I am lying on her bed thinking of what we could have done to prevent her death. She was 19 years old. She had suffered from epilepsy since September 11, 2001; her first tonic-clonic seizure occurred while watching the Twin Towers fall to the ground. The doctors said it was not related to the terror in New York. They also told us ‘you can’t die from epilepsy’. Jane’s seizures could be weeks, or months, apart. At times she had clusters (up to 4 per day) and recovery could take 3-4 days. She missed school and friendships suffered. Jane hated epilepsy, but she accepted it – to a degree.
The doctors tried different medications due to adverse effects like mood swings, depression and rashes. We thought the mood swings and depression were just normal teenage symptoms but I think the medications were more to blame than we realised or were told. At the time of her death Jane was taking three different medications. Unfortunately, the pills were a necessary evil.
Generally Jane’s doctors were fantastic and I believe that the six or seven she saw over the years never considered SUDEP as a risk. Jane last saw a doctor about 6 weeks before her death and he thought that she may have been missing her medications, but as far as we can tell she wasn’t. I know this is often the case with SUDEP but we trusted her to self-medicate; after all, she was 19 and already starting to organize her ‘21st’. Her doctors were as shocked by her death as we were.
There was no warning. The night before she died she went to dinner and the movies with her older sister, Laura. Meg, Jane’s mother, had been to an earlier session of the movie 'Twilight' and she saw the girls in the queue going in. At midnight the girls arrived home and announced that they'd had an ‘awesome’ night. We chatted about the movie and went to bed.
The next morning, Meg and Laura went off to work. I was on a day off and rose at about 9am. A friend arrived at 9.30am and I went to wake Jane for breakfast. She was dead!
The following months were a blur. The house was full of relatives and friends for a good 3 weeks. We have never seen so many flowers. The postie said he had never delivered so many cards to the one address. We had a private cremation with close friends and relatives, and later that day had a memorial service at a local church. I have never experienced a funeral like Jane’s. Attended by some 450 people, Jane’s school Principal and Deputy both spoke beautifully, the school choir sang hymns, family friends spoke, as did Laura, some cousins and myself.
Jane would have been amazed that she had touched and affected so many and how they remembered her wonderful smile. Life’s just not fair.
Global Conversation 2011