Intervals

By Marianne Brooker

What makes a good death? A good daughter? In 2009, with her forties and a harsh wave of austerity on the horizon, Marianne Brooker's mother was diagnosed with primary progressive multiple sclerosis. She made a workshop of herself and her surroundings, combining creativity and activism in inventive ways. But over time, her ability to work, to move and to live without pain diminished drastically. Determined to die in her own home, on her own terms, she stopped eating and drinking in 2019. In Intervals, Brooker reckons with heartbreak, weaving her first and final memories with a study of doulas, living wills and the precarious economics of social, hospice and funeral care. Blending memoir, polemic and feminist philosophy, Brooker joins writers such as Anne Boyer, Maggie Nelson, Donald Winnicott and Lola Olufemi to raise essential questions about choice and interdependence and, ultimately, to imagine care otherwise.

• Language: English
• Publisher: Fitzcarraldo Editions
• Release date: Feb 28, 2024
• ISBN: 9781804270844

Marianne Brooker

Marianne Brooker is based in Bristol, where she works for a charity campaigning on climate and social justice. She has a PhD from Birkbeck and a background in arts research and teaching. She won the 2022 Fitzcarraldo Essay Prize for Intervals, her first book. 

Book preview

3‘I am now both mad and grateful for this formidable work of thought, which subtly yet profoundly shifts the terms of discussions on dying. What kind of world have we built for one another, asks Marianne Brooker, where many must struggle to be present for their own deaths? The many who live on borrowed time, in borrowed homes, dispossessed by a society that dangles rights without furnishing means? From nothing less than heartbreak, Brooker has germinated an exquisite and extraordinary reckoning, bringing a sorely needed focus on both the substance of life and the question of a socially just death.’

— Amber Husain, author of Meat Love

‘I marvelled at Marianne Brooker’s Intervals. Out of her mother’s death, she weaves a short, tender, angry yet clear-eyed book about the nature of love, and what it requires of us all if we’re doing it right.’

— Joanna Biggs, author of A Life of One’s Own

‘Both an elegy and an account of interrupted time, in this generous book Marianne Brooker draws together threads of memoir, social history and literature to tell a lyrical, ethical, and above all political story of pain, care, and maternal connection. Deftly, movingly, Brooker reminds us of the interdependence at the heart of all our lives, that we inherit more than biological matter, and that the dying mourn the living, too.’

— Helen Charman, author of Mother State

‘Intervals is an extraordinary essay that is both unflinchingly intimate and radically political. Brooker’s striking achievement is to never be prescriptive while, at the same time, never holding back from the force of her argument. It is, I suppose, an elegy. And like the best of elegies, and the bond it describes – it is charged with life.’

— Nathan Filer, author of The Shock of the Fall

4‘A beautifully written portrayal of caring and end-of-life decisions – exquisitely sensitive, passionate and angry in its railing against our broken social care system.’

— Sam Mills, author of The Fragments of my Father

‘Intervals is an endlessly moving and profoundly generous telling of what it means to give and receive care. Stunning in its intimacy and expansive in its political purpose, Brooker’s writing invites us to think deeply about the relationship between giving care and honouring life. Through visceral, tactile details of creating, working, making and tending, Brooker brings us into the spaces where caring happens, where life and its endings happen. A rare, revelatory, and truly radical book.’

— Elinor Cleghorn, author of Unwell Women56

7

INTERVALS

MARIANNE BROOKER

89

‘mothers     hospitals

sex     class     housing

anchored flying

is it enough like this as I am

is the human visible through above &

completely in the material determinants’

— Denise Riley, Marxism for Infants (1977)

‘She embodies an unknowable politics by deepening the shadows in places, tarrying with the anarchy of impersonal memory. Her autonomy undoes itself and disperses into a devotedly plural materiality. Her identifications are small revolutions and also the potent failures of revolutions. She is free to not appear.’

— Lisa Robertson, Nilling (2012)10

Contents

Title Page

Epigraph

¶ Becoming

¶ Mother of invention

¶ Naming

¶ Loose witness

¶ With-woman

¶ Living will

¶ Dying poor

¶ Practical magic

¶ Holding

¶ Borrowed time

¶ Canopy

¶ We are the evidence

¶ A slow burn

Sources

Acknowledgements

About the Author

Copyright

11

¶ Becoming

Some books are old familiars; theirs is a faithful magic. My copy of The Velveteen Rabbit was a gift from my mum on 2 June 1993. She inscribed the date in a diagonal line across the top-left corner of the flyleaf as if it were significant, but I’m not sure why she gave it to me on that day – it’s not my birthday, though hers was a few days before. I would have been one and a half; she would have just turned twenty-four. Now, the book has been with me longer than anything and anyone else, there on a shelf in every house I’ve lived in. Nestled inside a mottled cream slip case, it has a blue cloth cover with the title embossed in gold; its watercolour illustrations are all sandy browns and midnight shadow.

To Marianne, the inscription reads, who made all the toys become real for me. ‘Real isn’t how you’re made,’ says the wise toy horse to the velveteen rabbit: ‘It’s a thing that happens to you … You become.’ Our realness isn’t just on our skin or in our bones, it’s a process, a relation. ‘Does it hurt?’ the rabbit questions, his curiosity tilting into fear. ‘Sometimes,’ comes the reply, always honest. ‘Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby.’ We love one another into being, long and close; love builds us up and wears us thin. ‘Once you are Real you can’t become unreal again. It lasts for always,’ the book promises.

But the sentiment doesn’t hold, at least not within the confines of the book. The toy rabbit, old and loved, is eventually thrown away by a nurse as she decontaminates the house following a bout of scarlet fever. Slumped in his sadness and disrepair, he’s visited by a fairy who explains that though the rabbit was once ‘Real to the Boy’, with 12whom he’d slept and played, he’ll now become ‘Real to everyone’. With this, they fly from the rubbish heap into the woods, where ‘all the forest was beautiful, and the fronds of the bracken shone like frosted silver’. Released into being, the former toy is set free to leap and dance with the other rabbits.

Perhaps this arc is curative: the shabby rabbit is implicitly made better, gifted with autonomous movement and only glancingly familiar to the boy he’s left behind. Or perhaps it’s spiritual: the rabbit has died and the forest is a gentle heaven for the loved and lost, or grown-out-of. But there’s something else happening; it’s not just the rabbit that is transformed but the world around him. Unlike the nursery, where ‘expensive’, ‘modern’ and ‘technical’ toys intimidate those who are cheap and ‘commonplace’, the woodland borrows its texture and detail from the velveteen rabbit himself. Newly animated, he’s reflected in his surroundings: ‘at last, at last’ he cries, leaping across ‘velvet grass’. The world changes and becomes, just as he does.

The gift of the book might have been occasioned by moving house. A year or so after I was born, we swapped my grandparents’ spare room for a council flat on another side of town, in a neighbourhood that often smelled of soap, tucked away in the shadow of a looming Procter & Gamble factory. I remember that first home of our own being palatial, perhaps because I was small or perhaps because memory can render pleasure in square metres, expanding the space with the strength of feeling. Certainly, the flat itself must have been small, or just big enough. In a photograph taken there when I was four or so, I’m crouched on the patch of grass outside, hair in a ponytail and smiling straight at the camera. Ahead 13of my time, I’m wearing a black T-shirt, black jeans and tiny, flowery Dr. Martens – unquestionably my mother’s daughter.

The photograph is one of the few remnants of a trove of pictures that we stored in a wicker picnic basket on top of a wardrobe. I coveted the basket for years, quietly unbuckling its leather straps and sneaking photographs into my pocket for insertion into my own clandestine archive: my grandma, smiling in black and white, stuck to the wall above my bed; my father – whom I have never met – forced into the folds of a small, thick square and wedged into the gaps of a vent, just above the skirting board. Much to my mum’s annoyance, photos would turn up under the bed, slipped between book covers or Blu-Tacked to the walls: cut up, sequestered and scribbled over.

Not everything, however, can be hoarded like a book or a photograph. Some stories are myth, passed around like secrets with their own legendary time, all whispers and awe. I had a small circle of imaginary friends, some of my own making and some borrowed from the world (David Bowie chief among them). Every evening, my mum laid out two plates for dinner: one for me and one for Louis-Lou, my favourite made-up friend. She’d wait for me to finish and go to bed before eating the second, untouched plate. I don’t remember this, but she often told the story, proud of both her generosity and her fortitude. As adults we’d joke: ‘How hungry are you, and how about Louis-Lou?’

Once, we wrote a letter to E.T., another imaginary friend. To my surprise, soon after, I found a reply waiting on the doorstep. I’d only just learned how to read and knew instantly that his language of bright pink shapes and symbols wasn’t mine. Curious, we took the letter to our neighbour, the only person we knew with an Alien 14Translation Machine – or so my mum claimed. I watched as she summoned the message up on its screen, the hard drive gently whirring as it translated the otherworldly Wingdings into words. I lost the letter many years ago and don’t remember what it said, but I still wonder at it: the sheer invention, the shared belief.

These tales have a cumulative power: first a whim then a way of life; next a hope then a habit. Childhood fantasies buffer our coming into being and soften the edges between what’s real and what’s possible. Anyone can believe in something, stubborn and singular, but it’s a powerful thing to participate in someone else’s wish. Play engenders a politics of alliance, not transcending our material conditions (impossible), but transforming them, plate by plate, letter by letter, dream by dream. We carried our determined fantasies into adulthood: ‘Real isn’t how you’re made,’ my mum taught me, it’s what you make. ‘The critical promise of fantasy,’ Judith Butler writes, ‘is to challenge the contingent limits of what will and will not be called reality. Fantasy is what allows us to imagine ourselves and others otherwise … It points elsewhere, and when it is embodied, it brings the elsewhere home.’ Well-practised in this art, my mum welcomed in all that was strange and made the world her own. Whether one believes in this promise can depend on the largeness of the world already available. For a young working-class single mum, the world’s ‘contingent limits’ might well be found wanting. There has always been something at stake for us in imagining the world otherwise, a transformative power on which we’d often need to draw.

In 2009, on the cusp of forty and a harsh decade of austerity, my mum started to stumble and slur, slips that her colleagues mistook for alcoholism. Despite her 15protestations, the GP was sure it was ‘just vertigo’. When I was seventeen, we moved from Essex to Devon in search of vaster skies and found, as well, a better-resourced and more trusting health service. Barely a year into our new life, my mum came home from the hospital with an MRI scan in a large brown envelope and a diagnosis.

‘I reviewed this lady today,’ the letter from her neurologist to her GP begins, before adopting an unfamiliar language: ‘The oligoclonal bands are positive in the CSF and I explained to her that she has the primary progressive form of multiple sclerosis. Naturally this is distressing for her.’ Years later, I read a description of the ways in which MS works like a wintering, deep under the skin: ‘the disease had eaten away at the fatty protective coating surrounding her cranial and spinal cord nerves, so that the tips of the nerves frayed outwards, like the scales of a pinecone, and so were exposed to damage and ruin’.

Around 7,000 people are newly diagnosed with MS each year in the UK. About 10 per cent of those are diagnosed with the primary progressive form: symptoms can be varied but deterioration is persistent, with no remission or cure. The diagnosis was compounded by the much faster unravelling of our material circumstances. At first, my mum lost the feeling in her left leg, then her job, then our home. She could no longer travel for work and our private landlord was unwilling to accommodate tenants claiming Housing Benefit. After a short spell on the waiting list for emergency council housing, we moved to a nearby country estate offering live-in work. We gardened and waited tables in lieu of paying rent, returning ourselves to an eccentric form of feudalism.

A year or so later, less able to work outside and climb three flights of stairs, my mum moved again, settling in a nearby cottage. By this time, I had moved away to 16university. She sent me care packages in the post: chocolates, blankets, handmade necklaces and paintings. I sent her photos, trinkets from the market and portions of my bursary. Over time, she weathered three changes in benefits system: Disability Living Allowance, Personal Independence Payments and finally Universal Credit, the meagre support diminishing with each new change of face. She started and never gave up self-employed work, fearing that an administrator with no medical training might find her fit enough for a job outside of her home despite severe pain, incontinence and difficulty walking.

In 2011, my mum was the only person picketing outside her local authority on a National Day of Action Against Austerity. A few days before, miles away, I’d sat on the Student Union floor with a group of friends from the activist group Sisters Uncut. We made her a T-shirt handprinted with the slogan ‘Cut Atos’, the French multinational company tasked by the UK Government with conducting ‘work capability assessments’ – a contract that was worth £100 million a year. I have a photo of her wearing the T-shirt and waving a hand-painted placard made from a retractable walking stick and an old cardboard box: fearless, peerless and proud.

Work capability assessments had devastating consequences for disabled people. Those previously defined as chronically sick and/or disabled suddenly found themselves deemed fit for work and unable to access a lifeline of welfare support. In 2015, nearly ninety people died a month after being declared fit for work; many assessors refused to take evidence from doctors. Spending cuts to public services during this period led to increased rates of poor nutrition, sub-standard housing, ill health and social isolation. We now know that 335,000 deaths across England, Scotland and Wales between 2012 and 2019 17can be linked to austerity, with death rates rising fastest in the poorest areas. As Frances Ryan describes this period: ‘Disabled people – once a source of compassion and care – had become an object of suspicion, demonization and contempt.’ We lived and still live in an age of excess: soaring profits and avoidable deaths.

Writer and artist Johanna Hedva describes their own autoimmune disease: ‘I can say it brings unimaginable fatigue, pain all over all the time, susceptibility to illness, a body that performs its normal functions monstrously abnormally or not at all.’ Unimaginable: a hard stop. Somewhat arrogantly, I don’t think I’d ever contemplated the unimaginable before, not deeply anyway. Hedva’s writing is a ‘call to arms’. ‘Stretch your empathy this way,’ they ask people like me, ‘to face us, to listen, to see’, to refuse the unimaginable and challenge a system in which, by its nature, sick people are treated as if they are expendable. Hedva’s demand feels familiar: empathy is the work of our dogged imaginations. We must stretch and stretch, hold as much as we can, try – at the very least – to imagine and promise – all the while – to believe.

Over the years, my mum felt the sharp edge of disability under austerity and still rose to meet life with more fight, ingenuity and generosity than I can properly grasp. She made a mission of multiple sclerosis, busying herself with baking cakes to raise money for the MS Society and abseiling from the Forth Bridge. She found and supported friends through online forums and lobbied Members of Parliament for greater support. Her sense of agency and community ran deep. In 2014, we visited our MP in a canteen in Westminster. She met his posturing with rigour, fanning out pages of research across the table and forcing him to confront what life was like for so many disabled and dying people. She described what her life 18was becoming – trapped, fearful – and what it would