When you read this title, I’m betting you think it sounds pretty silly.
You’ll be surprised to know, however, that when one of the tourists I was taking on my Jewish walking tour the other day said these words to me, it wasn’t the first time that a ridiculous assumption was made of this condition which I’ve lived with since I was 10 years old.
The conversation took place at Café Riteve, where the British couple and I were having a coffee following the tour. As usual, I asked for a decaf Americano. The wife seemed incredulous — I could see her wondering why one would order coffee if not for the caffeine. I explained that I simply liked the taste of coffee, and I’m limited to decaf because the stimulants in coffee trigger my seizures. When she told me I don’t look like I have epilepsy, I told her that diabetics don’t look like they have diabetes! The conversation moved along to other subjects, but I was left wondering, what is it about epilepsy that sparks the curious ideas people have of the condition and those of us who live with it? That set me along a path of researching the history of epilepsy, which is the fourth most common neurological disorder.
It is clear that the uncomfortable reaction people have when they find out that I have epilepsy is nothing new. In fact, the stigma around the condition dates back centuries. The history of epilepsy has been extensively covered in texts, and some of these show how people initially believed that the source of epilepsy was divine or spiritual. The first documented case of someone having a seizure was in ancient Mesopotamia around 2000 BCE. The person described in the text was diagnosed as being under the influence of a moon god and underwent an exorcism. The ancient Babylonians were also of the belief that this was a disease that was caused by evil spirits. However, the Greeks had a different view of the disease. They saw it as being positive, believing that the person affected was inhabited with a divine or sacred spirit. In fact, one of the names given to the condition was the ‘sacred disease’. As such, they believed that important figures, such as Hercules, had epilepsy.
Hippocrates was the first to challenge these ideas of a spiritual source for seizures, stating that linking it to the spiritual was spread ignorance through a belief in superstitious magic. From spiritual disease, he called it a ‘great disease’, resulting in the term grand mal, the name for what is usually identified as the ‘typical’ seizure.
However, his work on epilepsy did not end people’s ignorance, and there are still many cultures where epilepsy is associated with evil spirits, witchcraft, or deviant behaviour.
Hopefully you know that this is not the case. Epilepsy is a very complex disorder. According to Epilepsy.com, it is a condition whereby an individual has had an epileptic seizure. That means that just because a person has had a seizure, it does not necessarily mean the person has epilepsy. Dr Robert Fisher, states that “Epilepsy is a disease characterised by an enduring predisposition to generate epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition.” There are many different forms of seizures, ways they manifest, and how they are triggered.
Because of this, research around epilepsy is ongoing. There are now new classifications — no longer can we say someone has had a grand mal or petit mal seizure. In 2017 the International League Against Epilepsy described 13 different types of seizures. As all brains are not the same, the place in which the neurons in an epileptic’s brain are excited will also be different.
When I was 9 I was quite a lethargic child, and I often used to watch TV on my parents’ bed in the afternoon. In the beginning of 1997, I started getting a ‘funny feeling’ which made me feel uncomfortable — I had to sit up, lay down, move my shirt, wiggle around, and eventually it would stop. Of course I didn’t know that I had epilepsy — I had never heard of it before. I also thought that it would stop and didn’t want to bother my parents. But my parents did notice and when I went to a neurologist and had an EEG I was diagnosed with epilepsy. I had complex-partial tonic-clonic seizures, where the neurons in my right temporal lobe became excited and affected my left temporal lobe. That was a lot of information for a 9-year-old to digest.
I remember getting books or pamphlets, either from the doctor’s rooms or the library, about famous people who had epilepsy. I remember reading that Jonty Rhodes had epilepsy. The reason he is a cricketer, it said, was because he used to be a swimmer, but due to the dangers of swimming and having a seizure in a pool, he changed sports and became one of the best fielders in the world. That didn’t make me a cricketer, but it showed me that epilepsy was not going to hamper my lifestyle too much.
I have had an interesting journey with epilepsy — it is a part of me and a part of my identity. I am never ashamed to say I have epilepsy and, sometimes, I am quite proud of it since I have learnt to live with it and manage it. I also believe in educating people about the condition and to that end, here are steps to follow if you see someone having a seizure:
STAY with the person and keep calm.
Keep the person SAFE — move sharp objects out of the way and avoid a crowd forming.
If the person is not aware and awake, turn the person onto his or her SIDE.
Do NOT put anything in their mouth.
Do NOT restrain.
STAY with them until they are awake and alert.
The silly comment over coffee with the Brits didn’t bother me. I quite like it when people speak openly about epilepsy, even when they voice their misconceptions, as it gives me the opportunity to challenge their thinking and provide them with more information.
To read the Editor’s column for February click here
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