Jess Thom
572,685 views • 11:23

Hello (biscuit) I'm Jess Thom, (biscuit) I'm an artist (biscuit) and part-time superhero. (biscuit, biscuit) I have Tourette's syndrome (biscuit) a neurological condition (biscuit) that causes involuntary (biscuit) movements and noises called tics. (biscuit, hedgehog, biscuit) There are three things (biscuit) you need to know straight away. (biscuit) Firstly, (biscuit) you're going to hear the words "biscuit" and "hedgehog" a lot in the next few minutes. (Laughter) (biscuit, biscuit, hedgehog, biscuit) Secondly, (biscuit) several times a day, (biscuit) my ticks suddenly intensify (biscuit) to a point where I completely lose control (biscuit) of my body and speech. These episodes, which I call ticcing fits (biscuit) look seizure like, and need similar management. If this happens while I'm speaking, (biscuit) my support worker will come and help me (biscuit) and Daniel will take over. (biscuit, hedgehog) Finally, (biscuit, biscuit) if I tic something funny (biscuit) you're absolutely allowed to laugh. (biscuit) In fact, it'll be a bit odd if you don't. (biscuit, hedgehog) I'm going to start by giving you a brief introduction to Tourette's, (biscuit) one of the most misunderstood conditions on the planet. (biscuit, hedgehog, biscuit) Lot's of people have heard of Tourette's (biscuit) but most of what they know is based on myths and stereotypes. Let's get some of these out of the way now. (biscuit) Swearing. Tourette's is often characterized as the swearing disease. But in fact, coprolalia (biscuit) the (biscuit) the technical name (biscuit) for ticced, for ticced, for obscene tics (biscuit) affects only 10% of people with the condition. (biscuit) I'm one of them (biscuit) but (biscuit) but for me tic swearing makes up only a tiny fraction of what I say involuntarily. (hedgehog, biscuit) Tourette's isn't a rare condition. (biscuit, hedgehog) It's estimated to effect (biscuit) 300,000 people in the UK alone. (biscuit) It impacts each person differently. (biscuit, hedgehog, biscuit, cat sex pajamas, biscuit) So (biscuit) (Laughter) (Aladdin, biscuit, Aladdin died) He doesn't really, don't worry. (biscuit, biscuit) (Laughter) (hedgehog, biscuit) Some people's tics (biscuit, biscuit) will be barely noticeable, (biscuit) while others will behave in a way that makes them stand out. (biscuit) Everyone with Tourette's (biscuit) will have multiple motor tics, and at least one vocal tic. (biscuit) These (biscuit) these can be as simple as blinking. or as complex as jumping, or saying things like: "The history of Iguanas can be written in a tea pot." (biscuit, hedgehog, biscuit) Tourette's isn't saying what's on your mind. (biscuit) I don't think about biscuits nearly as much as I talk about them. (Laughter) (biscuit, hedgehog) (Aladdin, biscuit, hedgehog) (Applause) (biscuit) Anything (biscuit) I've ever known or experienced has the potential to become a tic. (biscuit, hedgehog) Search (biscuit) search for Tourette's online (biscuit) and you'll get simplistic definitions (biscuit) that never really convey (biscuit) the experience of having it. (biscuit) My sister found a description in the Oxford Handbook of Clinical Medicine. (biscuit) It says: "Tourette's is (biscuit, hedgehog, biscuit, biscuit) expl (biscuit, biscuit, biscuit, biscuit) explo (biscuit) Explosive, occasionally obscene verbal ejaculations and gestures." It goes on: "There may be a witty, innovatory, phantasmagorical picture with mimicry, antics (biscuit) and playfulness." That's the Tourette's I recognize. (hedgehog, biscuit) I've had tics since I was six. (biscuit, hey, biscuit) As a child (biscuit) they were milder and less noticeable. (biscuit) Then in my early twenties, (biscuit) they began to intensify, and have a bigger impact on my life. In 2010 I co-founded (biscuit) Touretteshero. (biscuit, hey, biscuit) An organization (biscuit) that celebrates the humor and creativity of Tourette's. (biscuit) Before starting Touretteshero, (biscuit) I found it hard to talk about Tourette's without tears. A single phrase shifted my thinking. (biscuit) My friend Matthew (biscuit, hedgehog, biscuit) described my tics (biscuit) as a crazy language-generating machine. (biscuit) He told me (biscuit) not doing something creative with them (biscuit) would be wasteful. This ide (biscuit) this idea took root and it helped me to see my tics as my power rather than my problem. (biscuit) Through Touretteshero, (biscuit) I can recast the symptoms of my condition (biscuit) as springboards for creativity. (biscuit, hedgehog) On the website (biscuit) I invite (biscuit, biscuit, biscuit) on the website (biscuit) I share over 5,000 of my vocal tics (biscuit) and invite anyone to make art in response. (biscuit, hedgehog) I propose (biscuit) that humor and creativity (biscuit) are key tools (biscuit) in encouraging people to think more deeply about an often (biscuit) mocked condition. (biscuit) Put simply, (biscuit) Touretteshero's mission is to change the world, one tic at a time. (hedgehog, biscuit, biscuit, biscuit) Since the outset (biscuit) one of the big aims (biscuit, biscuit, biscuit) has been to use the creativity and spontaneity of Tourette's (biscuit) to capture the imaginations (biscuit) of scientists and academics (biscuit) and encourage (biscuit) new generations of researchers (biscuit) to take an interest in the condition. (Aladdin, biscuit) and (Aladdin, biscuit, hedgehog, biscuit) I believe (biscuit) that innovative approaches (biscuit, biscuit) have an important role to play (biscuit) in promoting increased (biscuit, biscuit) increased discussion and that collaboration across disciplines (biscuit) offers opportunities for new understanding and thinking. (biscuit) It's easy to see (biscuit) how vocal tics with their vivid imagery (biscuit) can be illustrated. (biscuit, biscuit) Or how the movements of motor tics could be choreographed into dance. But what about the most distressing and debilitating aspects of Tourette's? (biscuit) Can these be given over for transformation? (biscuit, hedgehog) I don't just think they can, to me it's really important that they are. (biscuit) By far, one of the most difficult aspects of Tourette's for me (biscuit) is my ticcing fits. (biscuit) While these aren't a classic par (biscuit, biscuit) while these aren't part of the classic presentation, (biscuit) they are experienced by others with the condition. (hedgehog, biscuit) These episodes (biscuit) have been happening on and off for several years. (biscuit, biscuit) But since October 2011, they've been a feature of my daily life. (biscuit, biscuit) They happen several times (biscuit) in any 24 hours period (biscuit) and could last from just a few minutes, to several hours. (hedgehog, biscuit) They can happen anywhere (biscuit, biscuit) regardless of where I am, or what I'm doing. (biscuit) Whether I'm at work, on a bus (biscuit, haa) or fast asleep. I've had fits in front of sunsets and in the pouring rain. (biscuit) To.. (biscuit) To... (biscuit) To explain what happens during these episodes (biscuit) I often use the analogy of a fruit machine. (biscuit) A number of different things (biscuit) can happen but the mix of what turns up in each fit is completely random. (biscuit) The key elements (biscuit) are loss of speech, (biscuit) fast, frequent movement of my arms, legs and stomach, (biscuit, biscuit) Dystonic tics that make (biscuit) that make my muscles go tense (biscuit) and my body lock up, (biscuit) a deeply unpleasant choking tic (biscuit) and a very painful gaping of my jaw. (cat sex pajamas, hello, biscuit, biscuit) (Laughs) (hello, hedgehog, biscuit, biscuit) I'm imagining you all in bikinis. (hedgehog) (Laughter) (biscuit) Not really. (hedgehog, biscuit) My support workers record (biscuit) information about each fit. (biscuit, hedgehog) Where it hap... (biscuit) The start and end time, (biscuit, biscuit) the severity, where it happened and what elements were present. (biscuit) I gave a year's worth of this data (biscuit) to doctor (biscuit) Thomas (biscuit) Doctor Thomas Mitchell and Professor Joseph Hyde. (biscuit) Tom's a music technologist and lecturer (biscuit) at UWE (biscuit, hey, biscuit, biscuit) and Joe's (Batman's cousin) (biscuit) and (biscuit, biscuit, biscuit) and (biscuit) and Joe's a composer (biscuit) and (biscuit) and professor of creative music technology at Bath Spa University. They have turned this data (biscuit) into a sound piece (biscuit) by attributing sonic characteristics to the information generated by my (biscuit) by my fits. (biscuit, hedgehog) Here is an extract from this (biscuit) from this piece that represents two months (hedgehog, Aladdin) (Various sounds) (Various sounds) (bop, bop, bop, clink) (Various sounds) (biscuit) (Various sounds) (tada!) (Various sounds) (biscuit) (Various sounds) (biscuit, brup brup) (Various sounds) (ting!, hedgehog, biscuit, biscuit) (Various sounds) (hedgehog, biscuit, yay) (Various sounds) (hedgehog, Aladdin) (Various sounds) (biscuit, biscuit) (Various sounds) (biscuit, biscuit, cats) (Various sounds) (bop bop, sexy cat, biscuit) (Various sounds) (hedgehog) (Various sounds) (biscuit, hedgehog, dada!) (Various sounds) (biscuit) (Sounds end) (biscuit, biscuit) this (biscuit) this collaboration (biscuit, biscuit) is an expression of an idea (biscuit) at the heart of Tourette's syndrome. (biscuit, biscuit) But even the most challenging aspects of the condition (biscuit) have created potential. Utilizing this can help unlock new ways (biscuit) of seeing and understanding (biscuit) complex experiences. But most importantly, it can help open minds. (biscuit) My challenge to you (biscuit) is to make good use of your own powers. My invitation is to enjoy and share in mine. (biscuit) Together (biscuit) we can change attitudes (biscuit) and replace misconceptions (biscuit) with understanding. (biscuit, hedgehog, biscuit, Aladdin, biscuit) We can encourage more people, we can make interesting art along the way, (biscuit) and we can encourage more people to contributing to (biscuit) to unraveling (biscuit, biscuit) the mysteries of Tourette's (biscuit) the mind (biscuit) and the alchemy of chaos. And the biscuits (hedgehog) (Laughter) (biscuit, hedgehog, Aladdin) (Applause) (biscuit) (Applause)