A Rift in Reality

Embed from Getty Images

Kid tripping out in virtual reality

As we wait with bated breath for the what is arguably the first wave of consumer-based virtual reality products, it is natural to anticipate a shift, a rift if you will, in entertainment and social interaction.

Will products like the Oculus Rift and Sony’s VR headset merely provide an alternate way to experience media? Or do they represent the first step in our inevitable decline into Wall-E-esque existence? For that, we’ll just have to see. What may be easier to consider, is how an easily-available virtual reality will impact those with disabilities.

It is easy to see how an easily-accessible virtual reality will provide benefits to those with a range of mobile disabilities. For example, someone paralyzed from the waist down can “walk” among a landscape. But what about other disabilities? Specifically, what about epilepsy?

As an epileptic, I wasn’t allowed to play video games as a child. I couldn’t watch certain movies (sometimes I didn’t realize this until I had to hide under my coat in a movie theater), and I definitely can’t go to clubs. These are hardly things to complain about, but the truth remains that a virtual reality may never be a reality to those with seizure disorders.

An already highly stigmatized disorder could become further visible with an increased trend toward a digital existence. While bringing visibility to the disorder is, in my opinion, a necessity (I am, after all, writing this article), VR could amplify the alienation some epileptics often feel. As virtual reality hedges toward a truer reality, and perhaps a preferable or default reality, how will those unable to access this new “global community” adjust?

I, for one, am not against the development of virtual realities. I recognize the extreme talent, artistically and technically, that goes into creating VR products and landscapes. It’s amazing that we can replicate and advance our own environments, a lot of times for the better. But it’s worth considering, if only for a moment, how a fully-immersive, widely-accepted virtual world will affect those unable to visit it.

What do you think?

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!

All That Flickers (plus a cool invention!)

I've been asked recently what exactly a "flickering" light is. I opened my mouth to respond and spit out a bunch of bullshit. Because I actually don't really know.
 
We've all heard of people having seizures at raves, or while playing video games, or while watching that one Pokemon episode, but what exactly differentiates a toggling light from a seizure-inducing flicker?

To tackle this, I had to do some research. Obviously a hands-on approach was out of the question, so I had to rely on my trusty friend Google.

The general consensus seems to be that flicker rates between 5-70 hz (flickers per second) are dangerous for photosensitive epileptics, with most symptoms occurring at rates between 15 and 70 hz. So what does this mean with relation to trigger-causing stimuli in the real world?


As I said, I did not do any hands-on research myself, but I can relay what has happened to me in the past. The things that have caused photo-sensitive-related seizures in the past include:

• Lara Croft video game
• Sunlight through palm trees while driving (I sound SO California right now)
• Flashbulbs from a red carpet event (that was on TV, otherwise I could have given Jennifer Lawrence a run for her money))
• Neon signs at night time in Las Vegas
• Those random strobe lights that people hold at clubs and parties- there seriously needs to be a bar that bans these

Most video games have warnings on them about the potential for seizures in photosensitive epileptics. Of course, I didn't know that I had this disorder at the time I played Laura Croft so it did me no good. Nor do I know if there even was such warning on that box.

I have a hard time determining what the flicker rate was when I was driving. I suppose I could estimate my speed, and the distance between the trees and all that, but I'm far too lazy. The TV incident too is pretty hard to measure, as are lights in Las Vegas.

However, I have done some research into strobe lights. Most available strobe lights (wrist bands, batons, spot lights, etc) pulse at between 10 and 12 hz. While relatively low, this is absolutely within the "danger zone". The sensitivity increases if the strobes are used in the dark (usually), if there are multiple ones (causing a potentially higher overall flicker rate), if the person is tired, stressed, or taking substances.

So please friends, consider the flicker rate of your toys around us.

Things that haven't given me a seizure (probably due to medicinal increases) but annoy the heck out of me and sometimes provoke panic attacks (which can sometimes be equally debilitating) include:

• Fire alarms (usually around 1hz)
• Crappy projections 
• Ambulances (usually around 5 hz)
• Florescent bulbs that are about to die (their death follows soon after I encounter them)
• Donald Trump

So, what does this tell us? What can we do?

I actually have an idea this time!

Make glasses (sort of like Google glasses) that detect frequency. The glasses would be tailored to the individual and their seizure threshold. If the glasses detect a frequency greater than the threshold, they go black, creating sunglasses for the wearer. Of course this might be inconvenient (to say the least) if you're walking or driving, but hey, I just thought of this right now. Remember how long we had to wait between the Nokia the iPhone?

Now I just need some investors...

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!

Peanuts and Fire Alarms

I want to start this post by saying I don't have the answers to the questions I pose below. I merely want to explore a concept that has been on my mind of late.

In the wake of the anti-vaccine movement (don't worry this blog won't be about that), other concerns about public safety have surfaced. Topics that most interest me deal with public schools.

As a child, I pretty much ate the same thing every day at school: goldfish crackers, applesauce, a fruit roll up, and the ever-popular pb&j sandwich. I clearly remember a friend of mine saying she hated peanut butter and jelly sandwiches. Appalled, I inquired as to why. Well, turns out she was allergic to peanuts. But she knew this. She was probably around seven, and knew not to touch peanuts. She also had an epi-pen that she knew how to use. Bottom line, she was prepared.

By middle school, there seemed to be some weird rules about taking medication to school. Inhalers and epi-pens had to be kept with the school nurse. Clearly, this is problematic. It's like keeping all fire extinguishers at the fire department. The, perhaps not-so-subtle, reasoning behind all this was that school were afraid of being sued if a student misused their medication. This fear of legal repercussion slowly morphed into more and more rules. Kids can't keep their medications with them, they can't eat peanuts at school, and, in some cases, they aren't allowed to run at recess (seriously).

So by now you're wondering: what the heck does this have to do with anything? Well, here ya go. My question is this: why is it that some disabilities overwhelm the spotlight, while others get no attention at all?

As a youngster with epilepsy, I knew when I had to leave a classroom. If there was a video with flashing lights, if some idiot had a strobe light, or if (and I still maintain this is true) the class was really boring. But never once have I heard of a warning, much less a rule, about showing such videos in class, or banning annoying strobe lights from school campuses.

And now I want to share a little story: I was at my high school one morning taking my AP Computer Science exam. Out of nowhere, the fire alarms started going off. It was "just a drill" as always, but the alarms didn't stop. After a couple minutes the sound relented, but the lights keep flashing. Because of some AP rule, we weren't allowed to leave the room. I made a comment about my condition and the supervisors covered the lights with printer paper. It didn't do anything. And I was told if I left the room, I would fail the test. So I sat there, with my head the crook of my arm, and failed anyway. When I went to the school counselor to complain, I was told I could retake the test but a) colleges would see that I took it twice, and b) I would have to pay $150. Bullshit. So I took the failing grade, got into the competitive computer science college I wanted, and now work at a software company...further solidifying my notion that AP tests are bullshit to begin with. 

Despite this, I'll tell you what I don't want to happen. I don't want to ban TVs from classrooms, just as I don't want to ban peanuts from schools. I'll exit the classroom, you won't eat the peanut butter cookies. Of course, there are extreme cases of allergy. But those are rare and can result from many different allergens.

Bottom line: why are we so up in arms about some issues and not others? Maybe it's because no one has sued over a flashing video or fire alarm? But that's a whole other issue.

Comments welcome!

3 years: A reflection

Hello friends! This week marks three years seizure free! Thank you to everyone who has helped me through these years! (last exclamation point I swear).

These past three years have brought much change. I quit a really shitty job, got my masters degree, moved across the entire country, and got engaged. I can't help think about how all of these events were impacted by my epilepsy.

I'm a big fan of the chaos theory (also known as the butterfly effect). I'm a fan in the sense that I think about it all the time. Sometimes too much...if I have a Frappuccino instead of the Americano will a cat die in Russia? I can't deal with that pressure, I should just go home...But, I do think certain things lead us down a very specific path we would otherwise not have considered.

In my case, I had a plan. After college I was going to work in Hollywood and make movies. I worked on a couple TV shows during college, did some video editing, and was pretty much all set in the way of contacts. Then I lost my license. It is virtually impossible to start at the bottom in the industry and not have a car. How would I go get last-minute specialty tea from Whole Foods for an actress's psychiatrist? (true story btw). So, essentially that dream was dead. I know, I could have probably found a way to make something work. But it wasn't the same. Not to mention the lack of public transit in southern California. So, plan B...

I took some technical writing classes at SDSU and got a job at the now infamous company called IMS. For anyone who knows me, you probably know that Dante was wrong, the 9th circle of hell is working at IMS. But, it was a job. And I could get to it.

Eventually, I had enough. I went back to school to get my masters if only so I could have an excuse to be unemployed and broke. I moved in with one of my best friends and through him met my fiance. Through my masters program, I got an internship in Cambridge, which I loved, and then was offered a job. So I moved across the country. And my fiance followed.

Once in Cambridge, I found the most awesome writing group (shout out to Grub Street) and was finally able to complete a draft of my novel.

In retrospect, I would never have moved across the country, rekindled my passion for writing, or gotten engaged to Chris if I hadn't had epilepsy and therefore lost my license. I don't know where I would be. I could be a famous director, negotiating with George Lucas or Steven Spielberg on the next big blockbuster. I could have hated the industry, met a rock star and became a permanent groupie (or band aid if you prefer). I could have been sucked into the black hole that is reality TV and become famous for....well something I'm sure. Maybe I would have been happier, but maybe not. Maybe I would be richer, maybe not. I'll leave it at this: things would be different. 

But here I am. And at a bit of a crossroads again. I'm faced with the decision of going off my medication. To be honest, I'm terrified. Doctors say I can probably wean myself off the medication because I haven't had a seizure in 3 years. But isn't the medication the reason for that? What if I'd be fine without it and I'm just harming my body and wasting money by continuing to take it? In reality, it's all a guessing game both for the doctors and for me. And after careful consideration, I've decided to stay on my meds for now. At least until I decide to have a family. But that's a whole other situation to deal with...

So where do I go from here? Well for now I'll be on the east coast working on my second draft. And when/if I ever sell it, I'll have (what I loosely call a disability) to thank.