Have you ever had to worry about not having any control over your own body? For those who suffer from epilepsy, this fear is a reality.
John Keatinge, 21, is a final year Culinary Arts student in DIT who discovered he had epilepsy when he was 15-years-old.
“I was in third year and was worried about doing well about exams and school in general so I wasn’t sleeping properly,” he says.
“One day in school I went to the bathroom during class and the next thing I remember is being on the floor surrounded by ambulance paramedics. I had no idea what was happening. I thought I fell and hit my head, I didn’t think it was anything else.
“I was in hospital for two weeks until the doctors told me I had epilepsy. When I first heard the diagnosis I wasn’t too upset, I was too young to realise the future implications.”
According to the figures from The Irish Epilepsy Association, about 40,000 people in Ireland suffer from the condition – to add to that, there are an estimated 70 to 80 epilepsy deaths every year.
The effects of seizures differ from person to person but anyone is susceptible to epilepsy at any age.
What worries John the most is the unpredictability.
"What scares me the most is the fact that I could have a seizure out of nowhere," he says.
“A few years ago I was walking to the shop with my friend and I just had one right there on the path. Once again I ended up in hospital, even though the doctors told me there was nothing they could do for: there was no surgical remedy, only medicinal.
“Another time I had one in football training. I told people I fell; it’s easier to say that instead of, ‘Oh I have epilepsy’. Most people understand but others treat you differently, as if you are ‘delicate’ and need to be looked after.”
John is a sufferer of Tonic-clonic epilepsy and feels that it the most potent form of the condition; “I don’t have photosensitive epilepsy so flashing lights are not a problem for me, but most people don’t know about grand-mal. This epilepsy is down stress and lack of sleep. I think it’s more dangerous because stress is so common for everyone: how do you avoid stress?
“Last summer I was finding it hard to sleep and I was terrified I was going to have a seizure. I would be awake at 3 in the morning praying that I would get even a few hours of sleep. I wouldn’t tell many of my friends this but I would cry some of those nights, asking why I had to get epilepsy. Anytime things get a little hectic I really have to be diligent. That fear of helplessness is always present.
“It’s a bit awkward on nights out with friends, especially from college where the drinking thing is a huge part of socialising,” he continues.
“I can’t drive because of my condition. I think the inability to drive is one of the most frustrating aspects of my epilepsy. I need to be seizure free for two years and off my medicine to be even considered by the doctors to be eligible to drive. I don’t see that happening anytime soon.
John remains positive about his epilepsy despite the setbacks that he has to face; “I’m lucky because my medicine stops the seizures once I watch myself.
"My condition is manageable: I have a relatively normal life. Obviously I realise the implications for the future; in any job I have I will have to inform people so there will never be any escape, but that is something I just have to deal with. I’ve accepted that I have epilepsy.
"People can see me for me and not for the condition I have.”
With thanks to www.campus.ie