Brainstorm

T minus 0:40 seconds

The screen flashes.

My view of Moria has been obscured. Instead of the pure crystalline view of god-rays and water, I see a series of landscape paintings, interspersed one after another with frames of black.

"Crap."

"What's up?" asks Shawn, on the other end of the headset.

"My screen went stroby on me. I'm guessing it's my SLI dying."

Shawn says something consoling. I miss it. Black. White. Black. White. I'm overwhelmed with a sense of time dilation. It's not deja-vu. It's an oncoming freight train I know all too well. There's a lightning storm in the left temporal lobe of my brain. Again.

My palms burst with sweat. I feel vaguely nauseous.

T minus 0:35

"I, um," I mutter, knowing that my words are starting to slur. "Gotta go."

I push back from the desk. Time slows down. Moria. Black. Moria. Black. I'm still staring at the flickering screen. My hand moves slowly. I watch my right index finger press the glowing orange power switch on the lower right-hand corner of the offending black frame. It occurs to me, at a remove, that I could have turned my head instead.

Black.

T minus 0:30

Time speeds up. Everything is edges and flat planes. The white walls are supersaturated with the orange glow of the single incandescent bulb illuminating the basement. I stand up, steadying myself against the soft, soft wall.

But that's not right, I think. Concrete walls. Drywall floors. Ouch. I move for the stairwell.

T minus 0:20

"Jesnnn ..." I mumble, as the stairs roll underneath my legs and I float into the kitchen. Couch. Pillows. Carpets.

The couch is blue. Very, very blue. It's so blue that it's exactly like the sky in Utah where Jess and I retired to ski last year.

No, that's not right. I'm only 42.

T minus 0:15

Crimson Skies. I remember standing outside the loft in Boston 9 years ago. I pulled over the pickup truck and stared at the rooftops. Nathan Zachary was doing combat with heavily armed Zeppelins. I can hear the gunfire. I can smell the AvGas.

The sense of place is an ache. If I just think hard enough I can be in the plane. I can be Zachary, and there will be no game. There will only be me, and my plane, and the open air.

Jess is sitting on the too-blue couch with me. She's painfully beautiful. Her hands are calm. She rests her hand on my knee. Orange moves from her fingertips into my leg. Time slows down again.

"Sorry," I say.

"Shh..."

The world fades.

T plus 1:00 minute

Black turns gray turns blinding white turns blue. The plain blue of the couch. There is no orange climbing up my leg. There's no longing for that day in Boston which never actually happened. Time steps forward, the way I assume it does for everyone most of the time. I can't be sure, of course. I've long since given up any hope of understanding my sand-like perception of time.

"That was a good one, eh?"

I nod. "First time I've had the strobe thing happen."

T plus 10:00

I'm still sitting on the couch. Every muscle in my body limply hurts.

I return to the basement. Shawn is still in vent.

"I'm OK, but I think I'm done with LOTRO for a while."

He laughs.

T plus everything

The warning in front of virtually every video game has struck me as something of a dare these last 10 years. Temporal Lobe Epilepsy is usually characterized by long wind up periods (called aura), and fairly simple, nonviolent seizures. I rarely fall down, much less flop around on the floor and knock over wine glasses. As far as the outside world goes, I'm much more in the "cheap date" category of social misfits than the medieval "demonic possession" camp.

In other words, I've got the very best kind of epilepsy you can have.

My auras are intense. They're crazy dream-states of time-alteration, sense-intensity and quite often hallucinations so real it hurts when they leave. Most often, my auras (and I use the possessive with profound intent, I've come to cherish them despite their destructive capacity on my otherwise sedate life) contain imagery, scenes and stories from games. It's unsurprising, really. The experience of a game is far more intense, visual and engaging than that of most books or movies, and better fodder for a good hallucination than real life.

These alternate realities -- the game ones -- provide stimulation that is often nearly as intense as my auras. That sense of truly being a different person, in a different place, and perhaps most poignantly in a different time, is when games are at their best. Games can create an intense dream state. So it should be no surprise that my two dream worlds collide when the neurons misfire.

At my most peaceful and accepting, I tell myself that my auras are a gift. I can run the roll-call of hypergraphic writers and demented visionaries with my kind of epilepsy. I can think back on the stories that have been told in these 1-minute bursts over the last decade and be thankful for unique and compelling experiences.

But these are ultimately lies. Justifications I use to fund silver-lining expeditions into what will be, for the foreseeable future, a lurking cave of dream and doubt.

Comments

Fascinating little article, I'm not sure what to make of it apart from I'm glad to hear your ok.

Reminded me a bit of a Phillip K. Dick book I once read, where people were always getting struck by purple laser beam epiphanies. Valis, I think it was. Also serves as a valuable lesson for why one should avoid MMOs at all costs!

That sense of truly being a different person, in a different place, and perhaps most poignantly in a different time, is when games are at their best.

This spontaneous (for me) occurrence is one of my favorite things about this life. In my case, it's as likely to occur randomly while driving or just sitting around as it is to be triggered by a haunting midnight train, a Blake poem, or a game. It's really the crack that keeps me going back to Bethesda RPGs despite them eventually falling flat: there's always that magical period a few hours in where the world starts to become real and I'm the unconscious protagonist in my own open drama.

Nice article as always. Keep it up.

Great piece. Nice to be reminded that those warning labels do actually apply to people, and are not there just for legalese ass-covering.

But LOTRO? Why not just skip that part and go straight to banging your head against a wall?

Clemenstation wrote:
Reminded me a bit of a Phillip K. Dick book I once read, where people were always getting struck by purple laser beam epiphanies. Valis, I think it was. Also serves as a valuable lesson for why one should avoid MMOs at all costs!

Haha. Yeah, it was Valis. It was actually part autobiographical as Phillip actually believes that a pink light infused him with knowledge. Apparently he was convinced his son was sick even though there was nothing wrong with him, but after a bunch of tests they found something and had to perform surgery. It saved his life.

Interesting article, Julian.

Nathaniel wrote:
Great piece. Nice to be reminded that those warning labels do actually apply to people, and are not there just for legalese ass-covering.

I actually have very mixed feelings about the labels. My son also has peanut allergies, something else heavily labeled. The incidence of photosensitivity (not all of which will show as full on seizures, but does have a neurological effect) is actually a lot higher than you might expect: about 1.5 percent of kids through adolescents. But the ubiquity of the labels means nobody looks at them. It's not really the same as a label on a box saying "this has peanuts in it," because it's just everywhere. I doubt many parents ever even notice.


But LOTRO? Why not just skip that part and go straight to banging your head against a wall?

Now, now, don't be hatin'...

Really enjoyed this article, Rabbit. My favorite part, perhaps very strangely:

"Sorry," I say.

"Shh..."

As someone who has been and has been around people with debilitating conditions of one sort or another for most of my life (I have heart disease, and do volunteer work at a camp for kids with the same... recently went through major surgery and was unable to get much done for myself, and have always suffered very bad though infrequent migraine-esque headaches that leave me similarly incapacitated), I'm very in tune with this almost instinctual tendency to apologize for this uncontrollable thing, this need for help or comfort or protection, that even though your spouse / parent / friend / etc is perfectly willing to step in for, they can't truly understand because it doesn't afflict them.

There's a lot of layers to that apology. "I'm sorry to have effectively stopped your day without regard for what you were doing." "I'm sorry that this seems to happen so often and I don't know a way to 'fix' it." "I'm sorry I need you in a way you don't need me." (And that one is maybe sometimes more remorseful than apologetic.)

And of course, a person who loves you truly doesn't mind - as it should be - and Jess clearly doesn't mind for you, and the apology seems unnecessary to them. But the feeling is there every time, just the same. I would never wish my wife (or anyone) pain or infirmity, but I do occasionally wish there was a way to better understand something negative other than experiencing it for one's self, because it is a strange and unpleasant, and yet frequent and very intimate, one-sidedness.

Regardless, I'm glad you took the time to write this up. Take care of yourself, 'k? Moria ain't that good.

It's a truly bizarre experience. I suppose it's different for everybody - I certainly never found myself living a video game. I wonder if I should be jealous.

As your brain starts overloading, you begin to perceive things that are completely insane - reality warps around you in impossible ways. It happens in an instant, but it feels like an eternity - I suppose it's as close to a religious experience as I'm likely to ever have. I wonder if there's a drug that can replicate this sensation.

I had the "demonic possession" seizures as a child, for which they gave me anticonvulsants. I could never quite explain it, but the drugs themselves seemed to numb and skew my perception of reality in subtle ways. For years I went on like this, living in a sort of haze, until one day I just stopped taking them because I wanted to see what the world was really like.

I haven't had a tonic-clonic seizure in about 13 years now.

Every now and then, once in a very long while, I still get hints of what I think are aura. Bizarre sensations, almost indescribable - my attachment to reality stops functioning entirely as I expect. My perception seems to drift slightly, becoming detached from my body. To this I respond by generating a sharp pain - I tightly grip a knife or my house keys - hoping to shock my nervous system back from the brink of failure with a dose of cold, hard reality. I don't know if this really works to stave off the seizures, but I haven't had one since - so I keep doing it.

Thanks for your post. It almost makes me miss the experience. Almost.

Rabbit wrote:
But the ubiquity of the labels means nobody looks at them.

I find it quite disheartening how true this statement is. We go through life often ignoring or playing down things that potentially or most likely can be very debilitating or deadly. Two other examples come to mind... How many waivers have you signed to do something in the last year? Did you even read what the concerns were that you were sigining away fault for? I know the legalese is dense and immutable, but did you at least focus on what the concern for your safety was? I personally have probably signed 4 or 5 without a look. Note to self at least read the risk section!

The other time is the pooh poohing are minimizing risk that people do. When you get the 'Flu', you know you will miss a day or two of work, feel crappy and then move on. What you don't realize is how deadly it can be. The 'Flu' sounds relatively benign. You need to use its real name and you start to get the impact of what it can do to you ...INFLUENZA. Now that sounds way worse then the flu, and even sounds like it could kill you. "Three influenza pandemics occurred in the 20th century and killed tens of millions of people, with each of these pandemics being caused by the appearance of a new strain of the virus in humans. "

Now that is scary stuff that we write off as no big deal. It is amazing what we can let slide by for convenience or laziness' sake. To Rabbits points once the warnings are common and everywhere, they often work at a cross purpose to the original intent. See it, read it and then decide what to do.

Getting off my soap stool now

gore wrote:
For years I went on like this, living in a sort of haze, until one day I just stopped taking them because I wanted to see what the world was really like.

I haven't had a tonic-clonic seizure in about 13 years now.

...

Thanks for your post. It almost makes me miss the experience. Almost.

I had a very similar experience with my meds. When I first started having seizures, they put me on Dilantin, which is a big fat sledgehammer of a drug. I felt, for years, three-martini drunk. I had to exercise my ass off just to be able to concentrate enough to read. One day I just did the same thing -- weaned myself off the meds, had some withdrawal (fun), and then went years without another seizure. Even started driving again. Then a few years ago: bam, they're back. I'm on way, way better meds now (Lamictal) but they don't quite do the job. It's a trade off I consciously make to keep a little focus and not beat my brain back behind a vaseline-pasted window.

rabbit wrote:
But the ubiquity of the labels means nobody looks at them.

Yes, this is indeed a problem, particularly with the peanuts, as you suggest.

My $0.02: It's a symptom of a lawsuit-driven system of public safety, rather than letting sensible people make top-down decisions. If we had real public safety policy, instead of knee-jerk capitalism, we could simply tell manufacuters: "Put on the warning label if there's this much peanut in it, and you're safe." This might expose a very small number of people with very senstive allergies to more risk - but those people should be extra-vigilant anyway.

Ditto with the labels on the boxes - if you knew which games were EXTRA flashy, that might be helpful. But generally, all games will flash colors at you.

---Nathaniel the socialist

Fantastic article, rabbit.
I could see clearly the picture you painted, and I feel for you. I'm sorry you have to go through these episodes, even if it is "the very best kind of epilepsy".

Yeah, seizure meds are tricky. In the olden days (Rabbit, I'm looking at you :P) they were almost all just different forms of benzodiazepines. Meaning, Klonipin and Valium. Actually, they probably still are similar since they're all acting on your GABA receptors, which is the primary neurotransmitter that alcohol works on.

Btw, benzos are some of the hardest drugs to get off of. Just thought I'd throw that out there for anyone who's gone through that. It's hard and loooong.

Quasi-science class over and out.

Sounds like a BWgen trip. Doesn't work for me but I've had friends that swear by it.

Ravenlock wrote:
Really enjoyed this article, Rabbit. My favorite part, perhaps very strangely:

"Sorry," I say.

"Shh..."

This was also my favorite part, perhaps because I've been on Jess's side of things.

My wife has narcolepsy which, contrary to popular belief, doesn't mean that she falls asleep randomly but that she sometimes loses the ability to move. She looks asleep or unconscious, but she's really just trapped in a body that no longer responds to her wishes. It usually lasts for a few minutes but can last up to an hour, and whenever she comes out of it she always spends a few minutes apologizing. It breaks my heart when she does, because I want her to always know that I'd do anything for her. My life might be interrupted by her cataplexy, but it's really the smallest of small things.

It's sweet that you apologized, Rabbit, but I hope you know that the "Shh..." means "I love you."

rabbit wrote:
gore wrote:
For years I went on like this, living in a sort of haze, until one day I just stopped taking them because I wanted to see what the world was really like.

I haven't had a tonic-clonic seizure in about 13 years now.

...

Thanks for your post. It almost makes me miss the experience. Almost.

I had a very similar experience with my meds. When I first started having seizures, they put me on Dilantin, which is a big fat sledgehammer of a drug. I felt, for years, three-martini drunk. I had to exercise my ass off just to be able to concentrate enough to read. One day I just did the same thing -- weaned myself off the meds, had some withdrawal (fun), and then went years without another seizure. Even started driving again. Then a few years ago: bam, they're back. I'm on way, way better meds now (Lamictal) but they don't quite do the job. It's a trade off I consciously make to keep a little focus and not beat my brain back behind a vaseline-pasted window.

I was on Dilantin as well, and I'm glad to hear that you're not on it now. When I was diagnosed it was the preferred "first line" treatment, so when it seemed to be getting the job done they decided to stop tinkering and leave good enough alone.

After a while, I'd forgotten what it felt like to be *off* phenytoin, until I went out of state for a long weekend in college and forgot my meds. I made it through the weekend just fine, and decided then and there that it was worth a few seizures every now and then to be rid of the stuff.

In the sort of sheer stupidity I can only justify by saying "hey, I was in college!" I self de-medicated, only suffering a couple of minor seizures as I went through withdrawal, even continuing to drive through the process (at the time I'd been seizure-free for years on the Dilantin, so they allowed me to drive unrestricted while taking it).

I'm happy to be free from the seizures now, but it really does feel like something truly unique was taken away from me. In reflection I view them as more of a curse than a blessing, but there's more of the latter to them than I think a lot of people would expect or could even understand.

That within 10 seconds it is possible to go from normally functioning to the state you described here is really frightening. Talk about taking the bad with the good. You need some kind of device that detects flashing light at that frequency and kills your monitor power.

garion333 wrote:
Yeah, seizure meds are tricky. In the olden days (Rabbit, I'm looking at you :P) they were almost all just different forms of benzodiazepines. Meaning, Klonipin and Valium. Actually, they probably still are similar since they're all acting on your GABA receptors, which is the primary neurotransmitter that alcohol works on.

Btw, benzos are some of the hardest drugs to get off of. Just thought I'd throw that out there for anyone who's gone through that. It's hard and loooong.

Quasi-science class over and out.

Yeah, Benzos are bad news. One of the few drugs where withdrawal can actually kill you.

I've always tried to seek out the more immersive games, those where I can lose myself in the experience and fool myself enough to believe I'm actually doing something that I can't experience in my regular everyday life. Because of this I'll have these flashes of memory where I remember actions or places that I've never experienced but there's always this moment where I recall that it was all a game and not real. It sounds like when you have one of these seizures, that internal barrier separating real from game disappears even if only for a few minutes. Talk about the ultimate in immersion! I figure the rest of us will have to wait until holodecks...or senility.

Thanks for another amazing story, O long-eared one.

Another great article Rabbit!

I think you and Jess may be two of my favorite people I've never met.

My mother had epilepsy, but she would just black out immediatly. I wish I could share this with her, but I'd have to explain too many video game references.

Great article, Rabbit. Although I've (kind of) known one or two people that have epilepsy, I've never witnessed a seizure, not to mention know what it's like. Your detailed descriptions generate a very vivid idea of the experience, at least for you. Even though you downplay your epilepsy, I'm sorry you have to put up with it. Hopefully episodes like this don't happen very often.

rabbit wrote:
I'm only 42.

Nice try, oldie.
(I can kid because I'm only 38)

Another excellent and profoundly personal contribution.

Wow, that was very powerful reading, since I'm also listening to the masterful Waltz with Bashir soundtrack at the same time as reading this. You almost romanticise the experience of having a seizure to an extent where I want to see how it would feel...without having an actual seizure. Disturbing, and affecting stuff.

Interesting stuff. Julian, I've always felt bad about your epilepsy, but now you've managed to make me almost jealous of it in a way. I never realized what it must be like from your end of things, that the silver lining of that particular dark cloud was so shiny.

Powerful stuff. Considering how much of my life is spent in front of one type of screen or another, I can't imagine having to be worried about something like that. My son's seizures are very different, even from the outside. With him, it is far more like the Hulk. It just sets off and then you're ground zero for the next couple minutes. Afterwards, he's confused and scared for quite a while. He doesn't remember anything. Kneeling with him in the tattered shards of whatever he tore apart this time and holding him as he cries is so hard. Not because of what he did, but because I'm so angry he has to go through it. He was one some very heavy meds for a lot of years, but stopped growing like a weed the doctor was able to stabilize him on some much lower doses. He hasn't had one in over two years.

Thanks for sharing your story. I'm also epileptic, but the "fall down, flop around on the floor and knock over wine glasses" type. Fortunately I only had a few before getting on meds that control it (and I don't have to take a debilitating dose of one of the nastier meds). I wish my auras were like yours... I would have about 5 seconds of dizziness and nausea and before going out of it and then I'd wake up with a chewed-up tongue and I wouldn't be able to talk because I was so confused. My brain wouldn't process anything for hours and I wouldn't be back up to snuff for a couple of days. Not a pleasant experience and one I hope to never have again.

Sorry, I just started reading, but didn't you mean

""My screen went stroby on me. I'm guessing it's my SLI dying."

Shawn says something console-ing."

Hah! That's exactly how i read it the first time.

Beautiful and frightening.