A boy lies on the floor, shaking and writhing uncontrollably as those around him try to wrestle him into a safe position. A boy stands on a playing field, unconscious, eyes rolling, as his friends and mother try to understand what is happening to him. Both of these situations could be episodes in the life of someone who has epilepsy, but they are not. They are episodes in season two of Stranger Things, Netflix’s critically acclaimed eighties horror pastiche, where a monster is repeatedly attacking the boy in question.
If in the past, you have tried to understand what someone with epilepsy goes through when they are having a fit, you must watch Stranger Things. If you have watched it, then read this and watch it again.
Perhaps ‘episodes’ is an apt choice of words, as this is what the friends and family of Will Byers, the boy in question, call his strange experiences. They are confused by them, scared of them and unable to understand and solve the boy’s problems. This is something that I, as an epilepsy sufferer have experienced me, my family and my friends having to deal with.
Like me, Will has woken up in strange places scared and confused with no immediately apparent explanation of how he got there. Like me, him and his long-suffering mother Joyce have disagreed with the doctors and experts who think they know what is best for him. They call it the upside down, we call it epilepsy. But, much like in the series, the parallels run much deeper than that.
Let’s go back to the boy, Will, shaking with his eyes rolling. This scene was the most perfect allegory for an epileptic fit I have ever seen. It was a lightbulb moment for me and my attempts to really show those who want to understand what an epileptic fit, and epilepsy in general feels like. On the playing field, and everywhere else, no-one can see the monster coming and nobody knows when it will strike, not even Will. When it does strike, as it does toward the end of Season 2, Will’s terrified friends and mother see him unconscious and moving with rolling eyes for no apparent reason. To Will, he is a conduit for something irresistibly massive and monstrous; something which is slowly obscuring everything and replacing all perception with itself as it tries to force its way inside his head. He starts by confidently trying to make it stop, as I have with some success in the past, but it eventually presses into him, fighting against him as he resists and putting more pressure on his senses and his fragile brain. He tries to hold on to reality as it takes over more and more of what his senses indicate is around him replacing it with noise too loud, and imagery too absolute to comprehend or handle. Finally, there is only darkness. He finally loses consciousness and comprehension of what he is doing Whatever the monster was doing is done. When this comes, it feels like a welcome reprieve; the calm after the storm, which in the case of epilepsy is ironic, because this is the point when most sufferers’ thrashing reaches its peak with no conscious mind to control the fit.
The monster, aptly called the Mind Flayer, becomes part of Will, possessing him, draining him and occasionally seeming to replace him with another person entirely. No wonder Will often walks around in a quiet and subdued fearful state. His submissive anxiety is something to which I can very much relate. It is like looking into my past. Although I have grown in confidence and combative ability, I still can’t drive, I indulge in one of my passions, surfing, rarely and carefully. When I am feeling particularly vulnerable, as Will does occasionally, I am often scared of being alone, or in crowds.
Families and friends of those with epilepsy, do you feel a little déjà vu when I tell you that Will has trouble using words to describe his experiences with the Mind Flayer and in the scary ‘other place’ he calls the upside down? In his case, he finds it much easier to use visual representations, such as drawings. This is because he primarily experiences his so-called ‘episodes’ visually, whereas I experience mine in the form of sound. But we still try. Will tries to tell his mother and a local police officer how it felt
Will: “I don’t know. It came for me, and I tried to make it go away. But it got me”
Mum: “What do you mean?”
Will: “I felt it everywhere. Everywhere.”
Like the Mind Flayer, epilepsy is a hunter on the offensive that you feel everywhere. It emerges out of nowhere as an adversary that you can’t see, can’t do anything about and can only feel after it’s too late. Something irresistible that must be defended against, but rarely ever can be. And when it gets you it is everywhere in your world, filling it up until there is nothing of reality left outside the crazed, uncontrollable noisy mess of the fit.
Will talks to his mother about another aspect of the monster’s attacks that I find oddly familiar, saying: “It’s hard to explain. It’s like old memories in the back of my head, only they’re not my memories … I don’t think they’re old memories at all. They’re now memories, happening all at once, now … It’s like they’re growing and spreading. Killing.”
I’ve mentioned déjà vu already. It’s a big part of my epilepsy experience. A sequence of memories that don’t make sense. That all come all at once during a fit, pushing their way into my head for no reason and with no sense. They never feel like old memories, they always feel like they’ve just happened and yet they’ve been there forever. The perfect, imperfect déjà vu. And yes, they do grow … and spread … and kill. Until there is nothing left in my head except them … and darkness.
Epilepsy is always there. It’s a threat no matter where I am in the world, yet it’s always just out of sight. Just like Will’s monster.