Sunday, 27 November 2016

Epilepsy and writing

Hi!

Today is an extra post, and it's about something I rarely talk about. However, as it's epilepsy awareness month, I wanted to cover this topic for fellow epileptics, their carers, and to help any writer who wants to write about an epileptic character.

So why am I qualified to write about it? Simply put, because I'm an epileptic myself. I'm fortunate that I have a lot of my seizures controlled by two wonderful medications. However, some do slip through the cracks (like last night, which prompted me to write this blog post).

Epilepsy can be fairly misunderstood. In fact, a lot of people know it only as seizing on the floor - thrashing, loss of bladder control, eyes rolled back, unconsciousness, etc. While this is certainly true, and one of the most common types of seizure, there are a lot more. If you want to learn the full list, or are just curious, it's really good to check out this link.

It's good to know that seizures come in many shapes and sizes, and though there are definitely similarities between each person's seizures, they are also quite unique to the individual. I suffer a few types of seizures:

I have Grand Mal - the thrashing one where you're unconscious. This one I am super fortunate with, as I haven't had one in a long time! Hurrah for great medications! Also, this one is actually the easiest for me. As I'm unaware of it, it doesn't freak me out. I just wake up really sore and tired (all that flailing is like a mini-work out, people!). Oh and a tip while we're at it: Don't wake someone after a seizure; let them sleep it off.

I also have Simple Partial seizures - people describe these as auras, or a strange feeling or sensation. Me? I get a very fuzzy head and tongue (kind of like that feeling you get when you hit your funny bone...but in my tongue).

And I have Complex Partial seizures - this includes (for me) automatisms (repetitive movements, lip smacking, fun stuff like that!), motor issues (jerking of different body parts - which me and my partner lovingly call "off roading"), and sensory issues (my senses have a party - once I felt like I was covered in menthol! I also have speech issues.). These seizures can be 30 seconds to about 2 mins. Just one, or a cluster of seizures. Mine tend to come in clusters, because I'm special like that. If only winning lottery numbers would come to me in clusters...


As I said, there are plenty of different variations of epilepsy, and I want people and writers to know that there're a whole host of areas they can find out and write about. There's a big audience out there (more people have this condition than you might think!), and knowing the different forms of seizures can really bring an authentic slant to your work. Personally, I'm not offended if someone makes a little slip up in their writing about epilepsy, as I know they are coming from the right place (hopefully!), and for me, awareness through creativity and writing is one of the best ways to pass on knowledge of this condition.

Most epileptics get pretty used to their condition, and it's usually harder for the person watching to deal with it emotionally. However, sometimes it can be a little surprising if seizures change. Mine did last night. You'll probably find that the sufferer may a) be scared, b) panicked, c) mortified. Some people get all three. I try and get people not to watch if I know I can handle the seizure on my own (or have my partner make stupid jokes and try to ignore it's happening). Some people prefer the comfort of someone there. If you can, try and see how they react when you're near, and see if you can interpret what they want (okay, this is not easy, but worth a try!),


Fun side story: I was having a seizure with automatisms where I was hitting myself over and over again on the leg and arm while we were driving home. We had to slow down to pass a policeman directing traffic. My partner turned the music up full blast, started copying me, and the policeman gave us such an odd look, trying to work out if we were dancing! Now that is my sense of humor and it helps me relax. Some epileptics really won't like, but it just depends on their personality. Mine, I like carefree and fun if I can get it!


I also encourage writers not to be afraid to ask questions if they see the person is open to it (some are a little embarrassed). I'm pretty open to most questions, as I want to open this topic up so more people understand that epileptics are totally normal (kind of ;-) ).

If you're too shy to ask (some people worry about offending), you can always email me anonymously.

One of the things with epileptics is that they don't usually want sympathy or pity. Pride and the ability to handle their own sh*t is pretty important to them most of the time. Again, depends on the person.

Alrighty, so there you have it. If you're writing an epileptic character or just wanted to have a listen, I hope this helped!!!


4 comments:

  1. Wow! This is a very open post!
    Among a heap of other conditions I've never had epilepsy. I have known a few people with various forms of the condition. You know there are sites/contest/publishers that seek either fiction or non-fiction that portray 'disabilities' in a positive manner - not that I see you as 'disabled'. But I do see you as a writer with an ability to do it.

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  2. I try to think as a condition as an opportunity for a writer to explore an experience and relate it to others through creativity. I'll definitely have to check out some of those sites/contests. Believe it or not, I've never written an epileptic character, apart from in my current work in progress!

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  3. Sometimes our own conditions or situation are too close for us to write about but my current MC is in a wheelchair though I've never been confined to one. My MC that you know (yes,Hunter) it occurs to me is enduring a rather longer and more complicated recovery from a serious accident similar to my own experience but the similarity is only the same as yours and mind. Which is not letting it BE life - or life goes on in spite of afflictions.

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    1. I couldn't agree more - a person isn't their condition. It's just a part of who they are, and I like this way of it coming through in books. Not to say someone can't write a book about the condition though. Different wishes for different fishes though.

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