Writing about seizures: 'I hope it’s not epilepsy that defines Jamal, but his determination'

Published on: 30 June 2018 Author: Alex Strick

Bridget Blankley gives us a fascinating insight into her decision to include a character with epilepsy – and her goal to make it convincing. 

Read our review of Bridget Blankey's book, The Ghosts & Jamal

I didn’t set out to write a book about epilepsy, it just sort of happened.

I wanted to write about being an outsider, about trying to make sense of what’s happening in life. I think we all feel like that sometimes, a bit confused, a bit out of our depth. I wanted Jamal to be a character that readers could relate to. I wanted his reactions to be familiar, even if his situation isn’t.

'I read everything I could'

When I decided that Jamal would survive the gas attack that killed his family, I needed to find a reason for him to be living outside the family compound. That’s when I decided that Jamal would have epilepsy. I knew a little about the condition, I’d worked with some people who had epilepsy and when we lived in Nigeria our gardener had the condition, so I was aware of the risk of social isolation in rural communities.

Of course, my knowledge was very out of date, so I had to do a lot of research as well. I read everything I could on the subject from World Health Organization reports to newspaper articles; anything to help me understand how other people would view Jamal’s condition.

Fortunately, I have Asperger’s, so I am happy to spend time researching things that interest me. In fact, once I started fact-checking, I got so carried away that I missed the first deadline for completing the manuscript.

Smell of cinnamon before a seizure

All that research helped me to see Jamal’s seizures from the outside, but I wanted more than that. I didn’t want readers to be spectators, I wanted them to feel what Jamal was feeling. Then a friend told me that she smelt carnations before she had a seizure –  that was a real breakthrough. I didn’t think that Jamal would know what carnations smelt like, so I used cinnamon instead.

To be honest, I spent a lot of time researching all of the book, not just Jamal’s illness. I brought recipe books to check that I had remembered the names of the food and not just the taste. I got maps to check out the locations and newspaper articles about the dangers of rubbish picking. I imagined the story, but I wanted to make it believable.

Not a book about illness

Although Jamal’s condition is an important part of the story I don’t think of it as book about an illness. I think it’s a book about a boy struggling to make sense of a confusing world, and who would, ultimately, overcome all the challenges that are put in his way.

I hope it’s not epilepsy that defines Jamal, but his determination.

Find out more about Bookmark: our focus on books and disability

Add a comment

Sign up for our newsletter

Stay up to date with BookTrust by signing up to one of our newsletters and receiving great articles, competitions and updates straight to your inbox.

Join us