Adrian Barich: as Bryan Cousins joins ranks of those battling cruel MND, let’s also remember the loved ones

This week West Australians learnt that my friend Bryan Cousins has motor neurone disease.

The football world responded exactly as you’d expect. Messages of support flowed from former teammates, rivals and fans. People who know Bryan, who is one of nature’s great gentlemen, have reached out.

The diagnosis landed heavily. And this is not a “woe is me” story, as I’m super cognisant that many people reading this could be carrying heavy burdens of their own.

But to Barra-phrase Harper Lee: you never really know what a person is carrying until life asks them to carry more.

And of course, behind every MND diagnosis lies a quieter story. A family adjusting to a new reality and having conversations nobody really wants to have. Carers preparing for a journey they never expected to take.

Most of us know MND through fundraising campaigns or famous faces: Neale Daniher. Stephen Hawking. Eric Dane. David Niven. Ronnie Corbett. Fiona MacDonald. Roberta Flack. Pro Hart.

People from different backgrounds, with different talents, different lives.

The one thing they all share is a disease that couldn’t care less about fame, wealth, intelligence, or achievement. As Daniher often reminded us, “The Beast” does not discriminate.

We know it is cruel. We know that at this time, there is no cure. We know that the disease is progressive, advancing until it traps people inside their own bodies.

MND doesn’t arrive at the front door of the person diagnosed. It moves in with the entire family. A partner becomes a full-time carer. Adult children become advocates, chauffeurs, administrators, and emotional support systems.

The disease affects one person physically, but it consumes entire households. And it often happens gradually. A hand becomes weaker. A walk becomes slower. Speech becomes harder to understand.

Simple tasks take longer. Then one day, family members realise that things they once took for granted are no longer possible. Like holding a coffee cup. Buttoning a shirt. Writing a birthday card. Scratching an itch. Rolling over in bed.

The losses are small at first, then they snowball. One of the cruellest aspects is many sufferers remain mentally sharp while their body increasingly fails them.

Like with Daniher, the mind and spirit remain willing, but the body does not. Families often describe living through a series of griefs: not one devastating moment, but dozens of smaller ones. The last time they drive a car or walk round the block. The last family holiday. The last round of golf. The last belly laugh. The last conversation spoken in their own voice. That final one must be particularly heartbreaking.

Many families keep old voicemail messages because they become treasured recordings of a voice that no longer exists. A simple “hi, can you call me back please love” becomes a family heirloom.

Then there are the carers. We know about them, but we don’t often see the midnight repositioning. The breathing machines. The interrupted sleep. The exhaustion.

Many carers go years without a full night’s sleep. They rarely describe themselves as heroes, but they are. Love changes shape when illness arrives. Love becomes practical. It’s helping someone eat, or communicate. To move. Helping someone preserve their dignity. I’m guessing the grand romantic gestures fade away too.

Everyday acts become extraordinary. And perhaps that’s where the real story of MND lives. Not in the disease itself, but in the people who carry its weight.

Partners who learn to operate specialised equipment, who put their own lives on hold without hesitation. The children who become carers long before they expected to. The friends who keep turning up.

The families who somehow find humour in impossible circumstances. Sometimes even dark humour is good. Talk to MND families and they’ll tell you laughter survives. So does resilience. So does love.

For those standing beside the thousands of Australians living with serious illness, you are amazing. A huge shout-out to the carers doing extraordinary things without ever seeking recognition.

They are the ones who know intimately that MND takes away a person’s ability to do many things. But it doesn’t take away who they are. And it doesn’t take away the love surrounding them. In many cases, it reveals it.

Millions of Australians who once knew little about MND now understand the disease because Neale Daniher chose to fight publicly. He helped raise more than $115 million for research and treatments that would not come in time to save him, but may one day save others. He was the living embodiment of the saying: “The one who plants trees, knowing he will never sit in their shade, has started to understand the meaning of life.”

So maybe the least the rest of us can do is buy a beanie during the FightMND Big Freeze fundraiser this weekend, make a donation and help finish the fight he started.