I woke up in a bad mood – it was probably a mixture of tiredness and post-Shambala blues. Throughout the morning I got increasingly frustrated with my lack of independence and I was taking every opportunity to feel sorry for myself.
This was partly because I’d really wanted to go to Notting Hill Carnival but hadn’t found anyone who was definitely up for going with me. Leftwing Idiot and Poppy were considering it but weren’t sure. I didn’t want to put any pressure on them, so instead of telling them what I was feeling, I allowed myself to get more and more morose.
However, after a chat about logistics they decided they were up for it. We all got ready and I fought to pull myself into a better frame of mind.
Going to big, busy, public events always presents additional challenges and risks for me. I think all three of us felt anxious about the mix of millions of carnival-goers, an extra-vigilant police force and my tics and ‘ticcing fits.’
We arrived at Carnival via the canal towpath – this is Leftwing Idiot’s cunning route which took us to the heart of the party quickly and easily. Getting in is usually tricky because of the large crowds, and I felt a bit tense as we reached Meanwhile Gardens. Thankfully it turned out to be straightforward with both the police and other partygoers being extremely helpful. This was a stark contrast to other times I’ve been – without my wheelchair – when my tics and jerky movements have been misinterpreted. The police moved barriers out of the way and let us go down closed roads to avoid the most crowded streets. All I had to do was point at where I wanted to go and they would let us through.
We headed straight to the Channel One sound system. It’s a popular choice and they were celebrating their thirtieth year at Carnival so it was packed, but we made it right to the front. The sound system crew on the other side of the barrier couldn’t have been more welcoming and this helped me feel relaxed. They let us know that if we needed to move to the other side of the barrier that was fine. We were positioned next to one of the speaker stacks and I could feel my earlier negativity being blasted out of me by the music and the positivity of those around me.
I did have a fit while we were there – it made all my muscles tense up so my body was completely locked. It was surreal, feeling the music vibrating through my body when I wasn’t able to move at all.
One of my big worries when I’m having a fit in public is that someone will call an ambulance. To reduce the likelihood of this happening I’ve made a new sign, which reads: ‘No Ambulance Please.’ This seemed to work well and helped reassure the people around us.
We stayed and danced at Chanel One until the end. I had an amazing time and was very pleased I’d gone. I ended the day feeling happy, positive, and determined to keep my negative feelings and worries in check.