Cathy loved playing videogames, but a car accident left her with photosensitive epilepsy. But today, she’s working with the industry to help ensure people with epilepsy still get to enjoy games.
It was August 2005. A month earlier, I’d turned 16. I was on the road to recovery from a serious car accident in late 2003 that left me broken and battered. A dozen surgeries and 20 months of physical therapy followed, but at long last, it seemed like life was almost back to normal.
That all changed one morning. I was walking into the kitchen to join my parents for breakfast. Then, the next thing I knew, I was on a gurney in a hospital emergency room. The nurses and doctors were asking me questions, but I didn’t understand why they were there, where they came from or how I got there. I remember catching a glimpse of my parents, and I saw the utter terror on their faces. That’s when I got scared because I knew whatever happened, it was bad. It was hours before things seemed normal again. My dad was holding my hand while my mum was pacing back and forth. “What happened? Why am I here?” I asked. My dad looked at me puzzled, because I’d been told why multiple times. “You had a seizure, sweetheart. Don’t you remember?”
I thought my life as I knew it was over.
You see, up to that point, video games were my entire life. I’m on the autism spectrum. I had very, very few friends. I didn’t emote well. I had trouble expressing myself. None of that mattered with my beloved video games. I could go on fantastic adventures with them – solve mysteries or save whole kingdoms. I could be a spy or a turtle-fighting plumber or guide my Golden State Warriors to the National Basketball Association finals. I got a PlayStation on Christmas morning, 1996, which planted the seeds for gaming’s complete takeover of my life. Then a Nintendo 64 a few years after that.
From that day onward, I averaged 12 hours a day on my consoles. My parents recognised early on what a positive impact they had on my life – one of the only sources of self-esteem I had. Following my accident in 2003, I couldn’t even hold a cup for months. The thing that kept me going, that got me through the painful surgeries and rehab, was my desire to get gaming back. In fact, I believe once I was able to hold a controller or operate a mouse, it sped my recovery along. By August of 2005, I was still in physical therapy, but I had my games. I knew I’d be okay.
Then epilepsy became part of my life. Because of the trauma I’d sustained from the accident, I started having generalised seizures at regular intervals. Even worse, I had the double whammy of also being photosensitive, meaning flashing or flickering lights and images triggered my seizures. I spent nearly two weeks in hospital before I was put on medication and sent home.
A verdict on my gaming future wasn’t presented to me at that time, but I figured I knew the answer. Like so many people, I thought being photosensitive meant I couldn’t play games at all. At the age of 16, with all I’d already been through and the pain I was still in, I couldn’t imagine a life without them.
In early October 2005, doctors had everything they needed to know about me. We met with the main doctor on my case, but I was so frightened to ask about games. Finally, my parents asked for me. I felt the weight lift from my heart when he told me with caution and proper set-up and supervision, I could still play. He wanted me to stabilise on my new meds first, but hell, a month was nothing compared to the wait I’d had a year earlier. It was probably the happiest moment of my entire life.
About a month later, my parents asked me to come into the living room. They had a surprise for me – they didn’t want to wait until Christmas. The doctors had given me the all-clear. They presented me with a present to celebrate: the newly released Xbox 360, with Perfect Dark Zero and other games. I was overwhelmed with joy as I set up my new console and linked my account to it. The room was heavily lit and I had to be quite far from the screen, but hey, controllers were wireless now, no big deal!
I went to pop a disc in the drive. But, as the tray came out, suddenly my brand new Xbox 360 wasn’t a game machine. It was a revolver, and I was loading a bullet in the chamber. I felt like I wasn’t just about to play a game. I’d also be playing Russian Roulette with it. That day, I lost my nerve to play it, or any game. I wouldn’t even watch television. I went from being devastated at the thought of losing gaming to being too scared to even look at a game.
It took me almost two weeks to build up the courage to start playing games. I started as small as I could get, using a simple game called Lost in Blue on my handheld Nintendo DS. I was so on the edge playing it at first that I wondered if I would ever enjoy gaming ever again. Five minutes later, I was lost in the experience, and gaming once again returned to my life. For good this time.
Looking back on this time in my life, I realise the nightmares, anxiety, and fear would have been significantly lessened through better education to the general public about epilepsy. The biggest misconception about epilepsy and gaming is simple to explain: people with epilepsy can’t play video games. Game developers assume it. Gamers assume it. The general public assumes it. I’ve even met medical professionals who assume it. But those living with this condition can and do play games.
Of course, gaming had changed for me. It was no longer as simple as turning a game on, and never would be again. It took a LOT of experimenting to figure out what made playing safer for me. Distance from the screen was a major part for me. The less of your field of vision contains the triggering elements, the safer you are. It was a pretty hard pill to swallow for someone who used to sit close to large televisions. Rooms with screens had to go through several rounds of reorientation.
Lighting is important too. I could never play games in the dark again, which took the fun out of the horror genre. Early on, we tended to overdo the light, probably thanks to the saying “better safe than sorry.” Now I find it’s best to have a couple of lights placed alongside the viewing area that are brighter than the TV itself. Finally, if push came to shove, I could throw some sunglasses on for higher-risk sequences. These worked for me, and if I wasn’t lazy and took the time to set everything up, I could play most games. Not all, but hey, some people can’t play games at all. I genuinely consider myself lucky.
In July 2011, I started blogging under the name Indie Gamer Chick. It caught on quickly, and before I knew it, I was having a fairly significant influence on the independent game scene. I wanted to be different from other game critics, so I made a policy that I would never turn away a review request. The one exception I had to make was games with effects that could trigger my epilepsy. This had an unexpected side-effect: game creators started asking what they could do for me, and people like me. Before I knew it, I was having a major impact on game accessibility. Not just from small indie studios, either. Directors or project managers from major game studios were asking me questions about how photosensitivity works and how to handle it in their games. Like so many others, they believed that those with epilepsy couldn’t play their games at all. Once they got to know me and see my passion for games, epilepsy was no longer an unknown concept to them. Something that happened to other people. It was something that people who love video games might have too. It was real now to them, and it had to be dealt with.
Of course, epilepsy is so much more complicated than people realise. I had to squash so many misconceptions about it that developers realised there was no possible way their games could accommodate every form it takes. Thankfully, they still wanted to do whatever they could and continued to seek advice. I wasn’t alone in this, either.
Soon, developers who had studied the issue, accessibility supporters and fans who followed my game reviews joined forces. They were working with me to help spread the word and add options to games to make them safer. It was a turning point in my life, for sure. I’d amassed a pretty good Twitter following for a niche game critic known for having a foul mouth and no tact.
Today, literally thousands of those followers act as guardian angels for me, alerting me about games or other media that potentially pose a risk to me. There’s something about having complete strangers looking out for you that you can’t imagine how amazing it feels. We live in troubling times. But my faith in humanity is restored by people seeing strobes in a movie or a video game and their first thought is to warn me. It’s special. I’m so lucky.
That’s really my story. The luck. Because I could have just as easily lost games in 2005. If medication couldn’t properly manage my condition. If all the tricks we used didn’t work. It could happen to anyone, and almost happened to me. The world isn’t made for people with photosensitive epilepsy. Movies, concerts, sporting events, and especially video games typically don’t have us in mind. That was certainly the case in 2005, when the best you could hope for was a warning screen when a game started up. Even by 2011, when I started Indie Gamer Chick, it was rare for a game to include options to disable the especially bad effects. But, it’s not that rare today. For me personally, it makes me proud that I played a role in making that happen.
I thought that having epilepsy would be the end of my life in gaming, and maybe even the end of my life altogether. I wish I could go back in time and tell that frightened little sixteen-year-old girl that everything would work out. I’d tell her that she’d contribute to making gaming better for everyone someday. It’s something she needed very much to hear – that her story had a happy ending.
About photosensitive epilepsy
Around three in every 100 people with epilepsy are photosensitive, meaning some or all their seizures are triggered by flickering or flashing lights or images. If you suspect you may have photosensitive epilepsy, please consult your doctor before playing videogames or watching films with strobe effects.
For more information and advice about photosensitive epilepsy, visit our website.