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.

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. 

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).

"2012": The most forgettable movie of all time

A couple of years ago a movie called 2012 was released. Apparently it tells the epic adventure of our planet's inevitable demise in the year 2012. I wouldn't know, though, I didn't see it. And yet, I did see it.

Let me explain.

The year was 2009 (I looked it up) and I was in San Luis Obispo where I went to school. I had a seizure for some reason or another. I'm not sure which episode it was, but no big deal, life goes on. A couple months after this seizure, I mentioned the movie 2012 to my brother, commenting on the fact that although it looked ridiculous, I would like to see it. He laughed. I agreed, I was probably having a mini-episode just thinking about wasting my time on something like that. But, that's not why he was laughing. He thought I was joking. Why? Well, it turns out that the day after that 2009 seizure, my brother and I had gone to the theatre and seen 2012. 

That's right. I saw the movie, then completely forgot I saw it. And not in the "have I seen this episode?" way, but in the "there is no way I've seen that movie" way. I don't even remember going to a movie theatre around that time. Now, this presents a bit of a problem. Considering the mediocrity of the movie, is it possible that my unconscious mind, already fed up with the sheer about of information that college classes thrust upon it, decided that the entire movie experience was just not worth remembering? Perhaps. That scenario would actually be less terrifying than what I experienced: losing time. 

I've tried many times to explain what losing time feels like. The closest thing I can compare it to is being black-out drunk. Except, you don't remember drinking, being drunk, passing out, or being hungover. You simply wake up the next morning, fine as can be, and go on with your life until someone tells you you saw a movie you swore you never did. This had happened before the 2012 incident as well. I've probably explained before how I don't really remember things that happen immediately before and right after having a seizure. For example, after having a seizure, I could forget where I was coming from or going to for about an hour. Normal. But, I've also found, in some cases, that I somehow have the inability to make memories for about a day after. Sometimes, a week after, or a month after, I would have absolutely no knowledge about the days surrounding the incident. It's as if some electrified bubble encompasses that area of time, like the seizure somehow rippled away from it's focal point on the timeline and jumbled up everything around it. 

It's the most frustrating thing in the world to lose time. Especially when people you love are the ones that tell you about it. It's embarrassing, infuriating, and scary. I can't think of anything worse than losing your mind. Even this tiny brush I have had with it scares me to death. Luckily, this hasn't happened since my last seizure, so I'm certain it relates completely to isolated episodes. Also, I'm sure everyone reading this has had a moment when they totally didn't remember what they did (even sober). Luckily for me, I only missed a crappy movie.

Or so I think.

I've also been told I went to the Getty Museum.

The EMT: A Love Story

The next great American love story begins as follows: I was 22 and life was a blossoming flower. Love was gliding away from me on the wings of bee, my fragile pollen vulnerable to the slightest breeze that would take me to my true love...but really I was driving home from my friend's house in my Nissan in the middle of suburban San Diego listening to Metallica. As eager as I was to find my true love, I didn't realize he would appear at my most vulnerable moment, and in fact turn out not to be my true love in even the slightest.

As I said, I was driving home after staying the night at a friend's house. As I turned right onto Black Mountain Road from Mercy Road...well I don't know what happened, frankly. I'm guessing I continued to drive up Black Mountain Road until I flew over the median, somehow missing the cars that literally fly down the other side of that road (there's a bump where you can totally get some air), and crashed into the well manicured (up until that point) hill on the other side of the road. Some of you Rancho Penasquitos-ites/Penasqutians may remember that we got a new "Welcome to Rancho Penasquitos" sign a few years back. You're welcome.

Anyway, the following bit mirrors that of a cliche war movie where we get random glimpses of consciousness during battle. I stumbled out of the car, I saw my mom through the door of the ambulance, I saw him. No, not God, but certainly a creation of his. My consciousness decided to hang out for a moment longer as I looked up into the gorgeous face of the Emergency Medical Technician. I swear they have a prerequisite for looks, because this is not the first time I have seen such beauty in the form of an EMT (not to mention they drive fast cars). So I look into his face and he looks into mine. I reach to touch his face and he caresses my bosom. Really, my hand gets caught in the IV and he is just sticking heart rate monitors to my chest. According to my mother, an actual conscious being at that point, I then told him, "At least buy me dinner first." I lost consciousness again after that. And although I never did hear from that beautiful man again, at least I know that even in my hours of darkness, I can be a classy lady.

The EEG, also known as a horrible hair generator

Today I had the pleasure of having a EEG. For anyone who has had an EEG, I am fully convinced that we all deserve a free hair wash, cut, and style afterwards. Maybe a eyebrow wax or something just for good measure. For people who have not had an EEG, which stands for electroencephalograph (yes, I had to look it up), it is a very interesting experience. First, a nurse places heart monitor thingys on your boobs. Most of the time the nurse is not a George Clooney look-alike. And even if he is, this is hardly the situation you would want him to see you in. Anyway, next, the nurse takes a "pen" (read: sandpaper-tipped stick of death) and scrubs about 50 spot on your scalp. That's just the beginning. These prepared, now bald, spots are platforms for a sticky gel that does not come out with "a simple shampoo and condition". Did I mention the sandpaper stick of death make red marks on your scalp! After the gel is applied, the billions of electrodes are stuck to your head. I seriously could not picture myself looking any different than Hellraiser. Is this where Clive Barker got his ideas?....

Ok, now comes the fun part. The nurse lowers the lights and tells you to close your eyes (again, he does not look like George Clooney). You do, feeling a little more relaxed now that the scalping is through and your head is more or less numb. Then come the lights. A little light above your head flashes different colored lights at various flicker rates to make your brain explode. The nurse was not amused when I asked for club music. Luckily for me, the readings did not show the 3-hertz spike that is common for people with generalized seizure disorder. This is good, but also not surprising given my medication level. The nurse then removed my electrodes (so I technically did get a little bit of a wax) and lets me go into public with my hair thoroughly traumatized. When I was in high school and had to go through this, I was completely mortified that I had to be seen in public even for a moment with this hair. Sadly, this is still the case. The only difference is now I can legally go get a glass of wine after.

New Evidence Suggests Britney Spears Causes Seizures!

Ah the wonders of correlation vs. causation. Did you know that the average age of Miss America is directly related to murders by steam, hot vapours, and hot objects?! (courtesy of  Spurious Correlations http://tylervigen.com/ and no, I didn't ask for permission to reference this, but free publicity right? Also, if there is a problem with this, call me. Or call me anyways ;) ).

But I digress, Britney Spears gave me a seizure. Or, more accurately, her endless trail of photography stalkers did it. See I was on the luxurious couch graciously provided my by college dorm decorators while watching E! News. You could say right now, well you deserved what ensued. Britney Spears was on the red carpet and a million camera were flashing at her. This is a nightmare for those who are photosensitive. That's why I gave up my promising career as a starlet; I couldn't handle the flashbulbs. Well, the relentless hounds that provide my entertainment caused me to have a seizure.

My roommate, the same one who (whom? you can tell I have my masters and work as a technical writer) witnessed my bus ride episode, came to the room because she heard a banging noise. That was my flailing body knocking against the extremely comfortable furniture. I akin this to the time my father came outside to yell at me to stop yelling. There was a baby rattlesnake about to bite me. See, sometimes I'm not as dramatic as you may think. My roommate called the ambulance again. Of course I would too in her situation. Again, the nurse was mad at me. But I hadn't ben drinking recently (as in, the night before). All I was guilty of was watching trash TV (which I still do...shh). But I've learned that is the nature of having a condition doctors don't fully understand, at least in my case. It is my fault for triggering these seizures. I do accept partial responsibility. It is my brain after all. And what am I besides my brain?...more on this in a Cartesian post. But ultimately, I blame Britney.

I'll Have a Gin and Tonic Clonic Please

It is a well known fact that alcohol and seizures don't mix (this is not the beginning of a freshman essay I swear). But neither does college and sobriety. I had my first college seizure when I was 19. It happened in the least surprising of situations. I was in Las Vegas, deprived of both sleep and alcohol. I was on a charter bus with about 50 of my peers.

You may think that this was the most embarrassing moment of my life. Nay. In fact, it showed me how different college students are from high school and middle school students. No one laughed, no one shunned me, and everyone was concerned. Not to say that all youngsters are cruel, and not to say that people didn't make fun of me later, but at least everyone had the decency to not point and laugh. Of course, everyone could have been, and were most likely, drunk. Also, there was another, possibly more embarrassing situation for someone else on that bus ride. Let's just say it involved their alcohol-induced lust and a disappointing gag reflex.

Anyways...even though this had been my first seizure since I was 12, I can't say that it was the most depressing. I hadn't really gotten used to the idea of having epilepsy I suppose since it hadn't really impacted my life at that point. At least not physically. Confusion is probably the most accurate. Apparently (this word will come up a lot), my friend asked me if I knew who she was and I said no, and that's when she called the paramedics. Who were RUDE by the way. Side note: if you have ever had a seizure, you will know the amazing experience of pulling sticky electrodes off your boobs. At least I don't have chest hair.

Also, the post-seizure haze wasn't that different than what I had experienced the past week. To be clear, I do not condone, nor am I proud of, the decisions I made in college. I would like to meet someone who is. But it happened. And it continued to happen. And it will continue to happen to others. In conclusion (ok, maybe this is a freshman research paper), no matter what happens, there will probably more eventful things (and people) to talk about.

Episode 1: The phantom neurons

The typical 12-year old boy-craziness has reached it's peak. Two girls, silly with anticipation, have planned their wardrobe for the next day. Their plans to meet the boys down the street have been set in motion. But enemy neurons lurk, prepared for battle...

EXT. BEST FRIEND'S POOL
It is the night before April Fool's day and the girls go swimming in the heated pool. They talk about their plans to accidently run into the boys down the street. One boy is super cute. 

Eventually, they retreat from the pool.

INT. BEST FRIEND'S ROOM
They stay up until 2am, playing video games on the best friend's brother's Nintendo. They further discuss plans for tomorrow's adventure. Main character can't wait for the morning because the best friend's father always buys donuts. We learn the main characters priorities. 

INT. BEST FRIEND'S ROOM - APRIL FOOL'S DAY 2000
The girls wake up and start playing Lara Croft Tomb Raider on the Nintendo. Forever not remembered  by the main character, she gets up suddenly, collapses, and hits her head on the desk as the enemy neurons invade. 

Best friend screams and her donut-holding father appears in the doorway. He promptly calls 9-1-1. 

The main character comes to as the EMTs (she later remembers them as being in full firemen outfits, and even later as partially clad fire fighters) carry her to the ambulance outside. 

EXT. BEST FRIEND'S DRIVEWAY
Cute boy's mom runs toward the ambulance. The main character's parents stand nearby. The main character is mortified by her own nightshirt. She had picked out her regular clothes for that day so carefully! 

INT. AMBULANCE 
The paramedics ask the main character some questions to see if she is lucid. She responds appropriately. The main character thinks she is going to the hospital nearby. But they take her to a children's hospital. She is reminded of how people don't think she's old enough for anything. Her mind recedes into an epileptic fog. 

INT. CHILDREN'S HOSPITAL
A nurse thrusts a teddy bear into the main character's hands as they rush her to a room. (Director's note: the main character has since watched many episodes of hospital dramas so her memory is exaggerated.)

INT. HOSPITAL ROOM
The main character is fully conscious at this point. The rebel pharmaceuticals have temporarily restrained the enemy neurons. She still cannot comprehend the significance of the enemy neuron's attack. Her parents have brought her a Tiger Beat magazine with N'sync on the cover; her favorite band. They also snuck in a hamburger, a welcome diversion from the stale gram crackers and chocolate pudding. Children's hospitals and old-folks home are eerily similar.

INT. MAIN CHARACTER'S HOME
The main character has been released from the hospital. To her embarrassment, she is ordered to call family members and tell them about something they have never really heard of. She sleeps well that night, unaware that the enemy neurons are plotting their revenge.       

FADE OUT

THE END


side note: Dear Lucas, oh wait, I mean Disney, if I slightly alter a title is it still copyright infringement?