What books inspired you growing up?

I read so many books! Anything you put in front of me. For a while in junior school I became my school’s librarian, which was great because my home life was very difficult at the time. I was also having a lot of mobility issues that got me bullied in the playground. It gave me access to a library in my lunch break. The books in that space became my sanctuary.

My favourite book was Face by Benjamin Zephaniah. I really enjoyed its structure – it was a novel but it ended with a poem. I thought that was really cool.

Part of my pleasure was also the means I had to go through to get my hands on it. I’d been in trouble for making a very on-brand sticky mess (building a sculpture out of painted latex gloves). I got silver paint all over my clothes. This was a bit of a pattern and my mum had run out of ways to try to encourage me to be more careful with my things. There was a travelling book fair at my school and I’d already started reading their copy of Face. I really wanted it – I’d saved up all my pocket money. My punishment was to be forbidden from buying the book.

I had a huge sense of moral outrage at this injustice. I devised a scheme with a friend, where I traded £8 worth of WHSmith vouchers for a £5 book from the book fair, which she would present to me as a gift. The extra £3 of vouchers paid for her silence.

Why did you write Sanatorium?

I’ve always been really interested in kind of multisensory writing and poetics, and the way my body responds to submerging into water. I wanted to write a book that felt like that sensation. I wanted the sense of immersion into water. And I guess I also wanted a book that was a testament or that bore witness to the experience of my body on land.

The physical space in the book was really important to me. One of my questions posed in my Sanatorium research was how can a disabled body have a sustainable artistic practice that operates around the fluctuations of my body. Having a book that constantly shifts form and register felt like the truest version of that. Having spaces where I couldn’t physically continue writing any longer…

I wanted people who might not have finished a book for many years to be able to turn the page quickly, when there’s sometimes only a sentence written, to remember what that achievement feels like. But I also wanted space to offer the readers room to insert themselves into the text – to feel that they were merging with me. The book was designed to be a collaboration with its readers.

One of the most striking elements of Sanatorium is its emotional honesty. How easy or difficult do you find writing about your own experience?

That’s a good question. In general I’ve never really thought about the book in terms of emotional honesty. I’m a real over-sharer anyway, and I say whatever comes into my head. I find it really easy to describe elements of my actual physical body, because I have to talk about my body all the time. I’m so used to being explicit and frank about things other people might regard as private. My body is so often policed and watched – by doctors, by my care team, by the state. I already feel like there’s no privacy there, by the very nature of being a sick person, my body is constantly being observed and scrutinized.

One area I really struggled with was writing experiences of mysticism and out-of-body experience. I wanted to write about hallucination as a form of floating. But when it came to it, I did a lot of talking about the idea of having hallucinations, dancing around the concept, but I was really, really afraid of  actually writing out a real hallucination sequence.

I was terrified of exposing a part of my subconscious that I hadn’t processed fully: what if I revealed something I didn’t mean to?

This was partly because the out-of-body experiences I have experienced are almost all ineffable – it’s impossible to put them into words. But more than that, they’re the most private thing I own. Where I could apply language to them, I was terrified of exposing a part of my subconscious that I hadn’t processed fully: what if I revealed something I didn’t mean to? I spent a lot of time engaging with other female and genderqueer mystics to make sense of how they described their own experiences. St Teresa of Avila, Johanna Hedva, Margery Kempe. It felt more and more like the lesson I was being offered was “surrender” – just lean in to it. All of it – the fluid, mushrooming, ghostly madness of it all. I think that was a good lesson for me.

But I definitely had  a small moment of fear just before it was published when I felt like, “Oh, God, everyone is going to see me naked!”

How did you find the whole experience of having your book published and what was it like, specifically in regard to the Coronavirus pandemic and lockdown?

I really enjoyed having my book published. It felt amazing to hold something I’d made in my hand. I still feel really emotional about that whenever I pick up the book. I have a really strong connection to the physical object.

The moment I realised that the pandemic was coming to the UK, having a launch in physical space seemed impossible. I couldn’t imagine an event where my chronically ill friends or family wouldn’t be able to attend, let alone an event where I might be worrying for my own health and safety. So I called it very early. I had a conversation with Tom about alternative measures and we came up with a plan. That enabled me to create an event that felt actually really suitable to the book itself, live on Instagram, from the book’s actual star: my inflatable bathtub. I worked with some amazing people I wouldn’t have had a chance to invite to a physical launch – Rebecca Tamás and New York-based dancer Jerron Herman did live performances from their own bathtubs. Stylist Mia Maxwell helped me develop this surreal art-party-meets-children’s-birthday aesthetic. I kept popping balloons full of confetti. I loved every bizarre moment – it felt like everything it needed to be.

 What is the most memorable response a reader has had to your book?

I’m currently sitting next to a letter, typed on a typewriter, from a friend, writer Chay Collins, who I haven’t seen in a long long time. Because it’s typed on a typewriter, I can feel the indent of the ink and it feels like we are touching.

I’m also grateful for every single personal message I’ve received from a person for whom the book has meant something. Especially during lockdown – I’ve really valued that connection. People have shared their own responses and experience in a way that feels incredibly generous – like another chapter has been written.

Around the time Sanatorium was launched, two artists in Puerto Rico who live in the same apartment block made two series of short films responding to Sanatorium. Regner Ramos, read the book and responded through five short film fragments. Then his friend Juan Léon,who lived just below Regner in their building, but wasn’t able to see him because of lockdown, made a response to films that Regner had made. It was an amazing little series of knock-on ripples that picked up on threads and fragments in very different ways. That was wild – it was the first time I really understood the book would have a life of its own.

What’s coming next for you?

I’m doing a live performance of Sanatorium with Bloomsbury festival on 22nd October. It should be really electric – the theme for the festival is ‘vision’ and we are focusing on the more hallucinatory elements of the book, using projection and sound to try to invoke a shared mystical experience. We’re broadcasting through Zoom from William Goodenough House in Bloomsbury. I’m really excited that Sanatorium will finally get a chance to go outside!