5 Things Writers Should Know About Epilepsy

There is nothing I love more than to open a new book, get immersed in a fictional world, and actually relate to the characters. It seems obvious that characters should be relatable, but for those of us with epilepsy, it is very rare to have accurate representation of our disability in literature.

(How Dyslexia Made Me a Better Writer.)

In honor of Purple Day, I’d like to explain a few things about epilepsy that my fellow authors can use when creating characters who have epilepsy.

The most commonly known trigger for seizures is flashing lights. That is a trigger for a lot of people, but only one of many. Sleep deprivation is another common one, as well as exhaustion and stress. My seizures can be triggered by strong emotions, whether positive or negative. Staying emotionally balanced and peaceful is crucial to keeping the seizures at bay. I also get into sensory overload easily, so loud noises, strong smells or tastes, and large crowds can trigger them too.

It’s important to know that many people with epilepsy, including myself, get a warning right before a seizure called an aura. My auras can range from my lips tingling to feeling like I’m floating. It can give me two to five minutes between triggers and the seizure to get somewhere safe and quiet.

When most people think of seizures, usually they have a specific image in mind: Somebody loses consciousness, convulses, and vomits. A large percentage of people with epilepsy do experience these seizures, which are called tonic-clonic seizures, (or grand mal).

Tonic-clonic seizures are generalized, meaning both sides of the brain are involved. There’s a different classification of seizures called focal onset, which means it starts in one specific part of the brain. Depending on the area, some seizures don’t cause loss of consciousness. Absence seizures can look like a blank stare, something others may not pick up on.

I have focal seizures that originate in the temporal lobe and am fully aware and communicative during them. My seizures can look like a panic attack, as most of the symptoms are internal sensations. I often feel confused, have anxiety out of nowhere, and have visual and sensory hallucinations. I also experience repetitive movements like shaking, nodding my head, and licking my lips.

It’s nearly every day that I deal with seizures, but it’s not every day that the general public witnesses a seizure. What is a part of my day-to-day life, is seen as an emergency to other people. People can get scared and want to call 911. I’m able to explain that I don’t need to go to the hospital, I just need them to be present and talk to me during it.

However, those that can’t talk during their seizures can’t advocate for themselves. In that case, they could end up being billed for an ambulance ride, just for the seizure to already be over by the time they get to the hospital. Most of us carry our emergency medicine with us, and only need to go to the hospital if it doesn’t work.

There are so many options out there for treating epilepsy. The difficult thing is that it’s not always a single medicine that can control all of the seizures, and some medications interact with each other. It’s not a quick process and in my case has never been set in stone. Sometimes one medicine will work wonders at first, and then will become less effective the longer I’m on it.

Thankfully there are options for people whose seizures aren’t controllable by medication alone. Lifestyle changes can make a big difference. I have to prioritize sleep and avoid too much activity and stress. Personally, adding on VNS Therapy™ has been a game-changer in managing my condition and improving my quality of life.

I think most people who have seizures would agree that it’s just one aspect of their life. One major area that it impacts is transportation. It is against the law to drive a car if you’ve had a seizure anywhere from 3 months to a year, depending on the state. So a support system is essential. I’m able to live in a tiny house on my parents’ property, and they check in with me daily and are happy to drive me around. Besides transportation and some medication side effects, I’d consider my day-to-day life fairly normal. While I’m not able to work a 9-5 office job, I do freelance video editing work, social media management, and just recently wrote a book called Pearls: A Memoir on Brain Cancer and Hope.

Now you know enough details about epilepsy to incorporate into your characters and storyline. But you might be asking, why even give your character epilepsy? Seizures are an obstacle that can often derail your plans, something you have no control over, and can add tension to a storyline. Despite this, one thing I’ve learned about people who have epilepsy is that we are resilient. Our own brains knock us down on a daily basis, but we find a way to bounce back and live our lives. Just a few influential authors who were diagnosed with or thought to have epilepsy include: Fyodor Dostoevsky, Charles Dickens, Agatha Christie, Lewis Carroll, and Edgar Allan Poe.

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