Chelsea Leyland is barefoot, legs crossed, and wearing at least six layered gold necklaces reflecting the sun. The top half of her forest green jumpsuit has been unzipped to allow her skin to breathe in the bright heat. And on the all-white patio of her friend’s LA home, it’s as bright and hot as they come.
She squints in the flickering light. She says “it’s OK” as we take her photograph in direct afternoon sun. But it’s not really OK. I’m thinking about her epilepsy and I know she’s thinking about it too. But I also know she’s thinking about her sister’s ten times more.
Leyland is the lucky one, if you can call living with epilepsy lucky. Her condition, debilitating as it’s been historically, is under control. The DJ and influencer, turned documentarian and cannabis advocate, thanks CBD for that. Since treating herself with CBD products (federally legal in the US where the UK native resides) she’s gone off her seizure medication and has never felt better. But while Leyland’s found a way to manage her illness and its symptoms, her sister Tamsin’s trajectory looks different.
Still based in the UK, Tamsin resides in an assisted living facility and does not have access to medical cannabis. As her condition worsens, Leyland is doing everything in her power to make sure that her sister—and the millions of people like her—are able to access the potentially life-changing compounds within cannabis. It’s an uphill battle, but when it’s so close to home, fighting it is the only choice. And as a public figure, Leyland is fighting it the best way she knows how: with sound and image. With storytelling.
“Making this film, it’s like taking an almost voyeuristic approach to what’s going on in the UK,” says Leyland on her documentary project, Separating the Strains, which has been two years in the making and is still only 60 percent of the way through. “But also, I’m living and breathing it at the same time because it’s so personal … there are days when I’ll spend my day talking about this condition and this [cannabis] stigma. Then I’m going home and seeing my sister having seizures and experiencing that reality I’ve spent the day talking about.”
She looks tired, but thoughtful. Cognizant of her words, but warm and open; vulnerable. Not rehearsed, even though (considering the amount of panels and interviews she participates in about medical cannabis) she’d be forgiven for being a little rote. “There’s not really a moment away from this subject,” she says.
I can only imagine.
Since November 2018, receiving a medical cannabis prescription from a specialist doctor has been legal in the UK. However, numerous bureaucratic hurdles and low amounts of imported plants have meant that, according to the BBC, “virtually no-one” has been able to access it. It’s a pale contrast from the recreational free-for-all in LA, where CBD is practically considered the new superfood and the smell of joints wafts along the boulevards.
“When I get back to where I’m from, I see that there are only 12 patients in the country with a prescription. It’s unfathomable,” says Leyland, adding that she’s working with some contacts “to see if we can get my sister a prescription through her neurologist.” The implication being that even well-known advocates with years of cannabis experience and international industry networks can’t even make promises.
Like so many people, Leyland is angry about it. “The Government took credit for changing this legislation, but the reality is no one has a prescription. They say, ‘we’re doing the best we can, we have no infrastructure.’ But on the patient side, people are dying,” she says.
“That’s the reality. This is not a joke. This is not about ‘getting high’ or even having a good night’s sleep. This is a life or death situation for many people and my sister is one of those people.”
Even when talking about her sister’s future and quality of life, Leyland is measured—no easy feat considering the emotional weight of the subject. But “communicating science to the masses” is part of her mission statement, and that of her documentary. The idea for the film came after she asked herself, “How can we help as many people as possible, given I’m not a medical professional?”
“This is not a joke. This is not about ‘getting high’ or even having a good night’s sleep. This is a life or death situation…”
Putting science at the forefront of the project was a no-brainer for all involved.
“Cannabis is a drug like any other,” Leyland says, speaking on the responsible representation of the plant. “It’s not a panacea … I know people with the same type of epilepsy [as me] who haven’t had any luck with CBD.”
But honoring the tension between anger and objective, scientific knowledge is a constant balancing act when you’re stuck in the middle of the two. How measured would you be when your loved ones are suffering and it feels like nothing is being done? And would you even want to be calm? After all, emotional, personal stories are what shift public opinion.
Just look at the cases of Billy Caldwell and Alfie Dingley: two UK boys with epilepsy whose use of cannabis significantly improved their conditions. Under UK law, they were initially prevented from continuing medical cannabis treatment, until public outrage helped move the needle.
Leyland’s story of two sisters—only an ocean apart and yet a legal world away—is moving because it belongs to all of us.
“We’ve all got someone in our family with cancer, or MS, or alzheimer’s, or epilepsy,” says Leyland. “It’s very easy for Government bodies to say ‘We’re doing the best we can,’ but it’s like no. If this affected your fucking child, then you wouldn’t just be sitting there snoozing and putting other things first. As soon as we see someone that’s affected by their condition, we change our minds, you know?”
I do know. The issue of marriage equality—now federally legal in many nations around the world—is a perfect example of the power of proximity. If something affects the quality of life of someone you love, it’s game over. You’re engaged and you’re willing to change things. It’s seeing the ways people are suffering that shifts the conversation, according to Leyland. That’s why her documentary is a tale of two sisters. It’s about our humanity.
“If this affected your fucking child, then you wouldn’t just be sitting there snoozing and putting other things first.”
“When I was visiting my sister last time,” she says, visibly upset, “she was very, very unwell. She was in what they call ‘status’ where she’s having seizure after seizure. I feel angry because I believe that my sister could have been one of the many children that could have benefitted from medical cannabis. She would have less brain damage today. A lot of it is irreversible.”
She continues: “We’re gonna look back on this time in 10 years, when we’re making TV shows about it, and we’re going to think about how unjust it was. And is.”
Cannabis refugees are a thing now. New mothers—mostly mothers of color—are being targeted by law enforcement and having their children taken away for having cannabis in their system. The super trendy-ness of CBD in the US belies, and even doubles down on, the ever-prevalent stigma against cannabis users.
While some cannabis business founders are lauded by the mainstream media, millions of others—mostly people of color—are behind bars for doing the exact same work. Suffice to say, we have a long way to go.
What to do? For Chelsea Leyland, both science and personal testimony have an important role to play. And although their relationship is tense, they need not be mutually exclusive forces. For her, the stigmatization and prohibition of the plant “has been led by politics, and is rooted in racism. This movement has to be led by science and have science at the forefront.”
But research itself is dealing with severe funding limitations, not to mention government patents on cannabis for its antioxidant and neuroprotective properties—a strange irony considering its federally illegal status. Indeed, science needs allies. And our hearts might just be the accomplice we’ve been missing for far too long.
For Leyland, squinting in the sun—despite the risk—is least she’s willing to do. For her, it’s a long game and it takes real discomfort. Risk even. Cannabis users (even the CBD-only crowd) are all implicated. Things are heating. And there’s too much at stake to have it any other way.
“We have to be emotionally intelligent,” she says. “We have to know how to tug on the heart strings when it’s appropriate. We have to know how to act as a chameleon and change depending on who we’re talking to—being really conscious of our language. We can’t feed into the stigma that already exists. Things need to change.”
Separating the Strains is currently crowdfunding and you can help by making a contribution.