I picked epilepsy for this week as last weekend my employer and friend (Julia) passed away. She experienced SUDEP – Sudden Unexpected Death in Epilepsy. She was incredibly hard working and generous. She cared about the environment and people, and had ideas and plans that would change the world. She was only 32 and I feel a great loss: personally, and for the world.
What I discovered
Over the last week I have researched the condition and feel I have come to understand it better. I read about the symptoms, possible causes and other ‘medical information’, but also personal accounts and experiences.
I learned about the isolation that many sufferers experience, for example by being overwhelmed in certain group settings (due to multiple conversations being difficult to follow), or losing their jobs because employers have not taken the time to listen to their work environment needs (e.g. flexible hours, to allow for recovery from seizures). I also learned that up to 55% of people with epilepsy suffer from depression.
Coming to better understand what Julia and other people with epilepsy experience has made me more aware of their differing needs. I better understand the importance of listening to their experience of the condition and what they require to manage it effectively. I feel I’d be able to offer better support to someone with epilepsy, should I work or befriend someone with the condition in the future.
I gave a donation to the Epilepsy Society www.epilepsy.org.nz.