Adrian Barich: as Bryan Cousins joins ranks of those battling cruel MND, let’s also remember the loved ones
This week West Australians learned that my friend Bryan Cousins has motor neurone disease.
The football world reacted exactly as you would expect. Messages of support poured in from former teammates, rivals and fans. People who knew Bryan, one of nature’s great gentlemen, reached out to us.
The diagnosis came down hard. And this isn’t a “shame on me” story, because I’m acutely aware that many people reading this may be carrying heavy burdens of their own.
But to paraphrase Barra from Harper Lee: You never really know what a person carries until life asks him to carry more.
And of course, behind every MND diagnosis lies a quieter story. A family adjusting to a new reality and having conversations no one really wants to have. Caregivers are preparing for a journey they never expected.
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. Professional Hart.
People with different backgrounds, different abilities, different lives.
The one thing they all share is a disease that cares nothing for fame, wealth, intelligence or success. As Daniher often reminds us, “The Beast” does not discriminate.
We know this is cruel. We know there is currently no cure. We know that the disease is progressive, progressing until it imprisons people in their own bodies.
It does not arrive at the door of the person diagnosed with MND. He moves in with the whole family. One partner becomes a full-time caregiver. Adult children become advocates, drivers, managers, and emotional support systems.
The disease physically affects one person but consumes the entire household. And most of the time it happens gradually. One hand becomes weak. Walking slows down. Speech becomes difficult to understand.
Simple tasks take longer. Then one day, family members realize that the things they once took for granted are no longer possible. It’s like holding a coffee cup. Buttoning a shirt. Writing a birthday card. Scratching the itch. Roll over in bed.
Losses are small at first, then snowball. One of the cruelest aspects is that many sufferers remain mentally sharp while their bodies are increasingly failing them.
As with Daniher, the mind and soul remain willing, but the body is not. Families often describe experiencing a series of pains: not one devastating moment, but dozens of small pains. The last time they drove or walked around the block. Last family vacation. The last round of golf. The last belly laugh. The last speech was made in his own voice. This last one must be especially heartbreaking.
Many families keep old voicemail messages because they become valuable recordings of a voice that no longer exists. A simple “Hi, can you call me back please my love” becomes a family heirloom.
Then there are caregivers. We know these things, but we don’t often see midnight repositioning. Breathing machines. Interrupted sleep. Fatigue.
Many caregivers go years without getting a full night’s sleep. They rarely describe themselves as heroes, but they are. When illness comes, love changes shape. Love becomes practical. It is helping someone eat or communicate. Act. Helping someone maintain their dignity. I guess grand romantic gestures are also lost.
Everyday actions become extraordinary. And perhaps this is where the true story of MND lives. Not in the disease itself, but in the people who bear the burden of it.
Partners who learn to use special equipment and put their own lives on hold without hesitation. Children who become caregivers much earlier than expected. Friends who always come.
Families who somehow find humor in impossible circumstances. Sometimes even black humor is good. Talk to MND families and they will tell you that laughter keeps them alive. So is durability. So is love.
You are amazing for those who stand with the thousands of Australians living with serious illnesses. A big round of applause to caregivers who do extraordinary things without needing any recognition.
They are the ones who know intimately that MND robs a person of their ability to do many things. But that doesn’t change who they are. And this does not take away the love that surrounds them. In most cases it reveals this.
Millions of Australians who once knew little about MND now understand the disease because Neale Daniher has chosen to fight it publicly. He has helped raise more than $115 million for research and treatments that won’t come in time to save him but may one day save others. He was a living example of the saying, “He who plants a tree knowing that he will never be able to sit in its shade has begun to understand the meaning of life.”
Maybe it’s the least the rest of us can do Purchase a beanie during the FightMND Big Freeze fundraiser Donate this weekend and help end the fight he started.
