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My Journey with Epilepsy

by Jane Shortall(more info)

listed in medical conditions, originally published in issue 126 - August 2006

Lucky or positive? Both, I think. I live in a dream landscape in one of the wildest and little known parts of southern France, the Ariege Pyrenees. It is a place of stunning scenery, calm and tranquil, where, in a day's drive, you will not meet too many other cars. A place where one can live very close to nature. But, French transport being what it is, it is possible to leave this, the smallest and least populated area of this enormous country, and arrive seven hours later in Paris. Who could ask for more?

It's a long way from where I started. My hopes and dreams appearing to be dashed by a diagnosis in my very early teens; nevertheless I am, well over 30 years later, writing this while living an idyllic life in a typical French hamlet in the hills. My view looks out over the Couserans, to the mighty snow-covered Pyrenees. I have just seen a bird of prey slowly circling, watching the ground for anything that moves. I always wanted to have adventures, and here I am embarking on yet another. Age means nothing to me. I can't take it seriously; it's just another number.

My journey to this stage of life has been an interesting one. Sometimes hilarious, other times a bit frightening; it took a bit of courage now and then, and also a pinch of something else. A kind of inner strength, of positive thinking perhaps? Those exact words would not necessarily have been used at the time, but I can see now that some of the people who surrounded me in my childhood had enormous inner strength. My family appears to have produced some incredibly strong women, people who understood that having sought and taken help from the professionals, it is, in the end, you who must take responsibility for yourself. Dance to your own tune, as it were.

When it all Began

I was born in Ireland and lived in Dublin most of my life. In the 1960s, there was a programme on television called The Monkees; it featured four little chaps playing in a band. Their half-hour show was one of the highlights of my week. Then, one Saturday, as the programme started and the strobe light effect began, I felt a strange sensation in my head. I woke up to hear my father saying "it's all right, you're fine."

A period of enormous change, a total shake up of my life followed. After endless tests, epilepsy was diagnosed and various drugs were tried in order to get the treatment right. This was a hideous time, as the seizures continued and I became exhausted. Naturally, schoolwork fell behind.

At one of my appointments with the doctor, a wonderful man, Professor Mulcahy, he and my mother were talking about my future. It didn't sound very bright and seemed to contain the word 'out' a lot. Among the things that would be out for me were driving a car, riding a horse, even having a bicycle. What if she had a fit while riding it on a road? Then, and although it wasn't part of our lives at that time in the late 60s, flying would probably be out too.

What on earth was in? This sounded like a very bleak life indeed. Tired though I was, the thought of all this sad and very gloomy life ahead frightened me almost more than all the tests and medication trials. Surely they couldn't possibly be right?

All the books I had read, from fairytales as a very young child, to the usual 13 year-old favourites, ballet and pony stories, were simply full of people who had overcome things. I had always understood that this was the whole point of an exciting life, overcoming things and having adventures. The same applied to animals; look at Black Beauty.

Then, a tiny light appeared at the end of the tunnel; a particular medication began to work. At last, something suited me and life went on. School, tennis and small dances, the usual young teenage stuff continued, but school bored me now. I wasn't interested anymore. Something had happened and I decided I would leave as soon as it was allowed, and have adventures. Perhaps it was all the tests and the exhaustion that followed, and I was aware of having missed such a lot, but something said to me that this was my one and only life. I really wanted to just get on with it. Big thoughts indeed for a skinny little girl! I worked out all these lofty ideas while trying not to be frightened of having another attack. After all, these tablets were just the first that suited me. I was still being monitored and hated the whole process.

Two great things about my parents were that my father thought everything in life was improved by an appreciation of the arts. My mother had a tremendous interest in good movies and the stars in them, also in people who had achieved something in life in spite of adversity. Our house was full of books. I loved reading and painting. The appreciation of grand Opera, apart from Carmen, came very much later.

I read biographies of so many people, old masters, movie stars, historical figures and even saints, and discovered that so many of them, despite the most appalling setbacks in life, had gone on to do great things. Many became inspirations to others. Some have remained so, hundreds of years later. To my amazement I found that some of these people had something in common with me. They had suffered from Epilepsy. I was now in distinguished company indeed. Alexander the Great. Napoleon. The writers, far too many to name. Geniuses! It seemed to me I hadn't a problem in the world.

How different my life could have been. It occurred to me that had I been born in a different era I might well have been locked away in that room like Mr Rochester's wife?

Whatever my parents and family discussed privately, everyone treated the situation calmly and I never ever felt like a freak. Apart from some vague discussion that I might make a good teacher, no real pressure was put on me to continue school. I left at just 16 and got a job immediately. This wasn't amazing back then. I mentioned health to just one person in case there should be a crisis, but nothing happened. My big adventure had begun.

Start of My Adventure

I signed up for a three-year evening art course, which became the most fantastic journey into a subject I loved. I was introduced to Professor Gombrich, and his stunning History of Art instantly became and remains my Desert Island book.

A terrific cousin encouraged me to join her as a Cub Scout leader and for a few years I did, and even learned some outdoor skills. Alas, I much prefer luxury hotels, so my scouting years were brief. A dream world opened up when in the west of Ireland I learnt to ride with a family who bred the famous Connemara ponies.

There were London weekends, once ending up in the Middlesex hospital after fainting coming out of a lift, my balance being affected occasionally. I went up and down in the tiny lift of a building where a friend lived, just opposite the Ritz, until I overcame it.

Strobe lighting in discos was solved by simply running off the dance floor when it started. This led to some interesting chats later, with fellows who were left dancing by themselves.

With great good fortune, I got a job as a courier with students, travelling England, Scotland and northern Europe. For me it was perfect heaven. I saw the original manuscript of Jane Eyre in the room where Charlotte Bronte wrote it. Became a regular visitor to Waverley castle, Holyrood Palace and the Tower of London. I often felt that the older students enjoyed the Dirty Duck pub in Stratford more than the obligatory play, our reason for being there.

I found myself at home in the galleries and museums of Paris and Amsterdam and felt like I knew Rembrandt well. Years later I gazed in awe at his self-portrait in the Frick gallery in New York City, having flown across the Atlantic and thoroughly enjoyed the experience.

Aged about 20, the driving issue had been resolved after more tests and the signatures of two doctors. Specialists, they confirmed I now had a very minor condition. It seemed to have lessened. With my vivid imagination, I like to think it was because my spirit wouldn't let it ruin the adventure. Of course I know there were wonderful people there for me, my parents with their positive attitude and the medical doctors with their expertise and knowledge, plus the drugs available.

But a little voice somewhere within still whispers that the help of drugs notwithstanding, I was never going to accept a limited life. A life less lived.


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About Jane Shortall

Jane Shortall was born in Kilkenny, Ireland, and now lives in a tiny hamlet in a remote part of southern France, close to the Pyrenees. She has had various careers, including the Aerospace business, a sporting federation, and best loved of all, conducting Educational Tours around Europe. Her interests include writing, reading, nature, music, the superb artworks of the creative people who live in her area and, of course, food and wine. She may be contacted via

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