Maria: Hi Jan, thank you for participating in our community project called “Our phone chat”. Everyone has a story worthy to be told and, in this project, we are going to chat about your epilepsy story and how epilepsy has impacted on your life.
Please tell me a bit about yourself.
Jan: I was born in the Waikato to farming parents straight after the war in 1946. Growing up on the farm was hard work but I enjoyed milking the cows and helping out. It wasn’t until I was 16 years old that I developed epilepsy. We couldn’t work out why that happened but I grew quite quickly and there was some thought that I had grown too fast at that time. I don’t know. It was quite strange.
Maria: Can you please tell me about your seizure types and how you felt about your diagnosis?
Jan: My seizures seemed to change within six months of me having my first seizure. Apparently, on my first seizure I wandered out of my bedroom in the middle of the night turning around in circles. I could hear my parents talking to me but I couldn’t control what I was doing. I remember feeling quite frightened but my mother was quite a no-nonsense, calm person and this had a positive effect on me being able to cope.
About six months later I started having the so-called ‘grand mal’ seizures, and I was diagnosed with epilepsy and put on medications. That would have been back in 1965.
I wasn’t disturbed by this epilepsy diagnosis and I immediately worked out for myself how I could be safe at all times just in case I had a seizure. I wouldn’t have a bath, preferring to shower. Nor would I go swimming. I worked out that my seizures happened between 8 and 10 o’clock in the mornings so I decided that I would move into town (Hamilton) to find a job where I could go to work later in the day. I got a job in the health clinic at the YMCA, which was the first gym for ladies, working as a masseuse. I wasn’t embarrassed meeting others and I never had a seizure during my time at work. I did that job until I got married.
During my early days living in Hamilton I boarded with others and that is where I met my future husband. I was married at 20 and my husband was not at all worried about my epilepsy. We have now been married for 53 years.
When we settled down together, we made sure that we chose a home somewhere near a bus stop so that I could remain independent. Being independent was really important to me, even when I became pregnant with my first child. I never saw epilepsy as a barrier for me being able to do anything in life and I think that positive attitude came from my mother. I thank her for making me strong.
Maria: How was your pregnancy with your first child?
Jan: I had more seizures! I discovered that I was okay lying down but, as soon as I stood up, I had a seizure. I ended up by having to stay in the hospital for several months in the middle of my pregnancy to be cared for. I went back to the hospital again when my GP delivered
my baby son. GPs used to deliver babies in those days. Interestingly, my son was unable to speak for several years with a condition called aphasia. The doctors believe that he may have had a stroke when I was carrying him.
Maria: How did you manage with your new-born son at home?
Jan: From memory, I didn’t have many seizures at all once my baby was born but I still put in place important safety measures just in case I had one. I had to cope on my own during the day when my husband was at work.
I never carried my baby around, especially before 10 O’clock in the mornings. I made sensible decisions because I didn’t want drastic things to happen. My husband always bathed the baby when he was home.
I think that I coped really well and, less than two years later, I gave birth to a little girl, who incidentally has epilepsy. I had an easier pregnancy with her and with no seizures. With two little ones to look after I made sure I rested when they did.
Maria: Please talk about those early years at home with your children?
Jan: I had a normal busy life as a mum. I attended kindy meetings and I became involved in my community but my seizures returned and it always happened around my menstrual cycle and so I asked for a hysterectomy, which sounds rather drastic but it solved the problem. I changed for the better overnight and I haven’t looked back.
Once my children were both in school, I went back to work, demonstrating sewing machines at a furniture store. I really enjoyed that job and I felt that I was achieving in life and I wasn’t just a mother at home. I later went to work in a cafeteria before setting up a successful business with my husband growing vegetables.
Maria: Looking back on your life how do you feel about having epilepsy?
Jan: Over the years my seizures have become less and less. I think that my hormones have played a part in it. Could that be the reason? Every year I also have trouble adjusting to daylight saving! It really mucks me up and makes me feel tired.
I feel quite positive as I have always made a point of being sensible with my decisions. I learnt all there was to know about epilepsy when I needed information and I have had great support from my husband. We both joined the local epilepsy organisation back in the 1960s and we have been involved ever since.
I have had a lot of drive to do well in my life and I am really happy with that.
Maria: What take home message would you like to give people about epilepsy?
Jan: I would like people to be positive in their own ability to do things for themselves and not to feel disadvantaged by having epilepsy. Epilepsy need not be a barrier to a good life. Have pride in yourself and find the courage to do well. I suppose that has come from my mother’s attitude towards my epilepsy. I could never give her an excuse for why I couldn’t do anything!
Maria: Thank you Jan. I have appreciated our chat.