Ben Oakley is a young Aussie who unapologetically breaks the law twice a day to fight an illness so fearsome that it almost destroyed him.
At 17, he fell victim to a one-in-a-million disease that strikes the nervous system, known as Stiff Person Syndrome.
It relentlessly shocks the body with “Taser-like” pain and progressively stiffens the muscles in the spine and legs.
Oakley, from Wollongong south of Sydney, had just finished year 10 at a Catholic high school when his life’s trajectory was thrown violently off course. Up until then the go-getter teen thought nothing of running half marathons or taking part in charity bike rides.
His plan was to join the navy and work in border control or become a racing driver. “I’ve always loved speed ... I remember one year in the City to Gong bike ride when I reached 110km/h heading down through the Royal National Park — it was awesome!’’ he recalls.
But on November 21, 2012 everything changed while returning from a bike ride when he collapsed in agony on a neighbour’s front lawn just metres from his own house.
“It felt like somebody had shoved a knife into my back and I could barely breathe ... my parents came rushing out of the house when they heard my screams,’’ says Oakley.
The next day, feeling fine, he left for school but within a few hours he was again writhing in pain. It progressed to what would become regular violent spasms and sky-high temperatures requiring the help of three ambulance crews.
It took nearly a year before the family got the official diagnosis, the delay due mainly because the incurable condition is so rare, and Oakley didn’t fit the over 30 age profile.
“I think my lowest period was the two months spent in hospital not knowing what monster had invaded my body,’’ recalls Oakley.
“It was even harder on my parents (Caroline and Michael) who had to witness it all and at one point thought they would have to bury me.’’
Oakley, who is believed to be the youngest person diagnosed with SPS in Australia, is fighting back with drugs, but not the type prescribed by doctors.
“I started taking medicinal cannabis oil twice a day eight months ago when conventional medicine did practically nothing for the pain and made me fuzzy in the head,’’ says Oakley now 20.
“In desperation, my parents, who are former nurses, did a lot of research on medicinal cannabis,’’ says Oakley.
“Initially I said ‘no’ but it was the best decision ever it’s been a magic remedy that reduces my pain levels to the point where life is more bearable.”
“I can now leave my wheelchair with a stick and walk up to 900 metres a day when before I couldn’t walk to my own bathroom without becoming breathless.’’
Oakley thinks the ordeal could have been made easier if medicinal cannabis had been readily available and prescribed from the start.
State and Federal governments are talking about trials but Oakley is fed up.
“Government needs to pull its head out of its a*** and make this legal. It’s taking too long when it’s been proven to help,’’ he says.
He now has a promedicinal cannabis Facebook campaign Roll on Ben Oakley which has attracted thousands of supporters including Federal Assistant Shadow Minister for Health, Stephen Jones.
“Ben is an inspirational young man,’’ says Jones, “I’ve never asked him where or how he gets the cannabis but people shouldn’t have to interact with criminal gangs to buy what is essentially medicine.’’
Despite everything he has been through, Oakley has never lost his plucky spirit and determination to win back some of his hard-earned physical fitness.
He has repeatedly proved that amazing moments in life are there for everybody regardless of circumstances.
On his 18th birthday Starlight Children’s Foundation sent him to Bathurst where he met his idol Craig Lowndes, a six-time winner of Australia’s most prestigious motor race, the Bathurst 1000.
“Dad and I now go regularly and on our trip there last year I looked at that 6.2km track and thought ‘I’m doing this’ and I did with Dad helping to push,’’ says Oakley.
“It’s pretty steep but the massive blisters were worth it,’’ he adds with his signature toothy grin that is just about tattooed to his face.
His plan now is to get a university education, continue working out at gym to maintain muscle strength and lastly, to start driving again.
One of his biggest disappointments since diagnosis was the suspension of his provisional license on medical grounds.
“I love driving so much that during my year on L’s I did 300 hours which is nearly triple what’s required,’’ says Oakley.
He got his licence back just recently to top off a very good year.