Julie Dennison - Living with Epilepsy

Living with Epilepsy is a personal guide
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My Story

For my entire life, I have had epilepsy. I have three types of seizure: Absences which last just a few seconds; complex partial which last for a couple of minutes, and tonic clonic during which I can be unconscious for up to an hour. Despite having been on every medication available, my condition is still largely uncontrolled. Nevertheless, I have had a full and varied life.

Childhood with epilepsy was not too bad for me. School exams were difficult, though, as I was sat in a separate room for fear of frightening the other pupils. I found friends a wonderful comfort.

I held down a variety of jobs, four in fact, all of which I enjoyed. These were as a Nursing Auxilliary, an Insurance Clerk, a Nanny in Spain and a Telephonist/Receptionist. I can say that every job I applied for I got. This has a lot to do with attitude and state of mind. I made it a rule that when I went into an interview I would promote myself. There isn't any "I can't", but "I can and will". I explained the things I could do, even though I was shaking in my shoes whilst doing so.

I was able to hold down the nursing job as my seizures in those days were only absences, with perhaps a tonic-clonic once or twice a year, so it wasn't too bad. But by the time I reached seventeen, the bigger seizures had become more prominent and I had to give up nursing. This was a great disappointment to me. When I was a telephonist, absence seizures were merely a nuisance. I used to say after a blackout: "this is an extremely bad line, could you please repeat what you've been saying". It would work every time.

I never thought I would be capable of having a family as I have several seizures every day. However, with the advice of my doctors, I was able to have two sons, neither of whom has epilepsy. My joy was second to none. As it was not safe for me to carry them, I had to push the boys around the house in a buggy when they were small. Feeding with a bottle was also done in a buggy. I have always found that children and young people are rarely afraid of epilepsy. When I was pregnant a young girl, no more than eight years old, knocked on my door. She looked at me with big wide eyes and said: "my mum says you have 'eperpepsy', and you might fall down a lot. Can I help?" Well, what could I say? This child became a friend to me, and she brought others along. These children, aged between 8 and 13 all helped me when I was pregnant and when my children were small. These are just some of the memories I can look back on a raise a smile. My sons are now in their twenties and are still healthy.

I am particularly pleased to have achieved three life-long ambitions. The first was a helicopter ride all over London. I thought that with the excitement I would start having seizures of some sorts - but I didn't. It was noisy and a little scary, but a moment I shall never forget as long as I live. The second was a hot air-balloon ride over Hertfordshire. In complete contrast to the helicopter trip it was quiet. Apart from the odd burst of flame into the balloon, I could have heard a pin drop. My third ambition was to fly to Egypt to visit the Pyramids. I have wanted to do this since I was five. My husband and I went with Saga, and we told the company all about my epilepsy from the start. The trip was fantastic. I had not realised that the Pyramids were so big. Most of the time I just had smaller seizures, so we were quite pleased.The Saga rep watched out for me, without being a nuisance.One evening, whilst on a Nile cruiser, I got up on the dance floor to do some belly dancing. After about 20 minutes, we went back to our cabin and a major seizure occurred. Fortunately, I fell onto the bed and was not hurt, but the outcome could have been far worse. After a couple of days my health had much improved and I was able to enjoy the rest of the holiday. These experiences demonstrate that, with a little care, people with epilepsy can do things the same as anyone else.

I decided about eight years ago to devote my life to writing and giving talks on the subject of epilepsy. My confidence was at an all time low, I needed something to boost it. Several people suggested that I should talk to schools about my experience of living with epilepsy. The first talk was scary as I thought that no-one would be interested in what I had to say, but it went down very well. I gradually built up the confidence to talk to other schools and colleges. To capture the children's attention, I would often dress as a witch. Why? Because I would tell them that many years ago people with epilepsy were burnt at the stake for being witches. Taking off the witch costume I show them that I am just like anyone else underneath. Eventually I was able to give talks to hospitals, women's groups and even the police. Gradually my confidence level started to climb so I started talking about epilepsy on local radio and did a short TV programme.

The talks led to my doctor suggesting I wrote a book about my experiences. I was horrified. I never thought I would be able to do it. Then one day I started it, and three years later my book 'Weathering the Storms - living with epilepsy' was published. It is now a year later, and sales have exceeded all my expectations which has boosted my confidence. I realised I had done something worthwhile and helpful to other people. I had explained the story of nearly 50 years of uncontrolled epilepsy, and how I had managed my condition to an extent that made it possible to live in the real world and enjoy life.

Tricycle View from the helicopter
From a protected childhood (I was not allowed a two-wheeler), to a more adventurous adulthood (in a helicopter)

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Emdee Publishing