Epilepsy is Part of Who I am

Mother of two, Fionnuala Marston from Co. Donegal was recently crowned Woman's Way/John West Mum of the Year.

Fionnuala, who was chosen from over 1,000 entrants, has had epilepsy since she was in her late teens. Woman's Way editor Aine Toner said the fact Fionnuala would not let her circumstances dictate the rest of her life was an inspiration. "She is full of real get-up-and-go and we're honoured to award her our Mum of the Year title for 2011".

As Ireland's "number one mum", Fionnuala recently appeared on Saturday Night with Miriam where she discussed her epilepsy in detail. We're delighted that Fionnuala has agreed to share her story with readers of Epilepsy News and we hope you find Fionnuala's story a source of inspiration too.

When you're 18 you think the world is your oyster and I was no different. I had left school at 14 and started work in a factory on my 15th birthday as many girls did at that time. I was a typical independent-minded teenager. My great love at that age was soccer, which I played about four times a week. I moved out of home at 18 to share a flat with a friend and enjoyed socialising, discos and all the normal stuff.

My first memorable experience of epilepsy was when I came around on the dance floor at a disco after having a seizure. Everyone was staring at me. A week later the bouncers carried me out of the same disco after a repeat performance.

Pretty soon I was being known as that girl who gets carried out before the end of the night because she drank too much. I knew something else was happening because on many occasions I hadn't touched a drink. I tried covering it up for a long time, not telling anyone when I came around on the floor of the flat at 2am. I was afraid to go to a doctor, having just gained my independence; I didn't want to have to be reliant on others and was afraid I wouldn't be allowed to play football anymore.

Eventually I got the courage to visit the doctor, who referred me to Beaumont for an EEG. The results confirmed I had epilepsy. I started having frequent tonic-clonic seizures, which doctors believed to be as a result of too many bangs to my head. I had been knocked unconscious on a few occasions, in a car crash and while playing football.

I started on a course of anti-convulsive medication. It took many months of experimentation to find a level that lessened the number of seizures. I was always very tired after a seizure and needed to sleep before I could function again. I was very lucky in that I was able to keep my job even though my boss had to drive me home because of a seizure on many occasions. She was always very supportive and understanding.

I didn't really know anything about epilepsy and neither did many of the people around me, as I often discovered when I came around to find well-meaning people pinning my limbs to the floor and putting any number of strange objects in my mouth to prevent me swallowing my tongue. But at least these people tried to help; others would vanish the moment the seizure developed as if they might be "infected" if they got too close.

This was a very dark, depressing time, and each time I opened my eyes after a seizure
when the fog cleared it felt like a physical slap, the realisation that I was back to counting hours again. I always knew how many days, weeks... from the previous seizure and usually convinced myself that was the last. Maybe I'm clear now. Always waiting for it to go away as quick as it developed.

Then I met my now husband, Keith. He never ran away when I collapsed at his feet, never had that horrified look on his face when my eyes opened, or the feigned words of understanding. He was always there holding my hand saying "it's over now, you're
ok, I'm here, just sleep". He was always there to pick me up when I was depressed and on many occasions to physically pick me up and bring me to safety.

We got married and had a baby son, Nathan. Although my seizures were pretty frequent at that time, as my medication was reduced when I was pregnant, the pregnancy and birth went smoothly and he was perfect in every way. My husband gave up his job to be there because I couldn't be on my own with Nathan in case I had a seizure and hurt him or myself.

That was difficult and there was feeling of inadequacy attached so soon after he was born I went back to work. Two years later I had a baby daughter, Gemma and again everything went smoothly. This time I didn't return to work. Factories we closing all around and I had no qualifications or training to do anything else.

At this stage I could count in months between seizures but I always felt hard done by - the "why me" element - instead of being grateful that the medication was helping. I resented the fact every time I took a pill, always out to beat it, to get past epilepsy, to be cleared. When my children were four and two, I got a 6 month FAS placement in the local primary school as a classroom assistant. It was a chance to get some work experience. I really loved this and work and when my son started school there it was great that I could bring him with me in the morning and home in the evening. I was delighted when the scheme was extended for another year. The staff at the school were very supportive and keen to know what to do in the event of a seizure. They were always prepared and dealt with me calmly. Fortunately it wasn't a very common occurrence, everyone became very tuned into the signs before it would happen, the eyes drooping or slow speech. I was always somewhere safe before the seizure struck.

I also experience absence seizures although I didn't realise what they were for a long time. Sometimes someone would be standing next to me, the next second they were at the other side to the room. They can last form 20 seconds to 2 minutes and proved very daunting at first. People around me often didn't realise they have happened at all.

When a permanent position for secretary became available in the school, I was in the right place and the right time and got the job. Doing something you love and are good at is a great confidence boost. Taking my kids with me and getting the privilege of being close at hand through their early education was an added bonus.

When my daughter started school, my husband went back and completed his college education. Watching him started me thinking maybe I could do it too so when he graduated, I started a two year part-time course going to college 3 nights a week after work.

My seizures became less frequent and at one stage I went 3 years clear. I was elated, convinced I was cured and I started looking into getting driving lessons. The next seizure was devastating but it as also a bit of a turning point in my attitude. I realised I would never be cured. It was time to stop counting the time, fighting the facts and accept I had epilepsy. The realisation was a great relief but it took many years to come. With it came the confidence that there are many things you CAN do with epilepsy. I had spent years resenting the things I couldn't do. Instead of getting driving lessons, I got a bicycle.

When my course finished, I went on to do a degree in Business & Accounting as well as working full-time. It was an exhausting and challenging time. Because of the absences, I got permission from the college to use a Dictaphone during lectures. Now I could listen to it back later and write up my notes. I also got some extra time in exams and that helped me too. After three years I graduated with a 2:1.

My family were and continue to be a tower of strength, always encouraging, always there when I needed a boost. At home my absences became lovingly known as "mammy moments". No one flinches when they happen and life just carries on.

A few years ago I began coaching the boys soccer team at school, something I have found really rewarding, especially as it was such a big part of my own youth. This year I took part in a "Strictly Come Dancing" night to raise funds for the school. Dancing in front of 700 people is something I would never have believed I could do a few years ago. I joined Slimming World and lost six stone in eight months. I recently became a grandmother to baby Adam, Nathan's son. He is the most adorable child and I'm thankful for him everyday.

My children are now 19 and 17 and I'm very proud of the people they have become. I must have done something right! Earlier this year my mother in law, Kath, entered me in the Woman's Way magazine "Mother of the Year" competition and to my utter amazement I won. It has been a very surreal and humbling experience, as well as rewarding and confidence building. There may be many things in life we cannot do because of epilepsy, but here are many more we can do despite it.

When I was a toddler I cut my neck on a wire fence. It couldn't be stitched so I developed a nasty scar. I had surgery when if was 15 to remove the scar. I remember looking in the mirror at the bandage and thinking, "I won't be ME anymore when that scars gone". The surgery wasn't a success and I got a new scar instead which is still there. It's part of me. I realise now that my epilepsy is the same as the scar, I wouldn't be ME without it. I wouldn't be the person I am now if it had never developed. I may never have pushed myself to prove anything, may never have achieved the things I have so far. I learned to stop trying to fight facts, to stop waiting for a cure. Epilepsy is part of who I am and it never holds me back!