Intervals

nerves outwards, and the person whose pain is relational, from the world inwards. My witnessing could only be approximate, contingent. I wasn’t gripped by pain but I chose to sit with it, a choice that my mum wasn’t afforded and perhaps – despite my promises – one she feared I could retract. Loose witnessing is the basis of an important ethical and political demand, no less powerful for its leap of faith. In Ahmed’s words: ‘I must act about that which I cannot know, rather than act insofar as I know. I am moved by what does not belong to me.’

It was the first time I’d read a narrative account of watching one’s mother die. Marking it up to teach, I underlined reminders for myself: ‘put a pillow under her knees’, tell her ‘that I loved her so much … you are surrounded in love’. Curious and selfish, I hoped that the book would reveal some great secret to me. Harry’s mother was ‘sick and broke and terrified’, not unlike my own. She chose her suburban condo in place of a Medicaid facility; ‘who could blame her?’ She wanted to die where she had lived and to be crowded in by her

I’ve got to prepare,’ wrote Chantal Akerman before her mother died, ‘but how to do that. Had to imagine myself without her. But I didn’t have enough imagination

But her negative feelings about her body can generate a force field that repels any appreciation of it. I’ve long known the drill: Boobs, too small. Butt, too big. Face, bird-like

Going to Dignitas’ had long been our shorthand for dying, as if all our conversations had been trademarked ahead of time. People seeking assisted dying at the Swiss clinic must be suffering from an illness that would otherwise lead to their death or have an unendurable disability, as she did. But we couldn’t afford their fee and she didn’t want to travel abroad to end her life. She would have felt pushed by UK law to make the journey earlier or alone, without my assistance, to protect me from prosecution. Perhaps my mum was right and this new plan was her best option, relatively speaking: she wouldn’t have to wait, stack up the credit cards and hope for the best; neither would she make some strange concoction of stockpiled pills or plunge herself into the estuary; she wouldn’t have to travel abroad, and I wouldn’t find her at the bottom of the stairs

The first felt abstract, fodder for debating societies and newspaper articles; the second lived in my guts and on the surface of my skin. For my mum, of course, the reverse seemed true. Being dead was no great fear of hers, but being compelled to live was killing her

My mum sensed that her time was running out. If she didn’t make this decision while she had the full capacity to explain and enact it herself, her opportunity would be lost. Bearing the full weight of her future, she was driven by a fear of losing her own autonomy but also of impacting mine. Certainly, she wouldn’t have been the first single mum to sit uneasily with the role reversal that comes with needing care herself: society makes a burden of our most basic needs.

Creativity was not simply a coping mechanism, helping my mum to come to terms with disability, but a way to reconstitute those terms, her circumstances and her own capacity to love.

. But illness forced a new kind of intimacy with which she slowly grew comfortable. Later in her life, she leant in, as if cashing in all the hugs she’d missed

Rather than simple ameliorating harm, beauty makes safety possible.