We spoke to the makers of a new documentary, ‘Separating the Strains,’ which tells the story of US-based Chelsea Leyland and UK-based Tamsin.
Sixty million people around the world live with epilepsy, including over 500,000 in the UK. Around a third of patients don’t respond to traditional anti-epileptic pharmaceutical drugs; however, as a wealth of anecdotal evidence amasses, medicinal cannabis is now being considered as a viable alternative treatment.
In the UK, this debate was being held on the fringes prior to this summer, until the plight of Billy Caldwell—a severely epileptic boy who had been prescribed cannabis oil by the NHS, before the Home Office confiscated his medicine—demonstrated the inhumanity of the UK’s drug policy and led to concrete steps being taken toward change. Nevertheless, the interim licensing system has faced widespread criticism, and countries such as Holland, Canada, and the US remain much further ahead.
Meanwhile, two British sisters—who both live with epilepsy on opposite sides of the Atlantic—are making a film, Separating the Strains, juxtaposing their own contrasting experiences with the condition to highlight the ongoing challenges people with epilepsy face.
At the V&A Museum in west London, I met with codirector Caroline Sharp, while one of the sisters, DJ and codirector Chelsea Leyland, video-called from the States.
VICE: How have you and your sister’s lives been shaped by where you live?
Chelsea Leyland: So much of it is effectively determined by our zip code—like many parallel stories. Living in New York, I am able to obtain a medicinal marijuana card, go to a physician, and have an open, honest conversation where I can be prescribed my medicine. Whereas my sister is in full-time care in the UK and has never used medicinal cannabis because she doesn’t have access to it, and is still having seizures despite taking tons of pharmaceutical drugs.
When did you start working to increase awareness around epilepsy?
I started doing it a few years ago when I was still on pharmaceutical medication, at which point I knew nothing about medicinal cannabis. Growing up, my older sister, Tamsin, suffered pretty severely, having around ten to 20 seizures a day, but sometimes she would have 70 in a night and had to be hospitalized. So epilepsy had been a huge part of my life, even before I myself was diagnosed at 15.
I started by organizing events, talks, and fundraising for the Epilepsy Society—where Tamsin lives—but now I’m hoping that, through this film and the press from my advocacy work, I can really start reaching a wider audience beyond everyone I was fortunate enough to reach initially through the platform from my DJ work.
Was it a shock to be diagnosed so late in your life?
Yes, absolutely. I was always the “normal,” “healthy” child. It was quite strange to believe I had been diagnosed with a type of epilepsy that develops in your teens. It was also sort of hard to stomach because I’d lived up to that point without showing any signs of having epilepsy. And then I was on medication for a while, which came with an array of difficult side effects—insomnia, anxiety, pretty bad depression, and suicidal thoughts for a lot of my teenage years. However, the transformation in both my physical and mental health was so spectacular after I began using medicinal cannabis that I just wanted to shout from the rooftops.
And that’s why you decided to begin making this film?
Exactly. I felt that I could get the message out to as many people as possible in this way. So many people started to write to me through social media about being epileptic. They asked about using medicinal cannabis—asking me which brands I use, where I sourced my cannabis, whether I used CBD or THC, what medication I had been taking, and whether it was true that I’d come off it. I became quite overwhelmed as the messages poured in, so I thought that a film was the best way these questions could be answered. I felt there was a tremendous hunger for people to learn more.
How have you viewed developments in the UK regarding the law and changes to cannabis’s scheduling?
It’s incredibly positive. When we began this project, we had no idea there would be some change happening. It’s step one, and although it’s exciting, there’s still a long way to go—the situation we’re in remains phenomenally frustrating. As someone who lives here where it is medicinally legal, it’s absolutely ludicrous to think that we’re still in this backward position in the UK.