Autumn has begun in Greenwich park, London. Since Tumblr limits us to 10 photos (and I have 14 I want to share), here are a few, and a link to the rest.
A little-known fact about Tourette’s Syndrome is that in some cases silence is a bad thing. In public I very often try to suppress my tics so I can release them later in safe, non-embarrassing/dangerous locations. However when I’m alone and find myself unusually silent it is sometimes a sign that I am upset and my focus has gone to that. I am typically very relieved to hear my tics again because it usually means I’m getting over whatever was digging away at me.
I think a lot of people assume that Tourette’s is a release of anger or intended to get a reaction. I don’t find it to be that way. For one thing when it comes to strangers, reactions are unpredictable and this makes me incredibly anxious. I in no way want to provoke someone. Sometimes I tic when I’m angry and you can usually see that reflected in the way I tic but it’s never an excuse to lose my temper. I make no excuses for having a vent, especially as I lack the attention span to stay angry for long anyway. The thing people very seldom realise is that I tic most often when I am excited, happy and comfortable.
Tic tic hooray!
Today I went to take a photo of the sunrise because with the sun peaking from behind low clouds and a smokestack it looked like fire. When I imported my photos I realised that I had inadvertently captured a Green Flash! They only appear in fairly specific conditions and even then only for a second or two so I count myself pretty lucky. The first photo is the same as the second but it’s cropped so you can see it better. The third photo was taken just a few seconds afterwards, just to show how fleeting a moment it was.
Tics of the day:
"I was training to be a cat… but I dropped out."
A few minutes later…
"Kitty cat dropout. Go back to cat school."
Grease, the meowsical.
I like early morning fog. It accumulates between buildings and trees creating silhouettes so everything appears more simple. There’s a moment before it’s bright enough for the street lights to go off and before most people have started shuffling out the door when the city feels dreamy and tranquil.
Walking amongst the Wharfers™ on autopilot in Waitrose today when I surprised us all with an “OHMYGOD, JELLY SWEETS!” tic. Being rather startled by it myself I played it off like I was just really excited about sweets! I had to buy a bag, for consistency, of course.
… I managed [relative] quiet for the rest of my shopping.
Went to get my hair done today. My tics were manageable but there were a few entertaining slips. Mostly the vocal tics would surface when I was trying to hold still for the person with the scissors. Priorities! Their receptionist wasn’t in so the phone kept ringing and ringing. If you think a Touretter can sit through this easily then you try not blinking for 30 seconds every few minutes. Tics triggered were: “PHONE!” … “Hey, it’s the phone!” … “It could be important!” … “Avon calling!” … “Ministry of Cats calling!”
Of course the usual “I was a cat once” and later when she was washing my hair “Don’t forget my flea dip!”
I never could get the hang of Thursdays.
I’ve just started reading TourettesHero’s book Welcome to Biscuit Land. It’s brilliant thus-far, highly recommended reading. However, as Tourettes has a tendency towards contagiousness among other ticcers, seems I’ve picked something up. At some point I encountered the words “catapult your love to me” and in the short time it took me to do dishes I have had a flood of themed tics inspired by these words. The ones I could remember seemed worth sharing:
Catapult your cat to me!
You take some cat then some ‘pult! … You got a fly-ing cat! A fly-ing cat!
Cats love to fly!
Cats don’t support the khat ban!
Catapult cat butt!
Catapults for the nation!
There were a few more too, in-between many regular tics like “fuck-shit-stack”, “Dun dun DUN…super gay!”, “that’s enough of your sass-back” and the squeaking noises. When I’m in a safe place and have the freedom to just let my tics fly, I can’t help but delight in my strange neurology.
Tourette’s Syndrome [TS] is thought to be an inherited neurological condition of involuntary vocal and physical (motor) tics. It involves far more than tics but the tics are what set it aside from other disorders. It can be easy to mistake for something else, especially in individuals such as myself that didn’t fall into the statistical tendency for it to peak in adolescence and decrease in adulthood. For me I had some minor tics in my youth which fit right in with my family of quirky jokers and it didn’t trouble me very much. I was diagnosed ADHD however. I went for most of my years thinking I simply had a poor attention span, mild OCD, mild depression, anxiety and difficulty with certain sensory stimulus. I know now these are commonly associated with Tourette’s Syndrome. The tics became much more obvious and frequent in the last few years and made me question those familiar “silly” sensations. In hindsight it seems I subconsciously built my life around working with it, such as getting a parrot because, hey, I’m just playing with my parrot! *squeak squeak*
For some people their tics are totally involuntary. For others like myself, tics are a semi-voluntary response to an involuntary sensation. For me it feels like a deep burst of energy or tension. The sensation goes away with the corresponding movement or word(s). Motor tics are nigh on impossible to completely control. You know that puckered face you make when you bite into something sour like a grapefruit? Imagine trying to stop yourself from making that face. You may be able to flex your face to keep it from totally contorting but you’re still making a face, still feeling that sensation.
Some people can suppress their vocal tics, some cannot. With a bit of luck and practice I can usually identify that incoming tic sensation and hold back or deflect it through a competing movement or sound, such as a stretch or a cough. It takes a huge, exhausting amount of concentration and tics can still get past you. Sometimes they happen very fast and there’s no time to stop it. Other times you’ve suppressed for so long you can’t contain it any longer. You’re on borrowed time and you’ll pay for it with compounding interest through increased intensity and numbers of tics.
Everyone with TS should have a safe zone to unload. The anxiety of not knowing if you can control yourself and make it to a safe place is by far the worst aspect of it for me. Truth be told, on my own my TS doesn’t bother me that much. The worry is in other people’s reactions to such an unpredictable condition. I don’t know if I will tic something inappropriate and be assaulted for it. Imagine having to leave your home every day with that on your shoulders.
There are a lot of implications that people with Tourette’s are just saying what they really think. This is untrue but I’d like to explain further. EVERYONE has random unformed thoughts/words/associations swirling around in their head at any given moment. These unformed thoughts/words/associations aren’t even at the forefront of your mind and they’re often meaningless as to your real opinion on anything, and they certainly aren’t things anyone would purposely articulate without some pre-sorting/filtering. People with Tourette’s have a sort of broken filter and these random words become tics. No offense is intended. In fact I think most with TS are especially sensitive to causing offense because it’s personally distressing. So if tics are “honest” then it’s only to a certain inculpable point.
There are also a lot of stereotypes about Tourette’s Syndrome being about swearing. That is called coprolalia and it only affects about 10% of people with TS. I am in that 10% but swearing is not the most prominent feature of my tics. Even coprolalia itself doesn’t necessarily mean swearing, it can just be anything taboo or inappropriate. An example from yesterday. I had to call my broadband provider to sort out a problem. I managed to successfully suppress my tics for about 15 minutes. So just as we’re about to end the call I tic “I LOVE YOU!” …*face-palm* I covered by saying “Sorry, force of habit” but it wasn’t a force of habit. I just didn’t want to explain the real reason because I felt an imminent onslaught of tics, which is the reward for successful suppression. See, a misplaced “I love you” is just as embarrassing as a random swear. It goes to show even inappropriate is not about swearing, it’s about maximum awkward. It’s also important that people know that not all TS is going to involve swearing. All the cheap stereotyped jokes about it contribute to spreading false information. That false information can lead to the vast majority of people with Tourette’s possibly being unfairly excluded from things that are important to them. People with TS are capable of a great deal more than they are often allowed through lack of understanding from others.
My hope is that if you see someone perhaps moving in an unusual way or saying things that don’t make sense that you don’t stare, point, laugh, mock, bully and start videoing them. These are all things that happen to people with TS and it’s scary and hurtful.
On the cheerier side of TS, tics can be insightful, playful, creative and indeed very funny. More times than not I delight in my tics and so do those that are close to me. Tics can be ironic “I WANT PEACE AND QUIET”. They can be silly: “I was once made of chocolate” (I have also once been “a cat”, “a watermelon” and a few other things I can’t recall now). When a police helicopter was spending an unusual amount of time overhead I ticced “THEY KNOW I’M A PENGUIN!” When I go to King’s Cross station I have a series of Harry Potter tics. “Packed with muggles!” At Christmas time I was sitting with a friend beneath a giant Rudolph the red nosed reindeer in Covent Garden. In between sips of coffee I muttered out a tic “I won’t play your reindeer games!” A month or so ago I had a series of tics naming US presidents by their full names. My bizarre neurology can be very entertaining. I enjoy sharing the funnier side because it’s what I’m most comfortable with and I want others to be able to mutually delight with some understanding.
It’s a complicated and fascinating condition so I welcome you to converse about it. If you would like more information about Tourette’s Syndrome here is a fantastic resource. http://www.tourettes-action.org.uk/ Thanks for reading and in the interest of promoting awareness, please share.
I tried watching some of Margaret Thatcher’s funeral just for the spectacle of it but I can’t seem to separate the interesting sights from the horrible, horrible person being celebrated. I think the last Prime Minister that received a send-off like this was Winston Churchill, who absolutely deserved it. Comparing Winston Churchill to Margaret Thatcher is like comparing Mother Theresa to Pol Pot. A nationalised funeral for the ugly face of ruthless privatisation costing over £10m paid for by the poor and disabled makes me feel nothing but disgust and frustration. This is a slap in the face.