Live Beat to Dead Beat

I’ve had a pretty full-on day. A summary of it would look a bit like this:

Travelling, laughing, banging, confronting, sobbing, regrouping, eating, reflecting, relaxing.

But I suppose as a blogger I should put in a bit more detail, so here goes.

Ruth and I travelled to Sheffield for a drumming workshop organised by Tourettes Action. On the train we were chatting and laughing, enjoying being together. Then a woman claiming to be a go-between for Jesus came and spoke to us. She knelt down next to our seats she said that He loved us and wanted to give us a lovely gift. She asked whether there was anything either of us wanted. We politely said there wasn’t and declined His help.

The workshop was great. It was led by an amazing drummer – Jonno Lodge. I enjoyed it a lot, although initially I found it hard to persuade my arms to cooperate, and hit the drums rather than myself. I used drum brushes instead of hard sticks, which meant I could concentrate on making a load of noise without worrying about hurting myself.

The journey back wasn’t quite as smooth. First, while we were waiting for the train a drunk man took offence because he thought I’d sworn at him. I explained, but he wasn’t really in a condition to take it onboard. His main concern was that Ruth and I were going to jump in front of the train and delay his journey. We didn’t.

When we got on the train Ruth and I had to sit about ten rows apart. This made the noise we were making spread further than if we’d been sitting together. I could hear lots of people around us laughing, but I wasn’t too fazed by this. What did upset me was when I looked up to find that a woman in the seat in front of had pressed her phone between the seats and was filming me. I asked her if she was recording me and she pulled the phone away but didn’t say anything. I asked again, but still no answer. In the end I got up and went to speak to her. I made her delete the video. For the rest of the journey I could see that she was writing down my tics in a notebook, so before we got off I gave her the web address for this site.

After Ruth and I said goodbye I went down into the tube. I find travelling on the tube particularly difficult because I can’t phone a friend to show other passengers I’ve got a voice that’s independent of my tics. While I was waiting on the platform an elderly woman walked past with some friends. She looked at me with disgust and said, “Eurgh, we have to put up with her again, do we?” I said, “That’s not very friendly”. She replied, “It wasn’t meant to be.” I asked her why she was being deliberately nasty, but she ignored me and walked away.

I felt broken, desperately alone and sad. I got on the next train and I really wanted someone to speak to. I thought about asking somebody else in the carriage, but instead I sat and fought back my tears. I’ve never cried on public transport before but this woman’s comment had really hurt. I assumed she’d been on the previous train with me and would’ve heard me ticcing for a couple of hours, but now she could get on with her weekend with no more tics. Why make a comment that would clearly upset me and undermine my self-respect?

I held it down on the tube but when I reached the street I began crying uncontrollably. I called Fat Sister and Laura but neither answered so I phoned King Russell. I willed him to answer and when he finally did he talked to me gently and helped me calm down enough to get on the bus home.

After we’d hung up, a woman sitting near me on the bus who’d heard the conversation leaned forward and asked, “Would it help if you had someone to talk to?” I said yes, and thanked her. We chatted for the last few minutes of the journey and it helped remind me that there are many more understanding and supportive people than there are idiots.

When I reached the lair a delicious roast dinner and apple crumble were waiting for me. As I ate I thought how great it had been to hang out with Ruth, and then, tired, I sank into the sofa and began to relax.

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