Personal Stories

A design for Life: me & my epilepsy

28 February 2011
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My name is Claire Nolan and I am 22 years old. I have been a member of Brainwave for the past three years. The charity has been a great help and support to me during this time, particularly answering all the questions I had while adjusting to and accepting my focal epilepsy.

Although not 100% under control, my epilepsy is at the best it's been since my diagnosis, so much so that I can predict when I will get an attack.

After embarking on this life-altering journey and getting this far I would like to share my story with other young people with epilepsy in the hope that it will help people understand that it is fully possible to overcome the odds and live a fantastic life.

While growing up I used to experience spells of absence and déjà vu which gradually stopped as I grew older. Being a child I didn't realise what they were and took them as being normal. The year I sat my Leaving Cert and my first year in college studying architecture I began to experience them again but now longer spells of absence combined with an intense fear.

The most frightening part was not knowing what these episodes were. To try and find out, my first port of call was to the nurse at Bolton St College who thought I was experiencing panic attacks.

My trusted GP however realised that they were more than panic attacks and referred me to a neurologist at Clane General Hospital. Based on a description of my attacks, he said that epilepsy was a likely possibility but that I would have to undergo tests to discover the specifics and rule out possibilities of other disorders.

At the time I had not suffered a tonic-clonic seizure and wasn't considered an emergency case so I took my place on a lengthy waiting list to get the tests done and continued with my college studies.

Three weeks after completing my first year in college and before I could get any tests done, I suffered two tonic-clonic seizures on the same day within four hours of each other. I was taken into Naas General Hospital where I was monitored for a week. I had an EEG and CT scan done in Naas but there were no abnormalities found and no diagnosis was made.

While in hospital, the doctors and nurses visited me to lay down some ground rules. I was told that I would have to give up my college course immediately, that I would not be able to pursue a demanding college degree or career, that I would not be able to hold down a full time job, that I would not be able to travel, to live on my own or to drive.

I was 19 years old, enjoying my independence, discovering my future and in the space of 30 minutes, I had everything I'd dreamed of snatched away from me.

My stubborn streak immediately kicked in and I said no! I would return to college! I had put everything into securing my place in the D.I.T School of Architecture and had fallen in love with it. I had no doubt in my mind that architecture was the career I wanted to pursue. I was told I was being foolish and reckless going back to college and that I would end up back in hospital before the term was out.

I justified my decision by saying I couldn't base the rest of my life on their assumptions and give up something I felt so passionately about. I couldn't subject myself to wondering "what-if" every time that I passed by a building I admired.

In Naas hospital I had experienced no further seizures, possibly because I was under little stress and was getting plenty of sleep. As soon as I was discharged however, hardly a day went by that summer that I did not experience an aura.

My neurologist referred me to Blackrock hospital where I underwent a scan after 24 hours of sleep deprivation. This test showed an abnormality and my neurologist diagnosed focal epilepsy affecting my front temporal lobe, the area which controls the body's fear levels.

This explained the intense anxiety and fear I was experiencing during attacks and absences, which were triggered predominantly by sleep deprivation. I was immediately prescribed a suitable medication, which took my body two weeks to adjust to.

I soon returned to college, which was another difficult transition. Architecture is an incredibly demanding course which entails 40-60 hour weeks. Trying to continue studying while simultaneously learning how to cope with my condition proved to be incredibly challenging. The fact that I commuted everyday from Kildare did not help. I had to adapt my working routine to be different to that of my classmates who regularly work through the night to meet deadlines. My love of architecture spurred me on.

Gradually I adapted to my new lifestyle and things became easier although in order to continue my studies I had to forsake my social life. This proved difficult, especially after a project or exam. While my friends were running out to celebrate, I was running home to get rest hoping to deter any imminent attacks.

Throughout the first three years, my medication was changed several times to try find one which best controlled my attacks. Luckily I have not suffered a tonic-clonic seizure since, just complex attacks and absences.

As college progressed, I gained more confidence in both my abilities as a person living with epilepsy and as a student. My love of architecture and design continued to flourish. I never once used epilepsy as an excuse and was determined to prove myself as equal to my classmates. Undeniably it was hard, leaving me occasionally crying with frustration, but the rewards more than compensated. Things that seemed trivial to my friends, like completing a paper, seeing my drawings in print or completing a model of my design meant so much more to me. I was proving myself right and justifying my decision to continue with college.

After completing third year, it is standard practice for architecture students to take a year out and like most of my class I opted for this. Living alone in Dublin, I was employed by an architectural firm in Dun Laoghaire where I spent nine months in this office gaining valuable first-hand experience. I worked on all aspects of several projects where my contribution was considered, valued and appreciated. I enjoyed the work, the challenges and the rewards, every day convincing me I had made the right choice.

In March 2009 I finished work and experienced the greatest reward for my perseverance - a four-month trip of a lifetime along with my friend. We visited Australia, New Zealand, Thailand, China and Japan, experiencing the real world and opening my eyes to the amazing wonders that are out there. I was living a dream which was nearly taken from me. I fed kangaroos, watched the smallest penguins in the world trek up the beach of Melbourne, climbed Sydney Harbour Bridge, road-tripped throughout New Zealand and explored the wonders of Asia. I appreciated it all so much more because I was once told I would never have that opportunity. I am now in my fourth year of the course and am more passionate about it than ever even if the hours are crazy!

I was told I would never live alone but have recently moved into an apartment in Dublin with two very good friends. I proved to myself that I could hold down a job in the middle of a recession even though architecture was one of the hardest hit professions. I was told I would never travel but have admired Paris from atop the Eiffel Tower, studied the architecture of Barcelona, watched the Sydney Opera House light up with fireworks, paraglided off the mountains in New Zealand, trekked through a jungle on the back of an elephant and snorkelled with tropical fish in Thailand. I have eaten sushi in Tokyo, partied in Beijing and cycled along the paddy-fields of rural China.

Last June, three years after my seizures, I looked back and smiled, more assured than ever that I had made the right decisions. I realised that while I was right to take into consideration what the doctors said, I was also right to follow my own path. This hit me this while stood enjoying the view from the top of the Great Wall of China!

Being diagnosed with epilepsy was the most difficult thing I have ever faced. The diagnosis undoubtedly entails many hardships, challenges to overcome and realities to face. Teenage years are a particularly difficult time to be diagnosed as it is when you are beginning to realise what you want from your life and discover who you are.

Strange as it may sound, I have found that epilepsy has made me much stronger and helped me pursue and realise my dreams. Perhaps more importantly, it has made me appreciate everything, no matter how small, ensuring that I never take anything for granted.

I just hope my story will help other young people reading this magazine to realise how much can still be conquered and achieved in spite of your epilepsy.

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