Intervals is an exceptional book, for which every deserved superlative seems cliched, in part because the language of illness, death and bereavement often feels too hollowed out by use to accommodate the magnitude of those experiences. Frequently repeated words may gain a carapace that resists our scrutiny: take “dignity”, for example, which Marianne Brooker regards with “mild suspicion” as “too clean-cut and classed”, with “none of the chaos that makes us human”.
Brooker’s mother, Jane, had experienced a certain amount of chaos throughout her life – a violent relationship with Marianne’s father, whom she quickly left, serial and often precarious employment in numerous sectors, constant financial insecurity – and had met each situation with a ferocious and transformative energy. When she was diagnosed with primary progressive multiple sclerosis in 2009, she was characteristically resolute and relentlessly generative; when her teeth fell out, she learned to make her own dentures, and as she became unsteadier, she duct-taped her feet to her tricycle so that she could still ride around the Devon countryside. She gave tarot readings by phone in order to be able to work from home, putting up with the cut taken by the third-party app she used in return for the sense of vocation and service the contact with her regular callers gave her. “Sick and poor,” writes Brooker, “she made a workshop of herself.”
Determined to face her illness on her own terms, Jane Brooker was unwilling to cede her dying and her death to outside forces – not simply the disease itself, but the gathering onslaughts of austerity and the accompanying horror of diminishing benefits, increasingly sketchy care services and disability work assessments. In 2019, a decade after her diagnosis, she decided that the time had come to die. She was 49 and her daughter was 26.
A seasoned campaigner for the rights of disabled people and the dying, she knew that an assisted death at home – she had neither the desire nor the funds to travel to Switzerland – was not an option without risking prosecution and imprisonment for the daughter who had promised to support her. But there was another way it could be achieved legally and without secrecy; she could simply stop eating and drinking, instruct the medical professionals that she wanted no life-saving treatment, and still receive the palliative care that would make her death as peaceful and painless as possible.
At the heart of Intervals is her daughter’s account of the period that followed, written with such clarity and precision that the reader simultaneously feels that they can see into the small sitting room, crowded with handmade decorations and filled with the songs of Leonard Cohen, and that the process is utterly beyond their imagination. Marianne Brooker’s internal wranglings are as we might expect them to be: constant worry over whether she is doing the right thing; savage moments of hope that her mother might succumb to water, sweets, jelly, anything to keep her alive; a desperate, guilty yearning for it all to be over; a sense that the pair have retreated into a half-imaginary mirror world of their own creation. This, as Brooker writes, is what it is to be with someone as they are dying, to feel the prospect of their end crashing into the brutal fact that your empathy has its limits because you will continue to live.
It is also an attempt to memorialise – with all the inevitable complexities that entails – a personal loss within the larger context of how lives are valued. It is evident that different scales are used according to wealth, class, race and circumstance; how, then, is it possible to talk about choice? What does a living will mean when both living and the capacity to exercise your will are made so difficult? Amid the furious broadsides against specific policies and agencies – the Department for Work and Pensions, Brooker writes, “is the last of the witch-hunters”, although one might more pessimistically call it the latest – a plea for “a more expansive ethics of end-of-life care” emerges, and indeed a care that would not simply relate to people when they were in need, or nearing death.
It would require a huge shift in the way we understand ourselves as interdependent, as valuable beyond our individual, measurable outputs and assets; about the way we appreciate care as reciprocal, as granting us a way not only to provide comfort and to alleviate distress, but also to appreciate fully our humanity. This angry, loving, sorrowing and profound book is a magnificent starting point for that radical imaginative act.
• Intervals by Marianne Brooker is published by Fitzcarraldo Editions (£10.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply
