Ausnew Home Care | When Colin's multiple sclerosis drives him 'quietly bonkers', the lure of the ocean is what saves him

When Colin's multiple sclerosis drives him 'quietly bonkers', the lure of the ocean is what saves him

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When Colin Chandler surfed the waves of Lennox Heads in his younger years, dolphins would frequently appear alongside him.

It happened so often, he earned the nickname 'Colphin' among his mates.

The moniker, merging man with marine mammal, couldn't be more apt for the surfer/painter who sees the sea as an extension of himself.

"When I'm painting waves — I'm hearing the ocean," Colin said.

"I'm hearing the lap of the water underneath my surfboard. I'm feeling that lift as the swell comes up. I'm seeing the fractured light as the sunset comes — that golden glow through the middle of the wave."

Colin started painting as a toddler, and surfing as a teenager.

All types of active adventures followed.

From mountain biking and hiking in remote areas to free climbing — they've all accompanied Colin through an international career in tech start-ups and life as a husband, father and friend.

Colin Chandler surfing in the Maldives. Ausnew Home Care, NDIS registered provider, My Aged Care
Colin surfing in the Maldives.(Supplied: Colin Chandler)

The lure of the ocean always loomed the largest though, and over the years, he's surfed the waves of Australia, Indonesia, Costa Rica, Mexico, the Maldives and the US.

Now at the age of 66, living at idyllic Moffat Beach on Queensland's Sunshine Coast, the ocean has become a refuge, and Colin's saviour.

Living with 'a cunning thief'

In 2015, he was diagnosed with primary progressive multiple sclerosis (MS) — a degenerative nerve disease that's gradually taking away Colin's ability to move.

"MS is like a cunning thief. It steals the things that are very precious and takes them away and puts them somewhere where you can no longer reach them," he said.

"These things that are important to you and in many ways define you — they slowly disappear and evaporate.

"It's not something that you can adjust to or resolve overnight."

Colin in his wheelchair on the beach with his surfboard
Colin was diagnosed with MS in 2015.(ABC News: Mark Leonardi)

He's had to give up his motorbike, his mountain bike, and now gets around home on a motorised scooter.

He tries to shrug off the pain as a muscle spasm shoots down his back, and frequently uses his hands to manoeuvre his legs into more comfortable positions.

Saved by the sea's 'vibrant pulse of life'

In Colin's art studio, amid the jars of paintbrushes and bottles of ink (complete with 35 different hues of blue), a spiderman figurine with moveable joints is perched on a shelf.

Its arms are outstretched in an aggressive gesture, with the middle fingers on each hand pointed up.

"I do that when I'm having a bad day," Col explained.

"I have spent my life being blessed with being able to go and do a lot of things.

"Sometimes my hands start shaking so much that it puts a whole new texture in the wave that wasn't meant to be there. Those things frustrate me.

Colin's hand with a paintbrush paints a wave.
The degenerative nerve disease can impact Colin's painting.(ABC News: Mark Leonardi)

"The thing that saves me every time I feel myself spiralling a little, is that vibrant pulse of life that comes from the sea.

"I'll often be out in my studio pottering away and the MS will be driving me quietly bonkers and I'll get into the wheelchair and go down to the ocean and just look — even if I can't get into it."

Getting back into the water

Rundy and Col look at the ocean.
Surf coach and friend James 'Rundy' Ball has been helping Colin get back on a board.

Colin is still able to surf lying down when someone supports him.

That someone is often James 'Rundy' Ball.

"I've known Col for about two years. I started off as a support worker and we've become very close friends," Rundy said.

"I started surf coaching for all abilities. That was one of the things that Col wanted to bring back into his life — getting back into the water."

"He's a strong paddler but part of the challenge for Col is getting from the car park to the water.

Colin stands up on surfboard
Colin is still able to surf with the help of his friend, Rundy.(ABC News: Mark Leonardi)

"Today he caught a wave for the first time in eight months — and that's going to stay with him for a long time and for myself as well.

"I'm not allowed to use the word inspirational because next time we go out surfing together he'll probably push me under the water, so I'll just say that he's very determined."

These days, Col gets joy from watching other surfers ride the waves, although it wasn't always the case.

"I'll be frank and say there was a period when every time I saw guys out there getting perfect glassy waves and barrels, I'd be grinding my teeth and growling," he said.

Colin painting in his studio
When Colin paints the sea, he feels anchored in the ocean and the present. (ABC News: Mark Leonardi)

"The fact that I can come home and paint — and this sounds vaguely nuts but it's true — as I'm painting away, I'm in the wave.

"These beautiful perfect shapes that kept popping up out of the ocean just absolutely absorbed me.

"It probably explains why I was never a champion surfer, because I was so busy looking at the inside of the waves.

"Every wave is different. Every shape is different. Every colour is different."

Buyers of his artwork seem to sense his oneness with the ocean too.

A painted green wave.
A painted wave featured on an album cover for the Beach Boys. (ABC News: Mark Leonardi)

Perhaps that's why a digital image of one of Colin's paintings was chosen by the legendary pop band the Beach Boys as a backdrop for their world tour in 2014.

"The feeling of seeing your art behind a famous band like that — is bizarre. It's surreal," he said.

Riding life's highs and lows together

Colin's wife Cheryl shares his passion for the sea.

"Just breathing in that salt air — just being near the ocean and the bird life — it's very, very soothing," she said.

Her serenity counters his intrepidness.

The yoga teacher met her surfer husband-to-be at the Woombye pub in 1986.

She was dancing by herself when Colin's mate said to him, "There's the girl you're going to marry."

Just before the wedding, Cheryl's mother told her, "Life will never be boring!"

And she was right.

Cheryl smiles.
Colin met his wife Cheryl in 1986.(ABC News: Mark Leonardi)

Colin and Cheryl's life together is a partnership. They ride every high and confront every hurdle hand in hand.

"I think just having resilience from being a couple for so long and always having that cup of tea and sitting down and saying, well, how are we going to get around this one? How are we going to climb this mountain?" Cheryl said.

When they consider the health struggles Colin has faced in recent times, each becomes emotional when they speak of the other.

"Cheryl has been with me every step of the way," Colin said, holding back tears.

"She has certainly made living with a disability a lot more joyous.

"You know the word 'carer' is thrown around so much, but I don't think it's really understood that the carer is in more of a fight than the person with the condition often.

"It's a bit like — there's a boxer fighting in the ring and he doesn't notice what's happening because his adrenaline is going. But for his family looking on — it's much harder for them."

Cheryl's lip quivers as she thinks about what lies ahead.

"One of the hardest things anyone is faced with is watching someone that you love, seeing them when they're enjoying their life and giving it everything they've got, and then all of a sudden seeing some of those things taken from them," she said.

"It's all about quality of life now and saying yes to things that really matter and having as much family time as possible.

"When you are faced with these crises, it makes you think, 'Well what have I got?' If it's playing guitar or bowling, drill down into it. Make the most of any little gift that you have," she said.

Grabbing hold of the present 

Colin painting a wave.
Colin held an art exhibitions to highlight the impact of climate change and ocean pollution.(ABC News: Mark Leonardi)

When he was first diagnosed, Colin created a spreadsheet to determine what he could and couldn't do, and what he still wanted to achieve.

As well as prioritise family and friends, in recent years he's climbed mountain tracks to raise money for people with MS and held art exhibitions to highlight the impact of pollution and climate change on the world's oceans.

"I've had the great joy of being able to jump around in the ocean for the best part of my life and I want to be able to give back," he said.

While they'll always feature waves, Colin's artwork has evolved over time.

"The MS had made him stay still a lot of the time now. He was very active before and that stillness has brought about an incredible amount of strength and has given him the ability to try and focus in on his painting and bring it out more," she said.

"There was lots of light and colour at the beginning — detail upon detail — and now I think he's going a bit more moody, a bit more bold."

Paint brushes with green paint on them
Painting offers Colin purpose and presence.(ABC News: Mark Leonardi)

While it's hard to know what the future may hold, Colin is determined to grab the present as much as he can.

"The way you see me today will not be the way you see me in two years or five years or 10 years," he said.

"I don't get frightened of the future. I get frightened of being bored. I get frightened of being useless."

"My hope for the future is a life with purpose."


Source: ABC

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