The majority of activists looking to shine a light on the medical benefits of cannabis are drawn into the conversation for personal or familial reasons. Diagnosed with Juvenile Myoclonic Epilepsy in her early teens, Chelsea Leyland is a British DJ turned activist with a focus on medical cannabis and epilepsy awareness. She is currently based in Brooklyn, New York.
When she was diagnosed, Chelsea was told she would be dependent on medication for the rest of her life. In 2016 she made the life-changing decision to wean herself off her strong pharmaceutical anti-seizure medications and treat her epilepsy solely with medical cannabis.
With help from a largely female production team, Chelsea is making a documentary called Separating The Strains. The film will assess the state of the global medical cannabis industry, with a particular focus on epilepsy, head injuries, and the opioid crisis. The project was inspired by Chelsea’s own experiences as well as those of her sister Tamsin who is 36 years old and lives in full-time care at The Epilepsy Society in the UK, having sustained irreparable brain damage as a result of many seizures.
The filmmakers hope to get the attention of doctors and politicians in the UK who have the power to effect policy, and the opportunity to change the lives of many young people living with this degenerative condition.
People often ask me how I came to use cannabis as medication. It was really innocent, not intentional. One evening I took some CBD oil (it was my second time ever), and that night I also forgot to take my epilepsy medicine. That’s a big deal because with anticonvulsants, or me anyway, it was never a question of deciding to take my meds or not. My brain would always remind me, every evening, that I needed to take my pill, because if it got past the time I’d usually take my pill I would start to feel uneasy and worried I might have a seizure. But that night, the second time that I ever tried CBD, I went to sleep and forgot to take my medicine and when I woke up the next morning and my initial thought was, “Holy shit. This isn’t good.” But quickly followed by me realizing, “Wait a second. I think I forgot to take my anticonvulsants because I felt like I was medicated.” And then I wanted to learn everything I could about cannabis as medication. I ordered a tincture and my life just started to transform everyday that I was on it.
I ordered a tincture and my life just started to transform everyday that I was on it. ”
At first I was using cannabis products in conjunction with my pharmaceuticals, and then over time, on its own. It was like I’m peeling back these negative layers. Medicating with cannabis allowed me to get to know the person that I was underneath the medicine. It’s safe to say that this plant holds a tremendous piece of my heart.
I’m lucky to live in New York where medical cannabis is legal. That’s not true for my sister Tamsin who lives in the UK and has a more severe type of epilepsy than me, having many seizures a day resulting in frontal lobe brain damage and mild autism. She has a vagus nerve stimulator implant that helps keep her alive, but also relies on heavy doses of medication.
Epilepsy is the second most common condition after diabetes, yet it remains marginalized. For so many patients this condition is a matter of life or death. Medical cannabis could truly change lives. Without trying to sound negative, it is too late with my sister because her brain is already so damaged. But there are so many patients out there that we can help by making this documentary and bringing attention to this issue.
For somebody who’s sitting on my side of the fence it’s incredibly frustrating, infuriating, and quite painful to watch. But I know that we are at the beginning of this change, so that’s what I’m holding on to as we climb this mountain. Because I know in my heart we are going to get there if we keep working at it.
Photography by Angela Lewis
I’m still struggling with the fact that I come from a world — the fashion industry, namely — where I’ve never really felt I fit in. I’ve had a fantastic career and I don’t want to discount the positives, but at the same time it’s an industry often based on superficial things, and a very specific, narrow definition of success. I was living what I call ‘the sparkly life,’ travelling the world DJing, getting big opportunities, but on the other side I live with an invisible illness, and I want to help people, and here was a point that I said to myself, “I need to do something dramatically different with my life.” What I realized over time was: I didn’t need to totally leave that old world behind, but that I could use that platform to really try to make some sort of change. To try to raise awareness for epilepsy, educate people, de-stigmatize the condition, talk about the benefits of medical cannabis in my experience, open up the conversation to new audiences.
“Activist” is a big word, and it comes with big responsibility. I started referring to myself as an epilepsy advocate before I even started using medicinal cannabis. The team I’ve been working with on Separating the Strains started calling me an activist and encouraging me to step into that role, be proud of this work I’ve been doing, and it was really humbling to see their belief in me.
When I think about activists, Charlotte Caldwell immediately comes to mind. She is the mother of a young boy (Billy) with severe epilepsy and autism whose story has prompted major conversation in the UK about access to cannabis as medicine. Activists like Charlotte dedicate their life’s energy and purpose to a mission bigger than just their personal story. I really think of her as a modern day hero.
Click here to read more about Charlotte and her fight for Billy’s medicine.