Sitting with Dana Bar-On at a cannabis conference is akin to chatting with an A-list celebrity at an Academy Awards after-party. Every few minutes, friends and fans interrupt the conversation to grab a word or shake the hand of this tiny, fierce ball of energy who is on a one-woman crusade to shake up Israel’s medical cannabis policies.
Born with a genetic neuromuscular disease called CMT, Bar-On was destined to follow in her late mother’s footsteps and spend her days in a wheelchair wracked by tremors that would leave her mentally drifting from reality.
However, Bar-On credits cannabis with changing this trajectory. At 24, the disease caught up with her. Forced to quit her job, she couldn’t eat, could barely move and spent up to four days at a time in bed sleeping. She said the tiniest sensory stimuli could trigger acute pain.
“Think of yourself trying to feel normal when everyone is screaming at you — it’s like that,” she said. “It’s very physically stressful. Everything is shaking, twitching, muscles are up and down, your bones are hurting you, you can’t function.”
Her legs were measured for mechanical walking devices. But cannabis, she said, stopped the disease’s destructive path, and a mere two months later Bar-On danced — unaided — at her wedding.
Cannabis relaxed her muscles enough to enable her body to perform normal functions such as swallowing food. However, against the advice of her doctor, the health ministry drastically reduced her dosage allowance — each time with negative results for her. The medical professionals at the ministry, who had never spoken to Bar-On despite her dogged pursuit of them, said it was not possible for a human to be consuming that amount of cannabis — well over 6 ounces per month — and even suggested she check into rehab. In 2015, after the ministry again scaled back her dosage, Bar-On decided to go public.
“I grew up knowing where this is going. Seeing my mother was a mirror to prepare me.” — Dana Bar-On
“I wanted to die in plain view,” she said.
Bar-On set up a protest tent in front of Prime Minister Benjamin Netanyahu’s residence in Jerusalem and vowed to stay there until the ministry changed its decision. She describes how security officers and soldiers despaired over her rapidly deteriorating condition. She had lost 45 pounds in a span of weeks. “I was evacuated by an ambulance from that tent, unable to breathe on my own and shaking uncontrollably — and even then they still didn’t give me my dosage back,” she recalled.
Why didn’t she acquire more pot on the street? “There was a lot of pressure on me to do that,” she said. “But even if fighting this meant I would die, I’d rather die than live a lie. I would not be a criminal.”
The campaign worked. Bar-On’s dosage was restored and she won a lawsuit against the health ministry’s doctor for slander over his suggestion that she lied when she said she smoked the amount she did.
In 2016, she founded the Medical Cannabis Association. She has lobbied for the rights of hundreds of medical cannabis patients — or those waiting to receive licenses — at the legislative level.
Bar-On’s mother died two months ago from the disease.
“I grew up knowing where this is going. Seeing my mother was a mirror to prepare me. I’m not living in an illusion that the disease won’t progress any further and that I won’t die at 40 or 50,” she said. “But I’m quite an optimistic person. Even if tomorrow I’m forced to go in a wheelchair, I’ll not be stopping my life.
“I assume that if God was generous enough to give me this life, then I’m supposed to enjoy it somehow.”