The Epilepsy Thing
August 6, 2013 27 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.”
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.
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 fucking 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.
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 if 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.
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.