Living with epilepsy

Epilepsy is a neural neurological disorder that causes seizures, and affects around 65 million people worldwide. It comes in many forms and many levels of severity, and the stigma attached to this disorder can often be shaming and harmful to those who suffer from it. This is the story of one such person living with epilepsy…

Hi, I’m George, and I suffer from epilepsy.

I grew up in an average suburban home, with a relatively average childhood. I was a healthy child who enjoyed playing video games and once a month my folks would treat me to a night out for burgers and gaming at the nearby arcade centre.

The first attack

I was a young boy of 11 when one Friday night at the arcade centre, whilst watching my dad set a new high score on a racing simulator, I started to feel dizzy and encountered a strange “out of body” sensation which made me feel very out of control. I did not recognise the piercing screaming as my own voice and then just as suddenly… blank. I woke up in a hospital bed a while later, extremely confused, with no idea where I was, and with an aching head and body. I had a drip attached to my arm and two extremely concerned looking parents at my side. I was told that I had a Grand Mal seizure (also known as a generalised tonic-clonic seizure). I had no idea what that meant or what lay ahead, but I can tell you now, it was no fun.

Living with epilepsy in school

What followed was a series of hospital tests and visits to a neurologist, who tried to work out the cause of the seizure and the treatment going forward. This was all very concerning to me as I didn’t want to miss out on the arcade nights out with my folks! But, as predicted by my loving parents, the Doctor recommended that we avoid the flashing lights until I’m healthy. That’s exactly what happened. No more arcade nights for me.

After that, I was bounced to-and-fro on a cocktail of medication in order to find the correct treatment for me, which unfortunately resulted in more frequent seizures occurring. It’s a common side-effect during the period of trying to find the correct medication, and there’s no “one size fits all” solution. After some time, a suitable balance of medication proved successful to control the erratic seizures, and this small handful of pills would become part of my daily routine. As a child, it’s quite a challenge to have to take that many pills every day, and it’s a little embarrassing. I mean, none of my friends had to swallow a fistful of pills every day.

Some years had passed and by the time I was in High School, my family and I had adapted and learnt about what possible triggers could bring on a seizure, and life carried on as “normal”. With no further instances of seizures thanks to the medication and twice yearly visits to the neurologist for check-ups, I learnt that I could live a seemingly “normal” life as a teenager. As long as I was aware of the triggers and kept taking my medication. I had one seizure late in high school the day after an all-night bonfire with friends. Of course my friends had never seen me have a seizure and there was quite a bit of distress as a result.

This seizure was triggered by lack of sleep and possibly the constant flicker of the flames. A lesson learnt for sure.

Living with epilepsy and your loved ones

From then on, I was open and honest to friends and family about my condition to ensure they know what to do should they encounter such an experience. Keep in mind that not all people handle these events the same, and this could lead to a certain level of trauma for both the epileptic, and the observers. I find those who are closest to me suffer the most from stress, trauma and emotional concern. It’s naturally hard for them to witness their loved one physically suffering, and in some cases it can be frustrating for them too, as the epileptic can begin to suffer from memory loss. Imagine living with a partner that can only remember about 50% of your conversations – if that!

As an adult, I have had seizures every now and then, some resulting in hospitalization and one particularly awful incident ending up in surgery. The seizure happened in the bathroom – which is full of hard and pointy surfaces – and I broke my shoulder. This requires pins and screws to fix and a whole lot of physiotherapy to get just a little bit of movement back.

How do you deal?

Luckily for epileptics like me, there is all manner of treatment, even if there is no cure. Some people suffer more than others – some having daily or even multiple daily seizures, which forces them to go everywhere in a protective helmet. I’m fortunate that my seizures are largely under control. My biggest concern thanks to that is being treated as normal. I may have some setbacks, but I can live and work like anyone else. So if you know an epileptic like me, don’t treat them differently. Try to educate yourself to know what you could do to help them instead.

Learn more about World Epilepsy Day here.

More advice on living with epilepsy can be found on WebMD.

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