Our phone chat #3 – Lisa’s Story

Maria: Hi Lisa, thank you for asking to take part in this year’s community project. You wanted to talk about the events that your son, Jordan, couldn’t remember in his epilepsy story. Events that took you on a roller coaster ride of emotions and so I thank you for sharing your thoughts. I know that, as a parent, supporting our children through epilepsy can be a difficult journey in itself. Please take your time in telling us your story.

Lisa: I will never forget the day I witnessed my son having a tonic clonic seizure at my home. It was the scariest thing that I have ever witnessed and, what I saw, will live with me forever. This was his second seizure in his life and he was put into an induced coma for two days and I imagined the worst, as any parent would. But what was worse for Jordan, was the blunt message said to him by the doctor at the time, “You can’t drive. You can’t work. You have a high risk of dying.” The doctor then walked out of the room. My heart dropped and I felt so sad believing that my son would never be the typical 20-year-old lad out enjoying life and having fun.

Jordan was prescribed epilim, but it made him so tired that he stopped taking it after a while and he started to spiral out of control emotionally.

Over a year later, Jordan was involved in a car accident on his way to work. He drove through a large round-about whilst having a tonic clonic seizure and he was still recovering from it when the police arrived. They believed that he was drunk and so they roughly tackled him to the ground and handcuffed him. Unfortunately, he became quite aggressive and the police saw this as resisting arrest, but once the police realised that he was indeed recovering from a seizure, they took him up to the hospital to be treated.

Maria: Oh dear! If you restrain any person who is confused after a seizure, they may respond aggressively. Unfortunately, many people living with epilepsy can be mistaken for being drunk whilst having seizures which doesn’t help their situation at all.

Lisa: Agreed. Jordan was angry at that time and he got angrier from taking leviteracetam once he was officially diagnosed with epilepsy. Boy, his life really did spin out of control from then on. I was aware that he was going down the wrong path in life but I couldn’t stop him. Every time the phone went late at night, my heart would drop because I imagined that it was the police phoning to tell me that Jordan was either dead or injured. He was having lots of seizures and he always ended up in hospital. I started living in amber alert. I was in fear of what could happen to him.

It was about that time that I came across the EWCT sausage sizzle at Bunnings. I found your name and I asked to see you with Jordan. Jordan wasn’t particularly interested in meeting you but I honestly believe that you saved his life when you met us. Jordan had hit rock bottom in his life and he felt that no one was listening to him but you understood exactly how he was feeling and you believed in him. It was the turning point in his life that he needed.

Maria: Thank you, Lisa. I feel humbled by your kind comments but thankfully Jordan was able to see that the life he was living was not the life that he wanted. As he so nicely said, “You can’t soar like an eagle if you hang around with turkeys”! He also had a medication review and he was switched from leviteracetam to lamotrigine which improved his mood.

Lisa: Indeed! Shortly after meeting you, he smartened himself up, met up with his old friends and moved to another town to become a butcher working alongside my brother. Jordan takes responsibility for his epilepsy now by routinely taking his medications and he manages his seizure triggers. That means no drugs and alcohol. He has also trained our entire family in epilepsy first aid and we all know what to do if he should have a seizure, which thankfully is a very rare event these days.

Family means everything to Jordan and he is my inspiration in life. He has the unconditional love and support from all of us. He tells me that epilepsy is a part of him and not to worry about his seizures. He will be okay and I believe that he will be. I no longer live in fear. Life is great!