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."
Inhaltsverzeichnis
1. Looking Back 3
2. Death’s Calling Card 6
3. Brenda and Methuselah 15
4. Tests, Tests and More Tests 23
5. The End of ‘Normal.’ 32
6. Life with MND Begins 44
7. Breaking the News 53
8. The Wailing Weeks 67
9. Spain 81
10. The Bucket List 85
11. Where Hope Dies 91
12. Not Ready for This 98
13. Our Spanish Love Affair 103
14. Two Steps Ahead 112
15. MND Declares War 122
16. Don’t Forget Me 126
17. Cost More Than our First House 132
18. Starting to Die 137
19. 22 July 2011 147
20. Every Day is a Bonus 157
21. Don’t Laugh at my Cock 164
22. Toileting Matters 179
23. When the Laughter Stops 191
24. It’s All About Control 203
25. Apply to Die 210
26. The Provisional Green Light 226
27. Last Christmas 238
28. The Recce 247
29. Appointment with Death 264
30. Twenty-five Days Left to Live 283
31. The Goodbyes 295
32. The Hotel and the Doctor 303
33. One More Day 314
34. Nigel’s Cure 328
35. Nigel’s Last Goodbye 345
Acknowledgements 356
