FEATURE: Learning to live life in the face of death
SLOWLY but surely, Wayne Patterson's body is betraying him.
For almost six decades, this lanky lean mass of skin, bones, nerves and muscles served him well, delivering an almost-lifetime of joy, passion, adventure, excitement and achievement.
Now though, this solidly built structure of mortality is crumbling away as the nerves that animate Wayne's muscles degenerate and die.
The father of three concedes with remarkable candour and ease that this is a battle his body cannot win.
Soon he will be a living statue frozen in time by motor neurone disease (MND).
And death will not be far behind.
At best, he has four years left to live. At worst - one, or maybe two.
Sitting outside a popular cafe in Brisbane's CBD, Wayne takes a few moments to gather his words, thinking intensely about how to answer these rarely asked questions that are suddenly coming his way.
He remarks that famed physicist Stephen Hawking was diagnosed with a slow-progressing form of MND more than 50 years ago.
Then he turns the conversation back to his own experience.
"All I'll have left is the ability to breathe," Wayne says softly, his croaky voice barely audible over the wind on this hot and stormy summer's afternoon.
"My senses will be keen, but my body won't be able to move.
"What I fear most is that there might be a depression that sets in when that happens."
At first glance, Wayne appears in the best of health for a bloke well past his prime.
But watch and listen closely and you'll see a few subtle hints that show things are not quite right.
His lengthy stride falters as his feet occasionally refuse to lift off the ground.
He talks as though an invisible weight is pressing on his vocal cords.
"MND is a cruel, terrible disease," he says of the disorder that's also known as "lock-in" because of the way healthy minds become trapped inside deadweight bodies.
"There is no known cause and once you've been diagnosed you have such a short time left."
In April, Wayne will celebrate his 60th birthday.
His wife Lisa, their adult children James, Alexandra and Sarah, and a wide circle of relatives and friends will help mark this milestone with frivolity, laughter, food, wine, music and, of course, plenty of reminiscing.
But MND's dark spectre will be an uninvited guest at the party that will mark 14 months since the neurologist told the former high-flying businessman of his fate.
"I had a very hot sensation up the back of my neck," Wayne says of the exact moment he was diagnosed.
"But immediately after that I had a sense of calmness.
"It was an acceptance of 'If that's the way I'm going to go, I know at least. I can deal with it'."
Coming to terms with the diagnosis was hard enough for Wayne and Lisa, but telling their kids was the toughest moment in their long, happy marriage.
"They knew something was wrong," he says of bringing his children together from across the country for the conversation.
"It was shocking for them … to know there is no way this disease is going to be reversed.
"That it's a one-way trip for their father."
Wayne is a man driven to succeed.
The one-time grease monkey spent his 20s and 30s studying part-time and working full-time so his family would never go without.
Over the years, his career meant his family had to move from town to town, calling places such as Mackay and the Sunshine Coast home until they were able to plant firm roots on the Gold Coast.
With its sun-drenched beaches and its fit and tanned populace, the Goldie is a perfect backdrop for a bloke who believes a strong body equals a strong mind.
But like a thief in the night, MND has stolen Wayne's ability to ride an ocean wave, go for a run or shoot a basketball.
"It's very, very tough to say goodbye to certain things and know you are never going to be able to do them again," he says.
"I look at it very positively because at least I have had the chance to enjoy those things.
"There are so many things in life that I am thankful for.
"MND tends to affect young people - people in their late 20s - and that is very tragic.
"At least I've had a very full and satisfying life."
While the number of things he cannot do increases, Wayne keeps his spirits high by focusing on the things he can - and will - do.
His bucket list, for want of a better term, includes travel, family holidays and, most importantly, "leaving a legacy" for his children and their children.
That legacy involves an imaginary white bunny called Fat Rabbit that lives in a place called Carrot Top Island.
Wayne has just self-published the first in his series of grow-as-you-learn kids' books.
The series serves a dual purpose - helping his grandchildren understand who their grandfather was while raising money for MND research.
"I know I will not have the time to help my grandchildren learn life's lessons," Wayne says of the grandkids he will never know.
"So in order to leave a legacy, I decided to write these books.
"I believe that up until the age of eight, that's all the time we have in terms of developing an active mind and entrenching certain values, and that's what the books aim to do."
The Fat Rabbit character is based on a cartoon-style friend Wayne invented when he was a teenager.
"When I was 15 I first drew that Fat Rabbit on the inside of my wardrobe door and it's stayed with me," he says.
"That rabbit gave me a sense of home and family and safety and security.
"And now I know that rabbit and the children's books will mean my voice will carry on."
Talk of legacy turns to the inevitable conclusion of the disease that is wreaking havoc on Wayne's body.
It's a tough subject to broach but Wayne says he is ready and able to face it head-on, despite knowing he will not slip silently and peacefully from this world to the next.
Wayne says there will be a time when he - like his father before him - may be forced to stop his own suffering.
"My father was a very brave man but in the end the pain was so bad that he took his own life," Wayne says.
"I do know MND is not going to be a pleasant way to pass.
"I've made an agreement with my wife that I will only consider it (euthanasia) when we're at a stage where it's best for everyone involved.
"Until that time comes, I'm going to keep fighting.
"I've got plenty of things I've got to do before I go."
To buy Fat Rabbit and help Wayne raise money for motor neurone disease research visit http://www.carrottopisland.com.au.
WHAT IS MOTOR NEURONE DISEASE
Motor neurone disease (MND) is terminal illness where the nerve cells (or neurones) that control our muscles degenerate and die.
The muscles gradually weaken and waste away until the person can no longer walk, speak, swallow and breathe.
- The mind and senses, however, remain fully operational.
There is no cure and no effective treatment for MND
An estimated 1900 Australians have the disease.
Each day in Australia two people die from MND and two people are diagnosed.
MND is not a disease of ageing and can affect adults at any age, although the peak age of onset is
during the fifties and sixties. Men are affected slightly more often than women.
SOURCE: MND AUSTRALIA