Julie Casson traces her husband Nigel's true-life journey from diagnosis of motor neurone disease to his joyful decision to take control of his death
A memoir of a family living with motor neurone disease
'A searingly honest tale of love, life and death' - Sarah Wootton, Dignity in Dying
Die Smiling: A Memoir: The Sorrows and Joys of a Journey to Dignitas by Julie Casson is an unforgettable, deeply human non-fiction memoir that follows one family's path through motor neurone disease (MND/ALS), enduring love, and the search for dignity, autonomy, and end-of-life choice.
When Julie's husband, Nigel, begins to lose control of his speech, the couple are propelled into a baffling medical maze - appointments, tests, and the creeping knowledge that something serious is unfolding. The devastating moment arrives: Nigel is told he is believed to have motor neurone disease, "life-limiting" with "no cure." What follows is not only an intimate portrait of living with terminal illness, but an unflinching account of what it means to love someone through progressive loss - voice, movement, independence - and still fight for joy, humour, and meaning.
Written with candour, elegance, and sharp-witted warmth, Die Smiling is at once a caregiver memoir, a story of family resilience, and a compassionate exploration of palliative care, hospice realities, and the emotional labour of long-term caring. Julie takes readers behind the scenes of everyday life with MND: the practical challenges, the shifting relationships, the private grief, and the fierce tenderness that can exist alongside exhaustion. It is also a memoir that insists on seeing the whole person - Nigel's character, his humour, his determination, and the way laughter can survive even when circumstances are bleak.
Central to this true story is the question of control. Nigel's belief in choice becomes a guiding force, leading to the decision that the family will travel to Dignitas in Zurich, Switzerland-a name often surrounded by myth, and here described plainly and thoughtfully. Julie clarifies that Dignitas is not a clinic; it is a not-for-profit members' society supporting "self-determination, autonomy and dignity." As the administrative steps intensify and the date approaches, Nigel's motivation is heartbreakingly simple: he wants to die while he is still himself - "while I can still smile."
The final chapter of this journey is both intimate and startling in its ordinariness: planning, travel, a confirmed date - 25 April -and the family's last day together in Switzerland. When the end comes, Julie records it with clear-eyed restraint: "Just before noon. Swiss time."
