MND: Are there three crueller letters?
Next week is Brain Awareness Week. Hawke’s Bay Today editor Chris Hyde shares his story of dealing with a rare and brutal motor neurone disease diagnosis in his family.
Now and then I get furious at the way Dad is dying on me. Motor neurone disease has already whipped away his voice, the one that sang Beatles songs so delicately, and replaced it with a dribble. Eventually, it’ll come for his limbs and freeze them tight.
I think in far too much detail about the plight that awaits him when he is unable to move.
Despite it being a disease of the brain, MND’s last cruel gift to him will be that, even as it imprisons him in his own body, it’ll never come for his mind. He will likely — drugs aside — remain sane and alert to the end.
And now and then I think about his genes. The ones that I, as his son, also have.
There’s a 10 per cent chance the gene that caused Dad’s MND is hereditary. The awful reality is that his plight could be mine one day.
It made for a hazy week when my family told me.
It had been months and months of trying to find specialists to tell us why Dad had developed a slur.
In the end that was a boxing match with the health system that ended in a 12th-round knockout for us.
It didn’t matter how calm Mum’s voice was through the tears.
I immediately started swallowing more than I ever had in my 30-odd years on Earth. The next day my fingers stopped working properly. They were disconnected, frozen, sore.
There was nothing wrong with me that week, just my emotions manifesting MND symptoms.
Did you know you can take a test to see if you have the gene? What a hoot. And at the end there’s a 90 per cent chance it’ll ease your mind completely. Fantastic!
But if it doesn’t, well, would you want to know if you had a stick of dynamite inside you, its fuse slowly ticking down?
It’s been 18 months since the diagnosis and I’m still not sure. Knowing you have it brings the benefits of early interventions, but it’s heavy — really heavy — to contemplate.
Now and then I’ve tried to write about how f ***ed this all is.
I’m in a position to raise awareness of what MND is. With just a few hundred people a year diagnosed in New Zealand, it’s still rare enough to be misunderstood.
So I should write. I have a platform and I should use it to educate people on the issues.
Dad’s care has been incredible since his diagnosis. He has regular visits from a nurse, speech therapist, physiotherapist, and occupational dietician to his house.
But there isn’t unlimited cash to make the lives of people with MND comfortable.
The upgrading of homes is a sticking point for many in New Zealand.
Yeah, it’s a cost to the taxpayer. And maybe they will die soon anyway and they won’t use that new wheelchair ramp or elevator for long.
But if motor neurone disease is the worst three-word combination in the English language, then cost-benefit analysis would be the second.
I vowed in the middle of last year to write about families with MND who had heard those two phrases uttered in the same sentence.
I’d driven to a cafe to interview a pair of incredible women left widows by MND in Hawke’s Bay.
The trauma it leaves behind is immense, but both of them were so brave and kind, and doing such amazing things in the community. And they had stories, good and bad, to tell about their experience.
And then the article evolved after I interviewed the brilliant Dr Alan Stanley, who’s trying to help find a fix for this disease from his base in Hawke’s Bay with slow and steady research.
He sees MND as the next cystic fibrosis of the brain disease world — that 20, 30, 50 years from now, we might not have a cure, but we will have a way to make people live reasonable, happy, longer lives.
The international trials that Stanley has brought to New Zealand have decent wait lists. Everyone wants to give them a go, and why not?
Now and then I think about the article those interviews should have delivered — the beautifully crafted feature piece focused on how my home region was tackling MND.
As days ticked into weeks, I just buried it. I couldn’t write it. I couldn’t even listen to the interviews properly.
At night I often sit down and type something out for an hour or so. It’s my thinking place, away from the humdrum of the day. The best lightbulb moments arrive for me about 11pm.
But, I became paralysed by my failure to produce an article about MND. For six months of 11pms, even as the whiff of exciting new subjects grew stronger, I couldn’t open my laptop to write.
Now and then, when I did open it, I found myself writing about the past exploits of me and Dad. He was my teacher and my unashamed best friend growing up.
But I’d stop quickly, as soon as I went into any detail, because it began to read like a eulogy.
And as much as it’s eventually coming, he’s not dead yet.
At the moment he talks to us all through a phone app.
It gives us his thoughts and then
Would you want to know if you had a stick of dynamite inside you, its fuse slowly ticking down?
plays an advertisement for gambling or duty-free alcohol because he, typically, refuses to use one that costs any money.
We get the poignant thoughts of a man without voice, with a 50 per cent-off-at-Briscoes sale after the full stop. There’s a poem in that somewhere.
When he last visited, he moved his fingers along the guitar and plucked the strings. Still good.
I showed him a video of Prince’s live version of While My Guitar Gently Weeps, and he rocked his head back in shock at the solo and then gave me a satisfied thumbs up. Communication.
Every day over video call he praises his two young granddaughters in subtle ways. When the eldest tells him about her basketball, he feigns a shot and then claps at her.
We went to Ta¯ngoio Beach over summer and he stood ankle-deep in the waves with her, holding her hand as the breakers rolled in. It’s a bond I hope she’ll remember.
Perhaps the strangest thing about MND is that one of its first effects is to relax the muscles that we all use to hide the emotions on our faces.
You have no idea how much you are using those muscles, even as you read this sentence, until they’re no longer working properly. And so it came to be that I have never seen Dad happier than in the months after he was diagnosed with MND.
He was playing with his granddaughters. They were laughing. The beam on his face was astonishing.
I hope there’s plenty more of that. Now and then.