Our phone chat #13 – Kim

Maria: Hi Kim, I am really interested in hearing your story today. Your epilepsy story begins as a 12-year-old.

Kim: There were a few significant events that happened in my life when I was 12 years old that caused me to really spin out of control. Firstly, I lost my best friend in a road accident. We went everywhere together and I couldn’t believe it when she died. I really mourned for her at the time. Secondly, I was kicked in the head by a horse and this led to me having seizures. The only trouble with that was being told in church one day, that I had the devil in me as I was recovering from a tonic clonic seizure. You know the sort. I was frothing at the mouth with my eyes rolled back in my head. That comment absolutely did it for me and, from then on, knowing how bad the devil was, it blew me out of the water and I was blown into a world of turmoil. I became the wild child overnight.

Maria: Oh dear! Kim. Occasionally I hear comments like this and it is tragic to know that there is still that level of misunderstanding around what epilepsy is. Epilepsy is purely a neurological condition. It is when those brain cells start misfiring and people have seizures. What happened next?

Kim: I escaped into the world of marijuana. I became a heavy marijuana user and I would escape into a ‘better’ world, or so I thought at the time. I liked going back into that world time and again and I had no thoughts about how dangerous it was. The only way that I could keep happy was to be totally stoned. When I wasn’t stoned, I was depressed. I started wagging school and then I left at 15 years of age and I went to live in Australia with my boyfriend at the time.

Maria: What was happening with your epilepsy at this time?

Kim: Oh! My seizures simply kept coming. I would have at least three tonic clonic seizures a day and I had no idea of when, or where, I would have my next one and I didn’t care. My neurologist did tell me that I wasn’t doing myself any favours and that my lifestyle was causing me to have all these seizures. I was completely blind to receiving any help. I blamed having dyslexia on my lack of success in life. I don’t even have dyslexia! I was just too ashamed, I suppose, to say that actually I was just stoned. What an excuse!

Maria: I am afraid to say that marijuana is never going to cure epilepsy and that it can actually worsen seizures in some cases.

Kim: One day, and after 15 years of being totally wasted, I woke up to what I was doing. I was living back in New Zealand at this stage and I wanted something better for myself. I knew that my two children were terrified of my seizures. I started to feel stressed living day-by-day for my next fix and realising that my children needed more from me than what I was giving them. I had reached rock bottom and I became suicidal. One day I dropped my children off at day care and I walked away. I suppose I was trying to walk away from my life and what it had become. Eventually I fell down outside a church only to be picked up by a wonderful elderly woman. I will never forget her kindness or her name, Roma. I owe her my life. I was just 27 years old!

Maria: How is life for you today?

Kim: I am now in my 40s and I haven’t touched alcohol, marijuana, or tobacco for a long, long time, twenty years in fact. I still have seizures but I feel that I am getting on top of them. I am still not used to that horrible feeling of a snake writhing inside my stomach, which is the warning that I am about to have a tonic clonic seizure, but I try to distract myself and hope that it doesn’t happen. I am hoping that I will grow out of my epilepsy. I am also taking fewer medications and I feel more alert and I am happier than I have ever been.

Maria: Brilliant! Please keep in touch with your neurologist, though. Any sudden withdrawal from your medications could lead to you having more seizures or even status epilepticus which is when a seizure doesn’t stop.

Kim: I want to say sorry to my neurologist. I want to tell him that I don’t have epilepsy but instead that I blew my brain cells out. I want to thank and acknowledge him because he was trying to help me for years but I didn’t want to listen.

Maria: What has been your path to recovery?

Kim: I approached the woman who told me that I had a devil within me all those years ago when I was 12 years old. She wasn’t happy to be reminded of that occasion but for me I was then able to put that past behind me. I now belong to a different church group.

I also went to polytech and I did a two-year design course. I am a successful fashion designer in New Zealand and I sell my clothes to boutique stores. I love my job. I am grateful for my family and my two wonderful children. I have less negativity in my life and less stress. I know that stress is a major seizure trigger for me and so I surround myself with good things.

I have also learnt that a story always begins at home and children live what they learn. Life is really short and it is valuable. I want people with epilepsy to look after themselves and to know that anything can be possible. I was meant to live through all of my life’s journey and I want to share my knowledge to help others.

Maria: Well done, Kim. I have seen your boutique clothing and I am in awe of your brilliance.

Thank you for your time.