Originals
Chelsea Leyland

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.

He said there was nothing wrong with me – not to worry about it and that it was a very normal symptom of being tired. I went back to the doctor three or four times and he finally sent me to a neurologist just as a precaution. At the time, I knew I was dealing with something very real and frightening. My boyfriend could really see me struggling. So I went to the neurologist and explained my story. Straight away he said, “You’re suffering from something called JME – Juvenile Myoclonic Epilepsy.”

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 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.

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 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.

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.

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.

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.

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.”

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.

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.

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.

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.

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.

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.

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.

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.

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.