Living with Epilepsy
It’s scary, living in fear, living the unknown, not knowing when your next seizure will strike, if it’ll strike again at all. That’s what it’s like, living with an invisible disability. It’s hidden and sometimes, without warning, it can strike. I’ve lived the last 11 years of my life with Epilepsy, walking through school, college, work, walking down the street, working in the classroom or helping people at work when one of my seizures has struck me. You don’t know what people will say or how they will react.
For years I have felt alone with this condition, but then I found Young Epilepsy. They honestly changed my life by changing the way I thought about and saw myself. I am proud to say I have helped them fundraise, taken part in their event, even got the chance to attend their Champion Awards in London, which you can read about here.
Epilepsy & Me
On the 29th of July, Young Epilepsy surprised everyone with the news that they were going to be on TV! Epilepsy & Me was a short film about people who have extreme forms of Epilepsy, cases where their seizures can be a daily occurrence and they have to be watched 24 hours a day. In this film viewers follow four young people at a crucial point in their lives when their futures are being decided. This hit home for my family and me, and I couldn’t wait to see it.
When people’s lives are not controlled by a condition or a disability, they are able to finish school, college or university freely without having to think about what will happen in the next minute, let alone the next year. In the show we meet Jack, Amy, Olivia, and Thomas. When meeting 21 year-old Jack, we learn that he rarely gets through a day without having a convulsive seizure. He needs constant supervision, but is determined to take his new girlfriend Olivia out on a date – which is made even more complicated when he has to bring his support worker along.
Amy, 24, is leaving her residential college and needs to find somewhere to live, but where will be safe, happy and allow her more independence? Olivia is 21 years old and hasn’t had a seizure for four years and wants to prove to others that she’s ready to learn to drive – something most people around her believe isn’t possible. And 14 year-old Thomas has recently developed epilepsy because of a newly discovered brain tumour.
Young Epilepsy has a college which is shown to us on the TV series. Many of the young adults at the college also have learning and behavioural difficulties as well as specific medical or physical requirements. At St Piers College they are able to thrive, thanks to a calm, structured, safe environment and the support of a team of highly experienced professionals.
In addition to the college, the organization has a non-maintained special school for pupils aged five to 19. It has state-of-the-art facilities, highly skilled staff and a warm, caring atmosphere. It’s a fantastic place for children with neurological conditions and behavioural difficulties to learn new skills, grow in confidence and make new friends.
The children in Young Epilepsy’s school – some as young as five – are living with the most severe epilepsy and associated conditions, experiencing up to 40 seizures a day. Their current school is becoming unfit for their students complex needs and desperately needs replacing. As a result Young Epilepsy have to turn young people away, some of whom have nowhere else to go.
Sharing the journey of Epilepsy
The program was an emotional journey for everyone involved, and I couldn’t wait to share this coverage with you. If you have not yet seen the show, go over to BBC iplayer to catch up, it is worth it.
If you watched the program, leave a comment with your thoughts about it!
To donate to Young Epilepsy, follow the following link: https://www.globalgiving.co.uk/donate/30155/young-epilepsy/
To watch the documentary Epilepsy & Me, use one of the following links:
In the US: http://stpiers.education/
25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.