Chelsea Leyland is an influencer on a mission. Afflicted with Juvenile Myoclonic Epilepsy, Chelsea turned her condition from a road block into a speed bump into a cause. The DJ and model is committed to raising awareness about epilepsy out of love for her sister-who is afflicted with an even severer form of epilepsy than Chelsea-and the re-defined sense of purpose her activism brings.
CONVICTS recently got lucky enough to have chat with Chelsea. Over the course of the conversation, we got some seriously inspirational wisdom, harrowing stories and ultimately, an unusual and life-affirming look at the positive potential of fame.
Hey Chelsea, hope you’re doing well. If you don’t mind, we’ll jump straight into the heavy stuff. Could you tell us about your early experiences with epilepsy?
Before I was diagnosed at fifteen, I had a few strange symptoms that built up over two or three years. My brain would get these flashes and cut out like an interruption. I’d be speaking, having a conversation, then suddenly the light would come and I’d lose where I was in the conversation. I would wake up tired and have these little jerks in my hands. I’d be having my cereal and the bowl would drop from my hands and smash on the floor.
What did your doctor say about it?
He said there was nothing wrong with me – that it was a very normal symptom of being tired and not to worry about it. I went back to the doctor three or four times. He finally sent me to a neurologist just as a precaution. At the time, my boyfriend could really see me struggle and I knew I was dealing with something very real and frightening. I went to the neurologist and explained my story. Straight away he said, “You’re suffering from something called JME – Juvenile Myoclonic Epilepsy.”
That must’ve been scary at the time…
It was a shock. I’d heard this word epilepsy so much, with my sister and everything, then I was hearing someone tell me I had it myself. I’m sitting there without my boyfriend, without my family. I felt this anger at the doctor who had told me for so long there was nothing wrong with me, who kind of made me feel like a hypochondriac.
Your sister has epilepsy as well?
She has a very different type than I have – hers is very severe and she can have up to fifteen seizures a day. Previously I had told people she had it, but didn’t mention that I had it too. I’m able to lead a normal life and she’s not. I’ve always had that feeling that I wanted to do something about epilepsy because I felt I owed that to her as well.
Did you start medicating your condition then?
Maybe it was six months after that when I had my first full-blown seizure. I fell to the ground and lost consciousness, then they put me on a medication and that helped. It took a few years to get everything settled and to get put on the right type of medication. I’ve had eight serious seizures in my life at this point.
What are some of your most problematic triggers?
It’s often the little things. Say I’ve flown in from somewhere and haven’t managed to get the sleep that I need. And I need to go to an event where I’m having the picture taken and the lights from the flash – that’s a big cocktail of disaster for me because I’m photosensitive and I shouldn’t be around that frequency. Light that comes through the trees-dappled light-is annoyingly beautiful. Most people love it but I hate it because it puts me in the danger zone.
Could you tell us a bit about this ‘danger zone’ you’re describing?
It’s the unsafe stage where I start feeling nervous and could potentially have a seizure. Now I know how to handle it, but the problem intensifies when I really need sleep and just can’t go to sleep. The fear that I’ll have a seizure tomorrow keeps me awake.
What finally impelled you to take up your work as an epilepsy awareness advocate?
I did an interview with a magazine when I was just feeling really vulnerable. The interviewer asked me the usual questions about DJing and fashion, and I decided to just start talking about epilepsy. I wanted to raise awareness, and I told her it’s something I’ve been suffering from. She said, “Have you ever spoken about this before? If you want, we can do a full profile story and we can do a shoot with you and focus on that.”
And it took off from there?
Every time I spoke about it, I started to feel good. It felt like what I was meant to be doing. I’m entering into my truth and want to be true to myself. I’ve done so many interviews where the questions are “What’s your must-have fashion item right now? What makeup and face cream do you use? How do you stay healthy?” and those questions started to get quite difficult for me. They started to feel quite dry and soulless and actually made me feel stupid after a while.
What makes epilepsy different from other diseases?
Epilepsy is different than something like diabetes, it’s not detectable at first. When you have diabetes and you’re taking your blood, or you’re asthmatic, there’s a way to detect your illness. Epilepsy is something you really struggle with in the dark.
Has your own condition evolved over time?
I hadn’t had a seizure for seven years, then it happened again about two years ago – my epilepsy is affected by stress and sleep, which as you can imagine, being a DJ is the perfect job. I don’t get any sleep, I live in New York, and I’m always stressed.
Could you tell us about the ways your roles as a model, DJ, and mental health advocate relate to one another?
There are so many people who struggle with illnesses, especially mental illnesses that we don’t know much about. Now people are starting to come to me and share their experiences with me. This process allows me to not feel guilty about all the glitz and glamour on the other side of my life. It’s all about putting these things together and asking why I have been given this platform or this voice or this little piece of success. The opportunity to speak about epilepsy is quite incredible.
Has your activism taken any new forms lately?
We had a little girl who had four weeks to live – this was sort of a collaboration with Make-a-Wish Foundation – walk down the runway. That’s unusual for a fashion show and put life into perspective for everyone there.
How does DJ’ing interact with your epilepsy?
I get stressed but love to push myself to create something in the moment. There aren’t that many females in the DJing profession but that hasn’t stopped me from doing what I love.
Do you have a particular strategy for juggling your professional life with your medical needs?
It’s important to let people know that you’re not a sob story or a flake – you have a legitimate medical reason for cancelling an engagement. And apparently when you get to thirty you really don’t care what people think – I imagine when you get to forty you don’t give a fuck.
What else do you do to keep your condition between the lines?
Yoga and meditation have helped quite a lot. I envision spending more time in LA and hopefully there I’ll get the chance to live a calmer lifestyle. Also, without a doubt, Alice. She’s my assistant. She dresses so beautifully and uniquely – amazing Harojuku dresses – and most importantly keeps me calm under pressure. She’s beyond being just an assistant, she’s an admin, she handles my emails, she handles practically anything that relates to my life and health. She tells me not to worry and she sorts me out. Her sensitive, kind and spiritual soul makes me feel looked after. We’re both bonkers and we’re always laughing. It makes sense that we work together.
Switching gears a bit, could you tell us about your relationship with the city?
If you’re a sensitive person, it can be tough. There are so many ambitious people in one place and everyone’s trying to get ahead. It’s not a place where people are there to be lovely and kind and get to know you. Having been at it awhile, living here is more about understanding yourself and what you can handle and only doing as much as you can handle.
Is this home now?
I’ve been in NYC for nine years and I love it. I’m not saying goodbye to it, but I’ve reached a point where I know a different lifestyle could bring tremendous benefit. It’s not for the naturally highly-strung, and I have this fear that I can’t sustain my life here entirely. I may need to split my time between cities for the sake of my health. If anything, I need more nature – it plays such a big part in my happiness. I need sunshine and I want to have a cup of tea outside. I want a simpler, more natural way of life.
That sounds like the right way. Thanks so much for talking to us, Chelsea, and best of luck with everything.