I nearly cried when I read this...

Hot on the heels of my post about memory - or not having much of one because over the years it's been ravaged by seizures or a daily dose of drugs - I received an email from a woman whose epilepsy has raided her memory bank until...
Well, actually, my words wouldn't do this story justice. Her words, her brutal honesty, will do the job much better.
To give you a bit of background, she was feeling poorly and wanted a weekend not thinking about epilepsy and then, she says:

"Trouble is I popped out to the corner shop and this happens -
My next-door neighbour of one and half years now, comes towards me and says; 'I'm having a barbeque would you and your husband like to come along?'
I say: 'Which house is that then?' as I don't recognise him at all, or from which house.
He says: I'm your neighbour...' I'm immediately embarrassed because I know I should recognise him - and I know he expects me to recognise him. To get myself out of the situation I just say: 'We have too much to do, in a mess and decorating indoors, but thank you for the invite anyway.'

"I went home humiliated and depressed. From my garden I could smell the barbeque. I realised then, the man came by only a week ago to offer to cut his overhanging tree branches, but I still didn't recognise him out on the street. He probably knew that because I sounded in a daze. I expect he is baffled. Especially because I smiled and said Hello. You see, I do that all the time because I do not recognise so many people, so I say Hello a lot, to cover myself.

"It's just another reminder my memory will not perform such a simple thing that so many people have no trouble with. It seems a small thing, but enough on its own to make me cry. Sometimes I ask out loud: why can't I remember things!

"I don't think even a good neurologist can comprehend even how much these smaller things can affect us. I know you know what I mean, and it all comes down to the 'living with epilepsy' thing. I feel so depressed, but it's usually short-lived as my husband, Jamie, is so cheery and pink-cheeked and cheeky and he suggested we go to cinema instead.

"When I told Jamie what happened he could hardly believe it - but I have done similar things before with previous neighbours. He said they must think I'm weird or something, but in a jokey and accepting way. Nothing I do embarrasses him, he's so accepting. That is a very big consolation isn't it, it means so much to have him. I wish I could get him to realise it even more how good he is to me."

My heart really goes out to that lovely woman. But I know she doesn't want my sympathy. She wants a strategy to be able to deal with situations like that. Asking your next-door-neighbour 'Do I know you?' is odd in anybody's books.

So what is the answer?

No - not THAT kind of epilepsy...

I could see the optician look worried when I told her my last seizure had been only two days ago. So I thought I was reassuring her when I explained the one before had been a whole week before that. But actually I had just increased her concerns.
"Is that normal?" she asked.
Well it's not 'normal' to have seizures, is it, but if she meant - as I expected she did - was that the general frequency, the answer was 'yes'. Unfortunately I'm going through a bit of a bad phase and having seizures several times per week.
But then I saw her look at the floor! And I realised what was going through her head. I may have been talking to a woman of (albeit eye) medicine but when I said epilepsy she only had one picture in her mind.
"I won't fall on the floor."
"Oh?"
"Or convulse."
"Oh."
"In fact if I had a seizure while you examined my eyes, you might not even notice."
"Oooh."
"If you saw me doing something strange, it would be saying 'no' over and over, looking vacant for about 30 seconds and probably not remembering much about that when I 'came back in the room', as it were. I might want a glass of water and then we could carry on."
"Oh I see."
"There are many, many different types of seizures."
"Yes, of course."
I don't know why she said that as though she suddenly knew a lot about epilepsy. If she had known anything about it she would have asked me in the first instance what type of seizures I had. She didn't. She presumed I had the stereotypical seizure until I explained.
These sort of situations could make me cross. They don't.
People know very little about epilepsy because many people with epilepsy are discouraged from talking about it.
If the condition wasn't hard enough to live with, the public ignorance of it makes it all the harder!
I suppose I sometimes dare to hope that those more closely involved with the world of medicine may know a little more than others.
But in reality epilepsy remains a hidden condition, buried by a society which doesn't want to talk about it.

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.