Personal Stories

My Epilepsy and My Education

13 August 2012
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"Is it contagious?"

This reaction from a fellow maths student at school is by far the best that I have received when telling anyone that I have epilepsy. I was genuinely amused and was able to talk light-heartedly with the guy, explaining to him that as far as we know, epilepsy is not contagious and therefore it cannot be passed on to fellow schoolmates.

One thing epilepsy may have an impact on, however, is a young person's ability to get the most out of education. For some it is not a problem, but for others, frequent absence from school or college due to being in hospital; stress, bullying or low self-esteem; a loss in short or long term memory; side effects from medication being taken; these are all challenges that some students may have to face. However, with the right support and actions, these difficulties may be overcome.

When I was 15, I was diagnosed with partial onset epilepsy after experiencing a full tonic-clonic (grand-mal) seizure on holiday with my family. I was prescribed my first anti-epilepsy drug (AED). From then on I had no tonic-clonic attacks but I still regularly experienced partial seizures, about one every fortnight. I would stay standing or sitting, but would lose awareness and stare into space quietly for a couple of minutes before recovering - a very slow process which usually included sleeping for a few minutes.

I had always been a dedicated student and had prided myself on getting good grades, but at this time things began to get tough. After a year, as the dosage went up I started to struggle at school. I had difficulty in processing and remembering new material, I was often dazed in class, and my marks in tests went down significantly. I was worried, because my Leaving Certificate exams were approaching.

What was most irritating was that many people believed that my new lower marks were nothing to do with the side effects of my medication, and that maybe I had never been that good at school anyway. But my parents were amazingly supportive and insisted that I seek a different drug. Over the next few years, two other medications were tested, but neither was much better.

In the end we settled on the fourth drug we tried in conjunction with a Low Glycaemic Index Diet and stress management via EEG biofeedback. The improvement was shocking. While I still felt tired directly after having a seizure, I was no longer sluggish and dull all the time and I was able to concentrate again. My memory improved, my grades went back up and friends told me that I was much sharper and livelier.

This shows that it is important for a student not to give up hope and self-confidence. Feeling drowsy, depressed and tired are all very common side effects of medication and students shouldn't just attribute such features to themselves and their own personality.

One place where it is essential to look for support is from the educational institution in which a student is studying. As soon as I was diagnosed, my parents made a special appointment with the school's headmaster who was extremely considerate. The teachers were happy to just let me sit in class and quietly go through my seizure-and-sleep process. They understood why my results were suffering and they were willing to explain things to me a second time or when I had been out of school.

Most importantly, it was through the school that I was able to obtain a private room for my Leaving Cert exams, which meant that if I was to have a seizure during an exam I would be given extra time to sleep and recover (Note: This is called Reasonable Accommodations, see below). This was a huge weight off my shoulders, as up until that point I was sure that I would fail an exam if I had a seizure during it.

Such support was continued through third level education., I studied at the National University of Ireland Maynooth and learning from my experience at school, I overcame my slight embarrassment and made sure to contact the Disability Department and register with them at the beginning of the first year.

They couldn't have been more helpful. They lent me a digital voice recorder which I could turn on when I felt a seizure coming on in a lecture, and it would record the rest of the class so that I could listen to the recording later and catch up. When I had been in hospital or ill for a while they offered me an extension on due dates for essays, as well as a private tutor to help me catch up on misses lectures. They also allowed me time to sit and sleep in an exam when I had a seizure, as well as slight extra time in every exam. This was because a Neuropsychological test that I had taken showed that because my epilepsy was based in my left temporal lobe, I had some difficulty finding words from day-to-day.

As long as a student has professional reports from doctors or consultants as proof of their claims, educational institutions will be more than happy to help.

Lastly, when we are young with epilepsy, it can be extremely daunting trying to cope with telling other people at school or college about it. We have all been bullied at some point in our lives, and the reason that it happens is because we think we lack power. Any time I told a schoolmate about my epilepsy with confidence, making light of it, they received it in that way too. Hiding it implies that it is something of which we should be ashamed. It takes guts to start talking about it the first few times, but I found that twiddling with the identity bracelet that I wear was always a good way of bringing it to the other person's attention and bringing the topic into conversation.

We shouldn't forget that many other people have health issues too - along my way I discovered other students that secretly suffered from diabetes, cystic fibrosis, scoliosis and damaged nerves. One schoolmate even had epilepsy too, and had been too terrified to tell anyone. He was relieved to be able to talk to me about it. Also, we must be practical - our schoolmates need to be prepared so that they know what to do if we have a seizure.

I am now at the end of my full time education. Aged 21, I am thrilled to have just graduated from NUI Maynooth with a degree in Media Studies and English and I have secured a job in a media agency as a TV buyer.

I believe that with determination, as well as support and understanding from friends, family and the institutions at which we study, it is possible to tackle epilepsy and not let it take over our education.

Smiling? Now that's contagious!

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