If I beat this horse any more, it's going to rise as a zombie and kill me...
I feel like, in these posts, I talk entirely too much about my various disorders and neuroses. But then, they're a rather large part of my life. I mean, they're always with me, they're 'on' all the time so to speak, they are, on a fundamental level, a part of my very nature. Just the way that one's body is always with one, well, these are with me, too.
But the body is usually an unobtrusive part of life, I think; although we see things all the time, we don't think much about just what it is that our eyes are doing so that we may see. It sort of feels like we're inside the body somewhere, 'behind' our eyes so to speak, looking out through a window. Of course it's much more complicated than that, but that's how it FEELS. We only really notice the body when it malfunctions, I think...
Hrm, but talking about my weird issues all the time probably makes me sound like a bit of a complainer...heh. The thing is, though--well, it's like a conversation I had with my brother a ways back. A few months ago, I think. It must have been over winter break, because that's the only time we would have been at home at the same time, having a conversation, because we haven't had any other intersecting vacations recently. ...my, I go through a lot of thinking just to figure out when I last spoke to my brother...oh well. But anyway.
I was talking about Tourette's with him. Well, to him really, because my brother has a tendency to glaze over and watch his movies or IM his girlfriend while I'm talking to him, even if HE is the one who initiates a conversation. He has low conversational skills and attention issues. But anyway, I like to talk to him about these things, because he has it too, so I feel like if anyone will understand these things, he will. And we sometimes sort of commiserate about shared issues--I remember one time when we were home at the same time we went out to the mall together, and he mentioned how he had injured his shoulder recently from ticcing, and the summer before I had injured my back through ticcing, so we were discussing strategies to deal with it, reduce further damage, just commiserating together like that. It's comforting, to know you're not alone.
So anyway I was talking to him (well, at him I suppose, -__-;;;;) about it, and he ended up saying that he wanted me to shut up and go away, basically. That's really not all that unusual for a conversation with my brother, actually. But anyway he said that he didn't like thinking about Tourette's and his other various disorders too much. That that was how he coped, basically.
Now, for me, it's just the opposite. The way I've coped, the way I DEAL with all this, is by knowing as much as possible about it. In order for me to deal with my issues, I need to know them intimately, to know MYSELF, so that I know, for example, how I'll react to particular stimuli, how I can minimize or conceal tics if possible, what sort of things are triggers, what are warning signs of particularly bad episodes, etc. That's how I keep it together. And thinking/writing/talking about it all helps. It helps on an emotional level, for one thing, and it helps on an intellectual level as well, because I've noticed that when I write about things, I realize things that I never did before. I get new ideas through writing.
So, anyway...I'm rereading The Man Who Mistook His Wife for a Hat, which is a fantastic book by Oliver Sacks (I love his work, I just finished reading Musicophilia and lent it to my friend Tika). It's a book of neurological case studies, basically, and it got my thinking about my own situation. Well, I guess most people view things through the lens of their own experience, so maybe that's not quite as egotistical as it sounds. It gives me a bit of a guilt complex, though...to anyone who reads this, please feel free to stop reading and ignore me if you so desire! *bows* I apologize for my self-obsessed rantings...*is ashamed*
But anyway. What I was thinking about was...well, to start, I was reading the chapter called "The Disembodied Lady", which is about a woman who loses her propreoception (the sense of our own bodies, that makes you realize that your body is YOURS, allows you to touch your nose with your eyes closed, that sort of thing--the body's sense of itself, kind of. It's hard to explain...the book explains it really well, but I can't really...^_^;;;), and thus feels utterly disembodied, like her body isn't HERS anymore.
And I was thinking about how I sort of feel, sometimes, like my body isn't entirely mine. Not in the sense that I feel disembodied, and can't tell where my body is and whatnot--physically, I'm fully aware that my body is mine, I know where my limbs are even without seeing them, etc. But sometimes, I feel like on some level my body is sort of co-owned, like a timeshare or something.
It's the tics. Sometimes, it feels like...hrm, this is hard to explain. See, although tics are semi-voluntary--they aren't just random tremors, I actively DO these things, my brain is sending commands to my muscles--they also AREN'T voluntary. That is, it's my brain that's controlling my body, but it feels like I'm not the one controlling my brain. Something else is sending the orders, and I can't disobey, no matter how hard I try. So, in that sense, it sort of feels like my body isn't entirely mine.
And I was thinking that I was sort of resigned to that, kind of at peace with it. Which is somewhat true--I don't feel like my tics are imposed on me or something, they're just...part of me. A part of me I don't consciously control, but me all the same.
But then it occurred to me that, however much I may believe that on an intellectual level, however much I think that's how I feel--there's a part of me that doesn't feel that way at all. On some level, there really is some resentment or anger or whatever, that my body doesn't listen to me. Because on some level, there's just that instinctive feeling that it SHOULD listen to you, that your body isn't supposed to just jerk and twitch and move without your consent. That if you decide to walk forward, your body is supposed to walk forward, not decide to do something else.
The feeling of being controlled, of being coerced into these strange actions--there is a part of me that rebells against that. I can't deny that. I'd like to believe that I've reached a truce with my Tourette's, that we sort of accept each other's existence--but that would be a lie. It's sort-of true--I'm somewhat at peace with my Tourette's. I accept that this is just a part of me, that it has good and bad aspects, etc., and I've learned to deal with it. I've learned to deal with a lot of the feelings of shame, too. I remember when my brother's tics first started to become really noticeable--the first one I can really remember was that he used to jiggle his leg up and down when he was sitting on the couch or at the table. It would make the whole couch shake, and my mother (they usually sat on the couch if we were all watching TV together, I sat on the loveseat, Dad sat in his armchair) would tell him to stop it, because he was shaking the couch, which of course was quite annoying.
Back then, none of us knew about Tourette's, so of course my mother must have assumed that it was a habit, or something that he was just unconsciously doing but could stop doing, like biting your nails or something. My brother did that, too, I remember...my parents tried all kinds of things to get him to stop, like that nailpolish that tastes nasty that they make for nailbiters, but nothing worked. And no wonder--looking back, I know now that it was a tic, and I know that he COULDN'T stop. And it must have been terrible for him, too--he didn't know why his body was doing these things either. And at first they FEEL like habits, you feel like you could stop doing it probably, if you really tried--you don't realize that you can't stop until it's something you don't want to do, and you can't stop it, and it's just...it's not pleasant.
And I remember sitting there on the loveseat, and listening/watching while my mother told Matt for the millionth time to stop shaking his leg--at this point I think she realized something was wrong, but still thought it was a weird habit or something, because she thought that if he was made aware that he was doing this, he would be able to stop, which is a reasonable assumption, it's just that it's not true--and I felt so afraid, and ashamed. Or maybe nervous would be a better word, sort of nervous and fearful/apprehensive.
I'm not really sure why, exactly--my memory of past events is hazy. This one does stick out, though. I'm not even sure how old I was. I must've been in at least third grade, because I think I had glasses at that point. Not really sure, though. ...wow, I really am not sure at all. No I must've been older than that...hmm, don't know. But anyway I was in middle school, somewhere between third and sixth grade.
And I was thinking to myself--this is a hazy, paraphrasing recollection, I do not remember exactly what I was thinking, like I said my memory sucks--that I was glad that wasn't ME, that I was glad it wasn't happening to me. But I was afraid that it would be me, I think. Looking back now, I had tics long before I knew that I did. Simple ones, just things like 'evening up'--like when I was sitting in the car, I'd clench the muscles on my right side in a certain order, then the same order on the left. stuff like that. I thought it was just a way to pass the time on car trips. But, I couldn't stop once I started. And if I did it in the wrong order, it would feel 'wrong' somehow, and I would have to do it again in the 'right' order. I remember trying to change the order a couple of times, and not being able to. And I remember sometimes being torn between two orders--one would seem more symmetrical, more 'right' intellectually, but another would feel more 'right' physically...I had no idea back then, I was like eight or nine. I thought it was just a habit. I thought it was just a game. Just something I did because I was bored. It was totally situation-specific.
Once I got glasses, there were more. I kept pushing them up my nose. They would slip down a bit, and I would do it. I thought it was just a habit, just to make them fit more comfortably. But my brother got tics with his glasses, too.
And that night, listening to my mother try to help my brother stop shaking his leg--because she really was trying to HELP him, it's just that that was the wrong way to do it--although I can't remember exactly what I was thinking, I remember looking down at my plate (we were eating dinner at the time. Yes, in the family room, on the couch. ^_^;;;), and keeping quiet. Not that I had anything to say, but I just remember that feeling of trying to be invisible, not wanting anyone to notice me. Not wanting to have that happen to me.
I think it was mostly because I didn't want my mother to scold me about it, like she did with Matt. Well, it wasn't scolding, exactly, but it was annoying. She was trying her best to help, but it was annoying, I'll admit. And to my child's mind, it had now been clearly marked as 'bad', as an incorrect behavior.
I don't know why I was so ashamed and fearful, really, but...I think I must have known, on some level, that I did those things too. That I moved and twitched and things. I can sort of remember telling myself that that wouldn't happen to ME, that I wasn't going to do those things, get those bad habits.
My brother had a lot of other issues too at this point, because of his undiagnosed learning disabilities, so I'm sure that contributed too. I remember listening to my parents shout at him, sitting in my room with the door closed, trying to block it out. To not listen. I have this one specific little snippet of memory, of sitting on the floor by my closed door, listening to them shouting at him but also not wanting to listen. I was distracting myself by trying to think up reasons for the names of the week. I remember saying (in my head) that Wednesday was the day that lots of weddings happened. It's actually named for Oden/Woden, but I was in grammar school at the time, so I didn't know that. I was probably whispering it under my breath, actually, that's something I did back then. It was a tic--my first vocal tic--but I didn't know that. I thought it was just...just a thing I did. A thing I couldn't stop doing, admittedly, but I just thought that I didn't want to stop. It feels like that, at first. Things that I was thinking, I would narrate out loud in this hissing whisper through my teeth. It sounded like just weird breathing, because I remember my mother asking once why I was breathing so heavily. I just shrugged and claimed I wasn't, because I didn't know how to explain. And I didn't want to tell her, because on some level I felt ashamed that I was doing it. I guess I must have realized that it wasn't normal, on some level. And yet, with her still standing right there--I kept doing it. I tried not to, but I just...I didn't feel quite comfortable until I did it. But I just felt like I wanted to do it. I was young, and the line between compulsion and actual desire wasn't entirely clear to me yet. The mind has a way of believing what makes the most sense to it...and at the time, I couldn't conceive of being compelled to do something. And it seemed so harmless. Why NOT do it? What was the big deal? I didn't know that other people didn't do these things; how would I?
So, that night...I think I knew. Not entirely consciously, I didn't say to myself, 'that's happening to me, too', but I had a feeling about it, a bad feeling. That shame I felt--I knew that the weird little habits I had weren't acceptable behavior, even if I didn't know it consciously. Heck, I don't think I knew the phrase 'acceptable behavior' at the time. But I must have known that it wasn't 'normal', because I never told anyone about these things, and I tried not to let anyone know that I did them. If anyone asked about them, I denied it.
It wasn't the tics themselves that bothered me at that point--I thought they were just habits, you see. And they weren't too obvious to an observer yet. What was bothering me was the...I don't know, the societal implications? Not that I would have put it like that, I didn't even know those words. But I felt ashamed. I never thought/said it to myself, but I guess I must have known that if anyone knew about my weird little habits, the reaction would be negative, people would think it was weird or bad.
And the memory of that night at dinner makes me realize that the feeling I had then--the desire for this not to be happening to me, to not end up like that, the not wanting anyone to know, the wanting it to just go away--on some level, all of that is still there. I may understand things better now, I may have accepted that this is part of who I am, I may feel that I have nothing to be ashamed of--but those feelings still exist.
Maybe I'll never have total acceptance, maybe I'll never be fully at peace with it all. I mean...my body doesn't listen to me. And sometimes, it's scary. I remember my sophomore year of highschool, sitting on the lid of the toilet in the bathroom with the door log, scratching and picking at my arms, and feeling...afraid. Well, as much as I could feel anything at that point, I was in a major depressive episode, that was screwing me up pretty badly as well.
At that point, my mind was so screwed up by the depression that I didn't even think about why I was doing it. It just...the idea just popped into my brain at some point, so I did it. I think it started out from feelings of shame about my appearance--my mother had been trying for years to get me to use various washes and scrubs and all that stuff to clear up my skin, because I had small pores and mild (very mild!) acne--and also because...
It's hard to explain why pain would feel good. But I felt so numb. At least in those moments of pain, I was THERE. I think that was part of it too. And I hated myself so much at that point. I felt like I deserved to suffer, like I should never have been born. I think all of those feelings and thoughts just sort of stewed inside of me until they found an outlet in that tic. Tics feel like that, sometimes--like a release of energy, almost, like there's this TOO MUCH feeling and it's just exploding out, like steam coming out of a kettle when it whistles because the kettle just can't hold it in anymore.
So, at first, I didn't think much about it. I wasn't thinking much about anything. I hid it, of course, I knew that it wasn't socially acceptable. At first I thought it was just self-harm ("just"...but what I mean is, I thought it was self-hard and not connected to anything else), like cutting. And I felt ashamed of that, too, which just exacerbated the problem. I would sit there in my pajamas--it was cold, I think, it must have been autumn or early winter--with the sleeves pulled up, blood on my arms, and bruises where I was picking at them, because of the pressure from my nails, and blood smells awful and the smell made me feel sick, and I was ashamed and I hated myself and I was afraid of anyone finding out and I just--I don't even know.
But after a while, I wanted to stop. I would sit there, looking at the blood on my arms, at these huge scabs that I kept ripping open again, and because I wore a jacket all the time to hide it some of them were getting infected, and I would rip them open again to clean the wounds, and I just...I wanted to stop. It hurt, and I was scared, it's creepy to see all these scabs and blood on your arms. I have lots of scars from insect bits as a kid, I could never resist scratching them, but they were usually small, when they bled it was thin and watery because of that stuff mosquitoes inject when they bite to thin the blood, and when I was little I just put a band-aid on them or held a tissue to them until they stopped bleeding, it was just normal scrapes-and-bruises, kid stuff. Annoying and itchy, but not too painful, and not SCARY.
This was scary.
My arms...even if you saw them now, it's nothing to what it looked like then. The tic is still there, and still a problem, but it's gotten much less severe. There's some scabs and stuff, but it looks like a rash, or a healing case of really mild chicken pox, or something. Weird, but not grotesque. But back then...
Mottled is the only word I can think of to describe it. Not my whole arms--my forearms were fairly clear, my upper arms and shoulders were the worst. not the whole of them, either--just where I scratched and picked. But those places...there were patches that were dark red, the color of a bruise, from all the squeezing and pinching and scratching. And as the bruises started healing, they'd turn that awful yellow-green color, except it was even worse than a normal bruise looks because of the scabs and all...and I'd keep pulling them open, they'd get deeper and deeper. I would sit there in the bathroom, holding a tissue over the open ones to stop the bleeding, and then I'd wrap the tissue up in another tissue so no one would see the blood on them.
I would sit there crying some nights, because I was scared, I mean how could I not be? And I would say to myself 'this has got to stop. I'm going to stop this. I'm not going to do this anymore.'
But I couldn't stop.
Again, I was depressed, I wasn't thinking too deeply about anything, so I didn't think too deeply about WHY I couldn't stop. I just thought I had no willpower, I thought I was pathetic. I mean, I hated myself at that point, of course I just assumed it was my fault.
And it didn't feel like a lot of my other tics--there was so much emotional crap tied up in it, because of course when you hate yourself, and you have a compulsion that causes you bodily harm, you feel like you deserve it. So it took a long time for me to realize what was going on, to sort it all out and untangle the mess.
Even now, when I'm not depressed at all, the tic persists--but much less severely. I've got scabs, but they're small, sort of scattered along my upper arms and shoulders--not patches, not mottled and bruised and smelling like rot because they were covered all the time, like it was before. It really does look--and even feel--like a bad rash.
It's not as frequent anymore, either. When I'm sitting still, in my room--it's almost always in a private space, even if no one else is around it's not a public thing, probably because of the circumstances under which the tic started, that became part of it--studying or whatever. It pops up, I spend maybe twenty minutes on it, then I sort of snap out of it and stop. And I don't have to do as much damage anymore. Back then, I would get stuck on one spot, going at it until it was a bloody mess. Now, I mostly skip around, so each spot gets less damage. Still not exactly healthy, but more like ordinary scrapes and scratches. They heal pretty well, and there are only occasionally really deep ones that scar badly.
I had one of those in...October, was it? October or September. See, I had a spot on my lower arm that I had gone at, and it was still healing, and the scab was a particularly ugly one. Sometimes, when the skin gets sort of scraped off instead of just broken, you get those smooth, light-brown scabs. They're less crusty than other scabs, I've found.
But anyway it was hot out, one of those warm days we had in fall last year, and I was walking with Michelle, and I was wearing a tanktop because of the weather. And of course she noticed it, and she's a nice person and was concerned, so of course she asked me. So I explained about the Tourette's, and how it had good and bad aspects, etc., and she was okay with that.
But unfortunately, if someone mentions a tic--it typically exacerbates the tic. And that spot, once she had mentioned it, I just couldn't leave it alone. Scabs naturally have some fluid under them--if you peel off the scab, it's not just bone-dry underneath, the skin has moisture. There's blood, but in these scrap-ish sorts of scabs, there's sort of clear fluid first, and it starts bleeding slowly at first. I think because it's the first layer of skin that's gone, but I don't really know, this is just what I've observed. Anyway, when I get that sort of scab, if I notice it too much, I get a compulsion to peel off the scab and 'clean' the wound. It's not actually infected--but on some level, my mind thinks it is.
So, once she had mentioned it, I just couldn't stop picking off the scab, and it got deeper and deeper. I put band-aids on it after a while, because I was like 'wow, this is really not healing well, if it's covered I won't be able to see it and I'll stop picking off the scab'. And that worked for a while, but because the skin of the arm stretches and all when you move your arms, the band-aid would come off and stuff, or I would get impatient and peel it off, so it still took a while to heal.
It's a scar now, still a little delicate, but that's rare these days. Man, I tell you, I'm not entirely comfortable with the fact that taking Zoloft has essentially altered my brain chemistry, but I wouldn't go back to those days--back to that depression, that abyss of just...nothingness, that awfulness--for anything. Just...no. No way.
Although it's one of my most troublesome tics, it really has gotten better. Although it still worries me sometimes, and I do have moments where I look at myself in the mirror and go 'I look horrible! my arms/face look horrible!', when I think about how it was back then...I'll take what I've got now. It's much better.
Interestingly, the tic has spread to my legs. It started spreading a bit back then, once my mother discovered the marks all over my arms--it was a concealment thing. I couldn't stop doing it, I physically couldn't--so I just moved it to other areas, wherever wouldn't be as noticeable, as much as I could. But I couldn't move it entirely; I kept going at my arms and face, no matter how obvious it was, no matter how much anyone begged me to stop or shouted at me.
And that's one thing that, to my mind, makes me absolutely certain it wasn't just a form of self-mutilation. I've read about self-harm, and I've read accounts of cutters where they said that they hid their cutting--they would do it on areas of their bodies that weren't easily visible, etc. I couldn't. I tried so hard to stop going at my face, because it was so obvious--but I couldn't stop doing it. I had so little control. I was literally forced, compelled, to do it. Even when I was crying, wishing with all my heart to stop, to have it all just go away, I couldn't stop. That alone tells me that it was more complicated than just me wanting to hurt myself.
On some level, I think it's creepier to be compelled to hurt yourself than to do it by choice. Of course, I'm not a cutter myself, so I don't know it cutting is an entirely voluntary act. I mean, I've just said that I self-harmed and still do, but it's not quite the same. In my case, it's a tic. In the case of an actual cutter...well, I don't know. So, I shouldn't assume.
But at the very least, cutters apparently do have some control about where on their bodies they cut. But then, it seems that cutters have an extremely difficult time stopping. So, maybe they're compelled to do it, too. From what I've read, I guess I've always thought of cutting as sort of an addiction, or something...but my tic isn't that, exactly, either. It's just...it's weird.
But I do find it kind of creepy. And sometimes, it's scary. It's just...it's scary sometimes. There, I've said it, I admit it. I usually try to downplay my tics to the people I know, because I don't want them to worry. I make them seem sort of benign, annoying and occasionally painful, but I try to downplay it. My kids at camp--when they asked why I did funny things with my jaw and chewed a spoon and stuff, I explained to them about my Tourette's, but I didn't mention anything about my scratching tic (well, they were in the 8-12 range, I really couldn't). I made it seem manageable and non-dangerous, because I was their councilor and they had to trust me and feel comfortable with me. Also, I wanted them...well, I wanted to tell them, I guess, that although I had this problem, I was still living my life and happy and able to be responsible and do stuff and all. Because, if any of them meet someone else with Tourette's...I want them to view that person as, well, a person. To treat them like a fellow human being. And I also didn't want to worry them--they were very kind kids, they would have worried if I had told them about the whole thing. So I made it seem like a minor quirk.
Because the truth is, it can seem grotesque, and it can be scary. However much I downplay it, the real truth is...sometimes it scares me that I'm not totally in control of my own body. Sometimes it troubles me. Sometimes it really does get me down, and I feel frustrated and ashamed and futile. And maybe that's obvious to everyone, maybe I suck at hiding these things, I wouldn't be surprised--I'm a terrible liar.
But I try to hide it at least somewhat, because I don't want the people I care about to worry about me. I mean, I admit that it's kind of nice when people worry about me--like if you get hurt and your friends ask how you're doing, it feels good. Because it tells you that they care. But I don't want to frighten them, or anything. And I don't want to be seen as an invalid or something.
Most of the time it really doesn't trouble me too much, and most of the time I'm perfectly comfortable with it. But there are moments were I'm not.
sometimes I think that I've reached the point where I'm okay with this. That's what I meant to say when I started this post. Somehow I've meandered far off topic, and gone on and on...but it felt good to get it out. Cathartic. And I feel like it's important to talk about these things, because I'm not the only one who has experiences like these. I'm not the only one who's sometimes frightened. And the more people speak up and admit that, yes, sometimes it's scary and horrible...well, I think that maybe that will help other people to speak up, and they're help even more people to speak up, until finally no one is facing their struggles all alone. That's what I hope for.
Sometimes I think I've reached the point where I'm okay with this. But it's arrogant to think that. I'm only 19, I've got a long way to go. This is something that, as far as I know, will be with me for the rest of my life. Tourette's sometimes fades, sometimes stays the same, and sometimes grows worse. Mine has grown progressively worse over my life, and I have a feeling it'll probably stick around for the rest of my life.
Sometimes I think I've reached the point where I'm okay with this.
I haven't.
But I'm still trying to.
And now I really have to get some sleep, augh, I meant to go to bed early tonight! Why is it that the nights I have the least work, I stay up the latest...? ^_^;;;;
But the body is usually an unobtrusive part of life, I think; although we see things all the time, we don't think much about just what it is that our eyes are doing so that we may see. It sort of feels like we're inside the body somewhere, 'behind' our eyes so to speak, looking out through a window. Of course it's much more complicated than that, but that's how it FEELS. We only really notice the body when it malfunctions, I think...
Hrm, but talking about my weird issues all the time probably makes me sound like a bit of a complainer...heh. The thing is, though--well, it's like a conversation I had with my brother a ways back. A few months ago, I think. It must have been over winter break, because that's the only time we would have been at home at the same time, having a conversation, because we haven't had any other intersecting vacations recently. ...my, I go through a lot of thinking just to figure out when I last spoke to my brother...oh well. But anyway.
I was talking about Tourette's with him. Well, to him really, because my brother has a tendency to glaze over and watch his movies or IM his girlfriend while I'm talking to him, even if HE is the one who initiates a conversation. He has low conversational skills and attention issues. But anyway, I like to talk to him about these things, because he has it too, so I feel like if anyone will understand these things, he will. And we sometimes sort of commiserate about shared issues--I remember one time when we were home at the same time we went out to the mall together, and he mentioned how he had injured his shoulder recently from ticcing, and the summer before I had injured my back through ticcing, so we were discussing strategies to deal with it, reduce further damage, just commiserating together like that. It's comforting, to know you're not alone.
So anyway I was talking to him (well, at him I suppose, -__-;;;;) about it, and he ended up saying that he wanted me to shut up and go away, basically. That's really not all that unusual for a conversation with my brother, actually. But anyway he said that he didn't like thinking about Tourette's and his other various disorders too much. That that was how he coped, basically.
Now, for me, it's just the opposite. The way I've coped, the way I DEAL with all this, is by knowing as much as possible about it. In order for me to deal with my issues, I need to know them intimately, to know MYSELF, so that I know, for example, how I'll react to particular stimuli, how I can minimize or conceal tics if possible, what sort of things are triggers, what are warning signs of particularly bad episodes, etc. That's how I keep it together. And thinking/writing/talking about it all helps. It helps on an emotional level, for one thing, and it helps on an intellectual level as well, because I've noticed that when I write about things, I realize things that I never did before. I get new ideas through writing.
So, anyway...I'm rereading The Man Who Mistook His Wife for a Hat, which is a fantastic book by Oliver Sacks (I love his work, I just finished reading Musicophilia and lent it to my friend Tika). It's a book of neurological case studies, basically, and it got my thinking about my own situation. Well, I guess most people view things through the lens of their own experience, so maybe that's not quite as egotistical as it sounds. It gives me a bit of a guilt complex, though...to anyone who reads this, please feel free to stop reading and ignore me if you so desire! *bows* I apologize for my self-obsessed rantings...*is ashamed*
But anyway. What I was thinking about was...well, to start, I was reading the chapter called "The Disembodied Lady", which is about a woman who loses her propreoception (the sense of our own bodies, that makes you realize that your body is YOURS, allows you to touch your nose with your eyes closed, that sort of thing--the body's sense of itself, kind of. It's hard to explain...the book explains it really well, but I can't really...^_^;;;), and thus feels utterly disembodied, like her body isn't HERS anymore.
And I was thinking about how I sort of feel, sometimes, like my body isn't entirely mine. Not in the sense that I feel disembodied, and can't tell where my body is and whatnot--physically, I'm fully aware that my body is mine, I know where my limbs are even without seeing them, etc. But sometimes, I feel like on some level my body is sort of co-owned, like a timeshare or something.
It's the tics. Sometimes, it feels like...hrm, this is hard to explain. See, although tics are semi-voluntary--they aren't just random tremors, I actively DO these things, my brain is sending commands to my muscles--they also AREN'T voluntary. That is, it's my brain that's controlling my body, but it feels like I'm not the one controlling my brain. Something else is sending the orders, and I can't disobey, no matter how hard I try. So, in that sense, it sort of feels like my body isn't entirely mine.
And I was thinking that I was sort of resigned to that, kind of at peace with it. Which is somewhat true--I don't feel like my tics are imposed on me or something, they're just...part of me. A part of me I don't consciously control, but me all the same.
But then it occurred to me that, however much I may believe that on an intellectual level, however much I think that's how I feel--there's a part of me that doesn't feel that way at all. On some level, there really is some resentment or anger or whatever, that my body doesn't listen to me. Because on some level, there's just that instinctive feeling that it SHOULD listen to you, that your body isn't supposed to just jerk and twitch and move without your consent. That if you decide to walk forward, your body is supposed to walk forward, not decide to do something else.
The feeling of being controlled, of being coerced into these strange actions--there is a part of me that rebells against that. I can't deny that. I'd like to believe that I've reached a truce with my Tourette's, that we sort of accept each other's existence--but that would be a lie. It's sort-of true--I'm somewhat at peace with my Tourette's. I accept that this is just a part of me, that it has good and bad aspects, etc., and I've learned to deal with it. I've learned to deal with a lot of the feelings of shame, too. I remember when my brother's tics first started to become really noticeable--the first one I can really remember was that he used to jiggle his leg up and down when he was sitting on the couch or at the table. It would make the whole couch shake, and my mother (they usually sat on the couch if we were all watching TV together, I sat on the loveseat, Dad sat in his armchair) would tell him to stop it, because he was shaking the couch, which of course was quite annoying.
Back then, none of us knew about Tourette's, so of course my mother must have assumed that it was a habit, or something that he was just unconsciously doing but could stop doing, like biting your nails or something. My brother did that, too, I remember...my parents tried all kinds of things to get him to stop, like that nailpolish that tastes nasty that they make for nailbiters, but nothing worked. And no wonder--looking back, I know now that it was a tic, and I know that he COULDN'T stop. And it must have been terrible for him, too--he didn't know why his body was doing these things either. And at first they FEEL like habits, you feel like you could stop doing it probably, if you really tried--you don't realize that you can't stop until it's something you don't want to do, and you can't stop it, and it's just...it's not pleasant.
And I remember sitting there on the loveseat, and listening/watching while my mother told Matt for the millionth time to stop shaking his leg--at this point I think she realized something was wrong, but still thought it was a weird habit or something, because she thought that if he was made aware that he was doing this, he would be able to stop, which is a reasonable assumption, it's just that it's not true--and I felt so afraid, and ashamed. Or maybe nervous would be a better word, sort of nervous and fearful/apprehensive.
I'm not really sure why, exactly--my memory of past events is hazy. This one does stick out, though. I'm not even sure how old I was. I must've been in at least third grade, because I think I had glasses at that point. Not really sure, though. ...wow, I really am not sure at all. No I must've been older than that...hmm, don't know. But anyway I was in middle school, somewhere between third and sixth grade.
And I was thinking to myself--this is a hazy, paraphrasing recollection, I do not remember exactly what I was thinking, like I said my memory sucks--that I was glad that wasn't ME, that I was glad it wasn't happening to me. But I was afraid that it would be me, I think. Looking back now, I had tics long before I knew that I did. Simple ones, just things like 'evening up'--like when I was sitting in the car, I'd clench the muscles on my right side in a certain order, then the same order on the left. stuff like that. I thought it was just a way to pass the time on car trips. But, I couldn't stop once I started. And if I did it in the wrong order, it would feel 'wrong' somehow, and I would have to do it again in the 'right' order. I remember trying to change the order a couple of times, and not being able to. And I remember sometimes being torn between two orders--one would seem more symmetrical, more 'right' intellectually, but another would feel more 'right' physically...I had no idea back then, I was like eight or nine. I thought it was just a habit. I thought it was just a game. Just something I did because I was bored. It was totally situation-specific.
Once I got glasses, there were more. I kept pushing them up my nose. They would slip down a bit, and I would do it. I thought it was just a habit, just to make them fit more comfortably. But my brother got tics with his glasses, too.
And that night, listening to my mother try to help my brother stop shaking his leg--because she really was trying to HELP him, it's just that that was the wrong way to do it--although I can't remember exactly what I was thinking, I remember looking down at my plate (we were eating dinner at the time. Yes, in the family room, on the couch. ^_^;;;), and keeping quiet. Not that I had anything to say, but I just remember that feeling of trying to be invisible, not wanting anyone to notice me. Not wanting to have that happen to me.
I think it was mostly because I didn't want my mother to scold me about it, like she did with Matt. Well, it wasn't scolding, exactly, but it was annoying. She was trying her best to help, but it was annoying, I'll admit. And to my child's mind, it had now been clearly marked as 'bad', as an incorrect behavior.
I don't know why I was so ashamed and fearful, really, but...I think I must have known, on some level, that I did those things too. That I moved and twitched and things. I can sort of remember telling myself that that wouldn't happen to ME, that I wasn't going to do those things, get those bad habits.
My brother had a lot of other issues too at this point, because of his undiagnosed learning disabilities, so I'm sure that contributed too. I remember listening to my parents shout at him, sitting in my room with the door closed, trying to block it out. To not listen. I have this one specific little snippet of memory, of sitting on the floor by my closed door, listening to them shouting at him but also not wanting to listen. I was distracting myself by trying to think up reasons for the names of the week. I remember saying (in my head) that Wednesday was the day that lots of weddings happened. It's actually named for Oden/Woden, but I was in grammar school at the time, so I didn't know that. I was probably whispering it under my breath, actually, that's something I did back then. It was a tic--my first vocal tic--but I didn't know that. I thought it was just...just a thing I did. A thing I couldn't stop doing, admittedly, but I just thought that I didn't want to stop. It feels like that, at first. Things that I was thinking, I would narrate out loud in this hissing whisper through my teeth. It sounded like just weird breathing, because I remember my mother asking once why I was breathing so heavily. I just shrugged and claimed I wasn't, because I didn't know how to explain. And I didn't want to tell her, because on some level I felt ashamed that I was doing it. I guess I must have realized that it wasn't normal, on some level. And yet, with her still standing right there--I kept doing it. I tried not to, but I just...I didn't feel quite comfortable until I did it. But I just felt like I wanted to do it. I was young, and the line between compulsion and actual desire wasn't entirely clear to me yet. The mind has a way of believing what makes the most sense to it...and at the time, I couldn't conceive of being compelled to do something. And it seemed so harmless. Why NOT do it? What was the big deal? I didn't know that other people didn't do these things; how would I?
So, that night...I think I knew. Not entirely consciously, I didn't say to myself, 'that's happening to me, too', but I had a feeling about it, a bad feeling. That shame I felt--I knew that the weird little habits I had weren't acceptable behavior, even if I didn't know it consciously. Heck, I don't think I knew the phrase 'acceptable behavior' at the time. But I must have known that it wasn't 'normal', because I never told anyone about these things, and I tried not to let anyone know that I did them. If anyone asked about them, I denied it.
It wasn't the tics themselves that bothered me at that point--I thought they were just habits, you see. And they weren't too obvious to an observer yet. What was bothering me was the...I don't know, the societal implications? Not that I would have put it like that, I didn't even know those words. But I felt ashamed. I never thought/said it to myself, but I guess I must have known that if anyone knew about my weird little habits, the reaction would be negative, people would think it was weird or bad.
And the memory of that night at dinner makes me realize that the feeling I had then--the desire for this not to be happening to me, to not end up like that, the not wanting anyone to know, the wanting it to just go away--on some level, all of that is still there. I may understand things better now, I may have accepted that this is part of who I am, I may feel that I have nothing to be ashamed of--but those feelings still exist.
Maybe I'll never have total acceptance, maybe I'll never be fully at peace with it all. I mean...my body doesn't listen to me. And sometimes, it's scary. I remember my sophomore year of highschool, sitting on the lid of the toilet in the bathroom with the door log, scratching and picking at my arms, and feeling...afraid. Well, as much as I could feel anything at that point, I was in a major depressive episode, that was screwing me up pretty badly as well.
At that point, my mind was so screwed up by the depression that I didn't even think about why I was doing it. It just...the idea just popped into my brain at some point, so I did it. I think it started out from feelings of shame about my appearance--my mother had been trying for years to get me to use various washes and scrubs and all that stuff to clear up my skin, because I had small pores and mild (very mild!) acne--and also because...
It's hard to explain why pain would feel good. But I felt so numb. At least in those moments of pain, I was THERE. I think that was part of it too. And I hated myself so much at that point. I felt like I deserved to suffer, like I should never have been born. I think all of those feelings and thoughts just sort of stewed inside of me until they found an outlet in that tic. Tics feel like that, sometimes--like a release of energy, almost, like there's this TOO MUCH feeling and it's just exploding out, like steam coming out of a kettle when it whistles because the kettle just can't hold it in anymore.
So, at first, I didn't think much about it. I wasn't thinking much about anything. I hid it, of course, I knew that it wasn't socially acceptable. At first I thought it was just self-harm ("just"...but what I mean is, I thought it was self-hard and not connected to anything else), like cutting. And I felt ashamed of that, too, which just exacerbated the problem. I would sit there in my pajamas--it was cold, I think, it must have been autumn or early winter--with the sleeves pulled up, blood on my arms, and bruises where I was picking at them, because of the pressure from my nails, and blood smells awful and the smell made me feel sick, and I was ashamed and I hated myself and I was afraid of anyone finding out and I just--I don't even know.
But after a while, I wanted to stop. I would sit there, looking at the blood on my arms, at these huge scabs that I kept ripping open again, and because I wore a jacket all the time to hide it some of them were getting infected, and I would rip them open again to clean the wounds, and I just...I wanted to stop. It hurt, and I was scared, it's creepy to see all these scabs and blood on your arms. I have lots of scars from insect bits as a kid, I could never resist scratching them, but they were usually small, when they bled it was thin and watery because of that stuff mosquitoes inject when they bite to thin the blood, and when I was little I just put a band-aid on them or held a tissue to them until they stopped bleeding, it was just normal scrapes-and-bruises, kid stuff. Annoying and itchy, but not too painful, and not SCARY.
This was scary.
My arms...even if you saw them now, it's nothing to what it looked like then. The tic is still there, and still a problem, but it's gotten much less severe. There's some scabs and stuff, but it looks like a rash, or a healing case of really mild chicken pox, or something. Weird, but not grotesque. But back then...
Mottled is the only word I can think of to describe it. Not my whole arms--my forearms were fairly clear, my upper arms and shoulders were the worst. not the whole of them, either--just where I scratched and picked. But those places...there were patches that were dark red, the color of a bruise, from all the squeezing and pinching and scratching. And as the bruises started healing, they'd turn that awful yellow-green color, except it was even worse than a normal bruise looks because of the scabs and all...and I'd keep pulling them open, they'd get deeper and deeper. I would sit there in the bathroom, holding a tissue over the open ones to stop the bleeding, and then I'd wrap the tissue up in another tissue so no one would see the blood on them.
I would sit there crying some nights, because I was scared, I mean how could I not be? And I would say to myself 'this has got to stop. I'm going to stop this. I'm not going to do this anymore.'
But I couldn't stop.
Again, I was depressed, I wasn't thinking too deeply about anything, so I didn't think too deeply about WHY I couldn't stop. I just thought I had no willpower, I thought I was pathetic. I mean, I hated myself at that point, of course I just assumed it was my fault.
And it didn't feel like a lot of my other tics--there was so much emotional crap tied up in it, because of course when you hate yourself, and you have a compulsion that causes you bodily harm, you feel like you deserve it. So it took a long time for me to realize what was going on, to sort it all out and untangle the mess.
Even now, when I'm not depressed at all, the tic persists--but much less severely. I've got scabs, but they're small, sort of scattered along my upper arms and shoulders--not patches, not mottled and bruised and smelling like rot because they were covered all the time, like it was before. It really does look--and even feel--like a bad rash.
It's not as frequent anymore, either. When I'm sitting still, in my room--it's almost always in a private space, even if no one else is around it's not a public thing, probably because of the circumstances under which the tic started, that became part of it--studying or whatever. It pops up, I spend maybe twenty minutes on it, then I sort of snap out of it and stop. And I don't have to do as much damage anymore. Back then, I would get stuck on one spot, going at it until it was a bloody mess. Now, I mostly skip around, so each spot gets less damage. Still not exactly healthy, but more like ordinary scrapes and scratches. They heal pretty well, and there are only occasionally really deep ones that scar badly.
I had one of those in...October, was it? October or September. See, I had a spot on my lower arm that I had gone at, and it was still healing, and the scab was a particularly ugly one. Sometimes, when the skin gets sort of scraped off instead of just broken, you get those smooth, light-brown scabs. They're less crusty than other scabs, I've found.
But anyway it was hot out, one of those warm days we had in fall last year, and I was walking with Michelle, and I was wearing a tanktop because of the weather. And of course she noticed it, and she's a nice person and was concerned, so of course she asked me. So I explained about the Tourette's, and how it had good and bad aspects, etc., and she was okay with that.
But unfortunately, if someone mentions a tic--it typically exacerbates the tic. And that spot, once she had mentioned it, I just couldn't leave it alone. Scabs naturally have some fluid under them--if you peel off the scab, it's not just bone-dry underneath, the skin has moisture. There's blood, but in these scrap-ish sorts of scabs, there's sort of clear fluid first, and it starts bleeding slowly at first. I think because it's the first layer of skin that's gone, but I don't really know, this is just what I've observed. Anyway, when I get that sort of scab, if I notice it too much, I get a compulsion to peel off the scab and 'clean' the wound. It's not actually infected--but on some level, my mind thinks it is.
So, once she had mentioned it, I just couldn't stop picking off the scab, and it got deeper and deeper. I put band-aids on it after a while, because I was like 'wow, this is really not healing well, if it's covered I won't be able to see it and I'll stop picking off the scab'. And that worked for a while, but because the skin of the arm stretches and all when you move your arms, the band-aid would come off and stuff, or I would get impatient and peel it off, so it still took a while to heal.
It's a scar now, still a little delicate, but that's rare these days. Man, I tell you, I'm not entirely comfortable with the fact that taking Zoloft has essentially altered my brain chemistry, but I wouldn't go back to those days--back to that depression, that abyss of just...nothingness, that awfulness--for anything. Just...no. No way.
Although it's one of my most troublesome tics, it really has gotten better. Although it still worries me sometimes, and I do have moments where I look at myself in the mirror and go 'I look horrible! my arms/face look horrible!', when I think about how it was back then...I'll take what I've got now. It's much better.
Interestingly, the tic has spread to my legs. It started spreading a bit back then, once my mother discovered the marks all over my arms--it was a concealment thing. I couldn't stop doing it, I physically couldn't--so I just moved it to other areas, wherever wouldn't be as noticeable, as much as I could. But I couldn't move it entirely; I kept going at my arms and face, no matter how obvious it was, no matter how much anyone begged me to stop or shouted at me.
And that's one thing that, to my mind, makes me absolutely certain it wasn't just a form of self-mutilation. I've read about self-harm, and I've read accounts of cutters where they said that they hid their cutting--they would do it on areas of their bodies that weren't easily visible, etc. I couldn't. I tried so hard to stop going at my face, because it was so obvious--but I couldn't stop doing it. I had so little control. I was literally forced, compelled, to do it. Even when I was crying, wishing with all my heart to stop, to have it all just go away, I couldn't stop. That alone tells me that it was more complicated than just me wanting to hurt myself.
On some level, I think it's creepier to be compelled to hurt yourself than to do it by choice. Of course, I'm not a cutter myself, so I don't know it cutting is an entirely voluntary act. I mean, I've just said that I self-harmed and still do, but it's not quite the same. In my case, it's a tic. In the case of an actual cutter...well, I don't know. So, I shouldn't assume.
But at the very least, cutters apparently do have some control about where on their bodies they cut. But then, it seems that cutters have an extremely difficult time stopping. So, maybe they're compelled to do it, too. From what I've read, I guess I've always thought of cutting as sort of an addiction, or something...but my tic isn't that, exactly, either. It's just...it's weird.
But I do find it kind of creepy. And sometimes, it's scary. It's just...it's scary sometimes. There, I've said it, I admit it. I usually try to downplay my tics to the people I know, because I don't want them to worry. I make them seem sort of benign, annoying and occasionally painful, but I try to downplay it. My kids at camp--when they asked why I did funny things with my jaw and chewed a spoon and stuff, I explained to them about my Tourette's, but I didn't mention anything about my scratching tic (well, they were in the 8-12 range, I really couldn't). I made it seem manageable and non-dangerous, because I was their councilor and they had to trust me and feel comfortable with me. Also, I wanted them...well, I wanted to tell them, I guess, that although I had this problem, I was still living my life and happy and able to be responsible and do stuff and all. Because, if any of them meet someone else with Tourette's...I want them to view that person as, well, a person. To treat them like a fellow human being. And I also didn't want to worry them--they were very kind kids, they would have worried if I had told them about the whole thing. So I made it seem like a minor quirk.
Because the truth is, it can seem grotesque, and it can be scary. However much I downplay it, the real truth is...sometimes it scares me that I'm not totally in control of my own body. Sometimes it troubles me. Sometimes it really does get me down, and I feel frustrated and ashamed and futile. And maybe that's obvious to everyone, maybe I suck at hiding these things, I wouldn't be surprised--I'm a terrible liar.
But I try to hide it at least somewhat, because I don't want the people I care about to worry about me. I mean, I admit that it's kind of nice when people worry about me--like if you get hurt and your friends ask how you're doing, it feels good. Because it tells you that they care. But I don't want to frighten them, or anything. And I don't want to be seen as an invalid or something.
Most of the time it really doesn't trouble me too much, and most of the time I'm perfectly comfortable with it. But there are moments were I'm not.
sometimes I think that I've reached the point where I'm okay with this. That's what I meant to say when I started this post. Somehow I've meandered far off topic, and gone on and on...but it felt good to get it out. Cathartic. And I feel like it's important to talk about these things, because I'm not the only one who has experiences like these. I'm not the only one who's sometimes frightened. And the more people speak up and admit that, yes, sometimes it's scary and horrible...well, I think that maybe that will help other people to speak up, and they're help even more people to speak up, until finally no one is facing their struggles all alone. That's what I hope for.
Sometimes I think I've reached the point where I'm okay with this. But it's arrogant to think that. I'm only 19, I've got a long way to go. This is something that, as far as I know, will be with me for the rest of my life. Tourette's sometimes fades, sometimes stays the same, and sometimes grows worse. Mine has grown progressively worse over my life, and I have a feeling it'll probably stick around for the rest of my life.
Sometimes I think I've reached the point where I'm okay with this.
I haven't.
But I'm still trying to.
And now I really have to get some sleep, augh, I meant to go to bed early tonight! Why is it that the nights I have the least work, I stay up the latest...? ^_^;;;;