Aussie, 25, forced to break law on black market to beat rare disease

·4-min read

For more than five years, Ben Oakley unapologetically broke the law to beat a rare disease so terrifying it almost killed him — more than once.

The 25-year-old, who suffers from Stiff Person Syndrome (SPS), credits medicinal marijuana with not only saving his life but giving him his life back.

A picture of Ben Oakley in hospital after suffering a life-threatening spasm.Facebook/Roll on Ben Oakley
Stiff-person syndrome (SPS) is a rare neurological disorder characterised by progressive muscle stiffness and repeated episodes of painful muscle spasms. Source: Facebook/Roll on Ben Oakley

Since being diagnosed, he has endured over six hundred life-threatening spasms and lives in constant agony. But he says medicinal cannabis reduces his pain levels to a point where life is bearable.

“Living with SPS has been the toughest challenge, it has been the most stressful, excruciatingly draining and terrifying experience of my life! But, no matter how tough it has been, SPS has not taken my life and nor has it taken my spirit,” he said.

“Medicinal cannabis has not only saved my life, but it has given me a life again and I am eternally grateful!”

Stock image of some CBD oil with a pipette. Source: Getty Images
Medical marijuana has drastically reduced Ben's pain levels. Source: Getty Images

Although medicinal marijuana became legal in 2016, Ben continued to source it on the black market due to high costs, quality and availability.

But two years ago, he had no choice but to begin buying it legally when his supplier, cannabis advocate Jenny Hallam, was arrested.

Jenny Hallam arrives at the District Court of SA in Adelaide, Thursday, November 7, 2019. Source: AAP
Jenny Hallam, who was hit with drug supply and manufacturing charges, walked out of court a free woman in 2019 after pleading guilty. The judge accepted that Hallam was motivated by compassion and spared her from the maximum 10-year jail time. Source: AAP

Calls for medical marijuana overhaul in Australia 

Ben wants to see barriers to accessing medicinal cannabis broken down, claiming it still remains difficult to obtain legally.

“...whether it be lacking from a Government perspective, a specialist or GP, and or a financial side, it’s simply not good enough. We as a country can and should be leading the world but we are lacking behind,” he said.

“I would like to see medicinal cannabis become more readily available for doctors to prescribe, and that when a prescription is filled that there is an array of products available to suit the needs of the individual and most importantly, I desperately want to see products get approval for the PBS making it more cost effective for those who desperately need it but can’t afford it.”

Fresh hope as Ben defies medical expectations

Ben, who fell victim to SPS at 17, is believed to be the youngest person diagnosed with the rare condition in Australia.

“I went from being triathlon fit to having to learn how to walk again,” he said.

But through the use of medicinal cannabis combined with strenuous amounts of rehabilitation, he has made incredible progress.

“I still have a long way to go but I know that the only person that is going to get me better is me,” he said.

A photo of Ben during one of his many strenuous rehab sessions. Source: Facebook/Roll on Ben Oakley
Ben has improved in leaps and bounds through the use of medicinal cannabis combined with strenuous amounts of rehabilitation. Source: Facebook/Roll on Ben Oakley

A normal week for Ben consists of daily exercises, two visits to a physiotherapist, two appointments with an exercise physiologist, one session with an osteopath and a five kilometre roll in his wheelchair.

“Consistency is key when it comes to rehab, so whether it's rain, hail or shine, we are always at it,” he said.

Recently, he received a remarkable assessment from his neurologist.

“I was given some news that I’m still trying to comprehend… The Neuro has said ‘given how far you’ve come, there is absolutely no reason why you won’t get back to where you were’ After 8 and a bit years of the hardest test of my life, to know that I am bucking the trend, that I’m moving in the right direction and that there’s a good chance that I’m not gonna be like this for the rest of my life, I’m speechless!,” he posted to his Facebook Page Roll on Ben Oakley.

While Ben acknowledges that there is no guarantee that he’ll get back to where he was before being diagnosed, he’s been filled with fresh hope that all this “blood, sweat and tears is worth it”.

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