James developed epilepsy at the age of 16 and has now written a book to help others

I first developed a mild form of epilepsy aged 16 whilst at school. Like the vast majority of the school population, I had no idea what the word signified and what the condition was. I’d not encountered anyone with the condition before and my schooling background had never passed on any education; blissful ignorance then! I ignored it for some time, thinking it might have been due to an increase in A-level studies and an active lifestyle. These strange, indescribable feelings weren’t occurring every day, so I just brushed it off. I arrived home from school one day and casually mentioned it to my mum who immediately diagnosed the condition. She’s not in the medical profession but has an astute knowledge of all things medical! An appointment with my GP was made and I further embarked on a lifetime of scans, tests and consultant meetings.

Now at 40-years old, I am able to reflect on the impact the condition has had on my life and on the lives of those around me: family, friends and the general public who witness my complex-partial seizures. They are not particularly disabling, but the condition has influenced many aspects of what we might consider to be normality, particularly my career and personal relationships. My seizures tend to confuse others who are not close to me and although I do not suffer from generalised seizures (those which mirror the common perception of epileptic seizures) they can still cause a commotion. I shout, usually swear words and spit. It is the latter which I truly hate and which can be a real hindrance. On rare occasions, I have spat on people, and if that person is unaware of what is going on (as is the norm), I am understandably met with some hostility. Thankfully the floor is usually the victim!

All of my investigations, scans and tests have shown my brain to be normal and herein lies the problem. We are aware that it is based in the right temporal lobe due to the seizure diagnosis and patterns, but where exactly it is cannot be pinpointed. I was offered surgery in more recent years but chances of success were relatively low and the danger of infection, relatively high. I decided against it. The main reason for this, is that my personality has not been altered by the condition. I have a resilient character and an optimistic outlook and this is important to me. Surgery could have changed all of that. Sure, I would love to have the condition quashed, but at the moment I can still play sport, cook dinner, go on holiday and generally have an enjoyable life. Perhaps I am lucky to have great people around me to help if needed, but not allowing the condition to control everything I do is something I regard as vital and I would encourage others to do the same if they are able to.

I may well be on medication for the rest of my life – currently Keppra, Lamotrigine and Lacosamide – and the deterioration of my memory is worrying but I don’t give up on anything, even the obstacles faced when applying for a job due to others’ ignorance of the condition, for example. As my wonderful neurologist has mentioned to me, the advances in technology and research are in constant development; in 5-years’ time, I may be able to have my complex-partial seizures eliminated. Who knows? Until then, I will continue to live as best I can, remember to sleep and stay away from stress, the main instigators for my seizures, and enjoy the lighter side of life. It is possible, I can assure you, and I have written about this in my debut book for which I have recently secured a publishing deal. I am absolutely delighted to announce that the reviews have been positive and I hope that the content of the book will help others with epilepsy. ‘Small Malcolm’ offers a break from the usual medical facts and figures and instead, focuses on ridiculous situations when a seizure occurs and my personal annotations on the condition and its impact on my life.

 

June 2018