FAQ : Freaking Awesome Questions! Part II

Thanks again for all your questions! See Part I here. For this portion, I want to start with some more intimate questions (cue music, dim lights). So here we go.

What’s the most embarrassing episode you’ve had? What’s the weirdest? What was the scariest?

It’s hard to say which episode was the most embarrassing. In a sense they are all both embarrassing and not. It’s always embarrassing to thrash around on the floor, especially if that floor is full of one hundred drunk college boys (see this post). However, I never remember any part of the actual incidents.  Therefore, I have the advantage (or disadvantage) of making up what happened. I picture myself gracefully falling to the floor like a 40’s actress fainting at the sight of blood. (The devil on my shoulder pictures something more in tune with the dancing styles of Tina Belcher of Bob’s Burgers.) Then I quietly tremble (vs. violently flop) as if a cool breeze kissed my neck….this is starting to sound more like erotic fan fiction…clever title ideas anyone?

Anyway, I’d say the weirdest one was the one I’m not entirely sure I really had (see here).

The scariest was when I crashed my car (see here).

How do friends and family react?

Luckily, they react perfectly. I’m sure they are scared for a bit, but then they dote on me, buy me ice cream, etc. In general, my family and close friends don’t dwell on it.

The hard part is telling new people. When do I tell them? How do I tell them? Sometimes I feel like I should walk around with business cards that tell people all about my condition just so I can just get it over with. But in truth, I’ve never had a bad reaction. And normally, people respond with “hey, my (insert relation here) has that”, or “cool, so what should I do?” All in all, positive comments.

But I am an adult now. As an adolescent, it was much worse. I know, I know, kids don’t understand, they’re just scared, they’re not trying to me mean. Let’s be honest for a moment: middle schoolers and high schoolers are assholes. I was one, you were one, get over it. So, in middle school, I never wanted to tell anyone, especially since the school didn’t let me do anything at 6^th grade camp except sit and whittle a stick. Literally.  In high school, it was much the same. Who’d want to go to the movies with someone who could freak out at any moment?

Luckily, this isn’t the case anymore. Or if it is, I just don’t give a crap.  

Is it curable?

Like a lot of answers….it depends. Some forms of epilepsy have definitive causes, which can be treated. For example, you might have a tumor that is causing your seizures. If you remove the tumor, it’s likely the seizures will stop and you’re cured! Of course there are also tumors that are inoperable, or other types of irreversible head trauma. In those cases, it’s not likely your seizure will go away. In fact, they might worsen. Then there are types of epilepsy, like mine, where the cause of the seizures is unknown. Because we don’t know the cause, it’s hard to really “cure” it. The best we can do is “manage” it. Which, once you think about it for some time, is just as good. I used to hate not knowing what caused my seizures (at a general level, not talking about triggers). But I’ve grown to accept that I might never know what causes them. Medication helps me control them, and that’s all that really matters. Plus, this method fuels my fantasy that I secretly have otherworldly powers that are just waiting to reveal themselves.

Is it genetic?

I’ll have to do more research into the actual numbers on this, but in general, the same thing applies as in the previous question. That being said, I’ve had doctors tell me that one’s predisposition to seizures can be genetic. If I have children, they might be more prone to seizures than other people, or they might not. Again, this is mainly because we don’t know why I have them.

Is it true that cannabis oil has proven effective in preventing seizures?

To a degree. See this post.

Does the keto diet work?

I still want to do more research on this topic. For now, see this post.

Follow up: am I still on my modified version?

No. I like bread too much.

That’s all for now! I hope to answer some of these questions in more depth in the near future.

FAQ : Freaking Awesome Questions! (Part 1)

Thank you all for your questions! I am breaking this blog up into pieces so if your question isn’t answered here, fear not!

First I have to say that I’m not a medical doctor. However, the information here is based on over fifteen years of personal experiences, peer reviewed journals, medical conferences, discussions with doctors, material from nonprofit organizations, and interactions with others living with epilepsy. It’s basically as legit as anything needing a disclaimer can get.

I’ve decided to tackle the basics first. In the interest of time and space, I’m focusing on generalized tonic-clonic seizures and my personal experiences.

What should you do if someone has a seizure?

I get this question almost immediately after telling someone I have epilepsy. Which is good, because there are many myths.

•  First, don’t freak out. It’s probably scary and bizarre, but we’re not going to go Exorcist on you and spin our heads all the way around and projectile vomit split pea soup.
• Instead, ease the person to the floor and try to get them on their side. This prevents them from choking on spit, vomit, Flaming Hot Cheetos, etc. 
• Don't put anything in their mouth, especially your finger. And no spoons!
• Clear the area so the person is less likely to hit something. Likewise, remove glasses, ties, or anything that could harm them.
• You can put a pillow or blanket under their head if you want. I prefer 100% down pillows wrapped in 1200-thread-count Egyptian cotton cases.
• Call 911 if the seizure lasts more than five minutes, or if: the person is in water, is pregnant, or has other health conditions.
• Pat yourself on the back; you just helped someone!

What trigger warnings/labels exist and how are they defined?

This is a very interesting question that I want to look into more before answering. In brief,

I am aware of the Harding test, which tests if a video contains sequences of patterns or flashing images that could trigger seizures in those with photosensitive epilepsy (which I have). However, this test doesn’t seem to be required for anything, at least in America. I think the full answer to this will come in a later blog post.

Do you have warning signs/auras before having a seizure?

It’s hard to say. I don’t remember ever having any, but my mom said that once, right before I had a seizure, I said “oh no!” So it’s likely that I do have some indication of what’s to come, and I just don’t remember it later. Some people I know have “auras” before they have a seizure. This can manifest as glowing light, sounds, or other strange things. It’s likely auras contributed to previous assumptions about what epilepsy was (for example, some cultures interpreted auras as forms of divine communication). It’s likely I’ve had incredibly profound thoughts before a seizure (as Socrates claimed to have) but lack the memory needed to retain such magnificent insights. 

What activities are limited? Can you drive? Can you go to a rave? Do you wear a helmet? Do you have a dog?

Lots, no, no, no, no. Life with epilepsy, especially generalized, photosensitive epilepsy can range from pretty normal, to severely disabling. Luckily, I am on the pretty normal end. But there are still things I can’t do. The one that has the most impact on my life is driving. I moved across the country because of this. When I lived in San Diego, I felt extremely disabled. Don’t believe me? Try living in Southern California without a car, with a job, with a social life, and with doctor’s appointments. It doesn’t work. So, I moved to Boston, land of better public transportation. I have never felt more independent in my life. When I say I don’t drive, people don’t automatically assume I’ve had a DUI or am lazy. They usually say I’m lucky. Which I am. I don’t have to deal with massholes or be a carpool mom, and I never have to be the designated driver (it’s the little things really).

Additionally, I can’t go to clubs or raves. I’m more of a pub person so this works out fine. As does living in Boston. But…Vegas is one of my favorite place on Earth so that’s a bit of an issue.

I don’t wear a helmet on a regular basis. Even though I could just say it’s because my boyfriend rides a motorcycle.

I don’t have a service dog. But I heard service mini horses are a thing! Maybe by the time the waitlist is shorter I’ll have an apartment big enough for little Winston (that will be his name).

If I could eat one food for the rest of my life, what would it be?

Cheese. Always cheese. 

Wired: The Role of Disability in a World Gone Digital

A while ago I wrote a brief blog post that discussed a brain/computer comparison. Today, I’d like to expand on that idea and talk about disability in the digital world.

Note: I might go full nerd here.

In 1967, Marshall McLuhan suggested that electric circuitry is an extension of our nervous system (The Medium is the Massage). He also suggested, in The Gutenberg Galaxy, that the next form of medium would be an extension of consciousness. He wrote this in 1962. I think it’s safe to say that this new medium has, at least partially, arrived in the form of the internet. Now, before I go all Annie Hall on everyone (remember that scene with that annoying guy talking about McLuhan?) I’ll stop writing about things that require citation.

When McLuhan wrote what he did, I suspect he was thinking metaphorically. Interestingly, this might not be the case anymore or in the near future. Electric circuitry is already literally an extension of our nervous systems in the form of advanced prosthetics that respond to brain signals.

But consciousness? I don’t think we’re quite there yet.

Let’s pretend we are. Let’s pretend we live in a world where people can upload their consciousness (lame Johnny Deep movie about that I believe) or that we live in an entirely virtual world by syncing our brains to a virtual self.

What about disability then? When we are freed from physical disability by way of virtual avatars, how will we, as a society, react to mental disability? Will it be more noticeable? Even more stigmatized? Will we, the mentally disadvantaged, (because I do consider epilepsy at least partially a mental disorder) be further singled out due to the fact that our disabilities transcend the medium into which we exist?

If we exist in a purely visually constructed world, how can we mask the complications of mental disability? I suspect we can’t. If we could, I think YouTube would have already figured out how to block assholes from posting comments. Of course I am not comparing mental disability to asshole-ness (as a writer I have full power to create new words by the way). I’m just saying that cognitive abilities, disabilities, or general asshole-ness are harder to mask in a setting that harbors physical anonymity.

When anyone can alter their appearance to anything they want, physical attraction will go out the window. It will be of less importance than personality (money might still work it’s way in there though). I for one, think this would be a great step forward. When we can’t be judged by our weight, skin color, gender, or anything else physical, the world might be a better place (with the exception of the YouTube assholes of course). But, being people, we will inevitably find ways to discriminate against each other.  

I think I’ve been asking myself the wrong question. Instead of “how do we mask it?” I need to ask, “should we mask it?”

If we abandon our physical bodies in favor of a virtual one, and then proceed to abandon our mental selves in favor of a more socially acceptable state of mind, we will all be zombies. Instead, we should stop thinking of mental disability as something negative. Just because you are unable to do something, doesn’t mean you are worth less. I know this is not news to anyone reading this, but I fear that the further we delve into physical modification, whether it be through prosthetics or digital avatars, the social attitude toward mental disability will change. Hopefully, it will be for the better. Hopefully, we can embrace differences in mental capabilities. Only then can we truly call ourselves tolerant.

And if you’re still an asshole, then you can go build your own virtual world.   

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". 

I'm Baaack

So I haven't posted in like a million years. My only excuse is that I've been working on my novel (I know right?) Yes, I'm that person at the coffee shop that you tell yourself isn't looking at you, but in reality I am because I'm trying to figure out how to describe what people do when they talk to each other. At least I'm not in a cafe in Los Angeles trying to work on a screenplay. Which brings me to today's topic: movies and television.

To put it mildly, I love movies. I grew up watching all sorts of movies, putting on plays to the great discomfort of my younger siblings and cousins, and even wanted to work in the industry. Until I did for a brief moment and realized it takes the magic out of everything. That, and I didn't want to live in LA. But being so exposed to the entertainment industry did get me thinking about the role epilepsy has, or rather, has not, played in film and television.

Recently, I was at the theatre (Ex Machina, so good) and saw previews for movies that ranked from mildly intriguing (Self/Less) to eye-rolling (another Poltergeist, really?). But, of course, none employed characters I could relate to on a medical level. Off the top of my head, I can name one movie where a main character has epilepsy and is "normal". That would be Garden State. Other than that, again off the top of my head, I think of horror movies where people are possessed by demons or otherwise foaming at the mouth. Yet, one in one-hundred people live with epilepsy. Is it that hard to throw a positive, even normal, example in there one in a while?

There is one TV show frequently presents seizures: House. I love the show, but if you watch it enough you realize that almost every patient has a grand mal seizure. Probably because it's dramatic. It wouldn't make for good TV if Cameron just said, in her annoyingly empathetic voice, "it looks like the patient just had an absence seizure that we couldn't see." My point is, even when seizures are represented, they tend to be misrepresented.

To compliment, or rather exacerbate, this issue, I have never once heard a celebrity talk about epilepsy. Not to say that some haven't, just that it isn't really front and center. This doesn't include John Travolta whose son sadly died of complications related to seizures. There was potential there to bring the disorder to light but I'm almost glad it wasn't because, again sadly, the medical opinions of Scientologists should not be taken seriously, but that's another story.

Anyway, with the prevalence of epilepsy, it saddens me that more people in positions of power (let's be honest, this means celebrities) don't speak out about the disorder more. I would love to see a (drought-friendly) version of the ice-bucket challenge. Or purple kitchen tools whose proceeds go to those with epilepsy that don't have the means to pay for the ridiculous cost of medication.

Seriously, what if a Kardashians had epilepsy? It would be the coolest thing. The younger sisters would be getting brain implants instead of butt implants. Their show would be probably called "The Movers and Shakers" (get it?).

Better yet, what if Kanye had epilepsy? It would be considered a gift from the Gods, just like him. Hey, at least people would talk about it right?

So to you, famous person reading my blog, do me a favor: talk about it.

Postscript: I did hear about a British movie called Electricity that I admit I haven't seen. Here's to hoping it gets it right!

The Curious Case of the Veggie Patty on the Carpet

Today I'd like to share a story about the time I found a curiously shaped veggie patty sitting in the middle of my living room floor. A jagged chuck was taken out of it, as if someone took a bite, thought better of it, and decided to leave it on the carpet for whatever starving college student happened to wander into the apartment that night. True, stranger things have happened; once the same thing happened with a pair of sweatpants (but no bite marks). To this day I have no idea where those pants came from.

But back to the patty. My first thought: What the heck is a half eaten veggie patty doing in the middle of my living room? I looked around; no one was home. Was I burgled? (I love that word). Did some mysterious ninja burglar enter my home just to steal a bite of a microwavable patty made of mushed vegetables? That would actually be pretty cool. What would the media call him? He'd be like the 2014 version of the Hamburglar, teaching kids it's okay to steal, as long as you eat healthy. But, I don't think it was the Vegiburlar (need to think of a better name for that).

Well, I'm sure you can guess what actually happened. I was eating a microwavable veggie patty, with no bun or condiments, alone in my pjs. Cue the miniature violin please. And apparently, I had a seizure, dropping the half eaten patty in the process. Whenever a seizure like this occurs, I have the fleeting thought that maybe, just maybe, I actually time traveled, or that maybe that magical round assortment of chickpeas and carrots was actually a portkey to the other side of my living room. But alas, I fear that was not the case.

Luckily, I was okay (see, apartment realtor guy, I really don't need your fancy hardwood floors, carpet is just fine). My brother and his girlfriend showed up a short while later. In true post-seizure fashion, I had no idea what they were doing there. Apparently we were due to play sickball (a creative mashup of kickball and softball) with, of course, the epilepsy foundation's team. Our team name was, get this, The Movers and Shakers. It was awesome. Of course I have no idea who won, or if there was a winner, or if I played, etc.

But, I have the satisfaction of knowing I solved a mystery. I only wish I had had some sunglasses and Baba O'Riley playing in the background (yeeaaah).

My Extremely Modified Ketone "Diet" (hint: it involves cheese)

First things first: I am not a medical doctor. Ok, now that we've got that out of the way, I want to talk about my new life decision to eat mass quantities of cheese. Why? you ask. Well, besides the fact that it is delicious and pairs well with wine, cheese includes properties that could help control seizures. That property is fat.

Some of you may have heard of the Ketone diet and its relationship to epilepsy. In short, it is a high-fat (specifically cheese/cream/oil), low-carb diet that contributes to higher levels of ketones in the body. Higher ketone levels have been associated with reduced frequency of seizures, especially in children. From attending epilepsy conferences, I found the process is actually quite complicated and involves an initial hospital stay to monitor levels. Nonetheless, it seems to work for a lot of people. I am super happy this works for people, especially children. But...I'm lazy.

So, I've taken a page from many a diet enthusiast and decided to take one tiny part of the diet and run with it. I will just eat large amounts of dairy products including, but not limited to, cheese, cream cheese, and ice cream. Also, I can't stop eating carbs (because bagels).

To take it a step further, I've decided that since I altered the diet, I can rename it. I haven't decided on a name but I know this: I will loudly and relentlessly propagate the molecule of scientific truth behind my diet (the fatty part) and completely ignore the possibly harmful components (eating copious amounts of bagels).

I'm thinking I should also go back to school for my PhD in technical writing so I can label myself as a Dr. Also, I think I'll throw in something about it being based on some ancient diet that worked pretty well for people who lived in an environment completely different than ours. That portion can, of course, be completely falsified (*cough* Paleo Diet). Before you know it, nutritionists will publish papers arguing about my brilliant insight or inaccuracies and I will be swimming in a pool of money, eating cheese. I will sell cookbooks, have a magazine, recruit celebrity followers. Hell, I might not even need a PhD, I'll probably get an honorary one from somewhere. Then I'll dabble in Scientology, try to quit and be stalked the rest of life, get some type of disease from eating too much cheese, Jenny McCarthy will say it causes autism....OK, on second thought maybe this isn't such a good idea.

I should just eat my cheese in peace. With wine.