Our phone chat #21 – Steve

Maria: Hi Steve, thank you for wanting to share your story. You have had a bit of a rough and rocky road trying to live with epilepsy whilst not being fully supported in the community. I understand that the lack of support has been hard for you. How does your story begin?

Steve: Up until 2005 I was leading a busy life. I had my own painting and decorating business whilst being a solo dad. I enjoyed playing bowls and I was a body builder. Life was good and relatively normal until the fateful day I had a car accident. I am not sure what happened but I have vague memories of waking up to seeing the police, fire, and ambulance staff working on saving me. I know I was in the hospital for ten days recovering from whip lash and with problems with my back and neck but the right side of my head took the full brunt of the accident. You know, in a blink of an eye my life then changed forever.

Maria: It was shortly after that accident that you had your first seizure.

Steve: Yes! My daughter told me that I had a massive seizure when I was just about to take the roast chicken out of the oven! Later hospital tests showed that I had developed epilepsy as the result of the car accident and I was put on medication. Epilim it was. I hated the weight gain from taking it.

Maria: You continued to have seizures whilst on Epilim.

Steve: I did, and they terrified my daughter as I would suddenly freeze, my eyes would roll back into my head and I would drop like a fence post. I would then be frothing at the mouth and making those suffocating sounds whilst jerking. I had no warnings when those seizures were about to happen and then, afterwards, I would be as sore as the last man standing in a wrestling tournament. I would speak all gobbedly gook for hours afterwards as if I were drunk. I have broken my nose on several occasions and I have been in three induced comas because my seizures wouldn’t stop.

Maria: Gosh! This is pretty tough stuff.

Steve: I couldn’t continue working on my own as I had lost my driver’s licence and so I applied for another job. During the interview I had one of my seizures. Guess what? I didn’t get the job! I really started to struggle emotionally from then on and I felt angry with the world. The medications took a toll on my life. My weight shot up and I couldn’t sleep or I would have shingles and be emotionally low. Living with epilepsy started to make me feel like I was living a jail sentence. I became anxious and depressed and I got to the point where I couldn’t even cry anymore.

Maria: You had some really dark days but you have found yourself at peace. What has happened for you?

Steve: I found Jesus and a supportive pastor in my church! And I found a wonderful woman who has learnt to understand my epilepsy. I really need the love and support of people whilst dealing with these seizures.

Maria: It is certainly important to have that support, Steve. Having uncontrolled epilepsy is quite difficult to manage and you have had difficulties with the law when you have had break-through seizures whilst driving.

Steve: I have had three seizure-related court offences over the 15 years where I have driven a car and had a seizure. The court has seen me as a reckless driver and I have been stood down from driving for two years at a time.

Maria: That lack of independence is really hard when you lose a driver’s licence and it can be especially difficult when you live rurally.

Driving requires a complex array of neurological functions and skills that involve vision, thinking, attention and judgement, co-ordination, reaction time, and motor control. Any of these can be impaired by epilepsy and seizures. People who drive vehicles may present safety concerns for themselves, their passengers, and the public.

We all have to follow the strict NZTA laws and that includes those who drive drunk, drugged, or who are simply being reckless.

You are doing really well though, Steve, and I am so pleased that at long last you have found the much-needed support when tackling those difficult-to-control seizures. It may take a while for your community to recognise what epilepsy is and how it can impact on a person’s life but stories like yours will help with that awareness. Thank you for your time.