LIVING WITH EPILEPSY
What’s it like to live with epilepsy? I want you to know – this film will help you understand. I am one of the people in the film.
It can be frightening. I tend to panic. I worry about what other people will think of me – if I tell them, or even worse, if they actually see me have a seizure.
Nearly 500,000 people in the UK have similar anxieties and like me they prefer not to talk about it.
But those of us in the film “What’s the Time Mr Wolf?” do talk about their fears and their dreams. We were actually encouraged to talk about our daily worries and lifelong fears of ‘living with the Wolf’.
Epilepsy is the Mr Wolf in my life (just as he is for many others, who have the condition). He creeps up silently and snatches me unexpectedly. We usually can’t warn people he’s coming – because we don’t hear him and, even if we sense him, we hope upon hope that he will leave us alone this time.
There were ten of us in the film ranging in age from 20s to late-50s. We’d never met before director Sal Anderson invited us to attend the acting workshops but we bonded more quickly than if we’d been glued together because, for once, we had ‘permission’ to talk about what it is like to live with epilepsy.
We each have a form of epilepsy (they are more than 40 different types, not just the one you see dramatised on TV where the
sufferer drops to the floor shaking.)
Epilepsy is a condition that is still overshadowed by a powerful stigma – as all of us in the film have experienced. It really shocks me that in the Ancient World medics treated people with epilepsy by boring a hole in their skull to release evil demons! (Remarkably some patients survived).
But then, as today, there were no evil demons.
‘What’s the Time Mr Wolf?’ shows that those of us in the film – are a set of ordinary individuals who want to lead ordinary lives despite the fact that each of us has a problem. It’s not a scary or infectious one – just a problem that’s much easier to live with if you’ll allow us to talk about it.
By Julie Lefebve