Margaret...

I had my first seizure when I was thirteen years old. My mum took me to see a specialist but he was awful, he didn’t talk to me at all- just grunted. I don’t think at that stage my family or I really had a lot of understanding about epilepsy. I started taking Dilantin, and was on it for some years, but it made me very sleepy, and I still had some seizures, both small and big ones.

After I finished school, I went to a commercial college, and then got a job in an office. I was sacked because they said I was too slow in my work, and maybe the heavy medication I was on did make me a bit slower, but I also knew it was because I had epilepsy. I had a number of other office jobs after this, and was also either sacked, or put off after they knew I had epilepsy. In those days they could do that, but I should think it is different nowadays.

The specialist never explained anything, and in those days there was no internet, no Epilepsy Queensland, and people in general didn’t talk about it much. So you were really on your own, flying blind, in how to best manage epilepsy. After a few years, my specialist said there was a new medication that may be helpful to me, and he changed me from Dilantin, to Sodium Valproate, which had just come on the market. I have been on that ever since, and it suits me well. I don’t feel so tired and slowed up, and my seizures are very well controlled now.

I never had a seizure when I was at school which was good, and I always had friends. My parents were both pretty good, but it was really mum who took me to the doctors and did most of the ‘helping me cope’ while I was still in school. My older sister seemed to resent the fact that mum had to sometimes give me extra attention, and used to make sarcastic remarks about it a lot.

I was in the Brownies, then the Guides, and later, the Sea Rangers, and enjoyed them all. As a Sea Ranger I did a lot of sailing and rowing, but the epilepsy was never a problem. I met a wonderful man, and married him when I was in my early twenties. When we were beginning to get more serious, I told him I had epilepsy, and he just said it was ok, and it didn’t worry him at all.

We had two normal, healthy children, and I had good pregnancies. In one pregnancy I did have a seizure, but in the other one, I had no seizures or problems at all, and I also had no problems in caring for them when they were babies or young children, even though my husband was a shift worker, and I was often on my own. I remember my Great Aunt saying to me once, I should wait till my husband was home before I bathed the babies, but that thought had never occurred to me before, that the babies could be in any danger if I had a seizure. Both my daughters knew about my epilepsy from the time they were very little. The older daughter was always able to help me if I had a small or large seizure, without any worries, but the younger daughter used to get a bit upset about it.

I have never had a driver’s license, but that doesn’t stop me from having a very full, productive and happy life. When the children were younger, I was a Brownie group leader for twelve years, and took children away on camps, and did all the things other leaders do. I did once say to some parents, that I had epilepsy, and if anyone was worried about their children coming away on camp with me, to say so, but they were all fine, and the camp went well. I have worked, and I also do a lot of volunteer work, for Epilepsy Queensland, and for many other needy causes. My husband and I travel a lot, and I plan to go to the USA next year.