An Epilepsy-Having Cinephile’s Manifesto

I experienced my first epileptic seizure in 2005 when I was thirteen years old. I was sitting at my family’s dining room table getting ready to go shopping with my mom when it happened suddenly. I was out for about five minutes and could only hear vague sounds of people speaking and my mom crying before I came to consciousness and was taken away by an ambulance. I had a few more seizures after this and had some tests done before it was officially diagnosed and I was put on Tegretol. Ten years later, I average only about one seizure a year which, while not preferred, still makes my situation a relatively contained case of the condition.

Nonetheless, I still struggle with the side effects of my disability every day of my life. Even when I am consistent in taking my medication, I still leave my house everyday unsure whether or not I’m going to have a seizure in a public location. This is scary especially when I’m alone (which I mostly am), since this leaves my trust in complete strangers to know what to do should I suddenly lose consciousness around them. Here’s a fact: chances are, most people don’t have a clue on how to help someone should this occur.

There is a visual sort of anxiety that also comes with having this neurological condition. With each episode, I usually experience a sort of visual cue – an aura of flashing lights that occurs on the right side of my field of vision, before I start to experience the confusion and body tensing of a seizure. I’ve always had a tough time trying to explain what it is I see exactly, but it’s similar to a lot of light-related instances that occur everyday. It’s similar to the phenomenon that happens after a bright light (e.g. a flashlight or the sun) is shone into one’s eyes and they can see the after-effects for minutes afterwards. It’s even similar to the feeling one gets after sitting in a dark room watching a movie for a while, then suddenly stepping out into the bright daylight of the real world. In other words, I can easily get glimpses of these visual cues at multiple points through my everyday life. Since these cues are recognizable to me as the onslaught of a potential seizure, perhaps the anxiety this causes me is understandable.

In 2012, during the midst of my exploration phase as a cinephile, I watched Gaspar Noé’s Enter the Void for the first time. I hated this film for many reasons. While it wasn’t necessarily one of the reasons why I hated it, an initial annoyance I had with it was the film’s usage of flashy strobe light effects, especially during its title sequence where it appeared unannounced. Particularly within the past year or two, I’ve had similar annoyances with the quick editing and bright, flashy visuals that tended to occupy many films, shows, video blogs, music videos, and (especially) movie trailers. At the time of this writing, none of these have ever triggered a full-blown seizure for me; however, they have always disoriented me at least slightly, sometimes to the point where it affects how I consume other media throughout the rest of my day. At this point, it’s just a given that I’ll experience these annoyances at some time or another, but some days are simply more frustrating and anxiety-inducing than others. A trip to the movies can unexpectedly turn into me taking one or more “bathroom” breaks in order to ease my nerves and steady my vision before returning.

While I’ve in the past seen great resources that outline how much violence, sex, abuse, or other content is present in a certain film or TV show, I haven’t seen a reliable resource that covers visual aspects that could be bothersome for people like myself. Sure, there are a few movie lists out there, but very little of them are up to date and none that I’ve seen go into much detail about what the film may entail that could be triggering. This may just be that there is a relative amount of ignorance on the topic – I myself have only met a handful of people who are also cinephiles with epilepsy.

Soon, it occurred to me that if I wish for such a resource to exist, the best thing I could do is to actively create one myself. Thus comes my current project: Cinephiling With Epilepsy. The steps I take are easy enough: I watch/rewatch a bunch of films (as I usually do) while taking notes on scenes, moments, or other aspects that could be problematic for others who are neurologically-disabled. I’ll try my hardest to include time markers or visual/audial cues that may signal when a scene begins and/or when it ends. Once this is done, I’ll share the notes I’ve taken up on my blog page. Although my condition has been relatively tamed and I take medication everyday, I fully understand the risks that are involved with undertaking such a task. Therefore, I aim to watch these films in a safe area and/or with someone who knows how to take care of me should the worst occur.

Elements I’ll be considering include (but are not limited to) the following: strobe light effects, flashing lights in general, a high contrast between bright and dark in the same frame, (extremely) fast-paced editing, rapid juxtapositions of images, shaky cam, disorienting/psychedelic patterns, bright colors/textures, and fast-moving imagery in general. Basically, even if something doesn’t bother me personally – although many of these elements do – I always keep in mind that there are plenty of people whose conditions are far more severe than mine. I want to try to keep as many folks into consideration as possible – otherwise, this project serves little purpose!

There are two things I would like to note at this point. Firstly, this should not be treated as a full-stop deciding factor of one’s limits. I am going to try to be as detailed as I can (and yes, there will be spoilers), but in the end, no one knows your brain or body as well as you do. These entries are primarily intended for assistance on reaching a final decision and should not be treated as anything more. Secondly, I am not suggesting that these films should or should not be watched based on quality. I will be watching many of my personal favorites that may have multiple warnings attached to them. On the other hand, I’ll also be watching films I don’t fancy much, yet might only have a couple slight warnings. In general, this exercise is purely objective and will not delve into any major critical aspects of the work; that’s for another day. With that being said, if you’d like to know what I think of a certain film (to date I’ve watched almost 3,000!), feel free to message me at any time. This also goes to those who want to talk to me about epilepsy-related stuff as well – my arms are wide open.

Above all, I really want to help people. I’m not going to pretend that I can understand the day-to-day life of someone with a much more severe neurological condition than I have; to do so would undermine the very real experiences this person must undergo. What I can say, however, is that I understand the struggle of enjoying something immensely, yet being held back by a condition that is beyond my control and ultimately alienates me from the vast majority of the community that could never know how this feels. Overall, while I know that this project won’t mean much to most of the neurotypical film community, the small fraction of filmgoers who do benefit from my efforts, even in the most minimalistic of ways, will ultimately prove that my work is not trivial. In the end, this is all I could ever ask for.

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One Response to An Epilepsy-Having Cinephile’s Manifesto

  1. This is a really great project. Thanks for doing this!

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