worse. Lately, one of my most abused tics is unfocusing my eyes. It's not exactly a cure for headaches.
This is the thing with drinking for me. When I have a few drinks my tics get much worse. And then as I get more and more drunk, they disappear completely. I have read about other touretters saying the opposite. They say their tics get worse when they drink. Maybe, they never get fall on their faces drunk. That's the problem. You need to get the demon so drunk it passes out before you do. I used to drink a lot. I had a serious drinking problem. And this was a direct result of my ticcing. The heavy drinking just made it go away, temporarily. The problem was I didn't always remember those blissful, tic-free evenings.
I have also read that smoking pot makes tics go away for some people. This is not true at all in my case. The exact opposite happens. My tics get way worse. That is the reason why I stopped smoking the stuff many years ago. I do still drink, though.
And although while I am drunk my tics recede, the next day I usually pay heavily for it. They get much worse. My ticcing is riding on a pendulum. Never stops. Back and forth. Push and pull. I quit drinking for 5 years, once. It didn't make a difference in the long run when it came to my TS. I still ticced. It still waxed and waned.
I do wonder about my drinking and drugging when I was younger. I started drinking and smoking pot heavily when I was a teenager. I read somewhere that this can make conditions like TS and OCD worse. Or at least accelerate them into a more mature state. I wonder, had I not drank and smoked so much in high school, would my TS be as bad as it is now. I had relatively bad TS when I was a child. Then it got a lot better when I was in high school. It wasn't until I was about 18 or 19 that it regressed back to the way it once was. Maybe it was the forced production of dopamine. Maybe I messed myself up more than I needed to.
I guess it doesn't really matter. I am here now. And this is the life I must deal with, however it came to be.
So, cheers, L'chaim. Drink up...

9/13/07

Close the door!

I had a dream last night that I told a total stranger that I have Tourette's. It felt great. She told me she thinks her husband sniffs all the time and she thinks he might have TS. That's when I told her I did. I figured she doesn't know me. Why not tell her? Maybe I should do that in real life. I think I will. The next time someone asks or it comes up, I will tell my story.
Last night I was at a family function. I always feel some pressure during these things. I am constantly trying to hide the tics. And they know I am ticcing. They probably notice them because it is not as easy to hide them when people know you have them. Usually when I hide them, it's by combining the tics with some other natural looking movement so they're not so obvious. But that doesn't work in a crowd of people who have seen you tic before.
Whether they notice or not I am still refraining from ticcing as much as I normally would. Even if I told everyone I have TS, I would still hold them back. I just don't want to be the focus of everyone's attention. I just want to exist as a member of the group. But I will always be different. Hell, my family is full of issues. Plenty of the people in that room have their own demons to deal with. It's just that mine are out in the open for all to see.
Can't I keep my demons hidden away like everyone else? Why must mine be on display? The whole world knows I have some serious shit to deal with. They can see it all over my face, literally. Sometimes I just wish TS was more like OCD. With my OCD symptoms, the madness goes on in my head. The tics bring that madness out for viewing. Let me be crazy inside my head like a normal nut! I want to be crazy inside! Is that so much to ask?

9/10/07

Palilalia

I am an impressionist. I do impersonations. Not by trade, of course, but I do them. I do impressions of famous people. Some are very good. Some are ok. I can do an impression of anyone I spend any lengthy amount of time with. I do most of the people I work with. I have had this talent as far back as I can remember.
When I was a kid I did impressions of everyone on tv. I did my parents, my brothers, teachers, friends. It didn't start out as me doing an impression. It started with me repeating everything I heard. I repeated everything. I still do. Most of the time I repeat things in my head. Over and over and over and over. But they make it to my lips and out into the world, as well. So, try watching a movie with me that I have seen before. Not fun.
I have a ridiculous memory. I memorize dialogue verbatim after one viewing. And I not only say the lines with the actors but I say them exactly the way they were said. And if it's a movie I have not seen before I will repeat the lines that the demon feels I should repeat.
Echolalia. That is the simple way to explain it. But it goes deeper than that stupid word. The way I perceive the world is not the same as most. I can't just hear what people say to me or what I say to them. Certain phrases get worked over and over in my brain. They deform and evolve and become new phrases. Then I repeat those. Sometimes for years. I don't think I was born with an amazing memory. I think it's the TS and my perception that created this formula for retaining information.
When I was in high school, I used to memorize entire films. I don't mean I memorized them the way people think they do when they have seen a movie a few times and know a lot of the lines. I mean I know every single grunt, sound, sigh, sound effect, face scratch, eye movement, everything!
I never took notes in school. All I had to do was pay attention in class and I could ace any test. This carried over into college but not to the same degree. In one class in college I would doodle while the teacher lectured and refer back to my doodles and remember exactly what was discussed. I can recall spelling tests in first grade. Remember spelling tests? I never studied for a spelling test in my life. I always scored 100%. I didn't understand how people didn't know how to spell a word after they saw the correct spelling once.
I equate all of this with Tourette's. I am not a genius. I do not have a photographic memory. It's the way I take in the world. It was the way I learned to soak up the world as a child. I was and am a mimic.
I repeat things I hear. In my head, mostly. This is why I am an impressionist. I have become so good at hearing things correctly and repeating them that I have developed a skill. But this skill is a curse. I don't want to hear all the depth in the way someone says something. I want to hear it and move on. But I cannot. I must repeat it in my mind a million times until something in me tells me I can stop.
I pick up the slightest inflection changes in someone's voice or the slightest over used movement in their mannerisms. I see these things without trying to. Once I have that figured out on you. I can imitate you.
When I was a kid I was not allowed to imitate my brothers. I remember it being a common sound to hear my parents yelling at me to
"stop imitating!"
When people tell me I have a talent, I thank them. But I, deep down, don't believe I have a talent. I am cheating. I have a disorder. It is not talent. It is a side effect.

9/9/07

Where did it come from?

I wonder where it came from? There is no proof but much evidence that TS is genetic. Why am I the only one in my family with it? My brother, clearly has OCD. My mom seems to have a slight case of OCD, as well. These conditions were never discussed, of course. I would never bring them up for fear of the conversation turning to my tourettes. My brother once brought up his OCD in front of me and some of my friends. I was so uncomfortable. I didn't say a word. I didn't contribute to the discussion at all. I wanted to. I had volumes to speak. But I was terrified the fingers would point at me.
I used to think my grandmother had a tic. But it was hard to tell if it was a tic or her just being old. Maybe that thing she does with her neck is something old people do. She is still alive and I am still unsure whether it is a tic or not. I actually, don't think it is. I think it is just some old lady movement. It's hard to explain but I think I wanted it to be a tic more than it ever could be.
I guess I assume it comes from my mother's side. I say this only because she has one sister with no children and one living parent, the one I've been speaking of. My father's family is much bigger. Lots of siblings and cousins. And cousin's children. No one has TS. I never got to see my mother's gene pool except for the three of them that I know.
For a long time I really wanted to know. I never asked my mom, of course. This all went on in my head. I don't care that much anymore. It doesn't matter. I am not looking to blame anyone. I am just curious where the man I know as myself, the man created by TS comes from; much in the same way people trace their families back to the old country to know where they came from.
I came from Tourette's Syndrome. That is the thing that made me. I don't know who or what I would or could be without it. I probably wouldn't be as smart. I probably wouldn't be as talented. I probably wouldn't be as creative. I definitely wouldn't have the strength or will power I have now.
I am TS. TS is me. The older I get the more I realize my temperament has been shaped more by tourettes than by any other factor. More than my environment. More than influence. TS was my socialization. I became who I am despite it. And I became who I am because of it. And I became who I am with it. I am and will always be a product of TS.
If it were gone tomorrow I would be thrilled. And I would lament over the loss.

9/7/07

Snap, Crackle, Pop!

I used to crack everything. Some people crack their knuckles. I cracked everything. I cracked my knuckles every way they could be cracked. I cracked my neck, jaw, elbows, wrists, back, knees, ankles and toes. I was so good at it after a while that I could crack every part of my back from the very top of my spine to the bottom simply by arching my back. I could crack the back of my neck by just dropping my head backward. I cracked my neck in a million different ways. I cracked my jaw in a million different ways.
When I cracked my neck I would do it by just jerking it around in a certain way. It's funny because it looked like a motor tic. But I was actually not ticcing. I was cracking my neck. Coupled with my other tics it didn't matter. Everyone just thought it was another tic. And of course it was a tic. An OCD tic. A compulsion to crack my neck. To this day I never told anyone except for one boy why I was doing that. They all assumed it was a motor tic and I let them. I told one of my bunk mates at summer camp when I was 9. I don't know why and I don't even remember his name but remember clearly telling him. I wanted to tell someone I was just cracking my neck. That's all. Not touretting. Just cracking.
Things started to hurt. My neck and jaw were a mess. They still are.
I stopped cracking them when I was quite young. I don't remember exactly when. I fought off those tics and won. The urge is still there but I fend it off somehow. I stopped cracking my back in high school. I stopped cracking my toes and knees and elbows in high school, as well.
I stopped cracking my knuckles when I was 18. I just did it cold turkey one day. That was hard to do. I sometimes ask people if I can crack their knuckles. I get a crazy urge to do it and I ask. I love cracking women's small and skinny fingers. I have been doing that for years. When I was a teenager I would ask female friends to let me crack their knuckles. I still crack my girlfriend's sometimes.
Two summers ago I decided to start cracking my knuckles again. I just went full force into it obsessively. And I did it for about two weeks. My fingers hurt so much that I was in agony when I was paddling through the ocean on my surfboard. My fingers felt like they were gonna fall off. I decided to stop again. And I did. Haven't cracked them since.
I don't know how I can stop it so easily. It is probably because of the pain.
A tic I now have is pushing back my fingers until they are about to crack and feeling the pressure but then stopping. that seems to satsify my urge. I do the same thing with my neck.
I stopped cracking my ankles just a few years ago. But I do still do that sometimes. And it hurts. I hate doing it but I cannot help myself.
I still crack other people's backs when they let me. I crack my girlfriend's all the time. Ha, just the sound of a back cracking satisfies me in a way I cannot possibly explain to a non touretter.
TS is such a strange syndrome. When and where does it end and I begin?

9/6/07

A man can dream, can't he?

I want to take a vacation from my tics. Just for a week. I just want to see what it is like. Sometimes I try to remember what life was like before I started ticcing. I do not know how old I was when I started ticcing. I think I was around 8. But I am not sure. It may have been much earlier. I feel like a blind man trying to remember what his childhood was like before he lost his sight. A week off is all I ask for. It's hard work, ticcing all day long. I wonder how long I go on average between tics. How much of my living existence is not taking place during a tic?
I like it when I first wake up in the morning. There is a nice, lengthy few moments where everything is just calm. I am emerging back into the world. No tics. Nice and sleepy. And then I feel one coming. But I can hold it off for a moment or two. The power of sleep is still lingering. And then it's back to reality. TicTicTic.
Sometimes I have this fantasy. I get to go back to when I was 5 yrs old, retaining all the knowledge and memory I have now but with no TS. I get to start over, knowing what it was like to do it the first time with TS. And I am Tic free. I get to go through my childhood with no tics. And life would be so different. I would be able to go through life without the burden of the enormous struggle growing up with TS caused me. It would be so much easier. A breeze. Aaaaah. That would be nice.

9/5/07

The corner of my mind

Two memories.
I have a memory of my mother being very patient with me when I was a little boy. I had this tic that I actually still have. It is a vocal tic of sorts. I don't know how to explain it. But the point is that I could not speak until I got the tic out right. This could take minutes. I would be doing it over and over and would not be able to say a word. It got so bad that I just didn't speak for days. I have much more control over it, now. I have learned to modify this tic so that it is similar enough to the old one that the demon is satisfied and lets me get away with it.
We were in the kitchen of our old house and I could not speak. She, very patiently and considerately, said: "I know it's hard. It's ok. Just write it down." I was so fragile at that young age. No one understood what this insane battle going on inside me was. And the person I needed the most was right there to lend me an understanding hand. I am sure there were other moments like that one but this is the one I remember.
Fast forward to about 15 yrs later. I was living with my parents during one of my many short stays when I was between homes (I move a lot). My mother and I were in that same kitchen. In the same exact spot, actually. We were having a random, casual conversation about drugs. Nothing too heavy. It was pretty jocular in nature. Then she said: "maybe that's why you do all those weird things." She was referring to my high school recreational drug use (nothing major. Just typical experimentation). I said: "What things?" I knew what she was getting at but wanted to make sure. Then she mimicked me. She made some awful jerking motion. It was a terrible imitation, if you ask me. She wasn't even close. But I got the point.
I honestly don't remember what I said or if I even said anything. But I do remember going up to my old bedroom and crying. A grown man crying in his childhood bedroom. It tore me apart; watching my mother make those gestures. Did she forget the horror of my childhood? Did she block it out of her memory? Does she not remember that day in the very same kitchen when she mustered up all of her motherly love, through what must have been a very difficult child rearing process, and made me feel ultimately safe and secure? Does she really think that smoking pot in high school caused my TS? How could she say that?
After all we'd been through. Her as a mother of a child with Tourette's Syndrome. And me as that child. She wants to blame me. She wants it to be my fault. I caused it. She wants to wash her hands clean.
I never fuckin blamed her gene pool. I never pointed the finger at her. I kept it all inside. I never talked about it with her past my adolescence. I dealt with it on my own. And I am sure, looking back that it was probably not the best way to do it. But it has made me the man I am today. I faced this disorder by myself with no support group save for that one goddamn memory of my mother in a kitchen when I was a little boy.
It broke my heart when she said those things to me as a grown man.
A big, grown, baby, crying man.

9/4/07

Everything's so blurry

I was trying to read my book yesterday. Sometimes reading can be hard for me. This is usually true when I am thinking about something else. I get distracted and the tics take over. I am not just talking about the noises, facial contortions and random muscle flexing. I will read a line and then look away for a second and then have to repeat this action several times over again. I even read the same line over and over. I read it until I hate the damn sentence. For example I read a sentence and then just happened to move my eyes to the chapter title at the top of the page for a second. Forget about it. I did that like ten times. I got frustrated and stopped reading, altogether.
I have gone through many phases in my life with concerns to reading. I am a very well read man. I couldn't even begin to count the amount of books I have read in my short life. But there have been many stretches in which I have not been able to read for months at a time. I can't focus on the book. This isn't because the material is boring. It's because my brain is performing a million tedious compulsions while I am trying to read a book. One fun tic I have when reading is unfocusing my eyes. I make them go out of focus while I am looking at the page. I am not sure how I do it. I guess I am crossing my eyes or something. Hell, I am doing it right now as I write this. It gives me a headache sometimes. And it is certainly not conducive to reading.
All this talk of books reminds me of something. Years ago I was in a book store with an old friend. We were walking through the store and every time I picked up a book, I opened it, shoved my face into it and smelled the pages. I have to do it. I had to do it to every book I touched. Man, if no one was looking I would have smelled every book in that place. Hell, I am gonna do it right now. Hold on... Oh, that was good. Nothing beats getting your nose into a good book. Ha. He told me with a definite touch of annoyance in his voice, "Stop smelling all the books!" I would love to know what the hell he thought I was doing.
It is amazing how deep ticcing goes. I mean, there is a fine line between an OCD compulsion and a tic. There has to be loads of things touretters do and not even realize they are ticcing. So many of our daily actions are based on a compulsion to do them. There are so many different levels to TS.
I have seen blinkers and sniffers. All they do is abuse one tic. One tic ponies. Over and over. I am envious. That's all they have? One fucking tic? Ha! I can tame one tic. I am dealing with hundreds, maybe thousands if you count every thought that is compulsive.
And I have seen people who are completely controlled by countless tics. They have no control over their bodies. There is a guy in my gym who is so over run with tics that I am sure everyone in there, except for maybe us fellow ticcers, think he is absolutely insane and probably dangerous.
And then there is echolalia, which I have pretty bad. Some touretters don't have it at all. It is my soundtrack as far as I am concerned. Constantly running over and over in my head. The same lines over and over. I am repeating lines from a movie I saw ten years ago in my head over and over. And then it comes out of my mouth. At the most random times. "What was that?" "What did you say?"
And then there are touretters who have severe OCD. I have it pretty bad but it is definitely the least of my problems. I think my OCD is a breeze compared to the rest. I can mostly keep it to myself in my own private hell. It is not on display like the rest of my tics. But I know that is not true for everyone. Some people have it the complete opposite. Terrible OCD with a pinch of TS for flavor. I have often wondered about OCD and TS being the same damn disorder. I mean isn't TS just an exaggerated form of OCD? We don't just have compulsions to wash our hands and touch the lamp. We have compulsions to flare our nostrils or squint our eyes or crack our necks or jerk our arms or make kissy faces with our lips or stab our gums with our fingernails or smack our foreheads with our flat palms or wink or make a noise from somewhere deep in our throats or tighten our ab muscles over and over again or whistle or hoot or howl or cross our big toes over our smaller toes or curl our lips or close our eyes while driving or make fart noises with our mouths or shake our heads or shrug our shoulders or make fists or chatter our teeth or make owl noises or sniff or scratch our widow's peaks until it hurts or raise our eyebrows or make devil faces or TWITCH or TIC!
And then there is the infamous copralalia. I don't have this symptom, although I can definitely get a feel for where it comes from inside the touretter's brain. To be honest, I think I am capable of developing it and think I may in the future. I do have urges to curse out loud when I think about the symptom. Just thinking that it is a possibility creates an urge, albeit one I have never acted on. I almost want to join the club. Hell if I am gonna have this thing I might as well get on board with all the symptoms I can. It is probably the most interesting of all the symptoms and that's, most likely, why it has gained so much recognition in the media of our easily entertained nation. I am all for the jokes. Believe me. I think TS is funny. I laugh at myself all the time. But it is a shame that yelling fuck and tits in public is what we are best known for. We have so much more good material.
And the list goes on. The point I was trying to make was that TS goes so much deeper than can be explained. My brain never stops and is going at full speed all the goddamn time. Ticcing away in one way or another.
That was a long one. Goodnight.

9/3/07

Wink, wink

Sometimes I convince myself I don't have TS. It doesn't define me. Most people don't even know I have it. I am defined by my sense of humor, intelligence, interests, job, background, etc... Yeah, when I am writing this blog I am always talking about TS. But most of the time it is not in my thoughts. So, I forget about it sometimes. And I live life. Ya know, like a normal person. And I place such little importance on it that I almost forget I have it. Those moments are nice. I find my symptoms get worse when I think about them. It's when I feel sorry for myself that I have Tourettes. When I feel good about life it doesn't matter. Who cares? There is way more to life than the absurd facial gestures I am making at any given time.
Ha, that reminds me of this time I went to a party with a college friend I hadn't seen in a while. My tics were especially bad at the time. I wasn't going to go because of them but went anyway. It was one of those decisions I made to spite my Tourettes. My TS doesn't control me. Ha. Yeah right. Sure it doesn't. So, after the party on the subway ride home my friend said "You make these 'facial gestures' you're not aware of." I can't remember the exact phrase I used to change the subject but I am sure it came out of the mental Rolodex I keep for just that occasion. Facial gestures. Ha! It makes them almost seem elegant or something. I can remember the pause before he uttered those two words, too. I could almost see the process his brain was going through, trying to find the least harmful words. And the words he found were great. Brilliant. Goddamn comical, they were.
But that was an example of someone trying to be helpful. He was being a friend. He didn't want to push me out the doors and leave me to fend for myself on the L train's notoriously dangerous subway platform in East New York. No, he wanted to help. But I did not let him in. I was the weak one. He was the strong one, willing to attack the subject. I am the coward who runs from any discussion of my TS.
I have read of people handing out cards that say they have TS, like a deaf person selling lolly- pops. Fuck that. I am not handicapped. Why is it my job to make everyone around me feel more comfortable? Let them stare. And when I catch them staring I shoot them a look of death. And they look way. I can be insane for all they know. They don't want to provoke any trouble. I always feel bad afterward. I don't wanna be mean. They weren't throwing rocks at me; they were just curious. I don't mean to be an asshole to people for just looking at me but sometimes I just want to be left alone.
But this is my life. I have Tourette's Syndrome. I don't get to be left alone. I don't get the luxury of everyone minding their own business. People will always stare. And there is nothing I can do about that. I can hand out cards until my wrist hurts. I will always be the one they're looking at. I am ok with it. This is the life I fell into. I can't trade it in like a used car. I am "that guy."
Sometimes I even enjoy catching people looking. It makes me smile or even laugh. The best is when I catch a kid staring and when we make eye contact and I smile. And the brave ones smile back. They realize I am harmless and I can't control it. Meanwhile their mom is reading her paper, oblivious to the whole exchange. But this kid and I are both in on the same joke. These kids seem to get it. If mom had seen it she wouldn't know how to react. She would have looked away or pulled her child closer. But not kids. They're innocent. They're just along for the ride, soaking it all in. This kid observed me doing something he knows I didn't want anyone to see and he caught me. Good on ya, kid. It will be our little secret....

9/2/07

I saw that...

The worst is getting caught. My boss caught me at work the other day. I was on my break. I knew he was a few feet away but I didn't think he was looking at me. Or maybe I just hoped he wasn't. Sometimes I can get tired of constantly looking around before I tic to see if anyone is watching. And besides I was reading text messages on my phone so any grimaces I made could have been played off as a reaction to a message I was reading. Ha. I am an idiot. So, he said: "You're weird." Just like that. Then he preceded to imitate the performance I had just given him. He was way off, though. He just raised his eyebrows. Little did he know there was so much more to it than that. Didn't he realize I am only raising one eyebrow while squinting the other eye? Ha. Amateur. I just shrugged and looked away. An easy enough way to change the subject. And I think it let him know that maybe this is not a subject I want to discuss. I mean he was just innocently observing. In all honesty he didn't mean to sound so mean when he called me weird. English is not his first language and he probably didn't realize how that sounded to me. Look at me. Now I am feeling bad for him. I feel bad that I put him in such an awkward position. I feel like I should write him a formal apology, or something. Jeez. I am losing it.
When I wash the dishes in my apartment, I display a whole series of tics. And it is right in front of a window. I have never noticed any but there must be neighbors able to see me through their windows. There is a window only a few feet across from mine. It's tight quarters here in NY. I am ticcing and appearing to talk to myself (Echolalia forcing me to repeat phrases over and over out loud). People must think I am crazy. "Who is that nut living in that apartment?" Maybe they're right. Maybe I am nuts.

9/1/07

"Another day perhaps but not today."

I just got back from a week long vacation with my girlfriend, who still does not know I have Tourettes. I realized something this past week. What I am doing with her is the same thing I always do with relationships. I am so scared to let people see what I really am. I let women fall in love with me. It is so important to me that they be in love with me before I will ever admit that I love them. I do this because it is my safety net. I need to know that if they figure it out or I tell them I have TS, it won't matter. I will already have them under my spell. Maybe I feel like there is less of a chance that they will run away.
So, this week was really good. From a TS perspective, anyway. My tics were relatively calm. That's good because before I left they were at their worst. This was obviously a result of stressing out about the upcoming visit. I was totally freaking out. I thought it was gonna be a ticathon hosted by Ticcy McTicenstien. But I became relaxed when I was around my girlfriend.
Ya know what it is? It's not so much that I am scared she will run. I am just comfortable right now being this guy she knows me as. I see no need to alter that right now. Why do I need to become the guy she knows but with a neurological disorder? Why can't I just be the guy I am right now? Maybe one day I will be the TS guy in her eyes but I figure I would rather hold off on that as long as I can.
I remember when I was a kid. I was on my way home from my 8th grade graduation. I was looking out the car window and saw this grown man, probably in his 40's, ticcing up a storm. It was clear he was with his family. And I mean the sight just took me by surprise. I guess I never thought that TS people could be adults with families. I mean here was an adult with TS. Hell, I am not sure at that age I ever thought about the possibility of being an adult, let alone one with TS. And this fat, ticcing adult was standing on the street with his capped and gowned daughter in tow. Who the fuck does this guy think he is? He has a family? A wife? How did this happen? So, I felt good about myself for a minute or two. Wow, we can have wives, too. That's amazing. I think back then I always assumed I would be married and have kids and a house when I was a grown up. But I never factored the ticcing into that assumption. I think that was the moment I realized I would be an adult with TS. At least that's how I remember it, now. It's the file I categorized this memory under in my vault of fleeting occurrences deep, deep in the dungeon of my dome. He couldn't have been the first adult I ever noticed twitching. But the memory stood and stands out.
Do I see myself having kids? Never! I stand by that. I just cannot do it knowing that I may pass TS on to a person I will undoubtedly love more than any other human being. It would destroy me. I think it is irresponsible. I won't do it. And this is a major issue in my relationship with my aforementioned girlfriend. She very much wants children. And she knows I do not. Although she does not know why. I always tell her that one day I will tell her why. It is unfair to do that to her but I never meant for it to be a secret. I just revealed too much too early. So, I guess I do intend to tell her about TS one day. One day. We'll see...