NOT DYING is my first full length solo show, and was developed in Autumn 2018 through the Barbican OpenLab programme. I’m presenting an early version at the Lyric Hammersmith on the 6th June, before it officially launches at the Barbican as part of CRIPtic (a take-over of the Pit Theatre by D/deaf and disabled people that I’m co-ordinating).
Every solo show is intensely personal to its creator, and the same is certainly true of me with NOT DYING. It tells a story of coming to terms with an impending death – before that was thrown upside down. I’ve never talked publicly about this experience before, and I’m terrified to show the world.
For unknown reasons, from early 2016 to late 2017, I was getting very serious infections. My body couldn’t fight them off, I was ending up in intensive care, and everything looked quite grim. The doctors made it clear that the body couldn’t go on the way mine was. My GP was very forthright (read: brutal) in his clarity of explanation, and there didn’t seem to be an awful lot of hope.
This meant that I was no longer preparing for the plausible guarantee of a long life, and I started to write about that, exploring what it was costing me to live with the constant threat of death hanging over me. The terror, the frustration, the agony.
As a last resort, my urologist tried a new and experimental use of an existing treatment back in 2017 – a process first described in the literature in 2018 – and it began to work. My doctors also realised my adrenal gland was failing, making me almost unable to fight off any illness that came my way. This combination of treatments got the infection under control, and it’s no exaggeration to say that this changed my future completely – and saved my life.
NOT DYING no longer worked for me as a show. I wasn’t rapidly dying any more, I was having to learn what it meant to be a disabled person in the world. How I could root myself. How people related to me, and how I related to them. I rewrote it, as my life and prognosis changed. I focused on my relationship to death, other peoples’ relationships with my mortality, and on the future.
This moment of processing the turn from death to life defines the show completely. That complete reframing of my life allowed me to really see disability through a political lens, as a challenge to me and the world. NOT DYING lets me turn that challenge back on the audience: feel what I felt as I faced dying, then feel how I feel facing the world as a disabled person (and know that you are complicit in this).