James Gaydon is the Challenge and Sports Events Manager at Young Epilepsy, here he shares a blog he wrote about his experience of being diagnosed with epilepsy, his feelings at that time and how he has triumphed over his condition.
Getting my head around it
The doctor leaned over his desk, looked over the top of his glasses and said, “Well James, you have epilepsy, how do you feel about that?” It wasn’t his diagnosis that got my back up as such; but the unfeeling way he delivered it which almost prompted an aggressive response to his question. I am not the violent type so I just fumed. I let him explain that many people take this type of news badly and as a consequence need to be referred to a psychologist to help them readjust. It was about six months earlier that the first seizure happened.
When I was 16, my dad was woken by a banging coming from my room in the early hours. I was known for keeping odd hours (I was a teenager) so my dad lay there for a moment before realising that this wasn’t just me being inconsiderate but that something was wrong. As he walked in my room I was having a seizure. They used to be called ‘grand mal’ but nowadays are referred to as tonic-clonic seizures. My body convulsed and shook like it had electricity being passed through it. With my jaw clenched I struggled unconsciously for breath and my eyes rolled back. Mum and dad stayed with me while the convulsions continued and then after a few minutes they began to ease. The doctor came and even now I can remember the smell of his jacket. I think all doctors over a certain age who wear jackets and have the medical bag have a similar smell! The doctor said that I had had a seizure but the cause was unclear and at this time no specific medical treatment was required.
Anyone can have a seizure once and that may not mean you’ll have another, so it was a case of wait and see what happens next. He advised rest and correctly stated that my body would feel fairly battered. To be more accurate I felt that I had been 12 rounds with a pro boxer. My tongue was blood-red with teeth marks and swollen, all my muscles were filled with lactic acid and ached, I mean really ached, and I had a banging headache.
Once the doctor and his strange smelling jacket had left, my mum gave me a Magnum ice-cream (a rare treat usually) to reduce the tongue swelling but on this occasion there was no pleasure in the eating. It actually hurt to open my mouth and my tongue didn’t want to be consoled. Time passed and I tried to shrug off the event and continue on. I was always aware that ‘it’ may return and did do some research on epilepsy, but confident that ‘I’m was not disabled’ it wasn’t something I was going to worry too much about. I was coming up to 17 years old so I was concentrating on gaining some financial independence and keen to have fun with my friends.
About six weeks later it happened again. Much the same situation except this time it was a shorter episode. This time I actually woke up after the seizure (I cannot recall how much longer after) however I was petrified. My body was, as before, beaten up but I had a real sense of being under the control of something in my head. I was filled with fear knowing that it could happen again… anytime. There was no way I could sleep that night until I passed out with complete exhaustion.
I saw the doctor and he arranged for an Electroencephalogram (EEG) and MRI test. Although my fears were becoming reality, I was also really pleased that questions were hopefully going to be answered. The possibly horrible truth was better than the very scary unknown. The doctor showed me the results of both tests and both were unremarkable. No I didn’t have a tumour, and yes I did have a brain. My slightly less than impressive GCSE results were down to my laziness, not a medical deficiency. Damn it…
At this point the doctor delivered his diagnosis with a distinct lack of tact. Epileptic? What? You said the tests were clear…? How do I feel about it? HOW DO YOU THINK I FEEL ABOUT IT!?!?!
I believe it was this same doctor that told me how epilepsy will affect my life. Specifically, I couldn’t work with children as I could harm them during a seizure. Sports teacher plans out of the window then… no need to aim high pursuing the required academic qualifications.
Despite learning to drive when I was 15 years old (when working on a farm) I couldn’t hold a driving licence of any kind until I had been seizure free for 3 years (as it was then). Independence denied. Stuck in my rural village for another 3 years (assuming no more seizures). Furthermore, I had to take pills every day, twice a day. I was given the standard anti-epileptic drug called Epilim. These purple tablets were to be taken every morning and every evening to ensure that the drug remained in my blood around the clock. It was sinking in… I really did need to start living by the new rules that were being laid in front of me.
Unbelievable. This is crazy…
As I walked from the doctors to the car I made a decision. I could either become angry, frustrated and be a victim in this situation, or live to the maximum that I could and endeavour to overcome any obstacle. Well there was no choice. I didn’t identify with the ‘victim’ label.
Later in my mid-twenties, after many seizure free years I had another seizure while I was working as a car salesman. This was a daytime episode so this meant I lost my licence for 1 year but most importantly I lost my job. I had to reluctantly ‘sign on’ while I had an increase in my drugs and started taking Lamotrigine (also used as an anti-depressant!) with my Epilim. As I was keen not to sit about doing nothing; I went to a college for people with disabilities for a year to study Sales, Marketing and Customer Service. The college was residential and was a really interesting experience! Plenty of sex, drugs and rock n’ roll. Well to be honest not so much rock n’ roll. I didn’t seem to fit the demographic there for sure. I spent most of my time as a recluse in my room minding my own business, watching TV and trying to avoid getting involved in the drug raids by police. There were many people there angry at life for the situation they were in. Soe had been life longer, and some, like me were more recently acquired. For most of us our lives we had been turned upside down and dreams and aspirations broken. The impact of my disability on me was not as harsh as those experienced by others. I was, and I am, very lucky.
Where I am now
My epilepsy is still very much a part of my life and is part of my identity but I don’t really feel at any disadvantage. I am constantly aware of how fortunate I am to have my seizures controlled, this is only true for just over half of people with epilepsy, so I understand my experience is not the same for everyone and I am reminded by this as I continue to talk to Young Epilepsy supporters each day.
I have now just turned 41 years old, I’ve done a few things in my time, enjoyed it all, but I haven’t done anything as meaningful as what I do now. I cannot tell you how amazing it is for me to have had this opportunity (three and a half years so far) to meet and talk to so many people that ‘get me’ and I ‘get them’. Epilepsy is one of those weird things that although lovely, kind and supportive people want to understand and appreciate what it is like for you as an individual/parent or as a family; unless they have experienced the seizures, the fears about the future, education, friends, career, medication etc. - they don't know what it is like. It’s like being part of a weird club, a club that you never chose to be in… in this club you don’t get a badge, club book and stickers you get medication, stigma and worry.
It is my ongoing privilege to speak to motivated people that don’t want to be a passive observer of their experience but rather want to be active in improving the lives of others who are, or will have a similar struggle in the future. I am passionate about what I do and love, love, love the supporters I work with. They inspire me daily.
So in conclusion, life is hard, it is full of surprises, some good and some bad. It is my belief that the important thing is how we choose to respond to the challenges that we face. One thing I am reminded of again and again is how lucky and privileged I am. Regardless of what happens I have family and friends that love and care for me. I am particularly blessed with my wife who has supported me (and my epilepsy) for over 20 years and brought three little Gaydons into the mix. With this love and support nothing can touch me. Our blessings always outweigh our troubles, sometimes we just need to remind ourselves of that.
I will be jumping out of a plane on 26 March for International Purple Day, why not join me!