What We Owe Each Other: A Daughter on Her Mother’s Wish to Die With Dignity

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 watercolor 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 whom 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.

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 protestations, 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.

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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 rigor, 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 was becoming—trapped, fearful—and what it would be like for her to die—painful, slow. Outside, her fellow demonstrators rallied on Parliament Square, demanding a change in the law to allow terminally ill people the right to an assisted death. But the laws didn’t change.

“I try hard to live a good life,” my mum printed on a T-shirt, “I’m equally determined to die a good death.” For her, these were two sides of the same coin. As she campaigned and as her health and her circumstances deteriorated, I often wondered whether she’d ask me for assistance, how I’d respond and what the consequences might be. Implicitly, my accompaniment was a promise that I would, by some unspoken means and at some undetermined point, try to help. But “encouraging or assisting the suicide or attempted suicide of another person” is illegal in England and Wales. Any person deemed to be assisting death risks fourteen years in prison. Individuals shoulder a burden of pain and risk because we haven’t taken collective responsibility for the complex questions of how to live and die well.

In 2010, the Crown Prosecution Service released guidelines advising against prosecution where the dying person “had reached a voluntary, clear, settled and informed decision” and where the person assisting was “wholly motivated by compassion.” But tacit decriminalization is a far cry from making sure that assisted dying is accessible, accountable and safe. Writing on medical aid in dying in Canada in 2019, Tina Sikka emphasizes that “much of the discourse justifying the need for and right to medically assisted dying is couched in a neoliberal rhetoric of choice, agency and freedom, which not only forestalls a thorough discussion of inequalities in access and service but also distorts how decision-making happens in context.”

For assisted dying to be socially just, a qualification that has received relatively little attention in a steady stream of newspaper reports and documentaries on the general topic, it must be rooted in “a theory of oppression that is embodied, fleshy, affective and relational.” We must ask: death for whom, by whom, why and how.

Denied a liveable life and a legal right to die, my mum made a choice within and between the lines of the law. A decade after her diagnosis, when she was forty-nine and I was twenty-six, she decided to stop eating and drinking to end her suffering and her life. Her MS symptoms were barely treatable and certainly incurable: severe pain, incontinence, fatigue, the gradual but intensifying loss of mobility, vision and speech. But these medical symptoms were compounded by social conditions: isolation, stress, debt and fear of a future in which she would not be able to live or die in her chosen home. We were caught in a perfect storm.

Her decision broke with the ordinary course of things, suspending us in an interval, a middle space between living and dying. The books unbalanced, we stopped paying the bills, stopped working, stopped living on untenable terms and created a bubble around ourselves, at once protective and compromising. At this temporary remove, I found my way around a new type of work: navigating and advocating; lifting and bathing; checking dosages and picking up prescriptions; paying two lots of rent—hers and mine—as we transformed her home into a hospice. This interval was secret and particular—something between us—but common, too, an exception that exposed a fundamental condition of being a human in the world: we are interdependent, both separate from and reliant upon others.

If an intervention describes the act of stepping in—to save a life, or to hasten a death—an interval describes the intimate work of stepping back, making space and marking time. An interval like this—all its trust, all its risk—poses the ethical question of how to exist together, in distinction and in relation, to remain two. “How do we humans share this cradle, this nest, these surroundings,” Luce Irigaray asks in To Be Two, dancing between philosophy and poetry. “The plants live together without difficulty. And we? How do we share the air?… How do we live together… How is the between-us possible?” This last question is not one of competing autonomies or momentary assistance, but of continuous ethical relation: sharing, enabling, believing, making possible. Our relations to one another are everything, as constitutive as they can be compromising. “We are undone by each other,” Judith Butler writes. “And if we’re not, we’re missing something.”

What has become of us? Disability exposes the structural fragility of social systems. Access to healthcare, social care, housing, food, heat, sleep, leisure time and natural space: each of these fundamental supports are creaking under the weight of capitalism’s crisis, making the space between survival and withdrawal perilously small. Faced with this, there’s nothing inherently dignified about composure and endurance in the face of oppression and disease.

Nothing enviable about holding ourselves together, keeping a stiff upper lip, accepting our lot. People who live within the cracks in the system deserve more and better. We need ways of holding one another in our messiest, most anxious, most vulnerable moments; of observing the interval between our individual and collective selves; of losing control, losing our minds and knowing that we will still be held: “the one, the other, and the air between us.”

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Adapted from Intervals by Marianne Brooker. Copyright © 2024. Available from Fitzcarraldo Editions.