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....


  1. Oh girlfriend, that has to be hard to not be able to remember life experiences like that. Most of all with your babies. All I can say is... ((( HUGS )))!

  2. I did not know that. Great blog, very important to spread awareness of conditions like epilepsy and stop any prejudice towards them.

  3. I find that taking Anti convulsant tablets make me forgetful when I am tired and confused, specially when I have not had a good nights sleep. I also find that the pregabalin tablets can make me fall asleepy on he sofa at night whilst watching TV not long after taking them.

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