I’m writing this in a slightly unusual location – sitting on a train. Leftwing Idiot and I have spent the day hanging out with friends in Nottingham. Now, as we speed back to London through the dark countryside, it seems like a good time to reflect on our day.
We got off to an early start. Our away day was organised at short notice with me booking tickets and making the arrangements in my lunch break yesterday. This morning, bleary-eyed, we bundled into a taxi to take us to Kings Cross. When we got there it became clear I’d booked the wrong train. I’d not been to Nottingham before so I didn’t realise there was anything odd about going from Kings Cross rather than St Pancras, or needing to change at Grantham. But Leftwing Idiot did, and he was decidedly grumpy that I’d not booked the most straightforward route. He was pessimistic about how we’d sort it out, but it turned out to be very straightforward and by 9:00am we were heading out of London on the right train.
We arrived at Nottingham just after eleven and were greeted by two friendly members of the railway staff with a wheelchair ramp who helped me off the train. They explained that the lift was broken and that we’d have to head down the slope at the end of the platform and cross the tracks to get out. This seemed like a terrifying solution but they assured us it was safe.
They radioed ahead to close the track and get the power turned off and then we disappeared down the slope and onto a walkway that cut across the three sets of rails. I didn’t feel any safer when I heard the man who was pushing me sigh with relief each time we crossed a track. Just as we made it across the other man’s Walkie Talkie crackled into life and the message that the broken lift was back in use. This made us all laugh.
When we were safely out of the station we headed off to meet our friend Dylan – he’s eleven and has Tourettes. Dylan came to our superhero party a couple of yeas ago and became Goalie Boy. He’s been having a very difficult time with his tics recently and has been in hospital for the last couple of weeks. He’d persuaded the doctors to let him go home for 24 hours, so we caught up with him and his parents there. It was lovely to hang out with them all. He showed me some amazing origami he’d made and some brilliant drawings, some inspired by his tics, and some by mine. I’d got some blank paper with tics printed on them and we put them to good use. Dylan did a great illustration for “Don’t hit your head on the world.” After some more drawing, lots of chatting and a delicious lunch we said our goodbyes. Dylan chose some more tic sheets to do later so I’m keeping my fingers crossed for more illustrations from him.
Dylan’s dad gave us a lift to Rikki’s. Rikki’s been involved with Touretteshero from the very beginning and created our logo. It was great to spend some time with him, his dad, and his two sons, Rocky and Marley. We don’t get to see Rikki often and our meetings are usually fleeting. So spending an afternoon wandering in Wollaton Park and on through the city with him and his family was a treat. We ended up in a café in town, and while we were there, loads of people we knew dropped by, including our friends Nez and Justin.
While we were busy chatting, Marley, who’s four, was hard at work with a pack of pens. He created a stream of tic-inspired drawings. Justin carefully explained what each tic meant and Marley worked his magic.
Some of Justin’s explanations were just as creative as Marley’s drawings. For example he described, “New wave otter rave” as being like “Underwater squirrels having a party.” There was only one tic Justin couldn’t explain – “God loves sandwiches.” Marley asked, ‘What’s God?’ and Justin looked stumped for a moment before saying, ‘I’ll let your dad explain that one.’
Marley produced no less than 23 excellent drawings, including two collaborations (Images to follow soon).
The afternoon slipped into evening without us noticing and soon it was time to go. We made our way back to the station following the tramline at top speed. As I finish this post the journey’s coming to an end. Soon we’ll be back at the castle, and I’m feeling happy and relaxed after a lovely day. This day last year I spent the whole day asleep following a ‘ticcing fit’ which had taken a trip to hospital and a lot of powerful medication to bring it to an end. It was the beginning of some bleak days when I found it difficult to imagine how I could continue to live an active life in the face of my daily fits. My fits have changed very little since then, but the impact they make on my life has, and today’s proof of that.