An Awareness campaign for Epilepsy & my experience
As an advocate and sufferer of Juvenile Myclonic Epilepsy I have created an awareness campaign to educate others about this condition in an attempt to remove the stigma and much more.
By raising awareness and funding, I hope to help & inspire others who are, or who have been affected, aiding the research which is needed to work towards finding genuine relief, without side-effects, and to further improve the medication, [so as to better the quality of life] for people who suffer from Epilepsy and who often shy away from talking about it.
I will be directing all funds raised to https://www.epilepsysociety.org.uk where a lot of research is done, and also where my sister Tamsin resides. My sister 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 vagal nerve stimulator implant that helps keep her alive, but also relies on heavy doses of medication!
I hope that through my struggles as a D.J: "battling late nights, early flights, and strobe lights", I can inspire others on their journey. Together I hope we can beat this - and that we can live the lives we chose, but without the impedance of this degenerative condition.
Full Article Here
The DJ-turned-epilepsy activist on going from fashion to filmmaking, CBD, and what it's like to lose one's musical mojo.
AS TOLD TO GOSSAMER
I was asked to DJ before I even knew how to do it by the photographer Ben Watts. I met Ben in my first week in New York. He kind of took me under his wing and would invite me out to Montauk on the weekends. It was at his house one time that I was putting some music on an iPod when he asked me to DJ his Shark Attack party. I was like, "Oh, I don't know how to DJ." He said, "Just come, put the music on two iPods, and you can crossfade from one to the other."
DJing became a great way to make some extra money on the side. I really owe a lot to my boyfriend at the time who told me, "I think you'd be a really good DJ, but learn to do it properly. Don't be another one of these girls playing music from their iTunes. Take classes, take it really seriously, and learn with turntables and records how to mix and beat match."
I started to learn with another DJ who was very sweet and very patient. He taught me about the importance of organizing your music and about taste. That is why people hire you, really. You can't buy taste and you can't buy that knowledge, so you should start there. I think a lot of the time people worry so much about the technicalities. DJing is such a beautiful thing. You are like this vessel, channeling an energy that comes from somewhere else. Sometimes I have these amazing sets and don't even know where it's coming from—this ability to know what to play next. There are many DJs with amazing technical skills, but I wouldn’t say that I’m one of them. I probably got where I did more so through my knowledge and diverse taste in music.
Life got pretty crazy quite quickly. I was being hired a lot in the fashion and art worlds, and it was at a time when everyone wanted a female DJ and there weren't that many. Not everybody and their mom and their aunt and their brother was a DJ. I worked my way up. I think my first gig was in a hotel lobby. I started traveling a lot and really lived an amazing life because of that. It was never something that I saw myself doing for the long run, I guess—I was just sort of riding that wave.
But then I started to get really uncomfortable. I kept feeling really bad about myself and thinking that everyone was judging me. And then I would feel guilty for not feeling grateful for where I was at. I'm living this amazing life, I'm flying around the world, I'm making money, I get to make people dance for a living. Why does it feel so empty? It was this vacuous feeling. I was doing more and more interviews and they were all asking the same questions, like, "What are your beauty tips? What moisturizer do you fly with? What's your Christmas wishlist? Who are your top three designers?”
It just started feeling really surface to me, probably because of growing up with my sister, Tamsin. She’s severely epileptic and mildly autistic. She can have anywhere from 15 to 20 seizures a day. My sister is a big part of my life and there was a part of me that was feeling that I’d left that behind, those roots of my reality. I think I felt some guilt that I was living this fancy life. Now I see that growing up with that was a real gift because it exposed me to something that was raw and real and difficult. That hardship has obviously made me who I am today.
I also have epilepsy—a type called JME, which stands for juvenile myoclonic epilepsy. It’s very different from my sister’s. It’s manageable, for the most part. My sister lives with full-time care at the Epilepsy Society in the U.K. They're pioneers in epilepsy.
I was diagnosed at 15. I had sort of grown up as the “normal child,” so it was especially difficult for my parents. I had symptoms for a couple of years before they actually diagnosed me. I was at boarding school and the school doctor kept telling me that it was psychosomatic and that I was dealing with issues that were pertaining to my sister's health. They eventually said they’d send me to a neurologist to “put my mind at ease.” It was very condescending. The school matron took me to a neurologist and I explained in probably five minutes the symptoms I was having, and he said straight away, "You have JME.” It's also known as “flying-saucer epilepsy" because back in the day, women would have their tea in the morning, and the myoclonic jerks would make their saucers go flying.
It almost feels like a matrix-interruption for a second or something. I also get grand mal seizures, which are the bigger ones, and complex partial seizures, which are sort of where I don't even know I'm having one and someone else might not notice either. It's like a prolonged daydream.
"It's such a privilege to be invited to something like a Burberry runway show during fashion week, but I'd be dripping with sweat and wondering, “Am I going to fall down and have a seizure?”
When I first started to DJ and things were going well, my mom told me, "Just don't tell anyone you have epilepsy." It doesn’t make me think of my mom in any negative light—I think it was that stiff-upper-lip English mentality—but it’s interesting because I've now gone against that.
There was an angst brewing inside of me and I wasn't expressing it to anyone really. Small things were really challenging, like going to an event and doing a step-and-repeat with all the camera flashes. It's such a privilege to be invited to something like a Burberry runway show during fashion week, and you want to get your picture taken because that amounts to press and exposure, but I'd be dripping with sweat and wondering, “Am I going to fall down and have a seizure?” And that anxiousness can trigger the seizure. I was also on antiepileptic drugs—a very aggressive medication with terrible side effects of rage and irritability to the point where someone would bump into me on the subway and I would actually want to hit them in the face. It was a nightmare.