Julie Dennison - Living with Epilepsy

Here is one of the many talks I have given on my personal experiences with epilepsy. This was to the staff at the Epilepsy Centre of the National Society for Epilepsy:

Epilepsy and Pregnancy

So you want children! What a wonderful way to seal a relationship. The final accolade to your partner, and above all to give life to another human being. Is it always possible to do this? Not in all cases. There are many illnesses where pregnancy is thought to be too dangerous and very unwise. So what about epilepsy?

It is possible to give birth? And do you pass on the gene that says: "you will have epilepsy and have the same problems as your parents"? Perhaps, perhaps not. No-one can be sure. Epilepsy is not always hereditary. Just in some cases. I was lucky.

Despite family members trying to get me to adopt children, I went ahead and had chidren of my own. As there was no history of epilepsy in my family - I was just unlucky to be born with it - the doctors seemed to think that all would be well. So we went ahead.

All medication had to be stopped on the doctor's advice. I put on a lot of weight. I went up to over 22 stone and was able to do very little because seizures were occurring frequently. I remember well one occasion. I had been taken into hospital, and as usual they weigh you on a daily basis. I was so enormous that when I got on the scales it was found that they did not go up far enough so they brought scales from the kitchen especially to weigh me. I didn’t know whether to laugh, or cry with humiliation. I laughed, as did everyone else once they saw me laugh. I remember thinking to myself what a wonderful feeling joy was - far better than feeling small, if you’ll pardon the pun!

I remember sitting down a lot. The seizures were occurring so frequently that everything became difficult. I was lucky, though, as friends and local children were a great help. The local shop was only just down the road, a mere few minutes away, but that walk became a major trip. People would walk with one on either side of me. My pride made me go. I was not going to be beaten. The walk was hard. My weight didn't help and I remember puffing and panting just to get to a shop 50 yards away.

I had a lot of time to spare and I liked to please the local children who looked after me. So I made cakes, special cakes, and this was my way of saying thank you for all the help and encouragement they gave me. The encouragement was very important. They would keep telling me I could win through and that all would be well, despite falls and nasty seizures. They were so understanding. It really is amazing to see how young people cope with difficult situations.

So let’s get to the practical side of things. Cooking, for instance. Those lovely cakes were always cooked with someone else in the house. Before cooking, I prepared most of the food in the dining room, rather than the kitchen. If I did have a fall, It would be onto a carpet rather than a concrete floor. This would be safer for me as well as my unborn child.

Getting upstairs? Well, I would walk upstairs sideways and slide downstairs, step by step, on my bottom. This was the safest way to travel.

The side door of the house was always left open in the summer. This was so that my neighbours could hear the noise I would make when a seizure took place. It was very very loud.

I was even having seizures in my sleep. There seemed to be no escape. Most of my life was lived indoors whilst I was pregnant. I would try hard not to let my seizures frighten my assistants, after all they where only young children. But to me they were a life support system. They never seemed afraid, and were always willing to help.

The next stage was the birth. Once again it was hard work. They put me on gas and air so I was as 'drunk' as a lord, swearing at the nurses, screaming, shouting. I remember my husband being there, and he got a lot of foul language. Then an eight pound, twelve ounce baby boy was born, measuring twenty-three and a half inches long. He was beautiful, and within less than a few months he had been declared free of epilepsy. I felt triumphant. All that stuff I had been told about my children being less than perfect was just sheer and utter rubbish. My baby was fine: No illness, no disease no nothing.

The children couldn’t wait for me to bring my newborn home; this was the part they had waited for. At this point the hard work started. The rules, regulations and just simple common sense had to apply. I had a life in my hands - nothing to be sniggered at. So how did I cope? Let me explain. When the babies (we had another boy 18 months later) were small, night feeds were always done by my husband. He knew that to get through the day safely I had to have rest, so he had a day job then had to come home to a not very restful night! One thing about a relationship is that it’s a partnership

The days were obviously going to be made more difficult. It didn’t help that my youngest child was hyperactive. Consequently, in the early days he was always crying. I well remember pushing him in a buggy, over and over a bump which separated my kitchen from my dining room, trying very hard to rock him to sleep.

I had to maintain a standard of cleanliness in the house for my own peace of mind. Although I had a home help who understood the problems, I was determined to do the housework with her just because I was so proud.

We had an electric bottle warmer for safety reasons, so I didn’t have to go near a gas stove. I had been burnt before, and I can tell you it hurts. I had to cook in the oven so we saved and bought a microwave. Once again I wouldn’t have to go near an open stove so all the baby feeds could be heated up in the microwave. If I did use a gas stove, I turned all the saucepan handles inwards, so that if I did have a fall I wouldn’t take boiling water with me. It seemed the only way.

Feeding time was difficult. It was too dangerous to put my baby in my arms and feed him. I had no warning of my seizures so anything could happen. So I used to feed my son in his buggy. I would make sure he was well strapped in, then kneel beside the buggy and lean backwards with my arm outstretched as far as possible. If I did have a fall I would fall backwards, and not on my young child. Doing this was not always easy because after my baby was born, my weight went even higher. This was thought to be a side effect of Epilim, an anti-epileptic drug known for weight gain. Kneeling down with legs like tree stumps was not easy.

Moving around generally was hard. I could not carry my babies from room to room. They had to be pushed in a buggy when they were small. It was the only way, but trying to get around tight corners was not always easy. I suppose I was lucky as the local children still took a great deal of interest and still wanted to help.

Bathing my baby could only be done with someone else in the house. Again, this was often one or more of the local children. They used to let me help, so I felt I was a proper mother. I took part in the little things, and that meant so much to me. Changing my baby was very similar to feeding; kneeling down on the floor beside my baby, and if possible leaning away from him. It wasn’t always easy, but then raising two children is never really a picnic. It is, and always will be, hard work!

As the babies got older they wanted to crawl. But I couldn’t let them crawl freely, not the way I was. So I used to put them in a playpen with their favourite toys. They had to stay safe. My absences where occurring at a rate of about 20 to 30 every day. They didn’t last long, but each was long enough to cause a tragedy. So the children stayed in the playpen until someone else was in the house. Then I would sit down and they could play outside for a while.

I regret I could never take my boys to playschool or primary school. The school was down a hill and near a main road. Once again, this was too dangerous, so someone would take them for me and I would watch from the window. Every detail of our lives had to be discussed and thought out very carefully.

The children were told at a very young age about their Mum’s problems. They had to be, so they would be prepared. I think we told them in simple terms that Mum would fall down from time to time, or she would blank out and may not hear what they were saying. It was difficult to explain to them without putting them in a panic, but the best way is simple honesty. Children accept things far easier than many people think.

From a very early age, they were able to get help. They were too small to do first aid, but by getting help they were on the right track. They saw some terrible sights. Once I burnt myself with an iron. I have had many falls on concrete floors resulting in broken and cracked ribs, cuts, bruising and sprains. The piece de resistance was when I fell through a plate glass door whilst trying to feed the boys' pet rabbit. I was a mess but young as they were, just six and four, they got help. Believe it or not, they did not panic.

My children, who are now 16 and 18 respectively, still care and each is there like a coiled spring every time I make an involuntary movement. They tell their friends, and none of them seem to worry. They take me for what I am and, like myself, they raise a smile when a blackout occurs. It is the only way to cope.

I wrote a poem which reflects my feelings towards my eldest son, Paul, when he was six months old. During this time, he had had no seizures and things looked hopeful. It’s called The First Year:

What thoughts lie behind those big blue eyes,
Are you a demon, a saint, or just a baby in disguise?
Your world is full of wonder and delight
To you, the simple things of life are a wonderful sight.
Everything is so new, There’s so much to do –
Look at colours and touch everything around
Pull the dogs tail and hear it make that crying sound
Toys to cuddle, toys that makes a noise,
Dolls for the girls and helicopters for the boys.
The tears, the crying, which mean so much,
The loving feel of a mother's touch
All this is important in the early years
The laughter, the dreams, the hope – and the fears

Finally I would like to say thank you to you all. Thank you for your help, the care and the attention you have all shown me at 'the Chalfont' over the years. Using the words of Tina Turner in her song, you are "simply the best".

Want more? My book, Weathering the Storms - living with epilepsy, has a chapter on how I dealt with pregnancy and motherhood.