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On The Table Read Magazine, “the best book magazine in the UK“, Julie Casson shares the experiences with her husband Nigel’s motor neurone disease that inspired her to write her memoir, Die Smiling.
Written by JJ Barnes
I interviewed Julie Casson about her life and career, why she chose to write her memoir, Die Smiling, and how her husband chose to handle his motor neurone disease with humour and positivity.
Tell me a bit about who you are.
Sadly, I am a widow. But happily, I got to share forty-two fabulous years with Nigel – my funny, joyful, incomparable husband, soulmate and best-friend. I am mum to a charismatic son very much like his father and two delightful daughters, also very much like their father, with a tiny bit of me chucked into the pot. I am a proud grandma to two grandsons and two granddaughters, all vigorously forging very different pathways in pursuit of their own destiny. Finally, I am a ridiculously doting great grandma to a wonderful great-granddaughter, whose primary purpose in life is to sprinkle joy into the lives of all others.
I live in the stunningly beautiful seaside town of Scarborough, North Yorkshire, with my beloved miniature schnauzer: Bodger. I say ‘my’ – he owns me, not the other way around.
I spent 23 years at working at the local FE College, fulfilling various roles, evolving from teaching to a host of management posts. I hold a Teacher’s Certificate in Education and an MA in Management from the University of York.
My career ended unexpectedly in 2007, when my husband, Nigel, was diagnosed with motor neurone disease. I became his primary carer. Nigel’s positivity, irrepressible humour and pragmatism throughout his illness, and his determination to take control of his death, is the inspiration behind the memoir Die Smiling.
I am a member of the Motor Neurone Disease Association and Dignity in Dying. It is my greatest wish that Nigel’s story contributes to changing the law on assisted dying in the UK.
When did you first WANT to write a book?
I have wanted to write a book for as long as I can remember.
When did you take a step to start writing?
I have always loved to write. When the grandkids were small, I would invent adventures where the grandkids played the heroes. I’ve penned several poems, mainly presented as framed gifts to mark special occasions in my family’s lives. I assume they like them as the words still grace their walls, even though one of them is hanging in the loo. Around thirty years ago, in the pre-digital age, I wrote a children’s book called The Land of Lost Money. The 90,000-word tome never got to do the rounds of publishers as I landed a full-time job at the local further education college and The Land of Lost Money got lost in a cupboard.
In 2001, when Nigel was ill with motor neurone disease, I started a blog. Partly as an escape from everyday existence and partly to search for the humour in it. I also completed a Creative Writing Course with the University of York. As Nigel’s condition worsened, I shared some of his experiences in blogs with our friends on Facebook. Many readers made positive and encouraging comments – and said, ‘You should write a book.’ This would later inspire me to develop those posts and do exactly that.
How long did it take you to complete your first book from the first idea to release?
4 years.
What made you want to write Die Smiling?
I believe none of us realise what we’re truly capable of until we’re faced with unimaginable challenges.
My husband Nigel dealt with the devastating impact of MND with his crazy, incredible humour, and unbelievable courage. Never a moan, never a ‘poor me’, never a ‘life’s not fair.’ That was not his style at all.
What was his style – when the time was right – was to take control. His determination to take control of his death, to deny MND the victory of killing him and die while he could still smile was humbling, astonishing and of course, inspiring.
And that is what inspired this book.
What were your biggest challenges with writing Die Smiling?
1 The beginning.
It’s vital that the beginning is right. You get a couple of sentences at most to grip your reader. It’s got to be right. If not, those very sentences will force them to close the book.
There must have been at least five different opening chapters – all of which got binned. Too long, too short, irrelevant, boring, you name it.
It was impossible for me to get the beginning right, until I’d finished the whole book.
Then it seemed obvious. I had to start the book at the end. At the point where Nigel has just died.
I remember at the time, Craig saying, ‘Don’t look back.’ And I looked back. And that was the place to start.
I wasn’t just looking back at Nigel’s body at the Dignitas house in Zurich. I was looking back at everything that had brought us here. Everything that had happened over the last 10 years and everything that had driven Nigel to make the choices he made.
It seemed to me, to not only introduce the story, but also, to complete it.
2 It was an all-consuming, emotional, often frustrating undertaking – especially when I’d spend 8 hours at my laptop and produce nothing more than a single sentence! The hardest thing was sticking at it.
It was difficult to decide what memories to put in and what to leave out and how to make the scenes sing.
What was your research process for Die Smiling?
My previous blogs were a huge resource for the book.
I asked family members to share their memories and made lists of theirs and my own.
Read as much as I could of the genre and about how to write a memoir.
How did you plan the structure of Die Smiling?
When I started writing this memoir, I was consumed by questions. What to include? What to leave out? How to structure it? How to make the scenes sing? I believe that whatever the question, I’ll find a book to point me in the direction of the answer. The first of many books I studied, was Patti Miller’s Writing True Stories. This practical resource proved invaluable in shaping my memoir. Then, the volumes of The Writer’s Lexicon, by Kathy Steinemann, forced me to edit, edit and edit until I wanted to scream. But the grind resulted in a polished manuscript. These were just two of my helpers. My bookshelves now house an impressive collection of volumes which form my toolkit.
When I thought my manuscript was complete, I paid for a professional from Faber and Faber to assess it. The advice I got in return, particularly regarding the structure, was invaluable. The manuscript vastly improved as a result.
Did you get support with editing, and how much editing did Die Smiling need?
Not much. I was a very critical self-editor and worked through the three volumes of Kathy Steinemann’s Writer’s Lexicon.
The book also benefitted from the publisher’s proofreader and then many further read throughs.
What is the first piece of writing advice you would give to anyone inspired to write a book?
Read as many books as you can in the genre that you hope to write. Then read ‘Write it All Down’ by Cathy Rentzenbrink.
Then, put pen to paper and don’t give up.
Can you give me a hint about any further books you’re planning to write?
The children’s book (Ages 8 – 12) The Land of Lost Money is no longer lost in the cupboard and is currently enjoying a thorough make-over.
And, finally, are your proud of your accomplishment? Was it worth the effort?
Having a book published feels like an incredible achievement. It’s the ultimate reward for 3 years of hard slog.
Very much worth the effort. Shaping the events and memories of those ten years – many of which – especially Nigel’s appalling jokes – would come to me when walking Bodger – and building it page by page, chapter by chapter, was immensely rewarding.
But most rewarding of all is getting feedback from people who have read Die Smiling and they tell me they were deeply moved. That it made them laugh, made them cry and feel they came along on the journey with us. Also, how the book has been an enormous help to those who are going through similar things, and how it has given them much more insight into living with a terminal illness and the entire Dignitas process.
I sincerely hope, when reading Nigel’s story, readers will come to understand why Nigel did what he did and appreciate what drove him to make the choices he made, and to embrace and endorse his right to do so.
Nigel’s story sits in the very centre of the debate on assisted dying. It could not be more topical. With the contributions of celebrities such as Prue Leith, Esther Ranzten and the late Diana Rigg, together with Nigel’s story and others like it: the Dignity in Dying campaign has a real chance to change the law in this country.
Pop all your book, website and social media links here so the readers can find you:
Kindle: https://amzn.to/3xHaFcs
Paperback: https://amzn.to/4aFTQ02
Apple Books: https://apple.co/3Yu1abW
Haythorp: https://haythorp.co.uk/products/die-smiling-julie-casson
Bookshop.org: https://uk.bookshop.org/a/1169/9781914487262
Book2Look – give people a sample: https://www.book2look.com/book/tQtbKGhAnT
https://www.facebook.com/julie.casson1
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