Getting a driver's license is a monumental event in most teenagers' lives. It's a rite of passage that many teens with epilepsy worry that they'll miss. For me, being diagnosed with epilepsy towards the end of year 11 felt like the end of the world. I was a self-confessed petrol head and couldn't wait to get my learners.
All that changed one frosty July morning in 1987. I remember the date clearly because Pat Cash had qualified to play in the Men's Wimbledon final so I got up extra early before school to watch it. After starting the shower the next thing I recall is hearing the voice of a man calling my name. I didn't know who it was. My eyes gradually came into focus and I caught sight of this unknown man. My mum was close by and must have seen the fear on my face and reassured me that he was here to help me. My hair was still dripping wet and as I began looking around and raised my eyebrow it hurt! I could sense an openness on my forehead but my mum caught my hand before I could touch it telling me I had cut my head when I fell. There was a bandage on it wrapped very tightly. Later I would come to learn that it was a huge cut that opened up from my eyebrow to my hairline that left a blood trail in the shower like a scene out of Psycho.
I was dropping in and out of awareness. So tired. My head felt like I had a crowbar going through it and any eye movement was excruciating. I knew they were speaking English but I couldn't quite understand what they were saying. I felt like a space cadet. Giddy. Uncoordinated, even my speech was awkward and slow. It was hard to articulate anything beyond a couple of words.
In the scheme of things, I coped really well and just got on with it. I think it impacted my family more than me. They saw me having the seizure. I had locked the bathroom door so my dad had to break it in, breaking 2 ribs in the process. I was wet, naked and covered in blood but it was more than that especially for my dad. He was heartbroken thinking my life was over.
My parents were so over-protective was an understatement. I was still me. I didn't feel any different once I got use to the Tegretol and wasn't half comatose all the time. My parents saw me differently. They watched me like a hawk. They restricted all my activities and outings. I understand now that it was a perfectly natural reaction from them but at the time as a teenager, it was very difficult.
Teenage years are often a time when standing out is the last thing a child wants. A lot of kids feel painfully awkward, and it can be worse for teenagers with epilepsy. They may be embarrassed by their condition, worried about having a seizure in public or even worse, at school. The side effects of their medication can be challenging because they affect concentration and some even their physical appearance.
The good news is - you're not alone! Chances are there is a community of people in your area going through the same challenges you are.
Epilepsy Australia conducts a national helpline that will take callers to their local Epilepsy Australia member. To talk to an epilepsy support worker, to deal effectively with the difficulties caused by epilepsy call 1300 852 853
What you can do when there is a seizure?
As seizures are unpredictable and people with epilepsy may not always know when one might happen, making them potentially dangerous. Seizures mostly run their own course but there are a few things that can help, like timing the seizure and keeping the person safe Ð particularly protecting the head from injury. It is crucial that during a seizure the person not restrained in any way nothing is put in their mouth.
¥ Stay with the person
¥ Time seizure
¥ Keep them safe: protect from injury especially the head
¥ Roll onto side after jerking stops (immediately if food/fluid/vomit in mouth)
¥ Observe and monitor breathing
¥ Gently reassure until recovered
¥ Put anything in the person's mouth
¥ Restrain the person
¥ Move person unless in danger
Call 000 when:
¥ You are in any doubt
¥ Injury has occurred
¥ There is food/fluid/vomit in mouth
¥ Seizure occurs in water
¥ Person has breathing difficulties after jerking stops
¥ Another seizure quickly follows
¥ Seizure lasts longer than 5 mins
¥ The person is non-responsive for more than 5 mins after the seizure ends
Source: Epilepsy Action Australia.