With vivid green hair and a quirky sense of humour, many may not realise that local artist and business owner Phil Oakley lives with Multiple Sclerosis.
To mark World MS Day Phil shares his story of living with the disease and how it caused him to follow different passions in life.
Phil’s bright-coloured hair is often the first thing that catches your eye when you meet the Art Plus owner, but as you get to know him you’ll see there is more than one side to the 58-year-old.
Sunday, 30 May, is World MS Day, which aims to connect the community and tackle social isolation for those living with MS through inclusion and acceptance.
Despite the challenges MS has thrown at Phil he remains optimistic about life, and the community he now calls home continues to spark a passion deep inside him.
Living in Sydney during the 1990s as Arnott’s consumer insights manager, Phil said he enjoyed living a lifestyle where he mixed with some of Australia’s highest businesspeople.
He recalls the thrills of such times including presenting to the board of the Australian Stock Exchange.
“I thoroughly enjoyed living in Sydney,” he said.
“Mixing with the lofty levels – I know if I had stayed there I would certainly have been richer, but MS sparked a lot of change in my life.”
Phil first noticed there was something amiss in the mid-90s, when he hopped into a hot bath but his left leg had chills and felt cold.
At first Phil said the doctors couldn’t diagnose the problem, as this symptom, like many MS symptoms, was not constant and disappeared.
He said a short time later a “classic” MS symptom known as Lhermitte's appeared, and Phil knew there was something going on.
“My second symptom was when I put my head forward and there would be a tingle down my spine,” he said.
“I guess, lots of little bits and pieces started to show, and I knew deep down it was MS and this was 25 years ago.
“I was officially diagnosed with MS about 14 or 15 years ago.”
From highflyer to Bundaberg artist
Phil made the choice to move from Sydney, and leave his high-flying career, to take up a slower pace living in Bundaberg, where he could grasp the opportunity to be his own boss and adjust his lifestyle to suit his needs.
Now, he and wife Marlies run the boutique Art Plus store.
Their passion for creativity flows into the community as Phil is also the Bundaberg Art Prize president, and they are both heavily involved in the local art scene.
Phil recalls the day he found out he had the disease that affects the central nervous system, and how, initially, he kept his MS a secret.
“It was a weird situation; I had a good job in Sydney, Marlies had applied to go to the National Art School,” he said.
“But the day I was diagnosed – Marlies found out she was rejected from art school, and I couldn’t tell her I had MS and break her heart even more.
“But in a bizarre coincidence later on, someone dropped out and she got in, and that’s when I told her, and I guess through Marlies I started to learn about art.”
Explaining MS to others can be a hard situation for Phil, as many people don’t know much about the disease with no known cure.
“A major issue with MS is that it’s hard to explain; it’s an illness people aren’t aware of,” Phil said.
“If people ask me sometimes, I think ‘oh bugger now I have to draw some diagrams of electrical wires and how the wires misfire to explain it’.
“It can be hidden from most people – some people have it and others don’t know.”
Living with MS on a daily basis
According to MS Queensland the term Multiple Sclerosis means many scars and refers to the damage caused to the nerve impulses within the brain, spinal cord and optic nerves.
It is a highly variable condition and the symptoms of multiple sclerosis depend on which areas of the central nervous system have been affected and where the scarring has occurred.
There is no set pattern to MS and everyone with MS has a different set of symptoms, which vary from time to time and can change in severity and duration – even in the same person.
For Phil living with MS gives him constant nerve pain, and he said his feet feel like they are on fire all of the time.
He has trouble lifting his right leg and with walking, and he said he has even been mistaken as a drunk when staggering to his car.
“I have okay days and I have days where I am exhausted,” Phil said.
“I can be fairly lively getting out of the car, but when I return and I am exhausted I walk like a drunk person, especially if I don’t have my stick to help me, and people are concerned with that, I think, as they stare.
“It’s a progressive disease, with various versions.
“You can be struck down for three-to-four weeks at a time, then bounce back to a slightly less capacity than before. Mine is a gradual decline.”
As a fairly upbeat person, Phil said he sometimes thought about what he could have achieved if he didn’t have MS, but perseverance was key to living now and he enjoys life in the Bundaberg Region.
“I struggle with writing as my fingers are numb; fine motor work is difficult – I had trouble with the laces of the new shoes I bought recently, but I persevere up to a point,” he said.
“When I was younger I loved playing soccer – there was nothing really wrong with me – I was fit and healthy.
“I think it was 12 years ago that I was able to play soccer for the last time.
“But, I have now thrown myself into the art world.
“Sometimes health can make you do something different, change your career, and you just have to adjust.”
Council will show support for locals, like Phil Oakley, who are living with MS by lighting the fig trees on Walker Street red.
Many other significant landmarks across Queensland, including Brisbane’s Storey Bridge, will also light up red in celebration of World MS Day.