Finding laughter and joy in the darkest of places
A shock medical diagnosis for his father started Sam Stuchbury and his family on an unwanted journey that nevertheless taught them valuable lessons.
Tomorrow’s a new day. You can’t stop the waves of life, but you can learn how to surf. Clichés often contain a kernel of truth, which is probably why they gain traction in the first place. And over the past 18 months they have featured in my life more than ever before. Gone, but not forgotten. Their memory lives on. Rest in peace
On October 7, 2022, my father, Kevin Stuchbury, was diagnosed with motor neurone disease (MND), aged 59. He died 14 months later. But he faced his fight with this brutal disease with such kindness, strength and humour that it’s a story worth telling. After Dad’s passing, MND NZ reached out to me to provide a perspective on dealing with MND as a son, not a patient, offering any advice that might be useful to a younger connected family member. So here we are.
Our family has invariably turned to humour to deal with challenges, with my dad leading from the front. However, this became much harder to do after that October call from my mum. In the 18 months before the diagnosis, Kev had experienced a tickling throat after eating, and some light tremors, which were put down to allergies.
Kev was a big guy. Over 1.83 metres tall and as solid as a rock. He was affectionately called Homer, after Homer Simpson – so when coughing meant putting away a donut of flaky pastry became too much to handle, eyebrows were raised. On reflection, I suspect Dad knew something was wrong.
With a cocktail of allergy medications making no difference, and a trip to an ear, nose and throat specialist providing no answers, he was referred to a neurologist. That’s when our lives changed. It took just a 20-minute consultation for our family’s world full of life to buckle at the knees.
“Kevin, I am 95% sure you have motor neurone disease,” the neurologist explained. Later, Mum told me that after Dad left the room the neurologist told her that Dad had two to three years left. The doctor began to cry, then hugged my mum. “It never gets easier.”
The thing with MND is you’re fighting, but not really fighting for a win. There is no predictable path, as each presentation is different, so you’re overwhelmed by unknowns. You have to ride the predictability of the outcome, while accepting the unpredictability of the journey. This may sound unhelpful, but it is an important truth.
In those early days, knowing how to exist yourself in this new warped normality was difficult. I went fishing with a friend just a week after the diagnosis. When we got home, I looked at the photos. There I am on a kayak, holding a snapper, smiling. I remember wondering, “Is that okay? Should I be allowed to do that right now?” Behind me in the photo is a rainbow, a legitimate rainbow. Nature saw my legal snapper as a magical moment, to be celebrated by a pot of gold; I saw it as an extremely confusing keeper.
I now see such moments of escape as crucial to our journey. It was hard to do something for yourself. At the time I sometimes felt guilty, but now I see it as healing. The day after Dad’s diagnosis, I began to exercise, somewhat obsessively, every morning, without fail. This was the single most important ritual for my mental health during the hardest 18 months of my life.
Mum and Dad met at 15 in the UK. They went to school together, childhood sweethearts. We didn’t come from lots of money, or a particularly beautiful place — south-east London. But they made life beautiful. Camping, a house of laughter, love and somewhat questionable taste .... To this day we have Live. Laugh. Love. on the wall at our family home.
Their relationship just worked, and through Dad’s MND journey it only deepened. It was hard to see Dad change, but equally hard to see Mum bear the weight of caregiving and loss.
However, Mum has a directness and openness. Throughout the journey this was really important, and it was okay to laugh. Even when Dad began to lose strength in his legs, and had fully lost his voice, they still went camping. One day I joined them and went for a walk with Mum. “Have you thought about the funeral?” she asked.
“A bit early, but mmmm, yeah a bit,” I replied.
A foodie, Mum continued: “I was thinking about a cold meat buffet, and about what I would say.”
“Let’s wait a few months before we dig into the funeral buffet plans, eh? It feels a bit premature.” I knew Mum was half-joking to get a reaction out of me, but probably also mulling over whether to go with sausage rolls or mini savouries. Probably both.
These open conversations were invaluable, if sometimes a little odd. My partner Hilary’s unwavering openness and support also gave clarity to confusing emotions. But she was losing a father figure, too; Hils was close to Dad. She knew what I was thinking before I said it, and we were able to share our deepest concerns without judgment. It brought us closer, even when we thought we couldn’t get any closer.
We protected Dad from the more confronting conversations, though. He chose not to discuss the end of life, but focus on the days he had. We respected that.
Dad’s strength throughout the illness will stay within me forever. I guess you never really know how people will respond to a diagnosis; we were lucky with the inner balance Dad found. Of course, he had down days, but after the initial shock he showed optimism, humour and strength. Each new operation, medication or device was just another milestone to overcome; each new doctor another audience for a joke; each new day a new day to embrace. It was gutwrenchingly admirable.
He told Mum he managed to compartmentalise and not think about the bad stuff that much. It is what it is. And we let him choose how he wanted to deal with it; we would support him whatever.
After having a PEG installed — a feeding tube inserted directly into the stomach to prevent choking and weight loss — Dad