Still Time: Reflections on love, loss and life

Robyn Pryor didn’t set out to write a book. In 2022, when motor neurone disease (MND) forced her to resign from teaching English at 58, she enrolled in a distance learning paper at Massey University 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 Still Time: Reflections on Love, Loss, and Life, which explores 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.  

Still Time 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 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.  Regardless of your connection to MND – a carer, a person newly diagnosed with the disease, a medical professional – you will finish this thought-provoking read more holistically educated about the disease.

“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 the reader to Clare Madge’s term “livingdying” to convey the complex duality of living with a life-limiting disease. She says it forces her to make the most of each today, 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.

Excerpts from Still Time

I missed the call. I’d been teaching period 3, and with exams around the corner had offered a lunchtime tutorial. Ngugi wa Thiong’o, Petals of Blood. The voicemail message simply said, “Dr Hill has had a 5pm cancellation this evening. Let me know if you would like it.” It was a Friday.

Prepared, but not prepared at all.

My husband, Rob, and I arrived separately. He was waiting in the carpark when I arrived. We were both early. We’d been through this before in 2020 when we had sat together in Dr Rose’s office and been told that Rob had cancer. We’d had the dress rehearsal and knew the script. But I had forgotten my lines.

Prepared, but not prepared, because nothing at all prepares you. “Motor Neurone Disease,” she said. “We’re worried about how quickly it’s advancing.” I watched her words swirl in the air and tried to catch them, but they drifted to the floor. “You might want to consider giving up work,” she said. “You’ll need a wheelchair,” she said. I wanted to leave them there to be swept up and disposed of by someone else, but her words were now my words and I had to try to make sense of them. “It’s untreatable.”

———–

My leg had been weird for a while, but I had either ignored it or been distracted by more pressing matters, like Rob’s cancer and Covid-lockdowns.

I heard it before I felt it. As I walked, I could hear the slap, slap, of my right foot, like a rubbery jandal tapping on a lino floor. I heard it through the hush of the community taking a breath from their locked-down lives to thread their way around carless streets on their daily walks. The slap turned into a limp, barely perceptible at first, but then it became more pronounced so that it was an effort to lift my right leg up the stairs. Step left, swing right. I was Mr Teabag from The Ministry of Silly Walks but without the bowler hat.

It took two years and four months to be diagnosed. For two years and four months I limped from specialist to specialist telling and re-telling my symptoms, dates, medical history. For two years and four months I approached each appointment with a mixture of hope and apprehension, each ‘normal’ result filling me with frustration and relief. Of course there was nothing wrong with me. In fact, I was starting to believe my limp had simply become a habit like my childhood nail biting and hair sucking. Looking back, I should have realised that each ‘normal’ result was an indication that things weren’t normal at all.

I fell a few times, but kept that to myself, convinced that I was just off-balance or that the cleaners had over-polished the concrete floor in the cafeteria. Then, just before Christmas, I tripped and fell in the mall fracturing my fibula. It was clear that something more serious was going on.

I did my own research. Google told me I might have Motor Neurone Disease (MND) or Amyotrophic Lateral Sclerosis (ALS), its American equivalent. I didn’t want to believe it, but Google kept giving me the same response to my ceaseless questions… 

Still Time: Reflections on love, loss and lifecan be purchased through www.copypress.co.nz. It is also available as an ebook through Amazon or mebooks.