- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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 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.
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.
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.
- People don’t care about you. Every day, I walk through central London, whistling weirdly, clicking my tongue, saying random sentences, swearing, repeating what others have said, shouting, almost falling over because of the tics in my legs, hitting my head, and slapping my face. It could well be a symptom of living in such a large city, but people look at me, stare at me a bit, and then look away. That’s it. Those are the consequences. In a way, this is more liberating than depressing. It makes you realise we don’t have to follow all of society’s stupid rules.
- People rarely really understand what Tourette’s is. A lot of people simply equate Tourette’s with swearing. A lot of people think Tourette’s is a mental illness. A lot of people think Tourette’s is just a punchline. Few people realise just how diverse the condition is, meaning that a large part of having Tourette’s is explaining what Tourette’s is.
- I didn’t really understand what Tourette’s is. Before experiencing the symptoms first-hand, I had no idea that repeating what others do or say is a facet of Tourette’s, I had no idea that tics constantly change from week from week, and I had no idea that me having Tourette’s had anything to do with me having OCD.
- People with Tourette’s have to tell people they have Tourette’s all the time.
For me, one of the most awkward things about having Tourette’s is knowing when and who and how to tell people I have it. Sometimes, it’s obvious. For instance, I know I have to tell my hairdresser, because I might move suddenly and then she might cut off half my hair. But do I tell shop assistants? Every single customer that walks in the door of where I work? Waiters? Fellow gym-goers? Random strangers on the Bakerloo Line who have just heard me shout “shit” at the top of my voice? Sometimes, when I do tell people I have Tourette’s, it doesn’t work out too well because they don’t know exactly what it is. Sometimes, when I do tell people I have Tourette’s, it feels a bit like I’m saying, “Hello, my name is Alice, and this is what’s wrong with my brain.”
- People react to tics very differently. Sometimes, if I am ticcing in a café, staff will speak to me in a patronising way. Sometimes, if I am ticcing in a shop, security will be suspicious and follow me around. Sometimes, if I am ticcing in a public place, people will think it’s OK to stare at me, as if they can figure out what’s wrong with me just with their eyes.
- A small percentage of tics are funny, but most are just annoying. When I say “You’re a low-calorie bitch!”, or shout out the letters I have in Scrabble, that’s funny. But if I smash a window with my fist, or hit my head against a wall, or can’t stop shaking as I try to go to sleep, then that’s not that funny. It’s annoying.
- Tourette’s hurts. If you repeatedly make the same movement over and over again, whether it be a heard jerk, muscle clench or – my current favourite – wall punch, then that’s going to hurt. Maybe not immediately, but eventually. But Tourette’s also hurts, like, feeling-wise. I have been excluded from stuff because of my Tourette’s, and it feels…unfair.
- If someone has a problem with you having Tourette’s, if they are especially embarrassed by it, or if they don’t want to be around you when it’s particularly bad, then they probably aren’t worth knowing. I started ticcing when I was in my early twenties, and it made me realise that the friends who had a problem with it weren’t actually friends, and the friends who didn’t have a problem with it were awesome. This was very helpful information.
- There is no rule book to living life. There is even less of a rule book when you have Tourette’s. Since developing Tourette’s, I have asked myself the following questions: Can I drive with Tourette’s? Can I work in customer-facing roles with Tourette’s? Can I work with Tourette’s? Can I go to the cinema with Tourette’s? The library? The theatre? And the answers are all the same: Sure. Maybe.
“So what do I do if I want to buy a bottle of wine?” the customer asks me.
“To have in *hey* or *hey* take away?” I ask.
“You just literally *hey* take it to the till and *hey* pay for it there,” I say. “Sorry, I have Tourette’s. I don’t mean to say *hey* all the time.”
“Oh, do you?” the customer says. “I wish I had Tourette’s.”
He says this laughing, presumably because he thinks what he’s said is funny. And I laugh too. Not because I think what he’s just said is funny, but because I am serving him, and that’s what you do when you serve people: you laugh at their jokes regardless of whether or not they are actually funny.
Presumably, the customer equates Tourette’s with swearing, likes to swear, and wouldn’t mind getting away with some more profanity in his life.
But coprolalia – the compulsion to say socially unacceptable words and phrases – is quite rare amongst people with Tourette’s. It’s a small part of a largely unfunny and totally unsweary (not a word) condition.
For instance, this week, I’m punching walls and kicking cupboards. My hand is red and swollen and painful and my knees keep on buckling when I try to walk. This is affecting my communication and mobility, but on top of this, my Tourette’s is also affecting my vision, because my eyes are rolling, darting and shutting of their own volition.
But the customer’s reaction is so familiar that I’m not even frustrated or surprised by it. In truth, it took me only a few weeks of having Tourette’s to realise that, for many people, Tourette’s just isn’t a disability, it’s a punchline, and when people hear a punchline, they laugh.
This is the excerpt for your very first post.
I’m in a store which sells tasteful, Scandinavian gifts and homeware. Essential items like beard oil, boxes of salted liquorice, and decorative wooden elephants costing over one thousand pounds.
In this tranquil shop, full of tranquil people, browsing for tranquil things, my klazomania kicks in.
“Lemon!” I shout. “Lemon! Lemon! Lemon!”
The shouting really does jar with the store’s ambience. But, hey, people with Tourette’s need to buy beard oil too, and so I continue to meander through the rows of goods that I cannot afford.
It’s not long before I notice my shadow: a security man drawn to my citrusy speech. He watches me, approaches me, staying near but not that near, and never actually deigning to talk.
Voluntarily, I throw him an inane grin and, involuntarily, another “Lemon!”
I get it. He wants to figure out whether I am a shoplifter, or some strange citrus-based troublemaker. But if I wanted to pinch anything from this store (which – if I had no moral compass – I totally would, everything here is so goddam tasteful), I would be quiet and not loud about the process.
It’s just common sense that people with Tourette’s make for bad shoplifters, though. Especially with my Tourette’s, because as well as shouting out “lemon!” at random intervals, I am also prone to saying “yoink!” whenever I pick up something.
On my way out, I want to tell the security man I am a klazomaniac, not a kleptomaniac. But I don’t, not only because klazomania is, some might argue, one of English’s more uncommon words, but also because I don’t want to offend any thieves in the vicinity.
So, I exit the shop, liquorice-less, beard oil-less, and elephant-less, leaving behind a wake of bemusement and amusement, and I’m on to the next store, an afternoon of loud lemons stretching out before me.