Things Epilepsy Has Taught Me

When people think of epilepsy, they think fall-down seizures, but that’s a tiny percentage of our symptoms. When a temporal lobe epilepsy sufferer gets control, they will typically complain about the seizures they miss.

Back when my epilepsy wasn’t controlled, I saw football-sized bubbles floating all over my garden. I saw a cat jump out of a wall. The brain can change your entire reality. It can create a world that doesn’t exist and make you believe beyond a shadow of a doubt that it’s there.

My disease taught me that no reality is pure. No impression of the world is completely true. I’ve learned how much power my faulty brain has over my perceptions. I can have adventures. I can find beauty in the shadows. I can—jeez, dude, did you see that flying daisy?

The temporal lobe plays your feelings like a cello. I once came home feeling miserable enough to rip out my own hair. On the way between one room and another, I turned into Julie Andrews. The Hills were aliiiive with the sound of muuuuusic. Those switches have now been controlled with medication, but they taught me another important lesson: Moods are perceptions. Perceptions aren’t facts.

Epilepsy taught me to expect emotions to pass. Feelings aren’t always based on circumstance so I don’t believe low mood means my reality is different. I always test my reality first—I ask, “What do I know about my life today?” And what I know is that there’s an adventure around the corner. I’ll hang around until it comes unless the flying daisy comes first.

Epilepsy is rarely fun. One five-minute seizure can lead to a fall or a car accident. Every waking moment you are in danger of dying, and that comes with a lot of fear. I spent many years feeling scared of getting hurt. Then I had enough. Nothing could make me 100% safe from my own brain, but I made small changes anyway—Only cross at the traffic light. Shower. Don’t bath. Stay away from ladders. Once I’d done everything in my power to keep myself safe, my fear evaporated. I’ve learned that when I’m powerless and overwhelmed, making a few changes gives me peace, even when they don’t fix the problem entirely.

I spent years trying to force myself to fit into society. I tried that big old thing called ‘employment’ even though I’d always land up bedridden or hospitalised. Anthony Hopkins once asked a Jesuit priest for his simplest and most powerful prayer. The priest said, “Fuck it’.” Fuck it is the prayer that miracles are born from. One day years ago, I said, “Fuck it.” I was defeated, so I never applied for another job again. I started freelancing as a writer instead. I said ‘fuck it’ and tried the impossible. I made life fit me. I stepped off a cliff to find out if I’d grow wings. A lot of people were furious at me for even trying, but then I flew.