Personal Stories

Time to lift the veil from Epilepsy

26 February 2011
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One night when I was eleven years old I woke up in the back of my parents' car as they took me to the local hospital. I had no idea why I was there as I had fallen asleep in my own bed. It was only much later that I was told what had happened. I had suffered a seizure in my sleep. Similar seizures followed sporadically over the next year, all in my sleep. After a brain scan I was diagnosed with epilepsy. My parents were told that I had two choices: to keep my epilepsy hidden or to be open about it. As they considered me old enough, my parents left the choice up to me. I chose to be open.

In my eyes, epilepsy was like having asthma or diabetes. I couldn't help having it and so there was no reason to be ashamed. The first two years or so were tough as it took time to get my medication sorted. There was little or no information from official sources and my parents and I were very much left to fend for ourselves. It was the help of my GP and the support of Brainwave that gave me the confidence to live with epilepsy and not to suffer from it. It has been that attitude that has formed my personality more than anything else. I have a fierce determination to do anything that a person without epilepsy can do.

Even so, it was tough going through those teenage years. While other people my age were being rebellious and testing their boundaries, I was constantly being sensible. I had to take my medication on time every day, get enough sleep and not get overpowered by stress. Most of the time I just got on with it and did the sensible thing but I was a quiet teen and I didn't go to many parties or crazy holidays with a huge gang of friends. I spent my time studying as I was determined to become a teacher. I had a small group of friends who are all still close friends today. They all knew that I had epilepsy and they were, and are, immensely supportive. For young people dealing with epilepsy today that is my most important piece of advice - be open with your friends. Tell them you have epilepsy and explain to them what it is and how it affects you. They will value the trust you place in them and they will look out for you.

By 1996 I was an undergraduate student at NUI Galway. From day one I loved student life. Being away from family and close friends was very tough at first as I had lost all of my support networks. I had to make new friends and share my experiences of epilepsy with them. In Galway I met others who had epilepsy. This was the first time outside of Brainwave that I had met others who were the same as me. It was then that I realised that every person experiences epilepsy in a different way.

For those with severe epilepsy it was a supreme effort to maintain a normal life. I began to see that my epilepsy was very mild and instead of feeling sorry for myself, as I occasionally did, I was grateful that my condition was so mild and well managed. I began to be a lot braver in Galway. I went to parties and nightclubs. I had boyfriends and joined college societies. My life was so full and fabulous in those four years in Galway. And they were that way because I became less nervous about my epilepsy yet I never disrespected it either. I still took my medication properly and I got plenty of sleep. I worked hard at college and I worked at weekends to pay my way through third level. At the end of four years I had my honours degree in Arts and a Higher Diploma in Education. I was a qualified teacher.

Teaching opened up a new set of challenges. Teaching is my passion. I always knew that I had a calling to be a teacher. This was the first and only time in my life that I felt tempted to hide my epilepsy. I was afraid that no one would employ me if they found out. Thankfully I ignored my fears and I have been open about my epilepsy in all the schools I have worked in. Without exception I was always treated with sensitivity and respect everywhere I worked.

This openness had a very positive side effect. Being open about epilepsy meant that whenever a student was diagnosed they were sent to me unofficially as a point of contact for advice and help. That has been hugely fulfilling for me as I can answer the questions that once plagued me and try to allay the fears that I once harboured myself. My only regret is that I had no adult in my life who lived openly with epilepsy who could have guided me in the same way.

For that reason I am determined to be there for those young people that seek my help and advice.
Since I was a teenager I was always interested in politics. I joined Fianna Fail in 1994 at the age of fourteen. I continued my interest in the party throughout my college years and renewed it again when I moved home to Nenagh in 2008. This last year or so has been a whirlwind for me. I live and work in Nenagh and now I am standing as a candidate in the local elections. Many have said that I could not have picked a worse time to run for election. However my determination has kicked in again; the determination that living with epilepsy has given me. I feel that there are so few women standing for election that it is my duty to get involved in the political process especially in these troubled economic times. I also want to show in the clearest possible way that people with epilepsy can make a contribution to society. I don't know how many Irish politicians have epilepsy. I suspect that the number is miniscule. It is time to lift the veil from epilepsy. There is no need for shame or to hide away. Do people with asthma hide? Do people with diabetes? No. So why should we?

Having epilepsy has made me a cautious and sensible person but it has also made me determined and focused. I do what I must to keep my seizures under control and then I get on with my life; a simple philosophy but one that has worked for me.
 

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