Fifteen years ago, I co-founded Touretteshero as a creative response to the increasing impact that my tics were having on my life. I also started writing this blog. Over the years I’ve tackled some tricky topics, both personal and political. I’ve found the words to describe my changing mobility, reflect on the impact of increasing pain, talk about the emotional impact of hate crime and most recently, detail the risky heart surgery I had in March.…

I started writing this last week, but before I could post it, a load of things happened much faster than expected, so this is an updated version of that draft.

I started by reflecting on something I’d been doing every morning and every evening, for a few weeks, only in the bathroom and only when I was on my own.…

Content warning: Descriptions of medical procedures and internal anatomy

On Valentine’s Day I wrote about the health issues I’ve been experiencing since the start of the year. To recap, my pacemaker battery box has moved so it’s now in the wrong place, and the leads that run from the box to my heart are blocking a big vein and affecting my blood flow.…

Content Warning: Description of death and hate crimes

Fifteen years ago when I tentatively started writing this blog, unsure of what I had to say or how I wanted to say it, there were a handful of people whose gentle support, tireless encouragement, interest and love gave me the confidence to keep going and to write about complex, nuanced experiences with care and honesty.…

Over the weekend my 7-year-old niece Bean excitedly discussed her World Book Day costume with me. I laughed as my sister said there was absolutely no way Bean could get painted blue for school so she could go as a Nac Mac Feegle (which are characters from her current favourite Terry Pratchett books).…

Content warning: Descriptions of medical procedures and internal anatomy

Today is Valentine’s Day so it seems appropriate to give you an update on the state of my heart. At the end of last month I wrote about some new and unexpected changes to my health that I’ve been experiencing recently.…

Back in October 2023 I wrote about relaxed performance practice and the importance of developing tools and approaches that support audiences to access art, theatre and live performance. This is particularly relevant to how we communicate the sensory elements of shows – sound, and lighting, etc.…

It’s a Sunday evening, I’m at home in bed, reflecting on a week that’s taken unexpected turn. Because these developments have implications for the weeks ahead, I’m writing this as an update for my friends, colleagues and collaborators, so you know what’s going on, and why things might need to shift at short notice.…