An inspiring journey into epilepsy awareness and taking control of your own health issues

Nicknames, I’m a big fan!  Whenever I meet someone new whether they be work colleagues, friends or lovers, by the time that first meeting has ended, I have already endorsed them with a cheeky, fun nickname that I can endear myself to them by. It’s my thing!

 I too have been called many names in my life by many people. I didn’t even know my name was Lainie until I was 26 as no one ever called me it. Lobos, Lulu, Lanelle, Leisel, Chait, Burger, Lionel, Slag, Chaitskillz, Weenie,180, Paris and now Electro Girl. I love being called all of these things, because to me, it represents a level of comfort, a kinship if you will, between your friends and family with you that is special to your relationship with the person that gave you the nickname. It’s your thing together. A bond. A loving memory that will stay with you and make you smile when you think of the name.

Of course there’s always exceptions to the rules and on the other polar opposite of these endearing names by loved ones, come the nasty names that you receive for various reasons, especially when they were from the boys in the school yard calling me “fatty” and ugly” but I just told them they smelt so I guess, to me, that made it feel even – weak comeback but nevertheless it was empowering at the time. Nowadays I have so much more colour in my responses but that is saved for another blog.

I have dabbled in stand-up comedy for the past 4 years and with this hobby sometimes comes the inappropriate heckles about gender (if you’re female and apparently not funny), your comedy and your appearance which I haven’t loved I must admit but I guess, the hecklers, like mosquitos, have a wonderful use on this planet, I’m just not sure what that is. In saying that, the innocent shout from men in cars “you’re hot” that I used to get would be really welcomed now that I’m over 45, but alas they have disappeared along with the wolf whistle due to the current climate of gender issues and respect or is it simply that I’m old and washed up now?!

Why I’m bringing all this up is that some people, like myself, with conditions that display as different from societies definition of “normal” get called names like retarded, freaky, weirdo, fucked in the head, spaz and one name that has lasted through centuries particularly with people with epilepsy “the devil”. I have never had these names thrown directly at me because I have hidden my seizures from the public at large, but in front of the right crowd, I would be an easy target for these names if my brain happened to need a rewire at the time and I dropped to the ground having a grand mal seizure at their feet.

For millennia, epilepsy has been seen to be a condition that is demonic like because the brain was not well understood scientifically, it could only be explained supernaturally:  

For 4 millennia, seizures in infancy were believed to be of supranatural origin and were dealt with by incantations, exorcising rituals, and protective amulets. Instead of pursuing scientific research into their causes, gods, devils, mothers, wet nurses, midwives, or obstetricians were blamed. (1)

Then there was documentation that it was in fact the people experiencing these seizures that were perhaps making these demonic references as way to explain to others what was happening to them:

They have been described well by British writer Margiad Evans who had her own experiences and explained as if it was some type of “alien power that temporarily enters the body and then pushed itself out.

Evans’ describes her own experience, “the old idea of demonic possession … arose not from the onlookers of sufferers in fits but from the sufferers themselves. Because in the violent attacks one feels as though the body has been entered by a terrific alien power; and that that power is trying, after entrance, to push its way out again.” (2)

Personally, I believe nicknames come into play as a form of endearment and love and so when it comes to straight out name calling based on a person’s flaws, weaknesses or vulnerabilities then it’s a whole different ball game.

Yeah, I have epilepsy, but am I possessed by the devil, I think not. I am just a person with an overly electric brain at times that needs a rebooting every now and then. Nothing devilish about that. If anything, I am possessed with strength. So the next time you want to call an epileptic something, yell out – “RESPECT” I’d much rather hear that!

Lainie Chait

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