Speak Up, Speak Out – about epilepsy
As most of you who have read these blogs will know, my son Remi died last year. The official cause of death is “seizure disorder (epilepsy)” . This actually translates as SUDEP – Sudden Unexpected Death in Epilepsy. Until Remi died I knew nothing about SUDEP and how this could affect young people, particularly men, who lived with epilepsy and who still had seizures despite taking medication.
My first contact with someone I knew having an epileptic seizure was when I was about 12 or 13 years old. My aunt had an epileptic seizure one Saturday morning and we were the only people in the house. I was petrified and did the worst thing it is possible to do – I left her and ran out of the house to the doctors surgery. A moments thought would have made me realise that the surgery would be closed on a Saturday. I ran all the way there and all the way back. By the time I got back she was coming round from the seizure and was OK.
I realised that I should know something about what to do. However, I didnt actually do anything for quite some time. I was a Social Worker for the Visually Impaired and one of my clients also lived with epilepsy which seemed very poorly controlled. She had a major seizure one day when I was visiting her. I knew that she was left paralysed after a seizure, and I didn’t have her husbands work details with me so I couldn’t contact him. Fortunately, their very good local milkman arrived and knew exactly what to do. After this I made sure that I learned what I needed to do in future.
When Remi had his first epileptic seizure when he was 14 I knew what to do. His seizures were few and far between and I was usually there when they happened until he started at University. I was still only at the end of a phone call and could get to him quickly if necessary. It was when he moved to Canada with his work that I only knew about his seizures when Remi wanted to tell me about them.
From his first seizure, my view was that our job was to help Remi to learn how to manage his epilepsy and medication, and not to let it control his life. He did everything he wanted to do – travelled to Japan to follow Liverpool Football Club, holidays to Ibiza, America, Morocco, etc. He worked as a Games Programmer, and was a very talented coder. He had much to offer his colleagues and anyone who met him.
Remi chose who to tell about his epilepsy, and when to tell them.
He was not ashamed of having epilepsy, why would he be. It didn’t alter the person he was. My mother has been totally blind for many years and Remi always admired her for her strength of character in dealing with the fact that she was blind but not being overwhelmed by it. She also did everything she wanted to do – travelling from Lancashire to London with her guide dog, and helping to look after my family when I was in hospital for the births of my younger children.
Because of all this, I feel that it is important that we help people to understand the facts of epilepsy rather than the myths that are often believed. If people knew what to expect, and what to do when necessary, there might well be fewer deaths from epilepsy.
If you would be interested in helping me with a campaign called “SPEAK UP, SPEAK OUT about epilepsy” then can you please contact me.