My Father and Epilepsy (Article)

For my Father,

This post is dedicated to my father who has carried the responsibilty for my epilepsy upon his shoulders since the beginning.

While some cases of epilepsy occur as the result of an accident such as a blow to the head in the majority of cases this is not the case. for most people – six out of ten, in fact – there is no known cause. This is called ‘idiopathic’ epilepsy and it is the type of epilepsy that I have. For parents of an epileptic child it can be extremely difficult to accept that there is no real reason for the condition developing. They may feel that there must be some incident, something or someone to blame, something that makes sense. In dealing with my epilepsy my father placed the blame upon himself a burden that he has now born for eighteen years and a burden that it is time to lay down.

I have already described my first fit so I shall merely recap that I was in my backgarden playing football with my father and my brother and like all eight year olds inevitably do I fell down. Watch a bunch of kids any age playing football and it is difficult not to notice they tend to trip up, bump into one another or just fall over their own feet. At one point during that game the eight year old me feel over after bumping into my dad during a tackle. It is this one little bump that has allowed my father years of those ‘what if’ moments.

The answer to that ‘what if’ is easy. If I hadn’t fallen over that particular second I would have managed it a few moments later, or I would have been pushed over at school in the playground or tripped over my own shoe laces. That of course is presuming that I didn’t have my first fit before falling over. Idiopathic epilepsy is there in the brain already, a fall or a blow to the head may encourage a fit but it is not the cause of the condition. When someone is tested for epilepsy they are usually sent for an MRI test. This test can help to find if there is an abnormality in the brain that might be causing epilepsy, for example, scar tissue due to a brain injury. My MRI scans have never shown any sign of trauma or indeed anything unusual at all meaning that there is a slim to none chance that my epilepsy was caused by any trip or bump.

For a long time I felt confused about my fathers guilt. Often I felt guilty myself – after all, if I didn’t have epilepsy he wouldn’t have to feel guilty. For a while during my later teenage years I felt resentful, believing that it was my problem not his or anyone elses. Now thinking back I just feel sad that one of the people I love most in the world has spent so long blaming themselves for something that wasn’t their fault to begin with. So this post is a plea to my father, for Purple Day, let go of all that guilt for good and simply be proud of being the best dad ever.

Zoe

 

 

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Libre Source (Art)

Libre Source

 

 

 

 

Libre Source

 

Caoimhín

Purple Day Poster (Art, News)

purple day poster

 

Caoimhin   Zoe

My Epileptic Diary (Article)

This is the first of what will hopefully turn into several posts on the topic of what it means for me to be epileptic and to have a seizure or ‘fit’ in front of people. While I have happily been fit free for several years now, this is still a very emotional topic for me. The purpose of these articles is to deepen understanding for individuals of epilepsy in general and hopefully to encourage epileptics themselves to ‘come out of the closet’ so to speak up and be proud of who they are.

 

For most of my life – from the age of eight I have been epileptic. Throughout the majority of that time I have tried my best to hide from this fact, refusing to read the literature given to me by doctors and in my university years, steadfastly ignoring all advice as though almost daring my body to have a fit. Which of course increasingly it obliged with, starting the cycle all over again. Ironically at the same time my worst fear was the possibility of having a fit in public and what I had convinced myself over the years would be the subsequent reaction.

It is true to say that often even those who are well aware of the physical effects of a fit do not understand the mental trauma of losing all control over ones self and the long term problems that this can cause. These articles describe my own experiences but I would like to think that the upcoming set of reflections on my epilepsy will help to give insight to some people in the emotional issues that having epilepsy can cause and perhaps ensure that more help and appreciation of this aspect of being epileptic is available. For a while I was unsure where this was going to go but finally I decided to make these essays my very own epileptic diary so here goes.

Begin at the beginning the king said gravely and go on till you come to the end (Lewis Carrol still one of my favourite authors). Who better to take advice from than the king of Wonderland? My first fit happened when I was around eight years old and I can remember that day clearer than any other. I was playing football in our back garden with my father and brother and having a really good time. I think for a change I might actually have been doing moderately well – I may have even scored a goal although memories of the time directly before the fit are vague and mixed up.

I don’t know exactly when I started feeling strange, it just sort of happened. All of a sudden the ground seemed floaty, I felt dizzy and light headed and the world didn’t feel quite real. Over the years this is a symptom I have learned to recognise – that sense of deja vu and the sudden feeling that maybe you are dreaming and haven’t actually woken up yet. I can remember very clearly talking normally with my father and brother laughing at some funny remark. I remember sitting down on our slide till the ground stopped moving. Of course none of that happened. What actually happened was that I turned sheet white, stared blankly into the air and dropped to the ground convulsing. Or so I am told, never having any memory of this part of a fit and strangely enough never having seen myself from an outsiders vantage point.

That was the beginning of it all. I have no memory of ambulances, of riding to the hospital or indeed of being in the hospital. I do remember that being in the hospital as a kid, when you are not physically ill, is a bit like being on holiday where everyone is nice to you. I remember being happy when my parents came to visit. I remember playing computer games sitting on the bed of the most wonderful strongest girl I have ever met. It was only later that the consequences of having epilepsy as a child began to sink in. Trips to the hospital for tests- because there was too much electricity in my brain mum said. Continual blood tests to check I was taking my meds. For years I believed that those blood tests had some grand importance, finding out that they were merely checking the levels of medication I felt furiously indignant – as though my parents weren’t bad enough!

After a while I did begin to feel like the freak of the family, a china doll that had to be wrapped in cotton wool trapped in a glass box – in case I smashed. You will have to excuse me if that seems over dramatic but until you face such continual treatment you can not understand. However now that I am an adult I can understand that it was both well-meaning and good for me. Then there were the constant reminders, little phrases automatically slipping out of my parents mouths such as “remember your condition” or “we don’t want you having one of your funny turns.” I am sure that to a parent funny turn sounds much softer than seizure or even fit, but for me it was just more proof that I was different from everyone else.

My parents tried desperately to let me do everything that a normal child would do. I went swimming, rode a bike, went horse riding, but there was always that fear, that ‘what if’ in their eyes. A fear that was eventually catching becoming all mixed up with the fear of losing control or worse being seen in that state. Then there was the fear and the terrible guilt of upsetting my parents, of making their condition worse. As a result, already a naturally introverted child I became more so – a frightened rabbit and ironically a prime target for the bullying I was trying to avoid.

 

This was my childhood as an epileptic and I want to emphasise that ninety percent of the time it was a happy one. Epilepsy does not have to stop a child from living their life like any other and the same goes for the parents of children with epilepsy. In the majority of cases epilepsy can be controlled and if this is the case for your child don’t waste your time living in fear and don’t let them live in fear either, you may make that final ten percent a happy one too. Yes my parents maybe were a bit too clingy in ways, but can I blame them, would I act differently? I think it is important for people to understand however how epileptic children can feel so they can understand why it is they act up at times. And to better understand the journey that epileptic adults have taken to get where they now are.

Zoe

Redundancy (News)

Right now we are facing redundancy measures at our place of work, that doesn’t mean we will be let go.  But for now we have been incredibly busy.  Unfortunately we had been just launching a big program of work on our Clan sites and because of this I have not had the time to work on anything.  I do hope to tidy up some of the projects I had started and hopefully it won’t affect those that much longer then a month or two.  On an upnote I have passed my drivers theory test and hopefully Ireland will win Scotland and be on from for the Grand Slam.  But for now just keeping you all informed.  The other thing to note is my decision to move Libre Source, this is due to it currently residing on the servers of the company we currently are employed by.  This will take place over the period of the next month.  That’s it for now.  Wish us luck!  🙂

Caoimhín

Fromelles (Article, News)

 

Map picture

 

 

Fromelles is the site and name of a famous, or more accurately infamous, World War 1 war site.  The small town is in the north east of France, near to the border to Belgium.  The battle took place between Germany and Britain, of which Australia was a still a part of at that time (see below note.) The inscription on the Australian war memorial there reads “the worst 24 hours in Australia’s entire history,” understandably so after the death of more Australians, 5553, in a single day than any other battle, outside of later battles taking part within World War 1.  Fromelles was to be a divisionary attack for the push at the Somme but this entire attack was unsuccessful, unnecessary and itself a total failure.

Why this posting?  In 2008 eight more mass graves were discovered.  These bodies are to be reburied respectfully at a new cemetery site close to the present site, each body now receiving an individual grave.  Oxford Archaeology will be taking part in this project and Zoe, as a trained osteologist, so far seems to be part of the team they will be sending over there.  The project will begin in late Spring and last until late Summer.

This has obvious impacts on us a group.  It will give us various different insights into being apart and so on.  On top of this Zoe will be working with the recently dead, as they are still classed.  The ideas of these will hopefully lead Zoe to writing some small ideas on what this gives her about life and also how this impacts on her religious beliefs.

This article will act as a small summary of what Fromelles is about for all of those interested that have asked us for more information.

For more information read the very comprehensive article in Wikipedia on Fromelles and the many many excellent and interesting articles by many papers and magazines published online, easily found through a Google search.

Caoimhín

Further:

To clarify as has been pointed out in a comment below Australia became self-governing in the late second half of the 19th century.  The colonies became a federation but were not however independent and were classed as a dominion of the British Empire.  The AIF, Australian Imperial Force, were therefore still British forces.