Claire's Story

My wife Claire passed away in February this year from a cardiac arrhythmia caused by an epileptic seizure. Claire’s seizures started three and a half years prior to this, in June 2011. We were driving to Dunedin to watch our son play an ice hockey tournament. Shortly after lunch, just past Timaru she suddenly turned towards me with the weirdest look in her face and the shaking started not very strongly in hindsight but I stopped the car and tried talking to her. I rang 111, hysterically tried to communicate what was happening, not sure if she was breathing or worse if she was alive. Epilepsy had not crossed my mind yet. St John Ambulance came and took over, drove her to Timaru’s Hospital. Our older son came down from Christchurch at my request and Claire gradually decided to follow him and his heavily pregnant partner back home.

I carried on and caught up with younger son, whom I had to tell the story. He seems to take it calmly but later on confessed to quite the opposite internally. Seeing my wife like this threw me off balance, I was extremely emotional for days. Claire on the contrary felt fine, a little strange, fuzzy memory, she could hardly believe it had happened; she had to take my word for it, my disturbed state being proof.
A scan taken in Timaru revealed nothing at all. We consulted a neurologist who reassured us that 80% of seizures only happened once. But we soon found that Claire was of the remaining 20%. All her other seizures happened at night or in bed. The second one I saw took me to the same emotional state, with St John saving the day/night. Claire then asked me that if it happened again could I just deal with it myself without calling the ambulance, so that she would not wake up with those big guys in our bedroom asking questions she could not answer… Claire remembered one afternoon where she woke up from a nap being quite lost; we assumed this was a seizure, the 3rd one. One morning I opened the curtains which was usually enough to wake her up but she did not. I went on doing other things and came back to leave her a note, she was awake but she was totally confused; it had happened again; #4.

She started taking medication after the 2nd fit, very reluctantly. She eventually pressed an alternative health practitioner to test somehow what dosage would suit her and this resulted with not needing to take so much. The practitioner demanded that she saw her doctor about it. Our doctor told her that if she took such a low dosage it would be below therapeutic level. Her reaction was then to stop all medication. Five days later she was in the middle of another fit when I woke up. I took care of her calmly for a change, did not call the ambulance. Put her on her side and let her sleep. When she came to her senses, I told her she had another fit and in return she confessed to having stopped her meds. I did not have to say hardly anything; she went downstairs and took her medication. She never stopped after this but always only taking half what was prescribed. We somehow believed that this last seizure was milder, or was it that I stayed calmer? We also falsely believed that the disease was on its way out: epilepsy never goes away, I know this now.

It’s about 9 months later that she had her last one, having driven all the way to Dunedin, having worked hard preparing this whole week of training in Tai Chi and Qigong from a Chinese master. She was, according to the other women attending, very relaxed, calm, very happy the night before. She was heard going to the toilet around 2 A.M and was found in her bed after she did not get up with the others. My Sweetie had passed…

Claire was very focussed on being healthy; she used to say that I would die first because I was not looking after myself as much…sadly. In our house we do not have Wi-Fi: each of our computers plug in the wall on to the router. Although we have a microwave oven, and the rest of us use it especially to warm up food, Claire would never use this, she did not trust the ‘waves ‘of this appliance.
Claire once told our adult son that she felt like a hypocrite in taking this strong medication and teaching tai-chi and Qigong, supposedly breathing health. The strongest lesson I get from our ordeal is that epilepsy must be taken seriously. It will take anyone, no matter how healthy a life style one may lead.

Felicien Forgues, October 2015

[Epilepsy is easier to live with when you understand it. Contact Epilepsy NZ Helpline: 0800 EPILEPSY (37 45 37)

PO Box 1074, Hamilton 3240, New Zealand

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