Edit: This post was written a few months ago, but I hadn't got around to posting it.
Ok, I have no idea why I'm writing this, but I need something to do whilst my MacBook copies my old 250GB hard drive to my new 640GB hard drive, so it seemed like something to keep me busy. This is more of a personal story / rant about Tourette's Syndrome, and as I don't talk about my personal life much on here, you may find it a different style to what I usually use. Ok, are we all sitting comfortably? Then I'll begin.
I'm in agony at the moment, knife-stabbing, gut-wrenching agony. My neck is tense; it hurts to move it even an inch, and I can't stop the pain. I've tried some ice-cold spray that is meant to ease muscle pain, but it doesn't work. I've tried rubbing Ibuprofen Gel into it - repeatedly - to no noticeable affect. To make matters worse, my brain, usually the most rational of items I have a claim to, is ordering my neck to move violently from side to side, twisting the already tightened muscles, causing even more pain. In short, I suffer from a neurological disorder known by the medical community as "Tourette's syndrome", and by the grossly misinformed public as "Hey look at that guy, he's shouting out swearwords...LMAO".
I've pretty much always had Tourette's, but I've only been able to call it Tourette's for the last 10 years or so. When I was 3, I started coughing, without reason, repeatedly. There wasn't anything stuck in my throat, I would just cough. Sometimes I'd be coughing regularly for weeks, and then suddenly have a brief period of silence. It made no sense. My parents were obviously concerned, and a doctor diagnosed me (falsely) with asthma. Of course, the inhaler just made me cough worse when I had to breathe in whatever they put in it, but a diagnosis is a diagnosis, right?
Later, some clever doctor worked out that I didn't have asthma after all! Huzzah! Unfortunately, that was the limit of his medical ability, and his knew solution was to take the lazy way out. "Why", he said to my mother, "young Adrian just has a bad habit". So, now instead of inhalers, I had punishments. The only way to get rid of habits is to make the child realize what they are doing is...*gasp*...naughty. So, I'd find myself denied treats because I was overheard coughing for no reason. My mother would hear me coughing in front of the TV and send me to sit on the stairs. "If you don't cough for 5 minutes, you can come back and watch TV" she'd say. Of course, none of this was her fault, and I forgive her entirely for her actions; she was taking the advice of bone-headed doctors. How was a child to explain to his mother that he honestly couldn't help coughing? When you are growing up, you have the opinion that how you experience is how other people experience, so you have no basis for what is "normal". In my eyes, my cough was normal for me, but if my mother was saying it was wrong, then I must be doing something wrong.
A few years later (when I was 7 I believe) I developed a new "tic"; head-twitching. For no apparent reason, I'd shake my head to one side, repeatedly. My mother noticed and questioned me about it. Afraid to admit to not being able to control it (in fear of it being labelled another "habit"), the young genius that I was came up with an elegant solution: "My hair gets in my eyes and I don't like it, so I have to shake it out of the way". How clever I was, to have come up with such a perfect solution! Don't blame me, blame the hair!
So my mother did, and took me to the hairdressers. A few snips here and there, and I had a short fringe, with absolutely no way of my hair getting in the way. I step out of the hairdressers...and...*shake* *shake*...I'm off again. My mother scolds me; "There isn't any hair to get in the way! Stop it!". I had nothing to say; I couldn't explain it. I didn't want to shake my head, but I could feel the motion coming on, and I couldn't stop it. I'd literally lost control of parts of my body.
A year later and I develop a new tic, what my mother calls an "exaggerated swallow". My throat contorts, as if about the swallow, but instead does something...well...weird. I'm not even quite sure how to describe it myself. I've just done one as well, whilst I was in the middle of writing this. You see, that is the bizarre thing about Tourette's (or at least, my Tourette's); you start talking about your tics and you have a compulsion to do them. I could quite easily write my life history here and by the time I was done, I'd have physically done all the tics I've ever had. But I digress; back to the story. Another year, another doctor. This one was concerned about the exaggerated swallow, so concerned that he felt it was a good idea to shove a camera down my throat to have a look.
I don't know if anyone here has had the unfortunate medical procedure of having a camera put down one's throat, but it starts badly and ends badly. First, they spray some disgusting liquid up your nose in order to clear the airway. This travels all the way up and then back down into your mouth, and it was foul. Once that is over (and as an 8 year old, I have no idea what is happening at this point), the guy takes a long thing tube, and starts feeding it up my nose. It hurts, it's annoying, and they've turned the TV monitor towards me so I can see everything as well. Naturally, I'm panicking and crying. As I watch my vocal chords move rapidly to the sound of my crying, the doctor gets me to do one of my swallows. His analysis? Nothing out of the ordinary at all. So, back to the "habit" theory for now.
Finally, after years of being ignored and told everything is my fault, a breakthrough. My mother, now determined to get some kind of answer, takes me to a private clinic. I spend an hour with the doctor there (a lady this time!), talking about what I feel like, and showing her my tics. At the end of the appointment, she turns to my mother and tells her (quite matter-of-factly) that "Your son has Tourette's syndrome".
Of course, whilst knowing what I had was a relief, the worst was yet to come. Tourette's syndrome is exacerbated by puberty, and that was right around the corner. So an onslaught of new tics came, one by one. I'd have more movements with my neck, I'd excessively blink, and (perhaps the worst of all) my tongue would repeatedly flick itself against the side of my mouth. If you want to try an experiment, try flicking your tongue over your bottom set of molars every few seconds or so. Do it until it really starts to hurt. Ok, you can stop now. Imagine that, but instead of being able to stop, you *had* to continue. Your brain was telling your tongue to cut itself to shreds in your own mouth. I would reach the point where I had to wear a mouthguard on my lower teeth to stop the pain. Of course, that didn't stop the tongue flicking, and eventually the mouthguard would wear through completely. I went through three of them in a couple of years.
I'd had enough; I wanted some way out of the pain. My mother took me to the local hospital, and I was prescribed Haloperidol, an antipsychotic drug used to suppress the brain's orders to my muscles. The only problem was, the doctor prescribing it didn't get to dosage correct. He gave me 5 times the recommended dosage for a child, and as a result, I lost control of some of my muscles completely. At school, my jaw suddenly locked up, and I was sent home. That evening, my limbs went out of control; my legs wouldn't support me, and my arm had a tendency to lift up above my head. That was the last time I used the drug (or any drug for that matter) to control my Tourette's.
So life continued, I went through puberty, and emerged relatively unscathed. My mother became an activist for Tourette's syndrome, holding lectures at schools about the reality of Tourette's, and how barely 20% of sufferers actually swear, or how it affects 1 in 100 school children. Later, she would become the chair of the Tourette's Syndrome Association (UK) and run various marathons for the charity. I developed verbal tics (squeaking noises mostly), which meant I had to sit my exams in a separate room so as not to annoy my classmates. I've sat my exams in a separate room every single time I've had to take one, even up through University, and in all probability, that will continue for the foreseeable future.
...and that's my story...so far.
Ok, I have no idea why I'm writing this, but I need something to do whilst my MacBook copies my old 250GB hard drive to my new 640GB hard drive, so it seemed like something to keep me busy. This is more of a personal story / rant about Tourette's Syndrome, and as I don't talk about my personal life much on here, you may find it a different style to what I usually use. Ok, are we all sitting comfortably? Then I'll begin.
I'm in agony at the moment, knife-stabbing, gut-wrenching agony. My neck is tense; it hurts to move it even an inch, and I can't stop the pain. I've tried some ice-cold spray that is meant to ease muscle pain, but it doesn't work. I've tried rubbing Ibuprofen Gel into it - repeatedly - to no noticeable affect. To make matters worse, my brain, usually the most rational of items I have a claim to, is ordering my neck to move violently from side to side, twisting the already tightened muscles, causing even more pain. In short, I suffer from a neurological disorder known by the medical community as "Tourette's syndrome", and by the grossly misinformed public as "Hey look at that guy, he's shouting out swearwords...LMAO".
I've pretty much always had Tourette's, but I've only been able to call it Tourette's for the last 10 years or so. When I was 3, I started coughing, without reason, repeatedly. There wasn't anything stuck in my throat, I would just cough. Sometimes I'd be coughing regularly for weeks, and then suddenly have a brief period of silence. It made no sense. My parents were obviously concerned, and a doctor diagnosed me (falsely) with asthma. Of course, the inhaler just made me cough worse when I had to breathe in whatever they put in it, but a diagnosis is a diagnosis, right?
Later, some clever doctor worked out that I didn't have asthma after all! Huzzah! Unfortunately, that was the limit of his medical ability, and his knew solution was to take the lazy way out. "Why", he said to my mother, "young Adrian just has a bad habit". So, now instead of inhalers, I had punishments. The only way to get rid of habits is to make the child realize what they are doing is...*gasp*...naughty. So, I'd find myself denied treats because I was overheard coughing for no reason. My mother would hear me coughing in front of the TV and send me to sit on the stairs. "If you don't cough for 5 minutes, you can come back and watch TV" she'd say. Of course, none of this was her fault, and I forgive her entirely for her actions; she was taking the advice of bone-headed doctors. How was a child to explain to his mother that he honestly couldn't help coughing? When you are growing up, you have the opinion that how you experience is how other people experience, so you have no basis for what is "normal". In my eyes, my cough was normal for me, but if my mother was saying it was wrong, then I must be doing something wrong.
A few years later (when I was 7 I believe) I developed a new "tic"; head-twitching. For no apparent reason, I'd shake my head to one side, repeatedly. My mother noticed and questioned me about it. Afraid to admit to not being able to control it (in fear of it being labelled another "habit"), the young genius that I was came up with an elegant solution: "My hair gets in my eyes and I don't like it, so I have to shake it out of the way". How clever I was, to have come up with such a perfect solution! Don't blame me, blame the hair!
So my mother did, and took me to the hairdressers. A few snips here and there, and I had a short fringe, with absolutely no way of my hair getting in the way. I step out of the hairdressers...and...*shake* *shake*...I'm off again. My mother scolds me; "There isn't any hair to get in the way! Stop it!". I had nothing to say; I couldn't explain it. I didn't want to shake my head, but I could feel the motion coming on, and I couldn't stop it. I'd literally lost control of parts of my body.
A year later and I develop a new tic, what my mother calls an "exaggerated swallow". My throat contorts, as if about the swallow, but instead does something...well...weird. I'm not even quite sure how to describe it myself. I've just done one as well, whilst I was in the middle of writing this. You see, that is the bizarre thing about Tourette's (or at least, my Tourette's); you start talking about your tics and you have a compulsion to do them. I could quite easily write my life history here and by the time I was done, I'd have physically done all the tics I've ever had. But I digress; back to the story. Another year, another doctor. This one was concerned about the exaggerated swallow, so concerned that he felt it was a good idea to shove a camera down my throat to have a look.
I don't know if anyone here has had the unfortunate medical procedure of having a camera put down one's throat, but it starts badly and ends badly. First, they spray some disgusting liquid up your nose in order to clear the airway. This travels all the way up and then back down into your mouth, and it was foul. Once that is over (and as an 8 year old, I have no idea what is happening at this point), the guy takes a long thing tube, and starts feeding it up my nose. It hurts, it's annoying, and they've turned the TV monitor towards me so I can see everything as well. Naturally, I'm panicking and crying. As I watch my vocal chords move rapidly to the sound of my crying, the doctor gets me to do one of my swallows. His analysis? Nothing out of the ordinary at all. So, back to the "habit" theory for now.
Finally, after years of being ignored and told everything is my fault, a breakthrough. My mother, now determined to get some kind of answer, takes me to a private clinic. I spend an hour with the doctor there (a lady this time!), talking about what I feel like, and showing her my tics. At the end of the appointment, she turns to my mother and tells her (quite matter-of-factly) that "Your son has Tourette's syndrome".
Of course, whilst knowing what I had was a relief, the worst was yet to come. Tourette's syndrome is exacerbated by puberty, and that was right around the corner. So an onslaught of new tics came, one by one. I'd have more movements with my neck, I'd excessively blink, and (perhaps the worst of all) my tongue would repeatedly flick itself against the side of my mouth. If you want to try an experiment, try flicking your tongue over your bottom set of molars every few seconds or so. Do it until it really starts to hurt. Ok, you can stop now. Imagine that, but instead of being able to stop, you *had* to continue. Your brain was telling your tongue to cut itself to shreds in your own mouth. I would reach the point where I had to wear a mouthguard on my lower teeth to stop the pain. Of course, that didn't stop the tongue flicking, and eventually the mouthguard would wear through completely. I went through three of them in a couple of years.
I'd had enough; I wanted some way out of the pain. My mother took me to the local hospital, and I was prescribed Haloperidol, an antipsychotic drug used to suppress the brain's orders to my muscles. The only problem was, the doctor prescribing it didn't get to dosage correct. He gave me 5 times the recommended dosage for a child, and as a result, I lost control of some of my muscles completely. At school, my jaw suddenly locked up, and I was sent home. That evening, my limbs went out of control; my legs wouldn't support me, and my arm had a tendency to lift up above my head. That was the last time I used the drug (or any drug for that matter) to control my Tourette's.
So life continued, I went through puberty, and emerged relatively unscathed. My mother became an activist for Tourette's syndrome, holding lectures at schools about the reality of Tourette's, and how barely 20% of sufferers actually swear, or how it affects 1 in 100 school children. Later, she would become the chair of the Tourette's Syndrome Association (UK) and run various marathons for the charity. I developed verbal tics (squeaking noises mostly), which meant I had to sit my exams in a separate room so as not to annoy my classmates. I've sat my exams in a separate room every single time I've had to take one, even up through University, and in all probability, that will continue for the foreseeable future.
...and that's my story...so far.
