Kirsty

Kirsty was one of a pair.  She has an identical twin sister - a mirror twin - a wonderful constant reminder. Kirsty’s first episode of epilepsy was at the age of 18 (petit mal). Her visible symptoms were inattentiveness, hand gestures and occasional nonsensical language. These episodes occurred infrequently but, due to their unusual nature, we sought medical expertise. Kirsty was diagnosed with front temporal lobe epilepsy and, with medication, she would have nothing much to worry about.

 

Kirsty investigated brain surgery but was told it was too risky as her movement and speech could become impaired. She revealed that she wanted to be cremated and where to sprinkle the ashes; she was an organ donor (her dad feels she had foreknowledge). On the morning of May 24, Kirsty’s eldest daughter attempted to wake her. She couldn’t! At the age of 35 Kirsty was dead. She was beautiful. A mother of three young children, in love with her husband, she had everything to live for.

 

Before the grief set in, all we wanted were answers. At first, we thought she may have died from an aneurism, heart attack or maybe sleep apnea. The initial autopsy was inconclusive. We requested further testing. Her autopsy report indicated the likely cause was SUDEP. What in heaven's name was SUDEP? An urgent meeting with Kirsty’s neurologist revealed that people do die unexpectedly from epilepsy, often during their sleep. Thank goodness we also learned Kirsty’s condition was not hereditary but congenital. Her identical twin sister did not have it!

 

Grieving took on different dimensions for the family. Kirsty’s twin was overwhelmed by sadness. Kirsty’s younger sister sought the help of clairvoyants; she still wanted to communicate with her sister, much to the amusement of some and concern of others. Kirsty’s husband threw himself into raising their three children aged 5, 7 and 9. Kirsty’s dad couldn’t talk about it. I devoured books on grieving and research on epilepsy. We all muddled along with support from family and friends.

 

Although the grieving is less, we continue to mourn our loss. Kirsty's twin is still angry that we weren’t told about SUDEP. However, I’m not sure knowing would have changed things. I would have hated to see Kirsty being treated as a person with an illness – being watched.

 

My initial fears and sadness were that Kirsty would be forgotten, that she would not be there for her children and they would never know their mother. So I decided to compile Kirsty’s Memoirs, with contributions from friends and family. Publishing the Memoirs not only provided us all with a positive outlet for our grieving, it was also another way of capturing the wonderful memories.  Kirsty is not forgotten!

 

Janine Mifsud

Global Conversation 2011

continuing the global conversation

Sudden Unexpected Death in Epilepsy

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