As Long as There is Light, There is Life
March 12, 2026
Robyn Pryor didn’t set out to write a book. In 2022, when ALS (known as motor neurone disease (MND) in New Zealand) forced her to resign from teaching high school English at 58, she enrolled in a distance learning paper at Massey University, New Zealand, to “occupy her brain”.
Her study ignited a passion for creative non-fiction, which led Robyn to graduate with a Master of Creative Writing with Distinction. In 2025, she published a portion of her master’s thesis that explored her experience of living with MND.
“Writing gave my days purpose and became a kind of therapy for me – a way to process what I was going through, especially after I lost my ability to speak,” says Robyn.
This piece is a beautifully crafted series of profoundly honest personal essays that chronicle the physical challenges and bureaucratic frustrations of the disease, alongside a story of hope, gratitude, love, and loss. Robyn acknowledges that each person’s experience of MND is unique, but she hopes others find value in reading a true account just as she did when she was first diagnosed.
“Early in my diagnosis, I read a few memoirs from the Motor Neurone Disease NZ library, which helped me learn about what others had gone through. Friends who have read my book have said it helped them understand some things about living with MND that they didn’t feel brave enough to ask me,” says Robyn.
Robyn’s poignant writing takes the reader on a sometimes-confronting, emotional, insightful, and tender journey peppered with laugh-out-loud humour.
“When I began to share my diagnosis with others, I realised how little is known about MND. Many people had never heard of the disease. Some wished me a speedy recovery; one assured me I’d be walking properly again soon,” recalls Robyn.
“I just want more people to be aware of the disease and the challenges that come with it. And maybe give more generously to speed up the search for a cure.”
In the meantime, she refers to Clare Madge’s term “living-dying” to convey the complex duality of living with a life-limiting disease. She says it forces her to make the most of each day, to enjoy what she is still able to do.
“And as long as there is light, there is life. Right now, I choose living, not dying,” says Robyn.
Submitted by Louise Blockley
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