Friday, 24 February 2012

You're never too young to talk about it

Someone once told me he dreaded the thought of his young nieces seeing him having a seizure because he felt they were too young to handle it. I could understand his worry. He was a single man, no children.
I, on the other hand, am a mother of two and Remi and Lily have grown up with epilepsy in their lives. They've seen me have seizures, helped me through them and are more relaxed talking about epilepsy than anyone else I know. When I say epilepsy's been part of their lives, Remi, the eldest, was only six weeks old when I dropped him during a seizure. That unhappy incident was the result of a naive mother who panicked during an aura, tried to put him back in the crib but never made it. He's going to be 22 this year, very healthy, thankfully no harm was done. When Lily came along I was better at the mother thing. (She seems to have a gift - seizure prevention talk - but I'll tell you about that another time.)
When they were very little,  my ex-husband explained what was happening when I had a seizure and very easily settled their minds on the matter. Children are so accepting of situations that if he'd said "Mummy turns into a super-hero every now and then" they probably would have accepted that too.
As it was, the explanation wasn't that interesting to them at the time so they didn't take much notice for a while. But they always cared - and cuddled. As they grew older they became more and more concerned, in an academic way, if you like, but stayed very calm and comfortable - as they still are.
Because they are so relaxed with the subject, so are their friends. There is something in the "if it's ok with them, it's got to be ok with us" affect. It's always been the case that if an episode has happened they've handled it with no drama, no fuss and life has carried on as normal. I just get the glass of water I need. Their friends have seen that - and I think that's excellent.
And then there are my friends' kids who have been really great. There was a funny moment when Linda's middle one was telling their new neighbour, in very matter-of-fact style, that I always say 'No' before I have a seizure. Seconds later I was offered something and as soon as I said 'No' the neighbour looked terrified! Little Saul couldn't understand the reaction.
Remi and Lily and their friends have no problem talking about epilepsy. I'm proud of them for many reasons and I'm certainly proud of them for that. And I thank them (and their friends) for helping to make me feel so supported in a society which really doesn't want to talk about epilepsy. I believe that educating young people - the earlier, the better - and finally starting some conversation is the way to go.


  1. Very interesting! I think this should be shared out to young people in order for them to maybe get a grasp on some of the more personal effects epilepsy has!

    1. Thanks, Oli and I totally agree about getting it out to a young audience to spread understanding. Any ideas?

  2. I think that everyone has various aspects of imbalance or one-sidedness, and that children who can meet this gently are privileged.
    They learn early on that pain and the richness of life are intrinsically intertwined.


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