More than Words: Annie's Story

‘It’s part of me but it doesn’t define me’

Annie is 22 and lives near Birmingham.  She works full-time in email marketing for Halfords, is a Young Rep for Young Epilepsy and a keen blogger. She’s blogged about movies, building a Lego Millenium Falcon - ‘I took pictures all the way through then wrote about it!’ - and living with epilepsy. ‘I like writing my own stuff,’ she says. ‘I had brain surgery when I was 20 and in the lead up, I was researching people’s experiences and couldn’t find anything so I decided to make myself that person.’

We asked Annie to think about three quotes or sayings that resonate with her and talked to her about why.

"I don't want to go like this, at least let me clean my room"
‘I don‘t want to go like this, at least let me clean my room‘

I listen to lots of music, it’s a big part of me, and what a lot of people call Emo music. I have this dream of one day being able to create a music video. I’ve storyboarded it and everything.  This song lyric is from Redecorate by 21 Pilots. Pretty much the whole song for me hits me in the feels. It’s a song that’s really relatable and even when I told my mum about it she related to it as well. She also has epilepsy, it runs in my family. I’ve always had this fear, and it’s been sticking with me recently when I have my seizures - are they going to set me back from all the things I want to do? Is this what people are going to be left with when they think of me? I worry about this sometimes. So I joined Young Epilepsy to try and do something better. I don’t want to just be the girl who has seizures. I want to at least help people and have some achievements.

"I’ve always described my epilepsy as more of a partner than a condition I have to live with"
‘I’ve always described my epilepsy as more of a partner than a condition I have to live with’

It’s kind of how I make sense of my epilepsy. For a long time after I was diagnosed I was almost in denial about how it could hold me back. It was something I didn’t want to admit. So it helps me to see it as its own separate thing but it’s also coming with me. I don’t like to think of it as a problem as I’ll be sitting there thinking I have to deal with it. So it’s almost like it’s part of me but it doesn’t define me. It helps me feel more in control. When I had my brain surgery, there was a 70% chance the seizures would stop. But they haven’t. So since starting my blog and almost owning and coming to terms with the fact that it’s not going away, and thinking about it like well you’re my partner now we’re going through life together you might as well settle in, it’s more of a chill way to think about it.

"If there’s nothing you can do, shelve it"
‘If there’s nothing you can do, shelve it’

While I was in high school, around 15 or 16, I was referred to CAMHS for counselling. It was around my GCSEs and my seizures really started flaring up because of the stress of exams. I had this really nice counsellor, I barely remember him now and I’ll never see him again, but he said this quote to me. Throughout my life I’ve had this thing where I bottle things up and I keep thinking and thinking. But definitely since hearing this it’s something I’ve kept in mind so much. It’s something that permanently sits with me. My mind is one that skips from thing to thing fairly easily so I’ll almost visualise it and say I need to put something away now. I’ve told other people about it too, so I try to help other people with it.