Project Epilepsy

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

 

 

Chelsea Leyland

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.

 


 
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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.

 

 

There was a full year during which I had the DJ version of writer’s block. I lost my mojo, basically. It got so bad I’d have these meltdowns while DJing. I'd break down and be like, "I can't do it, I can't do it." I couldn't understand what was happening to me. I became really anxious and worried that everyone thought I was a terrible DJ. I felt like my ability to mix was taken away from me. I've heard people describe writer's block and that’s what it felt like. I think that the reason it happened to me is because I had to get uncomfortable where I was in order to make other changes. So I started doing some work as an epilepsy advocate. I flew to Barcelona for a job and was having a really tough time, and it was during some small interview that I blurted out that I was an epileptic. That's when everything changed. I made a rule for myself that every time I was to do a shoot or anything, I would try to mention that I was epileptic and an epilepsy advocate. I started doing a few partnerships and collaborations and as much work in the space as I could—podcasts, panels, talks. I started to feel better about myself and all of the other work I was doing that had felt so superficial.   I remember the gig I was playing when my flow came back. Lauryn Hill was performing. It's powerful when you feel like you're doing a good job, because music is a universal language that everyone speaks. It's the one thing that can shift people's moods and bring tears to someone's eyes just like that. It triggers something within them. What else can do that? Where you're just sitting there feeling like shit and you put on that one song and you just feel it in your bones? That's so powerful.   I was first given a few drops of CBD to try before a wedding in England. I had flown from New York on a red eye and only slept two hours. I was exhausted, but my boyfriend was the best man and he kept me awake all night freaking out. And the night of the wedding we all stayed up until 8AM. A week later I was walking down the street in New York and I thought about the wedding and the sequence of events, how sleep-deprived I’d been and how usually by 5AM I would have felt like I was in the danger zone for a seizure. I thought, “I wonder if it has to do with those few drops?”   It was the second time I was given some CBD that I honestly started to feel different within the hour. The next morning I woke up and realized I’d forgotten to take my medication. That was huge for me. I never forgot to take my medication. Never, ever. I would lose handbags and laptops and my marbles completely but not my pills. I initially panicked, but that was followed by this overwhelming feeling of excitement because I was like, “Okay, there's something here.” I realized the reason I had forgotten to take my meds was because I felt like I'd taken my meds.   I ordered a bottle and I started taking it regularly. I felt the difference so quickly. It's so hard to articulate. I felt grounded—mentally and physically. My whole system was just calmer in a really natural way. I was sleeping 12 hours a night—my body was catching up from all the years that I hadn't slept. Shortly after, I went to a Ibiza for a holiday and I was able to watch the sunrise and do things I hadn't ever been able to do for fear of sleep deprivation and giving myself a seizure. That week was life-changing. After being on CBD for a while, I listened to my body and began lowering my medication. I started doing it very gradually and eventually weaned myself off entirely. I've now been off of anticonvulsants for a year and four months and I have not had one seizure.    

There was a full year during which I had the DJ version of writer’s block. I lost my mojo, basically. It got so bad I’d have these meltdowns while DJing. I'd break down and be like, "I can't do it, I can't do it." I couldn't understand what was happening to me. I became really anxious and worried that everyone thought I was a terrible DJ. I felt like my ability to mix was taken away from me. I've heard people describe writer's block and that’s what it felt like. I think that the reason it happened to me is because I had to get uncomfortable where I was in order to make other changes.


So I started doing some work as an epilepsy advocate. I flew to Barcelona for a job and was having a really tough time, and it was during some small interview that I blurted out that I was an epileptic. That's when everything changed. I made a rule for myself that every time I was to do a shoot or anything, I would try to mention that I was epileptic and an epilepsy advocate. I started doing a few partnerships and collaborations and as much work in the space as I could—podcasts, panels, talks. I started to feel better about myself and all of the other work I was doing that had felt so superficial.
 

I remember the gig I was playing when my flow came back. Lauryn Hill was performing. It's powerful when you feel like you're doing a good job, because music is a universal language that everyone speaks. It's the one thing that can shift people's moods and bring tears to someone's eyes just like that. It triggers something within them. What else can do that? Where you're just sitting there feeling like shit and you put on that one song and you just feel it in your bones? That's so powerful.

 

I was first given a few drops of CBD to try before a wedding in England. I had flown from New York on a red eye and only slept two hours. I was exhausted, but my boyfriend was the best man and he kept me awake all night freaking out. And the night of the wedding we all stayed up until 8AM. A week later I was walking down the street in New York and I thought about the wedding and the sequence of events, how sleep-deprived I’d been and how usually by 5AM I would have felt like I was in the danger zone for a seizure. I thought, “I wonder if it has to do with those few drops?”
 

It was the second time I was given some CBD that I honestly started to feel different within the hour. The next morning I woke up and realized I’d forgotten to take my medication. That was huge for me. I never forgot to take my medication. Never, ever. I would lose handbags and laptops and my marbles completely but not my pills. I initially panicked, but that was followed by this overwhelming feeling of excitement because I was like, “Okay, there's something here.” I realized the reason I had forgotten to take my meds was because I felt like I'd taken my meds.
 

I ordered a bottle and I started taking it regularly. I felt the difference so quickly. It's so hard to articulate. I felt grounded—mentally and physically. My whole system was just calmer in a really natural way. I was sleeping 12 hours a night—my body was catching up from all the years that I hadn't slept. Shortly after, I went to a Ibiza for a holiday and I was able to watch the sunrise and do things I hadn't ever been able to do for fear of sleep deprivation and giving myself a seizure. That week was life-changing. After being on CBD for a while, I listened to my body and began lowering my medication. I started doing it very gradually and eventually weaned myself off entirely. I've now been off of anticonvulsants for a year and four months and I have not had one seizure.

 

 

I'm often brought near to tears because I get such beautiful messages from people saying thank you and telling me what they're doing. That they started taking CBD and got off of their meds, or they're taking it in conjunction with their medicine and it's changed their life. I always start by saying I am not a doctor and that what works for one doesn't necessarily work for another. Someone can have the exact same type of epilepsy as I do and they might not have the same results because we're all wired differently.   I also think educating people through the science of it really helps—that it's a very complex plant with many different molecules, and that CBD is not what we've been told that weed, or whatever, is. CBD is non-psychoactive; it doesn't get you stoned. I think it's just really important that people understand that. That's why I'm making a documentary. It came from a place of realizing that there is so much information out there that it’s overwhelming. So many companies are selling cannabis products and people don't know who to trust. Our mission is to use science to feed people’s hunger to know more. It's about legitimizing it, with no nod to recreational use. I don't think the two need to be exclusive, and hopefully we'll bridge that gap at a later date. Right now, unfortunately, it's important to create some separation: to say this is medicine, this is not about getting high. It’s a shame because I think a lot of people who use cannabis recreationally are, in fact, self-medicating.   Working on this documentary, I suddenly feel like I have a normal job. It's hugely refreshing to be a creative in a room and in conversation with all these academics—with epileptologists, neurologists, and scientists—and yet I don't ever feel that I'm looked down upon.   I'm able to enjoy DJing more now and be grateful for everything because I’m using my brain and using the side of myself that needs to be of service. I've always had that ingrained in me, perhaps because I was of service as a child caring for my sister. I really do have a burning desire to want to help people and want to do it in the right way: actually working on something that is going to help—well, hopefully help—as many people as possible.   Chelsea Leyland photographed by Meredith Jenks at her apartment in Brooklyn. This interview has been edited and condensed for clarity.

I'm often brought near to tears because I get such beautiful messages from people saying thank you and telling me what they're doing. That they started taking CBD and got off of their meds, or they're taking it in conjunction with their medicine and it's changed their life. I always start by saying I am not a doctor and that what works for one doesn't necessarily work for another. Someone can have the exact same type of epilepsy as I do and they might not have the same results because we're all wired differently.
 

I also think educating people through the science of it really helps—that it's a very complex plant with many different molecules, and that CBD is not what we've been told that weed, or whatever, is. CBD is non-psychoactive; it doesn't get you stoned. I think it's just really important that people understand that. That's why I'm making a documentary. It came from a place of realizing that there is so much information out there that it’s overwhelming. So many companies are selling cannabis products and people don't know who to trust.

Our mission is to use science to feed people’s hunger to know more. It's about legitimizing it, with no nod to recreational use. I don't think the two need to be exclusive, and hopefully we'll bridge that gap at a later date. Right now, unfortunately, it's important to create some separation: to say this is medicine, this is not about getting high. It’s a shame because I think a lot of people who use cannabis recreationally are, in fact, self-medicating.
 

Working on this documentary, I suddenly feel like I have a normal job. It's hugely refreshing to be a creative in a room and in conversation with all these academics—with epileptologists, neurologists, and scientists—and yet I don't ever feel that I'm looked down upon.
 

I'm able to enjoy DJing more now and be grateful for everything because I’m using my brain and using the side of myself that needs to be of service. I've always had that ingrained in me, perhaps because I was of service as a child caring for my sister. I really do have a burning desire to want to help people and want to do it in the right way: actually working on something that is going to help—well, hopefully help—as many people as possible.

 

Chelsea Leyland photographed by Meredith Jenks at her apartment in Brooklyn. This interview has been edited and condensed for clarity.