RAH

What an amazing day! I don’t know where to begin, but I’ve got to start somewhere so I’m going to start in the middle – the middle of the day, the middle of TEDx Albertopolis and the middle of the Royal Albert Hall.

Leftwing Idiot wheeled me on to the stage (we’d had a brief discussion earlier in the day about whether I should wheel myself on, but the margin for error was small and the prospect of inadvertently plummeting off the stage too terrifying). Leftwing Idiot reminded me to put my brakes on and then left me in the spotlight.

What an incredible place to find myself – in front of 4,500 people in one of the most iconic venues in the country. Years ago I’d pass the Royal Albert Hall every day on my way to college. I never imagined for a moment that one day I’d be on stage there, talking to thousands of people about my unusual neurology. Back then I couldn’t even summon up the courage to talk to the disability co-ordinator.

I felt strangely calm as I started speaking and for such a big venue it felt remarkably intimate. When I’d rehearsed on stage in the morning the hall had been empty and my tics had echoed around all over the place. Now it was full of people they sounded softer.

It was a relief when I heard myself starting to speak, and I relaxed even more when I back on track after a long tic interrupted my flow. I’d been worried about going completely blank or getting thrown off by my tics.

I’d practiced the talk a lot during the previous week and I’d done several run-throughs with Leftwing Idiot in the morning. I knew exactly what I wanted to say, but I also knew half of what would come out would be a complete surprise – although I did suspect there’d be some biscuits.

As it turned out I told the audience I was imagining they were all wearing bikinis, I announced the death of Aladdin, and I discussed Batman’s family tree – and there were lots of biscuits. But I also managed to describe my experience of Tourettes and shared my belief that even the most challenging aspects of the condition have creative potential.

To illustrate this I played an extract from a sound piece made by Dr Thomas Mitchell and Professor Joseph Hyde. I gave Tom and Jo a year’s worth of data generated by my ‘ticcing fits’ and they made a sonification of this by attributing specific sounds and effects to the information. This piece represented a great deal of discomfort and distress for me, but it sounded beautiful and intriguing. I can’t think of a more incredible place for its premiere.

 

 

A couple of weeks ago I wrote about how sad I’d been feeling as I approached the second anniversary of my ‘ticcing fits’. I’d focussed on what I felt I’d lost – my independence, my freedom and my sense of self.

As I came off the stage I felt elated and privileged to have had such an opportunity and to have had the help of so many people to share it with. I decided I’d try and remember this feeling at times when I feel down. Next time I’m struggling with an aspect of Tourettes I’ll try not to dwell on what’s happening – instead I’ll think about what I can make of creatively.

TEDx Albertopolis was full of amazing examples of people from diverse disciplines thinking differently, shaking things up, and making things happen.

I was excited, wowed and terrified by some of the other speakers. Subjects included the origins of Albertopolis, left-handed piano playing, cockroach tours, beautiful rules, dances with words, dances saved and threatened by the internet, new musical instruments – one made using people and another using a Sensory, Elastic and Adaptive interface – SEA. There was a talk about the creative possibilities of kelp, and the allure of beetles.

One talk that really made me think was about a different type of bug – the antibiotic-resistant type. Professor Dame Sally Davies, the Chief Medical Officer for England, spoke bluntly about the health threat posed by antibiotic-resistant bacteria. Her warning and message is definitely one that needs spreading.

Videos from the event should be available online soon. When they are I’ll share them here and on Twitter and Facebook.

At a time when resources – are under pressure, collaborations and conversations across disciplines are particularly important. It might feel tempting to hunker down when things are difficult, but thinking or working in isolation rarely works out well for anyone.

Touretteshero’s helped teach me to look up and reach out, and as a result some of the most difficult things in my life have felt much easier.

I hope that events like the one today will inspire a greater number of scientists, academics, and artists to share conversations and knowledge and generate new ideas. This is essential if we’re going to meet the challenges ahead and shape a better future for everyone.

2 responses to RAH

  1. Mandyque says:

    TED is an amazing thing, the world’s most diverse thinkers, all coming together to talk about things that they are interested in, things that affect them, things about their lives or ideas, it’s inspirational in a big way. I’m sure you fitted in perfectly with their philosophy of giving people a platform to make others think differently. You should be immensely proud of yourself, facing that huge audience, in such a prestigious place, and making them think.

    Well done 😀

  2. barbara.renel says:

    I loved watching and listening to you Jess. As you settled in to listening to the soundscape you started dancing, which was a delight.

Leave a Reply

Login Register

This site uses Akismet to reduce spam. Learn how your comment data is processed.