Tuesday, 21 August 2012

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?




Thursday, 16 August 2012

It's stolen my memories - even really special moments

When people say "Do you remember..." I usually say "Yes" and often that won't be full truth.

I've learnt that it's insulting to them and sounds uncaring if I admit that actually I don't exactly remember their party/favourite aunt/exam success or whatever and I just can't get them to understand why I forget. The reality is that many people with epilepsy, in any of its forms, can suffer with embarassingly poor memory recall.

Usually I let the conversation carry on and hope upon hope that some detail will provide the clue that I need to remind me of the occasion/person. Sometimes it does, sometimes...the memory just isn't going to come back.

My friend, Claire, explains it like this: Imagine our mind as a giant picture puzzle; every time we have a seizure, the jigsaw breaks up and falls to the ground; when we come round, the puzzle rebuilds - but one piece is missing.
The more seizures we have, the more pieces are left out of the picture and we can't choose which pieces they'll be - or, if you like, which memories they represent.

Special memories
I remember bizarrely useless stuff in detail, like watching my mother roll out pastry in our kitchen when I was a child. I didn't have epilepsy then so I suppose my memory bank was safe. By the time I had children of my own, my epilepsy had well and truly taken hold for more than 15 years.

It was really, really, really lucky that when my son and daughter [left] were little, I adored taking pictures - particularly of them. I had no idea that there would come a time (now) when I'd rely on those pictures (nicely catalogued, I must say - also a bonus) to be my memory store and help me relive very special moments.

 See? I know how sad and uncaring that sounds. A mother who doesn't remember... Believe me, I'd rather remember than have to look at photographs - and yet there's plenty of stuff I do remember. My system of recall is no system at all! It's as chaotic as the tornardoes that happen in my head.

I'm certainly not talking about selective memory because that phrase, in itself, would suggest I can choose what to remember - which I can't.

Funnily enough, memory has never been a problem with work because at work we're expected to keep organised with lists, schedules and notes.

It would have been excellent if I had been warned, right from the outset, that the same kind of organisation was going to be necessary in my personal life. Doctors I've seen have only wanted to talk about drugs or surgery - never about managing life which, with uncontrolled ep, I'd suggest was key - wouldn't you?

I've explained to friends that my memory struggles but because I have 'behavioural' seizures and not convulsions which are more dramatic to witness, I think my epilepsy is generally perceived as 'not that bad'. All I'd say is: side-effects don't discriminate.

And that's all I needed to say about memory - as far as I remember....



Tuesday, 7 August 2012

I have to laugh at my ep sometimes....

This story happened a while ago but it doesn't date. Date being the operative word! 
I hadn't long split from my husband and was seeing the new man in my life. It was about time, I figured, that I told him about the form of epilepsy I had - just in case. Better for him to be forewarned.
But what if he was shocked? What if he had the usual old prejudice? I hadn't known him that long and I wasn't sure how he'd react.
Anyway, why was I even thinking about it. It was hardly like I was going to have a seizure....was it?
All this was going through my head as I walked to the pub where he was waiting with a glass of wine for me. It was a beautiful summer's afternoon and we took our drinks out into the garden to sit near the river.
Nick started to say something - and I haven't a clue what because, apparently, I suddenly jumped up, started fiddling with my top, moved onto my trousers and then demanded to go home for coffee without taking so much as a sip of the wine. Nick, understandably, was a little surprised and persuaded me to settle for a much nearer cafe. I grabbed his hand and marched him there at some pace - my conscious mind knowing nothing of what I was doing!
But by the time my cappucino arrived I was 'back in the room' - realising that 'it' must have happened because I was in a different place, looking at a different drink. I know how odd that must sound to anybody who doesn't have epilepsy: 'how could she still walk and talk but actually be "out of it"!'
Honestly, it sounds odd to me when I hear the story. It's like it happened to someone else which is why, maybe, I've learnt to laugh at it!
And if I hadn't decided to tell Nick there and then, he wouldn't have realised the episode was epilepsy - or even suspect behaviour. He still maintains that he thought the clothes fiddling bit was me being attacked by a wasp/bee and the coffee demand was simply me deciding I didn't want alcohol.
Looking back, I think the seizure might have emerged out of the desperate hope that I wouldn't have one. Oh well! It taught me to lighten up and relax.

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