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This article was published in February 2016. The information may be out of date. Please check our epilepsy information or our site A-Z.

The man with the memoirs: Telling is better than not telling

9 Feb 2016

 

Deciding when and how to tell young children about epilepsy in the family is often difficult and problematic, but not addressing the issue can cause problems too.

The old adage ‘damned if you do, damned if you don’t’ readily comes to mind. But a situation that arose when my daughter Liberty was aged seven, back in the early 1990s, clarified the issue for me.

While my wife and mother-in-law, who lived with us, were well aware of my epilepsy, we had not discussed it with Liberty. We were encouraged by the fact that in the period between 1992 and 1995, I had had no seizures; my last seizure was in the summer of 1991.

Out of sight, out of mind. The absence of seizures meant we neither thought nor talked about my epilepsy, which proved extremely unwise. Liberty was three when I had had the last seizure, and, at that point, we hadn’t discussed my epilepsy with her. Then there was the three-year gap.

In April 1996 my wife was away overseas on business and our au pair had the previous evening elected to stay with her boyfriend. Although she came back that morning, it was not early enough.

Early in the morning of 18 April, I had one of my normal tonic-clonic seizures. My daughter told me later that she had just come into the room and was watching me put my tie on when suddenly I keeled over backwards, wedged my head between the dressing table and the wall and then started convulsing with the usual big noise.

She was shocked to see this happen and apparently at the time thought I was dying. She had no idea what was going on and was hugely upset seeing her dad in such a state, mum abroad and not knowing what to do. Very luckily, her grandma was asleep in her flat downstairs. My daughter rushed downstairs to get her and with granny’s help they got me back into bed and avoided calling an ambulance. The initial drama passed.

But for Liberty, what had happened to her father? I was unconscious and remained so for a number of hours before having a long sleep. Granny did her best to explain what had happened and I eventually recovered and could give some explanation myself. But the damage had been done. Liberty had to face this unfortunate drama completely unaware and not understanding what was happening.

She coped with all this, she had no option, but my wife and I regretted that she had not been better prepared and she had not better understood her father’s condition. For most people, young or old, a tonic-clonic seizure represents quite a shock when first seen.

Although it is dramatic and possibly dangerous, it is generally not as bad as it first appears. Helping people of all ages understand seizures is very important in helping them better understand and deal with epilepsy. This is why I thoroughly recommend that young family members be made familiar with the meaning of someone in the family having a seizure. This will help them to learn what can be done during a seizure to make the person more comfortable and not endanger themselves.

Unfortunately, Liberty had to learn the hard way what a seizure meant. It would have been much better if her parents had given her more warning and better understanding of the reality of epilepsy. It is much better to be told in advance than to suffer the very strange experience of watching a tonic-clonic seizure and not understanding what is happening. 

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