Our phone chat #9 – Maxine

Maxine: Hi Maria! Thank you for the invitation to participate in your phone chat project. Personal stories are always interesting.

Maria: Hi Maxine! Not a problem. It is always lovely catching up with you. Where shall we begin?

Maxine: My epilepsy story started back when I was 14 years old, just as I hit puberty. It was the end of the beginning as I felt suddenly oppressed by society. I am going back forty odd years now when there was still a lot of stigma, fear, and prejudice towards epilepsy. I felt that I was handed a bad deal in life as having epilepsy had that ripple effect and I missed out on growing up. Suddenly I couldn’t play sports, go to graduation, or go dating. All the things that I wanted to be doing at that age.

Maria: There must have been lonely days for you. How did you manage?

Maxine: I became depressed! There were no Marias in those days and I had to learn to cope on my own, which was really difficult and so I left home and became involved with the ‘fringes of society’. I won’t call them bad people but their company didn’t help me as I made some really bad decisions from then on. I suppose I felt angry with the world for having epilepsy. I got involved in drugs and I fell pregnant! But I have learnt from my mistakes. I believe that it has made me a better person today.

Maria: We all make mistakes growing up, Maxine, that is life.

Maxine: It is! But it hasn’t been all bad as I did get to meet some wonderful people along the way especially my Maori whanaunga who took me in when I was at my lowest. They never judged me for having epilepsy. In fact, they saw me for who I am. I owe my life to them.

Maria: There was a traumatic incidence in your life that showed the power of family love. Would you like to say what it was?

Maxine: On July 17th 1998, I will never forget that date, I fell into a scalding hot shower and had a seizure. I received third degree burns to 40% of one side of my body and I was in hospital and rehabilitation for a whole year. It was a scary time for both my young son and me, but I came through it with the help of my family and Maori whanau, my son’s whanau. I found them to be very loving towards me when I needed their love. They did not judge and accepted me for who I was.

My own family and my Maori family/whanauga supported me to achieve my goals at that time just in showing love and kindness.

Maria: Having this horrendous injury was also a turning point in many ways for you.

Maxine: Yes! I was in survival mode for a whole year but then I was encouraged to see the bigger picture in my life. I was on a benefit for a little while, which I hated. I was told that I couldn’t work and so I did quite the opposite and went back to work. Interestingly, my
seizures also stopped, which was amazing. I could trust my brain to behave itself. Up until my injury I had uncontrolled epilepsy but I have only had one seizure since, and that was back in 2004, which means sixteen years of freedom!

Maria: Why do you think that this has happened?

Maxine: I am going to put it down to menopause! I still take my meds even though my seizures may have resolved but I am not taking the risk of not taking my meds and having another seizure. Hell no! I would be too frightened to have another seizure. I don’t want life to stop for me. I love my job, where I am valued, I love driving my car, and I love my life.

Maria: You are a strong woman; Maxine and you have a lot to offer to others facing hard times.

Maxine: I can help others, even if it is just to say ‘I understand where you are coming from’ as I have lived a life of hard knocks. Having epilepsy, the loss of my husband in 1993 in a drowning accident, and having a serious burn injury have taught me resilience, something that we must all learn to have especially in these uncertain times post Covid. Build a positive life for yourself and be strong. Trust in the connections that our communities can provide for us using the family and friends to support and strengthen. Remembering that what we receive is given back with gratefulness, love, mana. Kia kaha