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Sally Gommersall
Hi, I’m Sally and I was diagnosed with temporal lobe epilepsy before my second birthday. Epilepsy has been a big part of my life as it was uncontrolled until I had brain surgery in 1996.
During my school years I was having regular seizures where I would lose consciousness, wander around aimlessly and afterwards be very confused for some time. It wasn’t until I was ten that my Headteacher at primary school stopped calling my parents every time I had a seizure.
Whilst as secondary school, I became more aware of other peoples reactions to my seizures and I was often embarrassed after them.
I have encountered prejudice and negative attitudes towards my epilepsy during my working career but I have turned these around and now work as an epilepsy training consultant, empowering other people with information, skills and confidence to better support individuals affected by epilepsy.
I think that the turning point for me was when one afternoon I had a seizure at a train station. I wandered off the platform and onto the line. I was amazed and disappointed that not one person on the platform came to help me. I could tell by their faces that they all thought I was drunk or just weird.
This incident proved to be the catalyst we needed. My husband, Rob, decided that we should move closer to work so I didn’t have to travel on the train anymore. My health improved dramatically because I was less tired and stressed from the travel and I began to grow in confidence.
The move meant I had a new neurologist and Rob insisted on coming with me to see him. Just having Rob there helped me to be more assertive and I began to pester for a referral to an epilepsy specialist consultant. The consultant at the National Society for Epilepsy was perfectly straight with us. On my first appointment I was told I was at risk of Sudden Unexpected Death due to Epilepsy (SUDEP) and that I was unlikely to reach my 40th birthday. Funnily enough though, I left feeling confident. Depending on the results of my assessment, there was a possibility I could have surgery and be seizure free for the rest of my life.
I began to realise that if my seizures could be stopped then the ‘fear’ of having a seizure would no longer exist. This ‘fear’ had become more difficult to cope with than the seizure itself and lead to me having psychological problems. If we could just make the ‘fear’ disappear then I just knew that my quality of life would be improve.
In 1996 I had a temporal lobectomy and my life changed. Within six weeks of surgery my confidence had increased. Each day without a seizure I grew stronger because I knew the ‘fear’ was disappearing. The treatment I received at Epilepsy Society led to my seizures stopping and changed my life. My family’s lives have been transformed too. Thank you to Epilepsy Society for giving me a life that is truly worth living.
