Epilepsy in Lit: Because You'll Never Meet Me

I just had a very emotional experience at the hands of a novel: Because You'll Never Meet Me by Leah Thomas. I suspect many of you have had the same feeling with a book before.

Because You'll Never Meet Me, besides being a cool story about two boys living a continent apart, deals heavily with disability, and specifically epilepsy.

The main character Ollie doesn't necessarily have epilepsy as we know it. Instead, he is allergic to electricity. His pen-pal Moritz lives in Germany and, besides being blind and having super awesome echolocation abilities, has an electronic heart. Thus, the two can never meet.

The story follows the friendship of these two disabled boys and their inevitable bromance.

Like most science fiction(y) stories, Because You'll Never Meet Me presents an exaggerated, possibly fantastical version of reality. But in doing so, Thomas address disability in a creative and original way.

To paraphrase Orson Scott Card, "science fiction presents us with a truer truth." By presenting an exaggerated version of epilepsy, Thomas gets to the real heart of the condition. For example, Ollie's condition is both reactive and active. He not only seizes when confronted by electricity, but his presence seems to mess with electricity too. Thomas writes,

"I fear that you are just as likely to make the world tremble as it is to make you seize." 

While to Ollie this is a literal scenario, the remark does in fact strike at a "true truth" about the condition: that in having epilepsy, you not only experience seizures, but your seizures affect the people and world around you as well.


Despite the science fiction nature, Thomas also writes so accurately about the experience of having a seizure that I am tempted to think she or someone near to her has experienced the sensation.

These two passages in particular made me think yes! That's exactly what it's like!!:

"'Waf gongan?' I said. It could have been right then, or it could have been minutes later. Sparks were in my eyes, rattling my teeth in my ears."

"...like when I'm surrounded by electricity and wishing I could stop a seizure that doesn't give two tiny craps about my wishes."

Still in other scenes, the author drives right to the heart of what living with disability in general is like. Ollie mentions that "It's just easier to say I'm sick" while Moritz says that "Silence is harder to mock." Both of these seemingly simple observations speak to social reactions to disability. Specifically with epilepsy, it is often far easier for me to say I'm sick then to explain why I can't go to a specific bar or watch a certain movie. Similarly, it is easier to not speak about a disability because people can't make fun of you for something they aren't aware of.   

Overall, I highly recommend this book, not only for the insight into disability, but because the story is fun and the characters very memorable. 


I'll leave you with this:

"maybe...in the hopes of meeting you, I can learn to put with electricity. And all those electricities will learn to put up with me as well."

Buy the book on amazon here: Because You'll Never Meet Me by Leah Thomas or support your local bookstore!

Epilepsy in Lit: Silas Marner

In an attempt to read more classic literature, I recently read Silas Marner by George Elliot. While I don't think the main focus of the book is centered on Marner's "fits", his condition does act as a sort of inciting incident.

Marner is a weaver that lives in a town called Lantern Yard. He is known to have fits but that doesn't really have an impact on his standing in the town until one night a bag of gold goes missing while he is on watch over a sickly man.

Marner claims to have lost time, as those of us with epilepsy know all too well. For the non-epileptic folks out there, imagine going from normal to blackout drunk in a snap. If that's not your style either, I'm sure you've experienced waking up early, wanting to sleep for five more minutes, and instead waking up three hours after you're supposed to be at work. It's kinda like that.

Of course, Marner didn't really steal the money. But he is found guilty. Feeling betrayed, Marner leaves his town and ends up in Raveloe. At first he is well respected. But then his misfortune returns. He reads as a character that just can't seem to have a lucky day in his life. In a kind of series of unfortunate events that don't directly relate to his condition, he is considered in league with the devil. (People in those times weren't all that creative--I'm talking about the characters, not the writer). All you really need to know besides that is that the book ends happily.

Like I said, it doesn't seem that Marner's fits necessarily perpetuate his bad reputation. But instead they lead him to be in situations where his reputation could be compromised should he have a seizure. I find this representation of epilepsy interesting. It's almost so subtle that it could be overlooked. I mean, Elliot could have just make him fall asleep.

But this story relays a truth that might not be obvious. Even if a disability doesn't directly affect a certain situation, it still permeates your life. Sure my epilepsy doesn't make me a suspicious person, but what if I had an absence seizure during an interview (and likely wouldn't notice). I could be viewed as aloof or uncaring. I should note that it's totally likely I'll have a seizure that causes me to eat the last slice of pizza in the fridge. It's not my fault I swear!

Anyway, the book spoke to me in another, perhaps more subtle way, through the fact that George Elliot is in fact a woman named Mary Ann Evans. She felt the need to hide her gender to get more readers (this thinking was unfortunately valid), much like people feel the need to hide their disabilities as much as possible to avoid discrimination. Perhaps her experience as a female writer of male characters bleed through in her portrayal of Marner. Perhaps Marner provided a vessel through which she could, consciously or unconsciously, voice her frustration at being accused of something based on something she could not control.

All in all, I learned a couple things from this: references to epilepsy in literature can be more subtle and profound than I ever thought. Second, people from all time periods, from all places struggle with hiding qualities that make them unique, qualities that are seen as unfavorable to society in general.

Perhaps in reading books like these we can gain a better understanding of invisible, private "disabilities". We can also learn that the most disadvantaged are the easiest to blame.

November: Epilepsy Awareness Month, Novel Writing Month, No Shave Month, Read Vicki's Blog Month....Yay!

In honor of national epilepsy month and national novel writing month, and in an attempt to further put off actually writing another novel, I’ve decided to write a series of posts about epilepsy in literature.

I’ve touched on this before here, but now I want to do a more in-depth analysis. A couple things to keep in mind: some of these books I’m reading for the first time so I might misrepresent them. Second, all these interpretations, which I admit might be extremely loose at times, are just mine. I’m sure the author/s might have had different motives but I’m not particularly interested in that at the moment. Plus, I think books are meant to be interpreted in different ways.

So, let’s start at the very beginning (I’ve been told it’s a very good place to start) with the most popular book in America…no, it’s not Harry Potter (although one could argue about the similarities), it’s the Bible. (If you’re wondering what the second most popular book is, it’s Gone with the Wind).

Epilepsy is alive and well throughout the Bible. Now before I go on citing passages and all that, I want to note that I’m talking about the Bible as a historical document. Ok?

Predictably, the Bible lumps seizures and other “lunatic” behavior in with demonic possession. In the 21^st century, this is absurd. However, I think it’s attribution to something demonic speaks to something deeper.

Fear.

Societies deal with different fears in different ways at different times. Today, we attempt to assuage our fear of death by compulsive dieting and adopting pseudoscientific methods like the Paleo diet. From this, it is easy to see how, in a world governed by religion, demons would be attributed to something unknown, misunderstood, and scary.

I believe that the Bible’s description of epilepsy as a demonic curse does not suggest that people thought those who had seizure were demonic themselves. I believe it was simply a way for a highly religious society to explain something they didn’t understand.

In fact, this demonic association actually remove the blame from the individual. It would have been easy to say the person was a witch (we’ll see that later) and burn them at the stake. Or to point and laugh at them and pretend to flail around. Instead, the Bible says that people brought their ill to Jesus, who cast away the devil. Whether or not you actually believe this, the text still reflects a specific societal fear, much like a great deal of science fiction in the 1960’s played off America’s cold war-related fears.

So, as easy as it is to cast away religious nut jobs who think people like me are possessed by the devil, it is important to remember where these fears stem from. Once society as a whole actually understands what epilepsy is and how it doesn’t have to be a scary, stigmatized thing, people like me won’t have to be demonized by the scientifically uneducated. Luckily, the only times I’ve ever been accused of demonic possession is when I’m hangry. Seriously, I am the poster child for a Snickers commercial. But hey, maybe we just need to understand blood sugar right?

Stay tuned to hear about epilepsy in other books and if you have suggestions for other books please comment!

Do As the Romans Do

While I've never been to Rome, or anywhere in Italy actually, I am, as you all probably are, familiar with its ancient leader Julius Caesar. If you don't know who he is, you've probably at least seen his bust (shown above), heard of Shakespeare (who wrote about him), seen the movie with the guy from the Godfather, or gone to a toga party (toga! toga! toga!). Anyway, you're probably only a couple degrees away from knowing who he is if you don't already. In brief, he was a Roman general who was stabbed to death by a group of traitors, including his frienemy Brutus.

He also claimed to have epilepsy.

Keyword here is "claimed". Recently, researchers Francesco M. Galassi and Hytan Ashrafian argued that Caesar may not have had epilepsy, but perhaps suffered from cerebrovascular disease, which can cause a stroke (see here). Why then, would Caesar have claimed to have epilepsy? From a current point of view, I can't see how this would do anyone any good. However, we have to put ourselves in Caesar's world.

The Local quotes Galassi as saying, "In the ancient world epilepsy was regarded as a sacred disease; people who suffered from epilepsy were thought as having a direct connection with the god" (see here).

In other words, it was a marketing tactic. Now, I have mixed feelings about this. On one hand, Caesar was a bit of a dick. He used the misfortune of others to gain followers (something only the ancient Romans did right?). On the other hand, it's nice that the disorder was seen as something awe-worthy. As in "if only I could be like Caesar and talk to the gods through uncontrollable spasms and brain farts". 

There's a bigger issue here, much too big to explore in a blog, and that is: how do current societal norms and values affect how we view epilepsy? Why did the ancient Romans treat this poorly understood condition as god-like and not "devil-like", for lack of a better term? They could easily have seen his episodes as evidence of demonic possession. If I were Brutus, I would forgo the whole stabbing thing and just spread some rumors about that. I don't know a whole lot about Rome in those days, but I bet Caesar would get some heat for conspiring with the devil.

But what about today? In current Western society? I've been accused of many things, but no one has ever concluded that I'm speaking to the gods or that I'm channeling some demonic force (although my mother might argue otherwise). Then again, I've never used my condition to gain political standing.

The point is, there is something, or a great deal of somethings, that makes a particular community react to a particular situation, in a particular way. The Romans called those with epilepsy god-like. We call it a disability, because it has become just that.

What might we call it in the future?

While we can't know for sure what the future holds, we as individuals can shape how conditions like epilepsy are qualified.

Phillip K. Dick once said, "The basic tool for the manipulation of reality is the manipulation of words. If you can control the meaning of words, you can control the people who must use them." The media and those in marketing use this tactic all the time. For example, how do you feel when I say the words "all natural". Good right? It's because we've associated "natural" with something positive, even though we all know nature can sometimes be a bitch.

Let's do the same. Let's have terms related to epilepsy be ones that inspire. Let's do as the Romans did. (But not get stabbed to death by traitors.)

Stay tuned for my future series, a review of J. Ernest Bryant's "Genius and Epilepsy: Brief Sketches of Great Men Who Had Both". 

The mind-body dualism: A Cartesian approach to epilepsy

Warning: this may be boring to some viewers.

Epilepsy is frustrating in that it both a mental and physical disability, yet at the same time, it is neither. Consequently, it carries with it the social stigma associated with mental disorders and the limitations of a physical one. A physical episode is scary to witness and often mimicked. The perceived "mental" manifestations (slurred speech,  confusion, and absence) are often mistaken for stupidity or intoxication. But it is unique in that, for me at least, it manifests in episodes. You wouldn't know from looking at me that I have epilepsy. Yet I am gripped, seized, by the physical manifestation of the disorder and consequently cannot drive. Accompanying that is the mental confusion, the occasional bout of total incomprehension, and mental medicinal side effects. So is this disorder physical or mental? One could argue that everything is mental. Everything is compiled in the brain for analyzation and reaction. But there is still a distinct social division between the mental and physical. A broken limb is treated topically, soothed with flowers and get-well cards. A disorganized, I hesitate to say broken, mind is treated with expensive medications, compounded by ostracism. This may sound a little melodramatic, but I believe it is true. So where does this complex, poorly-understood disorder belong? In Grey's Anatomy or the DSM?

You could argue that all physical ailments are mental; that a broken limb is the result of the mind's inability to produce enough substance to strengthen the bone and thus resist breakage. You could also argue that all mental illnesses are solely the result of physical chemical imbalances. But I find that, true to human nature, we want to categorize disabilities.

I choose to discard this Cartesian approach to mind-body dualism and instead argue for a more fluid definition. The mind is not separate from the body, the body is not disconnected from the mind. It follows that the two need not be semantically differentiated; the body is the mind and the mind is the body. We could argue the specifics of this stance forever, but for me, this is the truth. My neurological disorder affects my physical being, and my physical relationship with the external world affects my neurological state.

We could, of course, add a spiritual element to this. In the past, and even now, epileptic fits have been attributed to everything from demonic possession to manifestations of divine personhood. As a not-so-spiritual person, I hesitate to expand on this, but I beleive it carries a degree of merit. There is something about missing time, memory loss, and complete loss of physical control that makes me feel like something else inhabits my body for a while. I know, scientifically, what is happening. And I'm sure we've all had moments where we "weren't ourself". Feeling like someone or something else is driving your body is probably the hardest thing to explain about epilepsy, but it's there. And it's the most frustrating, kinda cool, thing ever. Maybe I'll just change my name to John Malkovich.