Happy Purple Day! This year, Rebecca Goodeve and Chloë Kilby spoke to Epilepsy Research with regards to having epilepsy in the film and television industry and working as a Colourist and Editor

Epilepsy in the film and television Industry

Epilepsy in the film and television Industry – When were you first given an epilepsy diagnosis?

 

CK: 2008, I was at the end of year 9, just starting my GCSEs – I was having absence seizures till I reached uni and it was a melting pot of everything bad someone with epilepsy could have all at the same time; not sleeping properly, not eating properly, drinking too much alcohol, working too hard, weird sleep habits, forgetting medication, crazy stress and all of that stuff. So I started having atonic seizures where I would fall over and get straight back up again etc but my neurologist wasn’t picking up on it which lead to me having my first tonic clonic seizure and accidentally fell onto this poor 5-year-old boy at a bus stop. The paramedics asked my friend how I fell as I had no injuries and he didn’t want to tell me because he didn’t want me to feel worse.

 

RG: Haha! That’s a brill story, not so much for the 5-year-old but I was diagnosed with JME (Juvenile Myoclonic Epilepsy) as I was just about to take my A levels, so I think that would have made it 2010… I was 17. Alongside the absence seizures, I also had “jerks” where I would random throw a limb out or collapse because my knee would give way and it’s such a strange feeling like, legs feeling so weak, but predominantly, I have tonic clonic seizures and I just have to laugh! I mean I’m fully unconscious so have no idea what’s going on anyway and quite often when I’m told what’s happened, I’m just creasing up with laughter. I once had a seizure in a chemist waiting to pick up my medication and just started kicking and hitting everything off the shelves, my dad had to explain that I’m not just randomly vandalising the shop and that I had epilepsy, they must have been like “GET THIS GIRL HER MEDS STAT!” Or another time I was commuting into London for work years ago, and most of the people who travel from my way all work in the city so look very lovely in their suits and I was sat in the middle of a 6-seater doing my makeup so had foundation on the back of my hand and had a seizure, a lovely gentleman helped me off the train with my stuff and waited with me till an ambulance came but when I came round properly and remembered what I was doing… I then noticed I didn’t have any foundation on my hand and there wasn’t any on my clothes! I can do nothing but laugh but must be a lot scarier for other people, I’ve actually never seen someone have a seizure before so gosh knows what it looks like!

 

CK: Same! I’ve never seen someone have a seizure before either!

 

RG: Which is kind of surprising such as so many people have epilepsy, on average, 87 people get diagnosed with epilepsy a day people have it and what would surprise people even further is that only 3% of those people are photosensitive and what’s worse… there are 21 epilepsy related deaths a week just in the UK… I’m not technically allowed to go swimming, have a bath (!?) use a ladder, use the front gas rings of the hob, I could go on. Pretty sure anyone you speak to who doesn’t know someone on a personal level with epilepsy will just instantly think of strobe lights and not anything that comes with it when actually yeah, we both happen to be photosensitive, but my main triggers are actually alcohol, stress and lack of sleep.

 

CK: Mine has definitely got better over time. I go to raves and all sorts with strobes but pull all the tricks like covering eyes and getting my friends to give me a nudge when it’s safe or removing myself from the room all together and I’ll hang out in the smoking area for a bit. Same with work – when doing a QC (Quality Control), so much attention is needed and I’m staring at a screen that sometimes I’ll need to rest my eyes, maybe have a quick nap for 30 mins before I can pick it back up again because apart from anything else, it’s going to be utterly useless if I’m missing stuff because I’ve had an absent seizure… that literally makes the whole point of doing a QC redundant.

What was your immediate reaction to the news?

 

CK: I cried for two reasons; first was relief that I finally knew what was going on with me – I was finding myself cutting out in the middle of sentences and not remembering what I was talking about/where I was and that was super confusing. Having something to explain it and being able to start fixing it was amazing. The second reason I cried because was because since the age of 4 I’d always wanted to ride a motorbike, so I was like “oh… I can’t do that at 16 anymore”. I was doing stagecoach and progressing through my LAMDA grades – how the hell am I supposed to be an actor if I can’t be around bright lights? There were people in my drama class who’d be like, “oh we’re going to use flashing lights in this scene so just go and stand behind the curtain”. I found it very damaging… however I then began my GCSE in film studies and that was a game changer. So overall, upsetting to have replan my whole life but also a relief to just know what was actually going on with me, don’t know what it was like for you?

 

RG: I was in denial for a long time, I didn’t do any research into epilepsy for ages and didn’t want to know anything about it. I guess I was embarrassed having it. The only way it physically impacted me is that I had to stop my driving lessons which was a killer, being so close to having that control of my own life, not having to rely on others and having that independence to then have it taken away is just felt like a kick whilst you’re already down kind of thing. By this point I had already decided that I wanted to try and give it a go in the film industry, working in production was instantly ruled out due to the long hours and somehow ended up working in a pitch-black room surrounded with multiple monitors which also wasn’t recommended, but I don’t think the photosensitivity side of stuff affects me that much… but I can tell when something isn’t going to pass a Harding/PSE (photosensitive epilepsy) test, I actually prefer working in the dark, I get a headache when all the lights in the room are on.

 

CK: PSE tests are funny because I am the one who quite often has to run the tests, yet I’m also the one who’s triggered by them when I’m assisting. I’ve sometimes had to remove myself from the situation and just say I can’t do it. But, epilepsy has given me this super power to fix a harding fail faster than anyone as I can go to the timecode it’s flagged and instantly see what the issue is where a lot of people still won’t know what it is they’re looking for, like when I was working on the Paralympics I was like “yeah the water is reflecting a weird pattern on the wall which is why it’s failing”, everyone was just like oh, wow, okay! Was a nice feeling.

 

RG: I mean, damn, That is an amazing superpower! having Epilepsy in the film and television Industry really can pay off.

 

CK: I can totally relate to the driving side of stuff as well, I grew up in Cornwall so getting around is ridiculous, you have absolutely no independence! Every town is about 20 miles away from each other and it’s £60 for a taxi there and £60 for a taxi back and buses stop running around 5:30pm, so you can’t really go on a night out without spending a fortune!

 

RG: I guess I’m quite lucky where I live, it’s built up and has a really good residential/night life balance, I’m not far from London either so getting around is very easy. Me not being able to drive didn’t really become a problem till I lived on my own and then all of a sudden, I craved to be behind the wheel again

 

CK: Moving to London was one of the best things I’ve ever done just because of the public transport! TFL is amazing, I get so excited over it and just being able to call an Uber when ever is incredible. I feel so independent. I love seeing my family, but as soon go home to visit them it’s just a constant reminder of everything I am not able to do as I find myself asking for lifts and not being able to do what I want to do, and as an adult that’s very frustrating.

What ways has Epilepsy interrupted your life?

 

CK: Acting, Driving, Swimming and Friendships! The age I was diagnosed seemed to be the prime age for bullying, everyone’s going through puberty and has problems of their own and it was constantly being drummed into me “oh, it could be worse – so and so is going through xyz so you really don’t have it that bad”, just because I had an invisible disability and they couldn’t understand what was happening. When my seizures were at their worst I couldn’t even walk along the streets on my own as I still walk when I have absence seizures. I’ve lost count the amount of times I’ve been pulled out of the road to stop me being run over.

 

RG: The only impact it had my end is that I physically pushed everyone away, it took its toll depression wise and I didn’t really know how to process being told that I will have epilepsy for the rest of my life. Having to have discussions about wanting children at the age of 17 with the doctor to determine the best medication for me etc, it was just all a bit overwhelming and stressful and then add trying to do my A levels on top and being pressured into going to uni by the college when I didn’t want to go was just too much.

 

CK: The medications side effects don’t help there either, depression wise

 

RG: no not at all!

 

CK: The “Keppra Rage” has been a full blown navigational process, the mood swings are horrendous to the point where I’ve been signed off work so yeah I guess having Epilepsy in the film and television Industry has also affected work

 

RG: Oh absolutely, I also take Keppra so can totally relate! I landed my dream job in a company I was desperate to work at for a long long time but as I was a Dailies Colourist, I was working nights and they were really long shifts as well so my body just went “nooooooooo what’s going on here, we had a real good routine!”. I had to leave the company in the end as I simply could not do my job without having a seizure, I’d say that’s the worst my epilepsy has ever been. That company were really good to me, they used to pay for my cabs home after a long day to make sure I was safe. I was made to go through all this health and safety stuff with some random guy on the phone though who determined and reported back that I wasn’t allowed to be left alone in a room to work which obviously is not cost effective for the company! I got to work on some cool films whilst I was there, worked on set, met some amazing people and leaving and going freelance was the best decision I ever made… I may not be grading the massive blockbusters, but I have the best work life balance ever which I am so grateful for and actually is way more important than grading the next cinematic hit in my eyes. Sometimes you just gotta say what’s meant to be will be.

 

CK: I once got asked for “parental permission” to work for a certain company after I disclosed my epilepsy, at this point it pretty much under control apart from the occasional absence and myoclonic jerk, sure a doctors note or a reference from a previous employer would have been understandable but, at the age of 23, having already been in the industry for a good few years, being asked for a letter from my parents was just odd, what kind of question is that? It’s not all bad though, some companies have been amazing and have given me a “seizure care package” for when I need to have a nap for example, such an amazing thing to do.

 

RG: That is incredible! If only everyone was like that. I wish companies were more understanding, when I was a runner I was told by my manager to either go back on to shifts or find myself another job. My Keppra rage definitely stepped in at that point. They knew I couldn’t work shifts as my epilepsy wasn’t stable at the time so was effectively being pushed out of a job, I was only 19 at the time as well so it was all still pretty new to me still. As a freelancer everyone has been really kind and considerate, I guess because if I can’t turn up to work that day I don’t get paid and they can probably find someone else very quick. It’s such a competitive industry.

As someone living with epilepsy and working in a competitive, creative industry, are there ways you feel your condition has been an obstacle, Especially having epilepsy in the film and television Industry?

 

CK: I mean other than what we’ve already discussed, being photosensitive is hard. It’s a case of finding out what I can and can’t QC, although the show that is ready for broadcast may have passed the Harding test it’s still quite intense watching it for such minute details such as dead pixels, banding, spelling mistakes, any effects slipping, blurs slipping, flash frames, offline media, legal colour levels, legal audio levels and that the audio is stereo, not mono, checking the textless elements are correct, I could go on. So if the show is too strobey then I wouldn’t be able to do it which is a shame. I straight up couldn’t do Robot Wars because it was too much.

 

RG: I’m surprised actually that my epilepsy in the film and television Industry hasn’t been more of an obstacle… I sit in a pitch black room surround by multiple monitors all day intensely staring at a screen scrutinising every detail for a living but weirdly the only time it becomes a problem is if I’m reading from a screen – I get bad migraines from this and at the end of the day when it’s home time, I will quite happily not look at a screen for the rest of the evening. I was told not to become a colourist but I’m not someone to let something hold me back, same with the drinking aspect, networking is such a huge element of the film and television industry and it all happens in the pub! I became rather stubborn and wasn’t prepared to amend my lifestyle to accommodate for a disability, I just needed to up my medication to support my life style. It’s not till recently where my priorities have changed where actually, I do need to drive, I would like a family, I’m not in London all the time, I’ve spent the past 11 years networking so perhaps should start looking after myself a bit now.

 

CK: The drinking culture is hard to be around because you’re expected to drink loads and to keep up, but it’s great that there are so many low alcohol or non-alcoholic drinks now. It’s become a lot easier… so the fear of missing out isn’t as much of a problem

 

RG: Especially in soho! The Thursday and Friday night vibes were amazing! I’d love walking through the streets and just knowing so many people.

 

What would you say to anyone newly diagnosed or their family with your experience with the condition?

 

CK: This isn’t something I’d jsut say to someone with Epilepsy in the film and television Industry, i’d say it to anyone with a disability entering the industry, it will get better eventually… but it’s gonna be hard to start with. I think it will make you a stronger person, it’s certainly made me fight for what I want in life and have this need to prove people wrong built in to me

 

RG: The proving people wrong thing I get, glad it’s not only me! I feel like a part of me is driven by vendetta, like “whats that? You don’t think I can do it? Waatcchh meeeee” but I honestly don’t know why? Must come back round to the being told what I can and can’t do now I have epilepsy but at the same time being told oh well it could be worse. My advice would be to push yourself as far as you can, so you know what your limits are and then you know your boundaries.

 

CK: And don’t stop living your life! Be kind to yourself and take the time you need. I didn’t come to terms with my diagnosis till I was around 21, it took a lot of time to unpack everything and process it all. In fairness there are still things I’m processing and that’s okay.

 

RG: agreed, I didn’t come to terms with mine till I was even older than that. It’s really hard to explain to people but I’ve been met with (almost) nothing but kindness with regards to it luckily. I don’t have an ‘aura’ so I don’t know when I’m about to have a seizure, I’m fully unconscious during a tonic clonic, I quite often don’t even know when I’ve had one and when I come round I have no memory of where I am, what I was doing etc. so I really rely on the kindness of others to help me.

Epilepsy in the film and television Industry – What are your hopes for the future for Epilepsy Research and general awareness for the condition?

 

CK: I guess the hope for me is making it less taboo, it would be great for people to know just enough about it that they don’t think that if they flash a light in your face that you’ll fall on the floor, like, no, there are over 40 different types of this. Obviously I don’t expect people to know it inside out, but it would be amazing to one day be able to apply for a job without a crazy panic

 

RG: It’s funny that, everyone asks me what to do which is lovely, really grateful for the support but I bet they don’t expect my answer when I’m like, “nothing. Just leave me to it, move anything out of the way that I could hurt myself on and have fun watching, unless it lasts longer than 5 minutes or I have two in a row of course… then you need to call an ambulance.” Usually follow up with “and if you stick a spoon in my mouth and damage any of my teeth [insert violent threat here] hahaha”. I get a lot of spoon questions still.

 

CK: Yeah, I mean having absences you literally do nothing! They probably wouldn’t even know I’d had one even if they were standing right in front of me. Having people not panic would be lovely.

 

RG: They probably panic because it’s misunderstood so raising overall awareness would just be awesome!

 

CK: Having a unit on disabilities at school would probably be a huge help, cover the common ones for example; Epilepsy, Cerebral Palsy, neuro-divergent conditions like Autism. If that was integrated into the science syllabus or something it would help a lot for everyone, not just the epileptic community.

 

RG: That would be awesome! So we also asked “How has Epilepsy affected your access to film and television?” via @epilepsymemes Instagram to their 6,000 followers (thank you!) and had a lot of answers! Many were all along the same lines which I found quite sad and this is where I would love Epilepsy Awareness to step in and maybe do something for those who struggle watching the beautiful pieces of art we’re creating for the world!

CK: I think it should be a legal requirement to have to Harding test films, not just broadcast TV, in the U.K. and ideally, globally! That way perhaps cinemas wouldn’t be such a scary environment with those with epilepsy. It would also make it a whole lot easier when films get shown on TV too as it wouldn’t have to be PSE checked and fixed to broadcast. It would already be fine!

 

RG: Would surely save them a lot of money first time round as well, and we might see a lot more people come back to the cinemas and watching movies! I can’t imagine not being able to go to the cinema and I do worry where the cinemas have been closed for so long during the pandemic, luckily for us working in the industry, they found a way around it by releasing stuff on the streaming platforms, but I hope that this doesn’t mean the end of cinemas. Have you ever struggled to watch a movie?

 

CK: I struggled with Star Wars a little bit when they re-vamped them all, with all the lasers and stuff. Not to mention The Accountant, which has an entire plot device of Ben Affleck sitting in a room looking at a strobe to “relax” – no thank you to the EEG throwbacks thanks!

 

RG: Ah that sucks, Alien is a film I can’t watch! I’m pretty sure it’s the only film in history that I’ve ever turned off, those flashing lightings at the end last FOREVER. So If anyone wants to tell me how it ends I won’t be angry.

RG: I feel that this is an interesting comment that keeps coming up, in the world of grading everything is moving toward HDR (High Dynamic Range) grading/deliverables and soon the consumer TVs in a normal household will follow suit and they will naturally move from 100 nits to 1000 nit TVs and content. So if having to dim the TV at 100 nits because it was too bright then it’s about to get a hell of a lot worse. I personally wish iPhones would dim a hell of a lot more than they currently do without having to go through a million settings to reduce the white point and then forgetting how to set it back to normal so you can see you phone in normal day light ha.

CK: TikTok did recently implement PSE filters actually – There’s now a warning so you have to click a button to be able to watch it which is really good of them, it’s still not perfect but it’s better than nothing.

 

RG: It would be amazing for all social media to follow suit so epilepsy awareness is across the board – Including YouTube

 

Epilepsy in the film and television Industry – What do you hope to achieve from opening this dialogue about working with epilepsy in the Film and Television industry?

 

CK: I entered the film and television industry through a diversity scheme run by Channel 4 and ThinkBigger. It is my hope that one day these kind of schemes won’t have to exist to provide disabled people with opportunities and that can only happen through promoting awareness around conditions like ours. Not only to prove to employers that you can, but also to young disabled people who may not think that they can, because they don’t know of anyone who is. Back when I originally got diagnosed and was into acting I had no idea that Hugo Weaving – Mr Smith.. Lord Elrond!! has epilepsy. I had no idea that Prince, Elton John and Ian Curtis had and have epilepsy. Back in 2008 while you could google stuff it wasn’t really the same and I didn’t know what I was looking for so I just assumed well I can’t see anyone like me so it’s impossible. In saying that – these are all people in front of the camera. We don’t hear about the people behind the lens and how they make their epilepsy in the film and television Industry work.

 

RG: I hope people with epilepsy, and perhaps any disability will feel comfortable enough that there is always a way to fulfil your dream regardless of what it is. The world at the end of the day is made up of kind people who just want to help. My favourite saying in life is “if you don’t ask, you don’t get”, So don’t be afraid to ask and reach out to anyone.

 

CK: If by speaking up I can and make even one person who has made themselves believe they can’t because they don’t know of anyone who’s made it work realise that’s not true then I’ve done my job. So with that being said – to the person that answered the @epilepsymemes Q&A saying they had to drop their film course: there is definitely a place for you here so don’t give up on your dreams yet. We’re all warriors in it together and the OG creators of offline brain media so it’s a bit rude not to include us to be honest.