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Liam's Story - #EpilepsyDay 2023

Liam Maguire and Time, Safe, Stay logo

In a powerful personal experience about the lived experience of epilepsy as part of our series in the lead up to #EpilepsyDay, we were sent this piece by Liam Burke from Co. Cork  about his journey with the condition. Please take a few minutes to read and share to help increase understanding and awareness….

My journey with epilepsy started in 1983 when I was 10 years old – just having breakfast one morning going to school, then waking up on the kitchen floor surrounded by my parents.  But I think it’s only in recent years when I had to attend some grief counselling that I have adequately addressed and accepted my feelings on what having epilepsy means to me.

But back to that morning in 1983 – I hadn’t an idea what had just happened to me.  Of course, we went to the family GP and onward to a neurologist in hospital where we did lots of tests like having this weird helmet of cables and electrodes put on my head with equally weird paste smeared on my hair and lots of breathing in and out (I learned later it was called an electroencephalogram – EEG).  So, there I was with epilepsy, put on medication which worked fine in the early years going through primary school, it really didn’t have that much of an impact on my life at all.  I was good at my schoolwork, didn’t really have much appetite for sports or active pursuits at the time though, but more on that later. 

After a few years when I was about 15 or so, attending neurology clinics regularly and getting good feedback, we agreed that it might be worth a try weaning me off the medication as I hadn’t had any episodes since my first seizure.  And it worked fine….for a while. I was always a night owl, staying up late on weekends watching TV, listening to music or reading, and inevitably getting too little sleep. 

One night my sister came home from a night out and found me asleep on the sofa in front of the TV – no big deal - but when she woke me to go to bed, I started to get twitches. Even though I tried to convince her I was fine, I clearly wasn’t. 

So, it was back on the medication once again, and thankfully a return to having my seizure activity under control.

Progressing through my teens and onward, I’m getting into the space of hanging out with my friends in a more unsupervised atmosphere such as going out to clubs and pubs, meeting girls and all that.  Irrespective of epilepsy, it can be difficult to fit in at that age.  For me, while I got on well with my immediate circle of friends, I was always pretty quiet and shy, and so as the lads enjoyed the craic and chasing girls, I felt like a spectator to it all, watching them get fuelled up on extra beers and bravado, then hearing about their hangovers and conquests over the following days and we’re all laughing together – except I’m just laughing along to be included. I wasn’t jealous - they were and continue to be great friends - but I never really told them how I felt, and they never really asked – we just never talked about it. 

I just let this stage of growing up frame me into believing I was something of an outsider, not really part of the crowd, and it followed me through the years until very recently.

As I was seizure free, I applied for my driver’s licence at 17 and passed my test – first time too!  And I loved driving, it was just getting a lend of my dad’s car or whatever, but he was so good to me, giving me plenty opportunity to get experience.  I remember getting to go to my deb’s ball, collecting my date for the night and dropping her home afterwards - it was just a great night. 

My responsible head told me that overall, being able to drive was a better reward than going out and getting hammered with the lads.  But it was so hard to watch on from the outside looking in, and I felt so excluded.  To be fair, they never pressured me, but I felt myself that I should loosen up a little to try to fit in better, so I started having an odd drink or two, and it was fine. 

Of course, I then thought I knew better and reckoned it’d always be fine, but then you have three or four, and maybe five or six at a wedding or some party and then you pay the price in the morning. 

Which did happen to me, so it was back to zero once again not being able to drive anymore for at least a year.

I didn’t drink anymore then for years, but I was still getting an odd seizure here and there, maybe once every two or three years.  I realise some might love to have a record as good as that, but I was so upset and angry at how unpredictable and unfair it all was. 

At this point in my life, I was really diligent in looking after myself now, but it wasn’t having the desired effect – it didn’t seem to matter if I drank or didn’t, I still got seizures.  ‘WHAT MORE CAN I DO??’ I would scream to myself.  I reckoned that here I am, running at about 95% full health, but I’m just this few percent away from being in perfect health.  I questioned myself would I be better off being at say 50% full health?  At least it might be more obvious then.  But bit by bit things settled down when I was in college where I continued to look after myself, I did well, studied hard there and got a job soon after I left with my current employer where I have worked for nearly 30 years now.  I even went back to college later on to get a Master’s degree by night.  I wasn’t cured, I still got seizures at the same frequency, had to surrender my licence off and on, and on it went.

My employer has been fantastic to me, making sure that I was fully supported if I needed to work from home an odd day or sorting arrangements if I needed to travel about for my work which I frequently did.  I never wanted for anything, and even in later years I gained the confidence to open up to my colleagues about my epilepsy, which was well received, and I thank them for the support they showed me.

Settling down and getting married is a something that continues to fill me with happiness. However, it’s not been without challenges. 

I was upfront from our first dates together that I had epilepsy, and my wife was totally supportive in trying to get to know about the condition, reading up about it, going to meetings and conferences and so on.  I recall she brought me to a conference one time where we got chatting to some audience members over coffee – one lady we met had a young child who had just been diagnosed, and no doubt she knew nothing about epilepsy.  My wife put it so well to us both that I was just like that lady’s young child, I had made the same journey, and how I could inspire her and assure her that things would be okay for her too. 

But my feelings of inadequacy and low self-esteem continued to suffocate me.  Particularly in a social context, I could be the funniest guy one day with my dry wit and deadpan sense of humour but be crippled by these feelings of low self-worth for days on end, which had a big effect on our marriage and other friendships which I just let drift – many of which I still regret. 

While my wife knew all about the mechanics of the condition, she could not read my mind, and I struggled so much to tell her how and what I was feeling.  Much of the time, I hated going out and having to force myself to laugh at everyone’s drunken hazed humour, so much so that I would often just step out of the pub or wherever and go for a walk around town for a while, telling myself I wouldn’t be missed.  Again, I succumbed to having a few drinks and inevitably paying the price by having seizures and losing my licence. 

One seizure of note occurred overseas in a hotel where I was queuing at the breakfast buffet.  It wasn’t related to alcohol, but I was quite tired, so next thing I start getting tremors and I drop my plate on the tiled floor which causes this deafening bang, resulting in everyone staring at me.  I get another plate and some food and manage to sit down next to a guy who tells me I need to sort myself out – his condescending demeanour tells me that he reckons I’m drunk.  Next thing I remember is I’m waking up on the floor with a roomful of strangers over me, I don’t know where I am, I’m all sore, I can’t move, or lift my legs or arms as they each feel like a tonne weight, I’ve wet myself and I just start to cry and cry.

I suffered a family bereavement which had a further effect on my life in the years after, and it was here that I probably bottomed out in terms of my negative feelings and behaviour when I went for grief counselling.  While we dealt with the grief element very well and I learned to accept that I needed to start a new stage of my life without my family, I wasn’t prepared for how we opened the door to my past and learning about my feelings on growing up with epilepsy and how I had let it shape me. 

Getting to know me, my counsellor enquired into my past and out poured my feelings of inadequacy, self-loathing, and general worthlessness – all of which I knew deep down weren’t true, but I couldn’t seem to stop myself from feeling this way.  However, with time and effort, we made some great progress.  I learned to look at myself differently – focussing on all that I had achieved despite the obstacles in my way.  The good things in my life – a loving wife and home, a good career, enough money in my pocket, and so much family and friends who would do anything for me if I asked.

I mentioned at the start of my piece how I didn’t have much appetite for sports. That has changed and my attitude towards sports has changed. I cycle now and over the pandemic, I joined a local athletics club and I go running once a week or as often as I can. My wife has even taught me to swim – which I was terrified to start with – but now I love it (of course I have supervision due to epilepsy but that doesn’t take away from the experience or the enjoyment.)

My attitude towards sports has changed – and it the same way, my attitude towards my epilepsy has also changed. So, what does having epilepsy mean to me now?  I am happy to stand up and talk openly about it, and not be ashamed anymore.  Like anything in life, it feels good to let something go that’s been troubling you for so long.  It’s not all about alcohol, but I’ve tried to learn how to accept that I can only live my own life and not the life of someone else.  This is my hand of cards, it’s up to me how I play it. 

When I look back on key moments of my life, I wish I had recognised this sooner and reached out, so that’s why I wanted to share my personal experience of my journey with epilepsy. I know that there will be someone, somewhere, feeling the same way I did, and I hope by reading my story, you can get to where I am now, that bit sooner.

Thank you, Liam, for sharing and being so open and honest about the true challenges of epilepsy and how important it is for the public to learn more. If you’d like to share your story, visit the 'International Epilepsy Day' section of our website to find out how to get in touch with our team- or visit the 'Seizure First Aid' section of our site to learn more about Time, Safe, Stay!