My Epilepsy Story

Since I was 21, I have been on medication for epilepsy, an often misunderstood condition which has many variations in how it affects people. The reason I am sharing this on my website is to hopefully help others who have epilepsy, as well as helping people have a fuller awareness of the condition.

In the summer of 1987, I was unpacking from returning home to Plymouth from college in Liverpool, when all of a sudden I felt very light-headed, like the feeling you get when sitting up quickly after lying down. This was different though, as it got more and more intense, until I lost consciousness. When I came round, my parents were with me, along with two paramedics. I had bruised my arms and legs, felt extremely weak and nauseous (the clinical name for this after-seizure state is ‘post-ictal’). I had had my first full seizure (or ‘fit’) as they’re also known. These used to be termed ‘grand-mal’, but the clinical term is now ‘tonic-clonic’, (which I always think sounds like the name of a cheesy 80s band!)

 

I was diagnosed with epilepsy, and was prescribed with a drug called Phenytoin, an ant-epileptic drug (or AED). I did not suffer any further attacks until November that year. I remember because some fellow students and I were getting ready to go our to a local firework display, and I had a seizure in my room - the last thing I remember was trying to get to the room to alert a friend, but passed out behind the door. Thankfully it wasn’t locked I my mates helped me recover.

 

Over the last 20 years or so I have had lengthy seizure-free periods where I have been able to drive. Passing my driving test just before Bernadette and I got married was a major achievement, as the possibility of having a seizure was always in the background. During the late 1990s I did have a number of seizures at various intervals, but tried not to let them be a barrier to living as normal a life as possible, though of course driving was not an option. My neurologist told me that Phenytoin may not be having as great an effect as it first did, so I began trying various other AEDs, until things settled down again.

 

In more recent years, although full tonic-clonic seizures have become far less frequent, I have experienced a different type of epilepsy, in the form of partial seizures. There are two kinds - simple partial and complex partial. “In a simple partial seizure you are fully conscious. You remain fully aware of your surroundings. However this does not mean that you are able to stop or control the symptoms. In a complex partial seizure you partly lose consciousness and you are not aware of what you are doing. Because of this, you may not remember the seizure afterwards, or your memory of it will be unclear.” (from Epilepsy Action).

 

Mine are simple partial seizures, and take the form of being unable to articulate what I want to say, and at the same time being unable to decode what someone is saying. This lasts for about 30-40 seconds. I know where I am and who I’m with, it’s just a speech-focused condition, which is fine when I’m with people who know me, but a bit awkward if I get an episode while at the checkout at Tesco’s! However, I am determined not to let this stop me from being a good husband and father, from teaching, from songwriting, recording and performing.

 

St Paul said in his 2nd Letter to the Corinthians, “I was given a thorn in my flesh... Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, and...in difficulties. For when I am weak, then I am strong.”  I have found this to be true also - my epilepsy has led me to ask God for his help in my weakness, and I have found his presence and power in times of difficulty. As I wrote in my song ‘I Will not be Afraid’, “Whatever may happen in this life, He’ll always be close to you, surrounding your heart with perfect love, calming your fears”. I hope and pray that anyone reading this will find strength in the knowledge that difficulties can be overcome, shared and that there is strength from others and from God.