A Man's Perspective

I've noticed that most of your stories are written by women with epilepsy- perhaps that's natural given the tendency for women to discuss things (and conversely, for men to unhelpfully "bottle things up"). I wanted to both tell a story from a man's perspective and show that talking about epilepsy is important for people who are affected with this condition.

I don't really know when my first seizure occurred; they were very short absences lasting only a few seconds. I took up fencing as part of school sport at about 17 years old, and noticed that during some very tense bouts when I was concentrating hard, I would stop breathing. Occasionally my opponent would hit me, and I would not react at all - I'd only realise a couple of seconds later. As can be imagined, some fencers were convinced that I was "throwing" bouts to affect the outcome of tournaments and were not too impressed!

Given my competitive nature, I found these 'blackout' episodes quite frustrating, because I was the only one who knew what was occurring. After a while, I actually mentioned them to my parents.

So started a series of CAT scans, thyroid tests, blood tests and other enquiries to determine what was going on. At one stage our GP asked me (in front of my Mum of all people) whether I was smoking cannabis! Even if I was, did he think I'd be telling the truth on that one?

Before the outcome of most of these tests were clear, I had my first grand mal seizure. It was during the lead up to the NSW leaving certificate exams, during a period in which I had not managed to get much sleep (due to my tendency to 'cram' at the last minute!). Playing a
computer game during a break, my sister and mum apparently watched me slide sideways off the chair, hit the ground and have a grand mal seizure. All I remember is waking up confused with an oxygen mask on, and not being able to remember the date - 21st April 1991. The verdict was apparently in - I 'had' epilepsy. I was put onto Tegretol, and then
changed over to Epilim to prevent the drowsiness.

I was devastated. 18 years old boys do not like being told that their bodies don't work properly or are not the same as everyone else. I felt angry, I felt extremely depressed, I grieved. It was a nightmare come true; as a child I had weird phobia of epilepsy, and now I had it myself.

I wish I could say that I adjusted well and learned to cope with what was happening to me and my family, but I didn't. Looking back, I rebelled against what I felt was an unjust condition. Right up until the first year of my marriage in 2001, I was occasionally adjusting my dose of Epilim without consulting my specialist or not medicating at all. This naturally led to a number of seizures, including one on a train and one in the shower (Just lucky that our first bathroom was so small that I literally couldn't fall over in the shower cubicle!). Why did I do this?

I wanted to pretend that I didn't have epilepsy and it wasn't a part of my life.

What I didn't understand was that my denial was affecting those around me (especially my wife, who had to find me lying on the floor a couple of times). It was also seriously endangering my health and putting me at risk.

So I grew up (at the age of 29!) and decided to own my condition. I take Epilim every day at the same time of day. I don't pretend that the epilepsy is not there, but I also don't make it larger than it is. I also talked about it with my wife, told her why I acted the way I did
and how I realised it was affecting her.

If you are a teenager or young man who has been diagnosed with epilepsy, please take my advice and don't deny what is happening to you. Take the time to talk it over with your family, medical professionals, loved ones. Take time to grieve and learn that the diagnosis doesn't change who you are.

Ashley

Epilepsy Action
1300 EPILEPSY (1300 37 45 37)
Australia wide Priority Call