Peter

Peter had his first epileptic seizure at the age of 14. At the time he was quite ill and we hoped the cause of the seizure was just his high temperature. However, this became the start of regular medical treatment for epilepsy. At no stage were we told that the likelihood of an early death was increased with epilepsy.

 

Peter was an extremely handsome and charismatic young man, but he had a maturity which really staggered me. There were times when I wondered, who was raising whom. Being a stepfather can be a difficult role because you really have only limited authority. My relationship with Peter was wonderful. I can never remember raising my voice or having any confrontation with him over any issue. Peter’s mother, Mani, and I both loved him dearly and, although he rarely asked for anything, we loved indulging him when we could.

 

All players, including Peter himself, have to accept some responsibility in the mismanagement of his epilepsy. Peter absolutely hated being an epileptic. Basically it was rarely mentioned and, if it was, Peter would not participate or cut the topic short. His attitude lulled Mani and myself into a false sense of security. He was fitting regularly but would never tell us. He always had an aura or warning of about 30 seconds, which gave him enough time to get off by himself. He even hid his seizures from partner Tam, who was a nurse. With the combination of no apparent concern from the medical profession and Peter’s attitude to his epilepsy, it was not hard to let the guard down. Even today when we talk to some doctors, they show utter surprise that we lost a son to epilepsy. Peter’s doctor at the time was stunned by Peter’s death.

 

On reflection, there were many aspects of the handling of Peter’s death that we were not happy with. I tried to manage everything and made most of the decisions in an attempt to be a help to Mani. At the time I thought it was the best way to go. We were all shocked and under pressure.

 

The night Peter died, two detectives attended our house. Their attitude was one of disrespect and it came to light in the following days that Peter’s employer – a television station – was contacted before us and was told that Peter had taken his life. Even though Peter was a gorgeous young man his house could be very untidy. I understand that when the police first went into his room and saw the mess with empty pill packets their first impression would have been suicide. They told us that he had taken his life but we suspected immediately that there had been a complication with epilepsy.

 

Mani is a Buddhist and the Buddhist belief is that the body must remain untouched for three days after death. There was no consideration or advice sought on how to treat Peter’s body. Peter was taken straight to the morgue, where an autopsy was performed the next day. We were not allowed to see his body until it was presented to us by the funeral director, on the Friday morning of his funeral. If we had made a fuss I am sure we could have seen his body earlier, but my brother who is a surgeon advised that it may be distressing for Mani to view Peter as his condition was poor.

 

While there were many things that were not to our liking in this whole episode, we have taken the view that we were dealing with our son’s death and no matter what transpired, nothing would give us back our son. If everything had run ‘smoothly’ I doubt it would have made us feel better. It is of more importance and relevance to us that we were not aware that an early death could be a consequence of Peter’s epilepsy. We had accepted epilepsy as Peter’s lot in life, not knowing what this could mean.

 

Peter's Mother & Stepfather

Global Conversation 2005

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Sudden Unexpected Death in Epilepsy

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