On Thursday night I had a ‘ticcing fit’ just after 8:30pm, and I didn’t have another for the rest of the evening.
I woke up yesterday morning feeling unusually refreshed and Bunny, who’d done my night-time support, greeted me warmly saying, ‘Good sleeping!’ She was referring to the fact that I hadn’t had a fit all night long.
At work during lunch – 5 hours later – I whispered to a colleague that I still hadn’t had a fit. I said it quietly because I didn’t want to jinx my peaceful day.
By 6:30pm I still hadn’t had one and I sent Bunny a text to let her know. Her one-word response summed up how I was feeling too: “YEAH!” This was already the longest I’d gone between fits for over a year.
At 7:00pm Claire and I headed to the Gowlett for a screening of the film my friend Nez made with Leftwing Idiot last year. It was the first screening in London and the room was packed. The film started a little after 8:00pm – still no fits.
Forty-eight minutes later, midway through, I started making a distinctive ‘Howing’ noise which is often an indication that a fit’s about to start. Leftwing Idiot noticed very quickly and came to help.
I left the room with him and Claire and had quite a strong fit in a quieter, more private space nearby. When it subsided Claire wrote down the time it’d started. She looked at me and said with a smile, ‘It’s been over 24 hours!’
This is highly significant for me. In theory my fits might stop happening just like that, but I think it’s more likely they’ll just slowly peter out.
While I was watching the rest of the film I started thinking back to when Leftwing Idiot and Nez were away making it, just over a year ago. I’d been staying in Leftwing Idiot’s flat and although at that time the fits weren’t happening every day, I was having regular episodes that I’d come to describe as ‘ticcing fits.’
At the end of the film there’s a scene where Leftwing Idiot’s standing in front of St Michael’s Mount on a desolate blustery beach. We’d spoken on the phone shortly after they’d finished filming this. I’d been having a tough day tic-and-fit-wise and I’d grazed my head, but I didn’t mention it to him. I remember hearing the exhaustion in his voice, but he didn’t tell me until much later what a tough time he’d been having too.
Watching him on screen being battered by the wind made me think about the forces of nature I’d been battling with at the same time.
As I thought about this it didn’t make me feel at all sad. In fact it reminded me that however tough things sometimes feel, these experiences are part of a bigger journey.
My first fit-free 24 hours since last October is an exciting landmark. Whether or not I have another day like this soon, remains to be seen. Either way there’s no doubt that I’ve come a long way since I first wrote anything about 24 hours of tics.