The Epilepsy Thing
August 6, 2013 52 Comments
If you have epilepsy, do not use this editorial as a baseline for your own ability to play games. Consult with your doctor before attempting to play any video games.
In order to play upcoming Xbox Live Arcade title Charlie Murder, I had to ditch my beautiful Sony 3D LCD television and instead slum it on an old projection TV with a fading image. In addition to that, I had to bring extra lighting into my office, and wear sunglasses. This was in addition to my normal precautions, which include a proper distance from the screen and my medications.
Photosensitive epilepsy is the hand I was dealt at age sixteen. I don’t think I’ve ever experienced anything as terrifying as my first seizure. It’s something I wouldn’t wish on my worst enemy. But what was really terrifying about it was, I love video games. They weren’t the only thing I was potentially about to lose out on forever, but they were the thing that at age sixteen I felt I couldn’t live without the most. It took over a month before my doctor and various specialists were able to deduce what I had. When I was sat down to have explained to me how my life would unfold from here on out, I remember being too scared to ask if I could play games ever again. I couldn’t even spit it out, and the doctor excused himself to get me literature and my starter pack of medications. Finally, I kind of whimpered to my parents “I don’t think I’ll be able to play games again.” When the doctor walked back into the room, my father was the one who asked. I felt a literal weight lift off my stomach and shoulders when he said “it’s not out of the question, but she’ll have to exercise caution.”
Ever since my Vintage Hero review, I’ve been besieged by endless requests to try another Mega Man-inspired XBLIG. Well, I actually did purchase Rad Raygun way back when it came out. It became one of two XBLIGs that triggered a seizure in me. The developers of Rad Raygun are not responsible for that at all. I am. I took the risk of playing it. They had warned me that they were unsure about sections of the game and that I should show caution. I played it anyway, because I was like “well, it looks like an original Game Boy game, with pale greens, blacks, and whites. I don’t think it could possibly set off a seizure.” I’m not sure where exactly the spell happened, but there was a moment that caused it. I don’t remember most of my experience with it, but according to Brian, I seemed to be enjoying it despite some objections to the controls. I would also like to say that developers TRU FUN Entertainment were super classy and apologetic about the whole thing, despite having done NOTHING wrong. I appreciated their sympathy and I will look forward to their future projects. They’re good dudes. You can read a review by my friend Tim Hurley of TheXBLIG.com right here.
I was advised to wait until my body got used to the medication I was given. In that time, I had exercised extreme caution towards such simple things as turning on lights or watching television. Games require slightly more attention than passively watching TV, but at least I knew gaming would return to my life. Then I was given the go ahead to play games, with the understanding that it could be years before I fully had a handle on what could set off a seizure, so caution and supervision would probably be required. Also, you know how every game has one of those bullshit “remember to take a break every hour” reminders? Yea, those would never be bullshit for me again.
So obviously I did the happy dance of joyful elation and jumped right back into my beloved games, right? Well, no. I remember looking at my Xbox and picturing Russian Roulette in my head. Literally, that’s what I thought. I imagined a bullet being loaded into a chamber, and pushing the power button as pulling the trigger. I didn’t play games that day. I didn’t play them again for nearly two weeks after I had been given to go-ahead. The next time I played a game, it was for my Nintendo DS. With the back-light turned completely off. It was a game called Lost in Blue, which I had previously started and not finished. I knew it wasn’t flashy. It was my ease-back-in game. Eventually, epilepsy became the boogeyman. I dealt with it on a regular basis, but not from gaming. Nearly eight years later, and I’ve probably had seizures as a direct result of playing games maybe five times.
Two of those seizures were the result of games I was reviewing for Indie Gamer Chick. Do you know whose fault it was that I had those spells?
Mine. And mine alone.
My doctor made it clear to me: gaming will always be a risk, from here on out, for the rest of my life. The fact that I can even play games today is something I’m very grateful for. Epilepsy has limited my life in other ways. I can’t get my driver’s license. Nor should I attempt to get it. I would be a risk to myself and others. I met a fellow who lives with epilepsy who told me it was bullshit that he couldn’t get his license, even as he conceded that he couldn’t predict his spells. I thought, “wow, you’re an incredibly selfish human being, are you not?” Personally, if I had to choose between risking the lives of others on the road or catching the bus, I would think the bus would be a lay-up. I guess not everyone feels that way.
I am absolutely worried sick that I won’t be able to play Rain. I would guess the game will feature lightning effects, which are typically the cause for those bright, screen-wide strobes that set off seizures in me. Will I be heartbroken if Rain turns out to be off-limits? Yes. Is it the end of the world? No way. There are thousands of games that aren’t off-limits to me. In that sense, I’m extremely lucky. Some people can’t play games at all. UPDATE: I could play it. As it turns out, I should have been more worried that the game would be boring.
You know, as a kid, I loved attending Golden State Warriors games. I was obsessed with them. When I was eight-years-old, I loved Latrell Sprewell so much that I convinced myself that P. J. Carlesimo’s neck must have assaulted Spree’s hands. Today? I can’t safely attend Warriors games, because flash bulbs explode for every player introduction, fast-break, dunk, lay-up, or if a visiting star like LeBron James so much as smiles on the bench.
Now imagine if I took my no-Warriors limitation to the extreme and said I would sue the Warriors organization, the city of Oakland, and Oracle Arena if they didn’t ban flash-photography from the building. Not only that, but force them to also eliminate the flashy home-team introductions, and the rally-graphics from the display screens. It would create a boring atmosphere for everyone. Personally, I would hate myself if I caused that. Yet, since my epilepsy became public knowledge, I’ve had many people afflicted with it say we ought to all come together and file a class-action lawsuit against the gaming industry. Ummmm, no. We really shouldn’t. Because we are in fact not the center of the universe.
I’ve had eight years to accept that not every game is playable by me. A few years ago, my father got me an Atari Flashback as novelty gift for Christmas. Oops. As it turns out, in the dark ages of video games, the only special effect developers had at their disposal was to make the game brightly flash strobes like it was trying to signal for a helicopter to land on your TV. You know what? I’m remarkably lucky. I live in an era where there are thousands of games accessible to me without fear of my personal trigger. Not only that, but the more hours I put into gaming, the more I’m able to accurately predict when a scene is coming up that will feature my triggers, and I can simply look away.
When I’m asked if I’ve ever played an old Atari 2600 game, if my answer isn’t “yes, I played it when I was a kid” then chances are the answer will be “I can never play it.” Old Atari games rely heavily on strobe effects, which are my personal trigger. I had a seizure playing the game Haunted House on the Atari Flashback my father gave me a couple of years ago. I did play some Atari games before I developed epilepsy. I even had Activision Anthology for my Game Boy Advance and Atari’s Greatest Hits for my Xbox. Chances are I didn’t like the games too much anyway. What can I say? I’m a whippersnapper with no appreciation for the classics.
Not everyone is as lucky as me, and I do sympathize with those that aren’t. I can’t imagine how my life would have played out if I had to quit gaming at age sixteen. At the same time, not everyone gets to experience everything the world has to offer. I know in America we teach that with hard work and perseverance it isn’t true, but unfortunately it is. If your epilepsy is more severe than mine, maybe gaming is not for you. Making threats against the game industry, or against hard-working developers is not going to make them sympathetic to your cause. Changes to the industry will not be forced by angry lawsuits. Angry lawsuits make people feel like they’re under attack. Which they kind of are. I find that not being a bitch about it makes people want to learn from me. If I berated them for having the nerve to try to be artistic, they might end up not being interested at all in learning how to improve my gaming life.
Do I wish there was a change? Yes. I wish developers would make some of their special effects that have no bearing on gameplay optional. But only if it’s cost efficient to them. That’s not always the case, but if it is, that option could mean the difference between someone like me playing their game and someone like me only hearing about it. A perfect example is Fez. At the time it came out, I had been doing Indie Gamer Chick for less than a year. My readers hadn’t quite got a feel for what was and wasn’t off-limits for me. Today? Hundreds of people have my back, and look out for games that are potentially dangerous for me to play. I have hundreds of guardian angels whose vigilance protects me on a daily basis, and that is cool as hell. But at the time Fez came out, I bought the game after some people had played it and said the flashing wasn’t “too bad.” It took me about an hour to find out that Fez was totally off-limits for me, because I had a minor spell while playing it.
I know Phil Fish is persona non grata today, but actually either he or someone for Polytron Corporation were mortified that Fez posed a risk for me. They couldn’t believe it, because the game had passed Microsoft’s seizure risk certification. What they weren’t aware of was that certification only applies to those without a preexisting condition. If a person already has epilepsy, it means nothing to them. Is that Microsoft’s fault? Absolutely not. Is it Phil Fish or Polytron’s fault I had a seizure while playing Fez? No. It’s my fault. I assumed the risk of playing a game, as my doctor made clear to me. That risk was realized and I had a spell. Fish and Polytron couldn’t have been classier in the aftermath of it. My only regret is I couldn’t play their game more. I was apparently enjoying it.
I wish gaming had a database for people with photosensitive epilepsy. Something as comprehensive as GameFAQs, only it listed potential risks and triggers for games. Who would contribute to this? Well, judging from the fact that I have hundreds of fans who on a daily basis warn me about games, movies, TV, or even random YouTube videos that could be a risk for me, I’m willing to bet gamers of all stripes would be eager to contribute. But, it’s not as easy as just listing the whole flashy, strobe-effect thing for everyone. Epilepsy doesn’t work like that. There are thousands of known triggers across the epilepsy spectrum. Some people are sensitive to flashes, like me. Some people are sensitive to repetitive patterns. Some people are even known to be sensitive towards specific colors. And once you have a feel for what someone’s trigger is, you’re not even taking into account their personal degree of sensitivity. In theory, everyone is vulnerable to epilepsy. That’s why certification like Microsoft’s exists. But for me? My sensitivity is all over the place. Sometimes it takes a lot to set me off. Then you instances like the one time I had a seizure from looking at my desk lamp, looking away for a moment, then looking back at it.
Who knows? Maybe one day, I’ll be able to play Fez. I was sort of counting on a Vita or 3DS port, which I could play with the back-lighting turned off. Alas, it doesn’t seem to be in the cards.
Obviously a database could not include everything. But if we could isolate the statistical top-triggers among the epileptic population and list possible risks of those in each game, we could open up gaming to thousands of people who don’t have the type of support system I’ve built up over the last two years. We could also use it to educate developers. I don’t want to compromise anyone’s artistic vision. I’m not that selfish. But if they can make those effects optional, that would be awesome. In fact, over a dozen XBLIG games have added such switches after the developers met me. I’m proud of what I’ve been able to accomplish as Indie Gamer Chick, but the getting the gift of having a game with a switch that lessens the potential risk for me to play it? It makes me tear up every time. We all have a chance to give this gift to an entire community of potential gamers. I don’t know how we’ll do it, but let’s make this happen.
I support the Epilepsy Foundation, a not-for-profit organization that aims to not only learn possible ways of treating epilepsy, but also strives to improve the quality of living among those who live with it. Their tireless work has been invaluable to my life, and the lives of millions of others. Follow them on Twitter (they only have 9,400 followers. Paris Hilton has eleven million followers. There is no justice) and if you have the means, please donate to them. Every little bit helps.
Let’s open up how we’ll tackle this database thing in the comments. I’m also hearing from my Twitter fans about possibly expanding the idea to include other limitations, such as color blindness, or games that can be played with one hand for those missing limbs. Let’s make this an actual discussion. I’ve said for two years now, I have the best fans in the world. Let’s prove me right on that.
I want to thank my friend Cyril Lachel of DefunctGames.com for being one of the guys who always keeps an eye out for me on the gaming thing, not to mention countless guys and gals on Facebook and Twitter. When I said you’re my guardian angels, I wasn’t being cute. It’s true.
Indie Gamer Chick 
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Hey, I myself have had epilepsy and for seven years I had to take medication against that. Two years ago my doctor told two variants to go further: 1. I´m paying the medication myself or 2. I will set down the medication until zero. With the risk to get a attack.
I chose opinion 2. I was lucky, i have made my driver license, i have got a office job and so on.
I can play video games as much as I want, but I´m still aware of the risk.
An all those handbooks with warnings, all the ingame reminders to take a rest, all these reminds me on these people who haven´t had the luck to get a driver´s license or a normal job, those who have to take a high medication and still can´t watch TV.
I really enjoyed reading this article, it raised a very valid point about options. I now some games can allow you to, say, change the graphics to a lower resolution, or opt out of weather effects such as lightning. I know, from my brief spell on a low-resolution TV, that Minecraft isn’t very black-and-white friendly, though if this would affect those who are colourblind I’m not too sure. I think your ideas are great, and I think your approach to everything is very classy. You don’t let it anger you, it just makes you grateful for all the things you can do despite how you are. And I think the games industry is just as lucky to have such a devoted and appreciative fan as you are to have so many readers. I, for one, will be sure to consider everything you’ve said as I work in games design. Especially the lightning effects.
Do games which allow you to dim the brightness and things help at all with risk points? You did mention backlighting.
Back again – just to say your work has been an inspiration to me and I’ve nominated you for the Sunshine Bloggers Award. You can find out more about it here – http://diaryofanirnbrujunkie.wordpress.com/2013/08/07/sunshine-blogger-award/
Sorry, I just now caught this. I’m flattered that you nominated me, but I have to respectfully decline as I don’t think the rules for accepting it are compatible with the type of writings I do here. It wouldn’t be topical. It’s almost in a way like a chain letter. But I do appreciate that you thought of me. Thank you 🙂
A really straightforward way to do the database you’re talking about would be to make a wiki. Since potential triggers are numerous, it would be helpful to have the option to put in any text (which is easy in a wiki).
Plus, you can start one for free and probably get a decent amount of content started in the next couple of days while this article is still fresh in readers’ minds.
http://wikia.com
I loved reading your article ! I used to be such a huger video game player ! I miss playing, but I can’t even watch tv without convulsing after a while, so I decided to forget about video games. It’s hard, but I don’t want to end up at the ER again. I still read what the game creators have to say and so on. Your idea of a database is very interesting ! I’m afraid I’m not brave enough to try… It would be really a huge step if developers were to work on the effects that trigger epilepsy and could make video games we can play without feeling endangered somehow.
Great article!
It’d be nice if a site like gamefaqs had a section for this, and a wiki certainly could be an option, but neither of those would really help someone with one hand (for instance) find a list of games they might be able to play. I think an actual database is probably the best option.
Since a lot of the potential issues might not be so black and white, what about an upvote/downvote system for each disability / trigger? That way you could gauge a little better whether something specific may be a problem.
Hi Cathy,
I’ve contacted the CM of Giantbomb.com to see about the possibility of adding this type of warning to the Game Details deck located on the right side of their game wiki pages. You can see the wiki pages as an example here: http://www.giantbomb.com/pikmin-3/3030-27930/
Basically I’m asking them about the possibility of adding a warnings section below the “aliases” on the right side with a drop down to include warnings about these types of triggers. If this is something they can accommodate they would likely need some input as to what warnings you would like to appear. Something like “Epilepsy: Flashing Lights(mild-severe)” or “Epilepsy: Repeating patterns” etc as a drop-down menu item that can be edited/added to a game details page by users. The GB database is huge, freely editable by users and moderated.
Via twitter he said they could look into it, I’ll keep you posted if I hear anything more after contacting them via their site.
I think it’s a great idea, but you need to establish some kind of standard for what exactly is hazardous. Maybe just have players report when a game causes them symptoms of motion sickness, vertigo, etc. I usually go off other player’s anecdotal stuff as a warning for my own personal triggers.
That would, hopefully, be what it turns into. The users are the ones who would be putting that info in the database, so my hope is that would be users experiencing problems adding that warning to the database. Perhaps a more descriptive name like “Reported medical warnings”?
You guys need to be smart about this and think of legal liabilities. Developers and console manufacturers are eager to help, but they’re also not going to be thrilled with the idea of people discussing medical issues caused by their games. Especially the larger developers.
That’s why there needs to be a disclaimer attached to it, noting that this is (1) not medical advice (2) not typical results.
Understood. ATM its simply a request to see about the possibility, they’re much more versed in the legal ramifications of their wiki info than I would be. if nothing comes of it, it never hurts to ask!
Yep, it’s something that’s interesting, but there would also be some stuff to figure out. It wouldn’t be anything that happens in the near future, but maybe!
This will take a lot of time to get going. But it would be great PR for you guys and it would change people’s lives.
As an indie game developer, I appreciate your reasonableness about your condition and acknowledgement that accommodating every possible gaming-related handicap is beyond the resources of some developers.
It can be hard to walk the line between fighting for a cause and being unreasonable and self-entitled. People will say “You can catch more flies with honey” and that they’d be more sympathetic to minority groups if they weren’t so angry/bossy/whatever, but then ignore them when they ask politely. Unfortunately, not a lot of change happens without people getting at least a little angry.
But I can personally say that your attitude in this article makes me want to do more to accommodate handicapped users, which is something that I’ve striven to do ever since my days as a web designer. I recently had my latest game, Sector 7-4-9er, reviewed by someone who was, I think, less reasonable about the game’s effect on her epileptic child. It left me with a feeling of “well, just screw it then!”. But of course, there’s no sense punishing those who suffer quietly just because some suffer obnoxiously. What I’m trying to say is that your article was a nice reminder that those other people exist.
Casey, not everyone reacts rationally to situations involving their children. Put yourself in the parent’s shoes. They have to deal with a very heavy psychological and emotional burden of having their child live with epilepsy. Many people with such pressures lash out at others. Their anger might not have been specifically towards you. My heart breaks for them. I know what my parents went through. It’s not easy.
However, it’s true that many people in positions such as mine have a sense of entitlement. I don’t understand it myself. If you live with photosensitive epilepsy, the risk can never fully be alleviated. You can remove all the triggers and the player with epilepsy is still at risk. If a child’s epilepsy is severe, the parent’s first concern should be the welfare of the child, not the child’s forms of entertainment. If I had been younger when I developed epilepsy and unable to comprehend the risks involved, my parents would not have allowed me to play games.
I think our culture stokes that sense of entitlement. I’m not comfortable calling my epilepsy a handicap, because that puts a focus on stuff I can’t do. I can do a lot with my epilepsy. If the worst thing that I lost from my epilepsy was my ability to play video games, I would still have been an incredibly lucky person. People with handicaps are capable of doing incredible things beyond many people’s perceptions. Who doesn’t admire a person in a wheelchair who can do incredible athletic feats? But sometimes our culture likes to create a perception that there should be no limits, and that’s irresponsible. In theory, I could learn to drive. Maybe even get my driver’s license. But that doesn’t mean I should. And some people, unfortunately, should not play games because of their epilepsy.
My goal is for developers to add options to their games to lessen that risk for adults or parents of children with epilepsy with full awareness of what the risks are. My other goal is to create a database that can steer those with conditions such as epilepsy towards games with a lower risk. But, there is no such thing as a “safe game” for someone with photosensitivity, and no amount of threats of lawsuits or anger will change that.
Hey, I was reading your article and had a thought – I think it would be possible to make more games playable to epileptics by using a post-processing effect that dampened strobing in games. You could design a filter than automatically dimmed frames that jumped up in brightness past a certain threshold. That means that lightning and explosions would jump to grey instead of white. Such and effect could be injected into games even if it isn’t included by the developer. Does that sound like something that would help you?
It might help me. I would need more info.
A number of different people have created things called FX-injectors, that apply custom post processing effects to games. I’ve emailed a few of them asking how difficult it would be to make an effect that blocked sudden flashes of light.
Unfortunately games in VR are something you will most likely never experience unless you did them prior to your first episode. Im currently playing Proton Pulse Rift using the Oculus Rift dev kit. The visuals are INSANE! Its like watching fireworks explode directly in front of your eyes. Its the most complete Rift specific game available afaik. There are a couple of youtube vids of how it looms on screen on youtube so check those out if you can. Ill be uploading a youtube vid of my son playing it soon.
Yea, obviously that stuff is going to be off limits to me with no exceptions. One of the three three main keys for prevention for me is proper distance. Oculus Rift is the opposite of proper distance. Even if the game gave off the illusion that stuff that’s happening is far way, it’s just that: an illusion. Baring a medical miracle, a cure for condition, I’m never going to be able to play it.
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Great article. Just read through it. I learned a lot.
I forgot about the Rain part. You know, it was not a bad game, but it’s probably my biggest let-down of 2013.
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Y’know, that’s a very interesting idea. I can totally see a website purely dedicated to tagging games for disabled players (not just epileptics) being a thing that works with a good community behind it.
Time for a kickstarter. =P
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“Personally, if I had to choose between risking the lives of others on the road or catching the bus, I would think the bus would be a lay-up. I guess not everyone feels that way.”
Not everyone *has that option*. It’s nice that you live somewhere where catching the bus is reasonable, but for me it’s a four hour walk to the nearest bus stop.
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Hi Cathy, great article!
I’m developing Oir, a music game for iOS. The game has a rhythmic strobe-like light that I think could be harmful. The light can be disabled by the player in the options menu and that provides a very dull visual experience.
Including the “disable flashing lights” option is a good thing BUT it’s not enough. I would like to make “inclusive” visuals. Visuals that are not harmful to most people with epilepsy. I know it’s not possible for me in the near future since I’m working with a tiny team with a lilliputian budget, but I would love to have some suggestions and -maybe- some examples from “safe” music videos.
I found some tips here: http://gameaccessibilityguidelines.com/avoid-flickering-images-and-repetitive-patterns/
Yea, that would be a site that I’ve worked closely with. Totally endorsed.
Thanks for sharing your story. I’ve played less than 20 hours on the Xbox1 since being diagnosed. It feels as if my brain starts to get heavy, tired and stressed ….. I know if I don’t immediately lay down on my back in the dark, I’m going to have seizures. I hate being out of control & im not good at taking gaming breaks plus some simple games like match 3 baffle me. There’s so many gaps in my memories. Oh dear, sorry to ramble on and on. It’s just so refreshing to NOT feel alone with my epilepsy. Thank you for all you do!!!!!
Talk to your doctor for sure. This is NOT medical advice, but remember, distance from screen, proper lighting in the room, and take frequent breaks.
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