Rab Lewin is a photographer who has worked for some of the world’s biggest musicians, but for most of his life he has relied on cannabis to keep his epilepsy under control.
Rab Lewin, 53, wasn’t diagnosed with epilepsy until 2013, but says he can recall symptoms as early as the age of four that were never detected.
“I used to get report cards from school saying I started into space a lot, and in high school I started showing signs of narcolepsy,” says Rab, who now lives with family in the highlands of Scotland.
Despite his symptoms he went on to lead an enviable life. He left home at 17 and by 21 was travelling America, working as a stagehand for the likes of Metallica, Pink Floyd, Prince and Neil Young.
It wasn’t until 1997 that he had his first grand mal seizure while living in New Zealand, where he was running a successful vintage business.
“I didn’t understand what was happening,” he says.
“I thought I was having a mental breakdown.”
The seizures would become a reoccurring factor in Rab’s life, sometimes there would be years between them, but each one seemed to be triggered by a stressful situation and over time they became progressively worse, resulting in him being hospitalised.
He was living in Australia in 2013 when he suffered two severe seizures within a short space of time.
Rab’s mum stepped in and encouraged him to move back to the UK, where he was diagnosed with epilepsy a few months later.
The neurologist immediately prescribed antiepileptic drugs, one of which was tegretol, a medication often used to treat schizophrenia.
“It’s brutal, it made me suicidal, I was perpetrating violence, but most importantly it gave me creative block and for me, that’s intolerable,” says Rab.
After he came off the drugs he went to live with friends in Germany, one of whom was using cannabis to manage pain caused by her fibromyalgia.
“I had started smoking cannabis when I was 15 and became a bit of a ‘pothead’,” admits Rab.
“Smoking cannabis was what me and my friend had always done, but during the time I was living with them I had no narcolepsy, the only symptom I had was a little bit of apnea.”
He adds: “I only had one bad seizure, which occurred after a family member died prematurely.”
However, with no health insurance and the coronavirus pandemic taking hold Rab was forced to move back to Scotland earlier this year.
In the remote Highlands of Ardnamurchan where he lives, cannabis is hard to access on the black market and he is starting to see his health decline again.
“Trying to obtain cannabis is a nightmare,” he says.
“I have just had a six-week period with none and I’m starting to feel worse and worse.
“I’m having night epilepsy again, I’m shuddering through the day and it finally culminated three days ago and I had a full blown grand mal.”
He is now attempting to fundraise enough money to obtain a legal medical cannabis prescription from a private neurologist in London.
“The NHS and Government denying patients cannabis means I’m left trying to privately fund life-saving treatment on Universal Credit,” he says.
Rab says he doesn’t know what his future looks like without having access to medical cannabis guaranteed.
“I’ve had a lifetime of these symptoms and they are getting worse,” he adds.
“Why are we reduced to this?”
Donate to Rab’s Go Fund Me page here
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