Tourette’s Is Stopping Me Walking

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After a couple shots of tequila, it’s normal to have a bit of difficultly walking. You might sway a little. Maybe straight lines are difficult. Or else, you might bump into something because your drunken brain has decided to be an inattentive buffoon.

The other week, though, I got the impression that my trouble walking had something less to do with tequila and something more to do with Tourette’s. I was walking to the bus stop after work, and every other step, my right knee kept buckling. Taking an Uber felt like giving up, and so I just carried on walking in my new weird way, tripping, stumbling, and stopping altogether every other step. At one point, I decided that if I couldn’t walk, maybe I could run. But I couldn’t. My legs just wouldn’t let me. On the bus, I stubbornly took my shaky legs up to the top deck, and when I alighted, my usual ten-minute walk home took me twice that.

Up until then, my Tourette’s didn’t seem to realise that my legs existed. My motor tics mainly manifested in my head, shoulders, arms, and torso. Below that, I was tic-free. But unfortunately, in the weeks that followed, the tics in my legs got worse and I found myself walking in increasingly bizarre ways. Sometimes, my legs would kick out in a way that apparently looked like a scene from Monty Python. Other times, I would kick walls, fridges and cupboards, the muscles in my calf would tense of their own accord, and at the end of the day, my legs would ache from the strain.

Tourette’s feels like many things, but in instances like this, it really does feel like you’re a puppet being controlled by a malicious five-year-old child. The child wants to embarrass you, make people stare at you, make you do things you really don’t want to do, and cause you harm. It’s frustrating. Frustrating not only because one week you can walk just fine and the next you can’t, but also because this facet of Tourette’s isn’t well known at all. Many tics are really funny. But when you can’t walk, it’s kind of hard to find the humour.

What Makes Me Tic and What Makes Me Tick?

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In no particular order, the following is what makes me tic:

  1. Squeamishness
    I had to have a blood test the other week, and my tics were out of control. As soon as the nurse made to take my blood, I pushed him away and shouted. Eventually, another nurse had to pin me down because I couldn’t stop squirming, and during the entire appointment, I let out my entire repertoire of vocal tics. I got the impression the other patients in the room were laughing at me, as were some of the staff – who actually asked me who had brought me there, in a way that made it sound as though they were asking who my carer was. All in all, it wasn’t a pleasant blood test. Although, I’m not too sure there’s such a thing as a pleasant blood test.
  2. OCD
    Intrusive thoughts (unwanted vivid, visual thoughts that plague the OCD mind) often trigger a bout of tics in me, but so do my checking rituals. Before I leave the house, I have to check everything is switched off/locked/unplugged/shut several times. During these times, I am ticcing like a clock.
  3. Loud noises.
    I might imitate the loud noise, say “ow”, or a rather childish “uh oh”.
  4. Total silence.
    If someone says something akin to “everyone, be totally quiet” I will be sure to make as much noise as is humanly possible. Equally, if I walking past someone’s bedroom in which I know them to be sleeping, I will again be sure to make as much noise as is humanly possible.
  5. Inebriation.
    I still drink though.
  6. Fatigue.
    I still stay up though.
  7. Someone bumping into me.
    If this happens, I will normally shout “hey” or tell them to fuck off. It’s awkward.
  8. Relaxing.
    When I am unwinding after work, it feels like I’m letting out all the tics I have been saving up throughout the day.
  9. Stress/anxiety.
    The other day, I had an on-the-spot test at work in front of the manager of my manager. Naturally, I called him a dickhead, but happily, he didn’t care, and I passed.
  10. Literally anything.
    With echolalia and echopraxia, I can feel the urge to imitate anything you say or do. For instance, if I walk past a smoker, and their lips make an ‘o’ shape as they exhale, I will often have to make the same shape.

    In no particular order, the following is what makes me tick:

  11. Coffee. 
  12. Music. 
  13. Reading articles which blow my mind and expose me to ideas I have never come across before.
  14. Writing (blogs, articles, letters, stories, anything).
  15. Long walks through the city.
  16. Long conversations with friends.
  17. A damn good short story.
  18. A damn good IPA. 
  19. Bookshops in which it feels like time stops. 
  20. Discovering a new author whose work I love. 

This Is What Tourette’s Syndrome Feels Like

About two years ago, I started to whistle –  a seemingly ordinary event that struck me, and everyone else around me, as incredibly odd. It was not so much the fact that I have never been a whistler, but rather that I was whistling without really wanting to. I felt my lips go round, my ears registered the sound, but somehow it didn’t really feel like me.

Soon enough, similar things started to happen. When sitting an oral examination at university, I blew my examiners a kiss. When on the tube, I made eye contact with a commuter before telling him to fuck off. In the queue for the toilets, I let out a “woo”, and the woman in front actually backed away.

It felt odd going to the doctor. I was not in pain, but something was clearly wrong. I told him I couldn’t stop jaw clacking, stomach clenching and head nodding. I told him I was bird flipping, lip smacking and eye winking. I told him I was jazz handing, fake laughing and face grimacing. I told him I was bastard-ing and fuck-ing and shit-ing, and I told him I couldn’t help it.

Despite what I thought were incredibly odd symptoms, the doctor was unfazed. “Are you obsessive or depressive at all?” he asked. I answered that I was. “A classical history,” he said, before bestowing me with a diagnosis of Tourette’s Syndrome. And just like that, I transformed from a person without Tourette’s, into a person with Tourette’s.

Later, I realised that the doctor had been wrong. The word “classical” refers to “the culture of the past and to art forms which belong to a long formal tradition”. This meant that “classical Tourette’s” was a phrase that meant nothing. The word “classic”, however, denotes “a perfect or most typical example of something”. This meant that the phrase “classic Tourette’s” would have meant something, but even then I wondered whether this was accurate. Normally, Tourette’s starts when you are six or seven years old. Normally, people with Tourette’s do not have the swearing variety of the condition. Normally, people with Tourette’s are male. I was an obscene twenty-two year old woman who did not seem to fit the bill.

Either way, with classic or classical Tourette’s, ordinary or extraordinary symptoms, I was ticcing like a clock, every hour of every day, every day of every week. I tried to get my head round this new affliction of mine, and to do so even ended up starting a blog called “How To Have Tourette’s Syndrome”, as if I were some kind of authority on the matter. The only problem was that I did not know how to have Tourette’s. I had absolutely no idea. There were, all of a sudden, a ton of questions without answers. Could I drive with Tourette’s? Could I go to the cinema with Tourette’s? What about the library? Could I sit my exams in same room as everyone else with Tourette’s? Could I work in customer-facing roles with Tourette’s? Could I work with Tourette’s?

I asked people who knew about Tourette’s as well as the people who didn’t, and without exception, they all told me to live my life as though I didn’t have the condition. In theory, this should have been good advice, because, actually, having Tourette’s feels like nothing. You make a sound or do a thing and that’s it. The people you live and work with ignore it, because they are used to it. And you ignore it too, because you are used it. But at the same time, having Tourette’s Syndrome feels like a really big problem, or to be more precise, it feels like several really big problems piled up high.

Having Tourette’s feels like people are looking at you. This is not you being paranoid, because paranoia is an irrational suspicion about things that aren’t really happening, whereas when you have Tourette’s, people really are looking at you. However, despite how awkward it feels to be stared at, staring at someone with Tourette’s is a perfectly normal  activity. Staring is just a screening process. When someone has a tic, they are, objectively-speaking, doing something weird, and so the general public is just trying to figure out what they’re doing and trying to ascertain whether or not that person is a threat. Hopefully, they will realise the person has Tourette’s: that well-understood, well-talked-about, well-accepted condition everyone is familiar with. Or, perhaps more probably, they’ll realise nothing and just continue to stare.

But then there’s more than staring. Turn on your TV and there’s a chance you will flick on to a show which features someone, fictional or otherwise, with Tourette’s. He will invariably have the swearing variety of the condition, even though study after study has shown that the vast majority of people with Tourette’s do not swear. Maybe he is trying to get a girlfriend, or a job, or maybe he is just trying to make his way through the airport without saying the word “bomb”. This programme will invite you to look at how hard it is for this strange man to do something incredibly ordinary. It will shine a light on to his misfortunes, and turn them into a spectacle so that we are all duly entertained.

Sometimes, when you’re not being stared at, Tourette’s feels like you’re being laughed at. This is not you being paranoid, because paranoia is an irrational suspicion about things that aren’t really happening, whereas when you have Tourette’s, people really are laughing at you. However, despite how awkward it is to be laughed at, laughing at someone’s tics is a perfectly normal activity. It’s just incongruity theory. When you tic, you are saying what you shouldn’t say, when you shouldn’t say it. It’s what is least expected, so it’s funny. It might even be funny to you too – and that’s all good.

However, when writers write scripts in which people with Tourette’s are the punchline, and when production companies produce those shows, and when broadcasters broadcast them, it kind of feels like society is laughing at you. Tasteless jokes happen all the time, because that’s how comedy is. Comedy pushes boundaries, and everyone’s boundaries are different. Nevertheless, most people agree that making fun of a person with a stutter because they have a stutter, or making fun of someone with autism because they have autism, are jokes that are just not that funny. However, the same does not go for Tourette’s. Tourette’s is fair game. Look out for it, and you’ll see that Tourette’s is a punchline everywhere.

Sometimes, having Tourette’s feels like explaining Tourette’s, like, all the time. This is because, even though the condition is about as common as autism, there are still some people who think it’s not a thing, and some people who think that just because you are not ticking right there and then, you don’t have it. Other times, having Tourette’s just feels like paperwork, because unless you want to be confronted with a lot of red tape, awkward conversations and unnecessary faffing, it is often highly inadvisable to declare it before starting a new job. Undoubtedly, having Tourette’s feels like waiting, because over a year on the waiting list for treatment on the NHS is a thing that totally happens. It could also be that having Tourette’s feels like the least of your problems, because there is a good chance that, on top of Tourette’s, you have ADHD or OCD or good old fashioned depression, or all three, if you’re a very lucky thing.

There is not much that can be done about having Tourette’s. There are treatments, but no cure. Despite all this, there is little reason why it should prevent anyone from doing anything. It’s not a condition that affects your intelligence or your sense of humour or your personality. It does not mean you are dangerous or weird. All it means is that you have Tourette’s. And this shouldn’t matter. You should totally be able to live your life as though you did not have it, but it’s not that simple, because how Tourette’s is perceived really, really sucks. People think that Tourette’s is a thing other people have, that it’s ridiculous, that it’s weird, that it doesn’t even exist. People think that people with Tourette’s can’t work with other people because they’ll annoy them, or distract them, or offend them.

These people are wrong. Tourette’s is harmless –  it is sounds and movements which mean nothing at all. But when society tells you that your condition is comical, that you are too unpredictable to work in the same environments as everyone else, or that your too odd to be anything other than the centre of attention wherever you go – it’s these ideas that mean something, it’s these ideas that do the harm, and it’s these ideas that need to die.

This post also appears on the Tourettes Action blog

I Talk Shit

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I am part of a very elite group. No, I do not have an American Express platinum card, nor have I ever been part of the Bullingdon Club, or a member the House of Lords. Instead, I am one of the people with Tourette’s that actually swear.

And this is quite an exclusive group. Estimates vary, but anywhere between 10 and 25 percent of those with the condition experience coprolalia – the jargon term for the compulsion to say socially inappropriate phrases which pleasingly translates as “talking shit”.

“You have all the symptoms,” my consultant once told me. “All of them.”

The consultant was right. In addition to experiencing coprolalia, I have echolalia (the compulsion to repeat what others have said), echopraxia (the compulsion to imitate the gestures of others), palilalia (the compulsion to repeat what I’ve just said), and klazomania (the compulsion to shout).

And although all of these tics can be, in their own special way, a complete pain in the arse, it’s the coprolalia that does rather take the piss.

However, the phenomenon is widely misunderstood. Often, for me at least, coprolalia doesn’t even entail any cursing. Often, it’s just about being goddam rude.

For example, I regularly inform the people of the London Underground that they’re walking too slowly, and tell them to “come on” or “hurry up”. Loud people, on the other hand, will inevitably get a “shhh!” from me, and people who randomly stop at the top of escalators will be sure to receive a “MOVE!”.

Unsurprisingly, these tics can and do get me into pickles. Disgruntlement follows me wherever I go. Sometimes, people get so cross they say something. In these situations, my heart pounds. Sometimes, I leg it with my head down. Other times, I try to explain.

It’s these tics – the tics which make me tell strangers that they’re too noisy, too slow, too clumsy, or too much of a nuisance, that are far more awkward than any of the run of the mill, everyday swearing that comes out of my mouth. For example, if I randomly yell “SHIT” in a coffee shop, the general public will assume I’m a) mental, b) have Tourette’s, or c) have become very loudly and suddenly distressed. However, if I tell a dad pushing a pram to “HURRY UP” (which, mortifyingly, I did yesterday), the general public will assume I am a) goddam rude, b) goddam rude, or c) goddam rude.

These tics are also a bit awkward in the way that, unlike any of my other tics, they are actually indicative of what I’m thinking. If I let out a “bastard”, a “lemon” or a “pasta”, I am not actually thinking of bastards, lemons or pasta. However, if you just stop randomly at the top of the escalator with a queue of people behind you, and I tic at you “MOVE!”, I really do want you to move. Because it just doesn’t make sense to stop at the top of an escalator. You’re in everyone’s way.

9 Things People Ask When I Tell Them I Have Tourette’s

  1. What’s that?
    People ask me this so often it’s a wonder why I haven’t memorised a paragraph explaining what Tourette’s is. Anyway, Tourette’s Syndrome, or, for the acronym-prone amongst us, TS, is a neurological condition which causes those with it to experience tics – involuntary rapid movements (called motor tics), and involuntary sounds, words, and sentences (called vocal tics). Tics can be painful, embarrassing, or, more often than not, just a total pain in the arse
  2. How does your Tourette’s manifest?
    Tics change all the time, and everyone’s Tourette’s is different, but right now my motor tics include head nodding, eye rolling, eye scrunching, eye shutting, eye darting, cheek slapping, head hitting, tongue sticking, air blowing, head jerking, head banging, finger flicking, hand punching, bird flipping, jazz handing, stomach clenching, knee buckling, leg twisting, feet twisting, and feet kicking. In addition, I also experience echopraxia: the compulsion to imitate the movements and gestures of others.
    As for my vocal tics, they include grunting, whistling, clicking, “lemon”, “lemons”, “lemongrass”, “you’re a fuckface and I hate you”, “you’re so weird” “you’re a *insert literally any expletive here*”, “you’re a *insert literally any random word here*”, “you’re so weird”, “come on”, “you’re walking too slowly”, “move” and “hey”. In addition, I experience echolalia: the compulsion to repeat what has just been said, palilalia: the compulsion to repeat what I’ve just said, and klazomania: the compulsion to shout.
  3. When did you get it?
    Normally people get Tourette’s age six or seven, but I developed it at the grand old age of twenty-one. My first tics were clacking my jaw and screwing up my eyes. In the year that followed, the symptoms got progressively worse. Eventually, I was swearing which was when I knew for sure that I had Tourette’s.
  4. How do people get even Tourette’s?
    Tourette’s is this complicated neurological thing which no really understands yet. It’s got something to do with dopamine and the basal ganglia, the thalamus and frontal cortex parts of the brain. It is linked to conditions like OCD, ADHD, and Autism Spectrum Disorder, and is genetic. 
  5. Is there a treatment?
    Yes, but there is no cure, just some medications and therapies which can alleviate some of the symptoms. However, the medicines used are basically second-hand, as they are really intended for schizophrenia and other psychotic disorders. Unfortunately, these drugs come with a lot of side effects, and so for many people with Tourette’s, they just aren’t worth it. That said, for some people they work really well. It’s all a bit of a guessing game.
  6. What’s the worst things you’ve ever said or done?
    Just a load of c-words really, but during my final year of university I had a Spanish oral exam during which I could’t stop blowing my examiners kisses. It was pretty awkward.
  7. Do you ever say anything rude, and just pretend it’s a tic to get away with it?
    I get this one a lot, and the answer is no, no I don’t.
  8. Really? Seriously? You’re not fucking with me? You actually have Tourette’s?
    If I am going through a quiet patch, this is the normal reaction. Or else, they’ll ask me if I have really mild Tourette’s (which I don’t). Many people don’t know that Tourette’s is a condition that waxes and wanes. People with it can go through months where their tics are so severe they are disabling, and months were their tics are so mild you can barely notice them.
  9. Haha.
    This is frustrating response, given that I’ve just told you about my disability and not cracked one of my many brilliant jokes. Yes, some of my tics are funny, and yes, in those situations, it’d be weird not to chuckle. But if I haven’t ticced anything amusing, if I’ve literally just told you about my Tourette’s, then please don’t laugh. Wait for a good tic to laugh. It won’t be long, I promise. Think about it, if I just told you I had dyslexia or autism, would your immediate response be to laugh? No. Because these things aren’t funny, and neither is Tourette’s.  

Tourette’s Broke My Window

Tourette’s has taught me a few things. Most of these centre around what you’d expect: the general lack of awareness surrounding the condition, people’s differently weird reactions to tics, the fact that lots of people don’t get that Tourette’s is a disability, not a punchline.

But, recently, Tourette’s has also taught me that glaziers in London are really expensive, that Januarys are really cold, and that items you’d expect to be really breakable are actually really strong, and items which should be strong are actually really breakable.

This is because, in the past few weeks, seemingly for no particularly reason at all, my Tourette’s has decided I need to be punching walls, mirrors, my face, and, crucially, windows.

This wouldn’t be a problem were it not for the fact that hitting hurts and punching breaks things. So far, the main casualties have been one window pane and my right hand.

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Frustratingly, normal self-care is all but useless. For example, in order to soothe my hand, I soaked it for a while in ice water. However, during the soaking, my Tourette’s decided to lift my arm out and whack it against the wall near me, undoing all the good the ice water would have done.

As a consequence of my punching tic, recently, a lot of people have told me to ‘take care’ or to ‘look after myself’. But how do you take care when you have a condition that makes you say and do things that are beyond your control? The way I look at it, I’m not even the one punching the walls, my Tourette’s is. I can’t help it. All of this is involuntary, and unless I am locked away in a padded room, there isn’t a way I’m not going to somehow hurt myself.

Unsurprisingly, these self-injurious tics have been a little frustrating. But the changeable nature of Tourette’s will no doubt work in my favour. In a few weeks, the glazier will have come and gone, my hand will have calmed down, and there will be little to no trace of the punching tic that is currently bothering me.

In the meantime, I’ve found a compromise between wrapping myself in cotton wool and locking myself in a padded room: padded gloves. They’re not very attractive, but they do the job.

 

How To Have Tourette’s

First, be born. But to be specific, be born into a family where someone somewhere once had Tourette’s, OCD, ADHD or something like that. Congratulations, you have a) been born, and b) inherited this gene. Both feats are highly unlikely, and yet you have achieved both without even trying.

Don’t worry though, you haven’t got Tourette’s yet. You’re just a baby. Fingers crossed, you may never get it. You might just keep the gene tucked away forever without anything happening. For now, it’s a waiting game. For now, all you have to do is grow up.

For reasons unknown to everyone – even the people who know lots about tics and Tourette’s and brains – if you do get the syndrome, it’s likely it will kick in age six or seven. But really, any age will do. Actually, let’s say you’re a lot older. Let’s say you’re about twenty when you can’t stop clacking your jaw and screwing up your eyes.

You don’t worry about it, though. The OCD you’ve had since forever is currently going haywire. You’re checking and touching and counting and this just feels like an unwelcome extension of that damned disorder. Your OCD makes you do things you don’t want to do, and your tics – which you don’t even know are tics yet – also make you do things you don’t want to do.

Months of jaw clacking, eye blinking and stomach clenching pass. Then, one morning, you’ve woken too early and you hear yourself say “bastard”. You didn’t want to say it, but you said it anyway. Felt your mouth make the shape. Heard your voice make the sound. Your heart sinks. You’ve done some googling about jaw clacking, eye blinking and stomach clenching and you have had your suspicions.

You do not want this to be happening, and yet it is.

From then on, it all gets worse. Pretty quickly, too. Soon enough, you can’t control what you’re saying or doing. It’s not nice. It’s like you’re a puppet being controlled by someone who doesn’t like you. The puppeteer wants to mortify you, hurt you, mock you, and you can do nothing but dance along to his games.

You see your GP to be referred to a neurologist, but the consultant you see is unfazed by your symptoms. All he says is what you already know: that you have Tourette’s. Tourette’s: the condition characterised by both vocal and physical tics. Tourette’s: the condition associated with ADHD and OCD and young boys. Tourette’s: the I’ve-heard-about-that, the I’ve-never-met-anyone- with-that, the ha-ha-ha-isn’t-that-the-swearing-thing.

“Do you have any questions?” he asks, after the briefest consultation known to man.

“Will it go away?” you ask.

“No,” he says.

Congratulations, you now have Tourette’s.

Go home and research the condition thoroughly even though you’ve already researched the condition thoroughly. Feel odd about the fact you’ve got Tourette’s thirteen years later than average. Feel like this means you can no longer call yourself a punctual person. Feel odd that most people don’t have the swearing variety of the condition and that you do. Feel like this means you can no longer call yourself a polite person. Feel odd about telling friends and family about your brand-new condition. Feel odd when they express pity. Feel odd when they express disbelief. Feel odd when they just laugh. Feel odd.

Now is the time to have a quiet crisis. One of the “what now?” variety.

In the meantime, tic, tic, tic, toc, toc, toc. Whistle your lips and click your tongue. Jazz your hands and flip your birds. Twist your legs and shake your arms. Swear. Echo.

In the meantime, graduate from university. Now is the time to have another quiet crisis – another one of the “what now?” variety. Find it hard to imagine a future of any sort, but go to job interviews anyway. Feel so much trepidation about them that you can’t sleep beforehand and you screw them all up.  Receive the rejections with rage or dejection or absolutely nothing at all. Feel like you’re too weird to be employed. Feel hopeless.

Soon enough, it becomes abundantly clear that you are going to have to employ something called a sense of humour. After all, Tourette’s is a chronic, incurable condition. There is little point raging against it. You find yourself telling little kids they are little shits, blowing kisses to complete strangers, and calling cashiers twats. It’s embarrassing, but it’s funny.

So laugh a bit, when you can. But only a bit. Because, after all, it’s only funny to an extent, and tics are more often than not annoying or painful or awkward. You smash up your hand, you smash up the window, you hit your head, you slap your face, and you can’t walk that well. None of this merits any laughter.

In the meantime, find out that Tourette’s is like the moon: it waxes and wanes, comes and goes. During one of these deliciously quiet phases, pounce, run away, and get a job.

After much debate, tell colleagues and bosses why you whistle all the time. Explain the Tourette’s will get worse at some point, and when it does, when you’re ticcing all the time and can’t stop making all manner of odd sounds, when you can’t stop jumping or shouting out the c-word in front of customers, carry on regardless. Carry on with: “A chuckle and a shrug,” your colleague says. “You deal with your condition with a chuckle and a shrug.”

Think this is apt. Think that you do indeed treat Tourette’s with a chuckle and a shrug. Think that this is the only way you can think of having Tourette’s right now. But also think that, even if you live until you are two hundred years old, you will never quite know how to have Tourette’s.