At some point in the last few months I must’ve read about a project by artist Raquel Meseguer. It’s funded by Unlimited so perhaps it was mentioned in an email or social media post. I can’t remember when this was, but the title of the project must have caught my attention and stuck in my thoughts because when I woke up this morning I was thinking about it.

Raquel’s project is ‘A Crash Course In Cloudspotting (The Subversive Act of Horizontality)’. The projects blurb says: ‘audiences will be invited to partake in the subversive act of lying down in public, to experience an audio-visual installation that articulates something of what it is to live with chronic pain.’ This feels very relevant to me at the moment.

I’m writing this from a horizontal position, with the strong sense that this is likely to remain my position for much of the day. Over the last year or so chronic pain has become an increasing part of my life and it’s having a knock-on impact on my broader wellbeing and energy. Lying flat, out of my chair, has become a key strategy for managing my discomfort, and this is often very public – in meetings, on patches of grass, low walls, paths and park benches. My current favourite is concrete warmed by the sun.

Right now, though, my horizontality is much more intimate – I’m in bed. My back’s pushing against my mattress, my laptop’s perched on my stomach, and the familiar echo of pain is reverberating in the depths of my spine down to my hips. I feel happy and relaxed but extremely tired. My room and the rest of the castle is in chaos, but it’s unlikely I’ll achieve much beyond lying flat today.

The last couple of weeks have been busy. We’ve been working on our new creative project, Not I, performing at Glastonbury, dropping into the Republic of Inclusion in Ottawa, and getting back just in time for Fran’s amazing wedding yesterday. These things have only been possible by pacing myself, lying down a lot, and timetabling in regular naps.

Management of my pain and energy levels is far from perfect. It’s very much something I’m still working out, both practically and emotionally, and I’m not always great at knowing when to stop. It’s further complicated because outwardly most people think I’m looking really well – I’ve lost quite a lot of weight and have a new hair cut. The compliments are lovely, but they make it harder for me to say when I’m struggling.

Thinking about Raquel’s project and knowing that I’m not alone in my experiences and perspective is significant. Today I’m going to commit to practicing the art of “cloudspotting”, both from my bedroom window and from a mat in the garden. My support worker Hayereyah has arrived and I’ve been slowly telling him what needs doing so that the castle’s chaos is more manageable.

Obviously clouds aren’t the only things in my line of sight:

“Lamp-post you’ve got great posture.”
“Lamp-post I’m arc-welding a rainbow to your mind.”
“The Pigeon School of Head Massage, Lamp-post Speaking.”

As ever the lamp-post bore silent witness to my tics, my life, and the passing clouds.