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 of a hospital but I have others aimed at schoolchildren.

Climbing up the tree of life

I am not going to go into the medical side of epilepsy, I wouldn’t be so bold. Your knowledge on the subject, the various types of seizure and how to deal with the situation.is far greater than mine. So, you may be saying to yourselves, what on earth is she here for? I know something that you may find interesting . . . how to live with epilepsy! After all, 43 years is a long time and lots of things can happen in that space of time. So let’s start right at the beginning.

I can remember very little about the early years. I was not diagnosed until I was about two. In those days absences were the problem. Some people misunderstood them and either thought I was slow, or just rude for not replying to questions when absences took place. Finally epilepsy was diagnosed, and some medicine had to be taken. I remember being on phenobarbitone.

As I got a little older I realised I had to make allowances. I was never permitted to ride my tricycle on the road. Swimming always had to be done with a lifeguard on hand. The bathroom door was always left ajar – just in case.

My schooldays were wonderful. It was amazing to see the attitude of children. They were totally unafraid, it made no difference to them. It was the adults who were always watching, listening and slightly fearful of the situation. I played in all the school teams. Just occasionally I would black out and allow the ball to pass through the net at netball, and got angry with myself for letting the side down. My friends would just wink, pleased that I was OK.

I didn’t have any Tonic Clonic seizures till I was in my early teens. I remember there was no pain, and I thought I had just gone to sleep for a little while. I do remember my mum saying: "It's all right, dear, there’s nothing to be worried about."

As time progressed into my older teens, I went to discos with flashing lights. Despite the fact that less than 5% of people suffer from photosensitive epilepsy, my mother insisted I wear big black sunglasses! How stupid I felt in the middle of the disco! But, even then, the young people I was with did not laugh or poke fun. I have never forgotten that.

Job hunting was difficult. As soon as I explained I had epilepsy, the employer would look over his glasses. However, I managed to sell myself. I have applied for four jobs in my life – and I got all four just by explaining the things I could do, rather than the things I couldn’t. Employers watched me carefully, making sure I didn’t take too much time off work. I had to be careful.

By this time my seizures had stepped up. Bigger seizures came more frequently. My job was as a telephonist, and I remember on more than one occasion apologising for the bad line, and could they please repeat what they had said! For some reason the tablets didn’t control my epilepsy.They still don't!

The next big stage of my life was marriage, the happiest moment of my life. It was only natural that children were to be on the agenda. Should we or shouldn’t we? What if? The decision was ours. How we wanted children, but would it be fair to put them through the possibility that they might have epilepsy. Family members suggested we should adopt, and said how unfair and selfish it was of us to want children of our own. Finally, we sought medical advice. Yes, there was a possibility any children may have epilepsy, but then again they may not. That was all we needed to know.

The pregnancy months were difficult. I was off all medication, and seizures were occurring frequently. I was averaging about 30 absences a day. It seemed unsafe for me to leave the house, and when I did, I had to have someone beside me just in case. Stairs were a problem, so I used to walk upstairs sideways, then slide downstairs step by step on my bottom, to protect my unborn child. Local children, about 8 to 10 years old, would help me with the housework, being in the house when I bathed, and doing shopping for me. They were marvellous!

When the baby was born, I used to push the baby round the house in a buggy. This was the only safe way to travel. To carry a baby was just foolish. When I fed my baby, once again he was in the buggy. Remaining safe had to be the code of life.

Everyday chores had to be taken into account. I wanted to manage. All the saucepan handles on the stove had to be turned inwards just in case, so if I did have a fall I wouldn’t take boiling water with me. I had to remember not to perch on the edge of a chair, but to sit back. It was just a question of remembering to do all of these things.

I remember the day when my doctor, beaming from one side of his face to the other, said: "your son does not have epilepsy". Tears poured down my face. That was a precious moment.

It’s strange how attitudes have altered over the years. Many years ago, someone with epilepsy would be burnt at the stake for being a witch. It obviously doesn’t happen now, but fear and ignorance still persist in some cases. Generally speaking, people do try and help, but often they don’t know how to and this causes panic. I can remember a couple of occasions where ignorance showed to be the order of the day. Let me explain. On one occasion we pulled into a disabled parking space, I displayed my orange [disabled] badge, then an elderly couple approached me and asked me if the badge was mine or whether I had borrowed it from a sick relative. I told them I was disabled, to which the lady said:"Disabled! You don’t look disabled, just look at you." I continued to explain I had epilepsy, and she relied: "Huh! This spot is for people like us with real disabilities." I just didn’t know what to say!

On another occasion, I collapsed and caught my head on the pavement causing it to really bleed. A man approached with a dog and he let it lick my head and face. When my husband said something to him he just said: "Oh, its all right. My dog wont bite her"! Attitudes, like the seizures, vary deeply.

I have had some terrible seizures, but then again I have had some when no harm was done. Let me give you some examples. Once, I fell through a plate glass door and had shards of glass in my head and hair. Again it was children who came to my aid. My 6-year-old and 4-year-old sons got help without panicking. On another occasion I rammed a television table through my face. Fortunately, these sorts of seizure are not everyday occurrences.

As time progressed, my seizures did settle down until I was having about six big ones a month and about 20 absences a day. Life outside the house became possible - difficult but possible. I never use a bus because if I had a seizure it would cause chaos, so I take a taxi instead. I make sure I walk on the inner side of pavements, stand well back at train stations and double check when I cross the road. Escalators can be a problem, but not if you stand sideways holding on to the rail, so if you do fall you won’t fall flat on to the stairs. If someone is with me, I get him or her to stand in front of me when I go downstairs and behind me when I go up. There is no reason for any epilepsy sufferer to feel useless. They can enjoy life and make the most of living on this planet by doing things they want to.