My cousin threw her arms around my neck. ‘David’s died,’ she was repeating. It didn’t register. She sobbed into my shoulder. What was she saying? ‘David’s died.’ The words formed a sentence with meaning. What? It must be a joke. Who would joke about something like that? No one, I realised. Sickened, I pushed her away in horror and disbelief and started choking out the word, ‘No, no, no…’.
On that terrible day in 2003, my brother’s housemate arrived home to find David dead in the shower. David was just 30 – and he was my closest friend.
As David had a history of epilepsy, my parents and I imagined he had fallen during a seizure and hit his head, drowning in the running water. We had no idea that epilepsy can kill directly. David’s autopsy found no obvious cause of death. It was something called SUDEP, the pathologist said. Something we’d never heard of before, something that kills without leaving a trace.
I’ve since discovered that David, though unique in so many ways, was typical of someone who dies from SUDEP. He was a young, fit and healthy man with epilepsy. He took medication to control his tonic-clonic seizures, but sometimes after a late night he’d forget to take it. My parents and I had seen him have a handful of seizures over the years, in bed or as soon as he got up, and we thought they occurred only when he missed a tablet or was extremely over-tired. It now appears David may have been having more seizures than anyone knew. He didn’t remember the ones we witnessed, and it’s likely more took place in bed. His friends have since mentioned either seeing seizures occurring or noticing suspicious bruises. David swore others to secrecy, both because of the stigma associated with epilepsy and his reluctance to modify his fun-filled and friend-filled lifestyle. He worked long hours, travelling between states, and he studied hard and socialised harder.
I know now what David’s doctor had never told him – that the risk of SUDEP is considered low for people whose epilepsy is well controlled. Preventing seizures, by complying with medication or getting enough rest for example, may reduce the risk. I wish David had been given this knowledge.
And so my wonderful friend, my smart, entertaining, charismatic brother with his wide grin and infectious enthusiasm, was given no choice about modifying his behaviour, and we’ll never know if that choice may have saved his life.
Global Conversation 2005