If living with Tourettes has taught me one thing it’s that brains are incredibly complex and that medical understandings of neurological conditions and the reality of living with them can often feel quite different from each other. For the rest of this post, I’m delighted to hand over to Touretteshero Senior Producer, Nisha for a post about Epilepsy, shifting perspectives and organists.

Ever since I can remember, I’ve had a recurring dream: I’m in a green field, it’s bright, open and full of laughter. Children are playing nearby. I feel profound joy. In the distance I can see a church and inside there’s an organ competition taking place. A figure, the organist, is competing. He loses – and with that, my feelings change. The sound of the organ fades and dread sets in, thick and immediate. When I was a child, that’s when I’d wake up in terror.

At 23, I had my first tonic-clonic seizure. I woke up in the street, confused and bruised. After that, life started to shift. I stopped having the dream in my sleep, but it didn’t go away: it became my seizure aura.

An aura is a kind of warning. It’s the first sign that a seizure is coming, a sensation, thought, or feeling that takes shape before the body follows. For some people it’s a smell, a sound, a wave of déjà vu. For me, it’s the organist.

We’re often taught to think of epilepsy in very particular ways, mostly through the lens of danger. A seizure is something to spot, stop and survive. That’s not wrong – seizures can be frightening and dangerous, but it’s not the whole story.

When I started having hallucinations about my organ playing friend, mixed with intense fear, and a deep sense of disorientation, I didn’t realise they were seizures. I was terrified: none of it looked like what I’d seen or heard. It didn’t fit what I was told epilepsy was supposed to be.

The medical model of disability provides a vocabulary for epilepsy, a way to map it and manage risk, but it rarely offers ways to describe what it actually feels like. The surreal bits, the emotional shifts, the strange internal logic, and the sometimes uncomfortable presence of something, or someone, that lives with you.

For years I understood my epilepsy as something I needed to manage privately. This was partly out of shame and internalised ableism, but mainly because I didn’t have the language or the permission to express it on my own terms. It was either completely invisible, or an extreme tragedy to overcome.

That began to change when I found myself in environments where disability wasn’t treated as exceptional, and where it didn’t need to be explained. Working in a culture where I didn’t have to justify my experiences gave me trust in their validity. The first time I sat in an epilepsy peer group, that trust deepened. I described things I’d never said out loud before and people nodded, not politely, but in genuine recognition. People shared their own dreams and patterns. It turns out I’m not the only one living with a mysterious, internal companion.

Seizures are medical events, but they’re also lived experiences. They shape how time feels, how the world appears, how memory works. Epilepsy isn’t always a catastrophe. Sometimes it’s quiet, sometimes it’s boring, sometimes it’s weird and even wonderful. But you only get to understand that when there’s space – social, political, cultural and medical – to think and talk honestly.

Fifteen years on from my diagnosis, I’ve come to appreciate the organist as someone I don’t understand fully, but someone I’m learning to co-exist with. What’s shifted our relationship isn’t just time, it’s language, community and environment. He’s still a terrible musician, but I don’t dread the sound of him playing as much as I used to.

I found reading Nisha’s post fascinating, moving and strangely reassuring, while we don’t have the same medical condition lots of what she shared resonated with me at a very profound level. One of the complexities of living with conditions that impact the brain is that this is also where so much of who we are is located – our thoughts, character, memories and dreams. Navigating the reality of this can be practically and emotionally complex and Nisha’s piece is one of the few things I’ve read that acknowledges this.