Pain Woman Takes Your Keys, and Other Essays from a Nervous System

"Definitely. There’s another essay in that book where she writes about the “kingdom of the sick” and the “kingdom of the well”, using the terms that Susan Sontag used—in Illness as Metaphor, she wrote of descending into the kingdom of the sick, how it was an entirely different place, something that is very recognisable to a lot of people who are chronically ill. It certainly chimed with some of my experiences, and helped me understand my whole life. Looking back, I thought I had been living in the kingdom of the well, and had maybe taken a slight detour into the kingdom of the sick. Then I realised I had never been living in the kingdom of the well at all. “Anybody can become ill—it doesn’t matter who they are, what their background is” I see them as layered, one on top of the other, two different modes of existence. The gulf between them is huge. Another quote I was drawn to as a teenager was from The Great Gatsby , where F. Scott Fitzgerald wrote that “there was no difference between men… so profound as the difference between the sick and the well.” Health conditions are so intersectional, you know? Anybody can become ill—it doesn’t matter who they are, what their background is. Obviously how it is managed can vary according to external factors, but essentially there is a kind of gulf, I think, which becomes a gulf in understanding as well. Which is why these writings about chronic illness are so vital and so extraordinary in different ways. Yes, Pain Woman Takes My Keys is basically my ur-text when thinking about chronic illness, particularly the writing of chronic illness and chronic pain. Partly because it’s so varied in the way she approaches it. It’s quite fragmented in form, a collection of essays. Some of them you could also think of as poems in some ways. There’s one in there that is an alternative pain scale—with the numbered aspect of a pain scale, but with completely different content to the pain scale you are given in a hospital. The philosophical aspects of Huber’s thinking about what it means to be a body in pain is just exquisite. So relatable and also mind-expanding. It’s a book I always come back to and which I always recommend to people, saying: this will change everything. Yes. It’s a mixture of memoir , pathography—illness writing—and nature writing . It tracks my life here in the Lake District, where I’ve lived for the last 16 or so years, which is a place that people often associate with good health, outdoor pursuits, and lots of activity. Living in this place, I was becoming increasingly ill, then began to understand why that is. Parallel to that, it looks at my life history, childhood experiences, and how those eventually led to my diagnosis in my thirties with two genetic conditions that had been making me ill all my life. There’s a kind of rewriting of your past that happens, when you have a new way to understand it."