Document documentation by KristinawithaK
June 2nd, 2008 10:26 PM / Location: 37.762968,-122.4598Documenting the Documentation of My Brain
A sojourn into the recesses of my mind
Hello all,
As you read this (as long as it isn't past June 10th or so), I am slouched in a hospital bed staring at my laptop. My eyes are burning from the constant glow of the screen and all the while, the activity in my brain is being recorded..... 24/7. Where am I? The UCSF (Univeristy of California, San Francisco) medical center on top of Mount Sutro. Why am I here? I guess I'll just cut to the chase: the activity in my brain is being documented for seizures. Yes, seizures. I have a certain type of epilepsy called Temporal Lobe Epilepsy, a seizure disorder that develops in the temporal lobes of the brain. Let's consult wikipedia for a little description:
Simple Partial Seizures (SPS) involve small areas of the temporal lobe and do not affect consciousness. These are seizures which primarily cause sensations. These sensations may be mnestic such as deja vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity), a specific single or set of memories, or amnesia. The sensations may be auditory such as a sound or tune, or gustatory such as a taste, or olfactory such as a smell that is not truly present. Sensations can also be visual or involve feelings on the skin or in the internal organs. The latter feelings may seem to move over the body. Dysphoric or euphoric feelings, fear, anger, and other sensations can also occur during SPS. Often, it is hard for persons with SPS of TLE to describe the feeling. SPS are often called "auras," and are sometimes thought to be preludes to more severe seizures.Now y'all may be thinking, amnesia? tunes? sensations in the internal organs? preludes to MORE SERIOUS SEIZURES??? Ok, so my seizures really aren't as varied and complex as mentioned above, but they are intense nonetheless. Here's a description of my seizures:
I can be anywhere. In bed, eating lunch, walking to class, hanging out at the beach, having sex, brushing my teeth...you get the picture. In short, they are sporadic and they don't happen until they happen (I don't experience any warning signs). So what are they like? Let's pretend that I'm folding clothes and putting them into my dresser. All of a sudden, a flash of memories and images flood my brain, causing me to stop what I'm doing and lean against the dresser. However, these memories/deja vu aren't recurring images from real life, they are actually visions of my dreaming life. As if I were lucid "waking" rather than lucid dreaming. I "see" (remember) an interaction between two people or some sort of scene in a dream and for some reason, everything that is going on in the seizure somehow connects with the outside world around me. They don't last that long, maybe 20 seconds at most, but when the feelings die down, I get a rush of butterflies and feel really exhausted for the next hour or so. I remain fully functional and coherent during the seizure but come on, transcendental/hallucinogenic experiences are very draining.So the story goes, I was six years old when I was first diagnosed as being epileptic. However, not too much was known about temporal lobe epilepsy back then, so I was diagnosed with and treated for a different type of seizure disorder. Anyways, I grew out of them around 10 years old and thought that they wouldn't come back. Well, 10 years later, they followed me to Vancouver where I went to school for a while. Actually, the epilepsy showed its ugly head the first week I was there. I ended up remaining in Vancouver for about 4 months but then came back down to California for treatment. I am now on an anti-convulsant called Lamictal, a drug also used for Bi-polar disorder but....it kind of makes me feel like a dumbass. I've been on the drug for for almost two years now and I feel as though many of my mental processes have slowed. I don't feel like I have the eloquence that I used to and my performance in school has suffered as a result.
Anyways, my neurologst suggested that I undergo a procedure called "videography" where doctors observe the patterning of my brain waves during the event that I have a seizure (they will take me off the meds first). This would enable the doctores to pinpoint the exact location of my seizures so as to suggest an alternate or more appropriate treatment. So here I am, waiting for the seizures, watching Indiana Jones movies and gazing out at Sutro whose three pronged crown peeks over the top of Sutro woods. All in the name of...
SCIENCE!!!!!!
Tidbit: A number of well-known writers and artists are known, or in many cases suspected to have had temporal lobe epilepsy, aggravated, in some cases, by alcoholism. They include Charles Dodgson (a.k.a. Lewis Carroll), Edgar Allen POe, Fyodor Dostoesvky (whose novel The Idiot features an epileptic protagonist, Prince Myshkin), Gustave Flaubert, Philip K. Dick, Sylvia PLath and the contemporary author Thom Jones.
COME VISIT ME!!!! (contact me for details)
Day One: 6/2/08
I woke up in my little home in the Berkeley hills and set off for San Francisco with my mom at 7am. My mom had never crossed the Bay Bridge and she giggled with glee when the Golden Gate came into view on the skyline. As expected, there was morning traffic and lots of grumpy people lined up to pay their $4 bridge toll (which will soon go up to $5...). Anyways, it only took us a mere 30 min to reach the city and we then made our way to the hospital.I checked in at 9am, bread and brie in hand (don't ask) and was led to my room. I was pretty impressed with how spacious it was, nice big windows, lots of seats for visitors (hint hint!) and my own bathroom. Anyways, the doctor came in and told me that the procedure (attaching the wires to my head) would take about two hours. TWO HOURS??? Didn't they just have to glue them on and be done? Well, it DID end up taking two hours...
First, the doctor separated my hair into sections and attached contact points for the 22 wires that would eventually grace my scalp. Then she individually glued on the wires, each taking about 5 minutes to affix (the glue had to be dried by a really loud hand dryer). 
I remember waking up to her saying "We're halfway done!" so I looked up at the clock and it had indeed, been an hour. After all the wires had been applied, each one had to be taped to my hair or face so they wouldn't get caught anywhere. I now have a big bunch of colorful wires cascading down from my head. Oh so stylish.
There are a few perks but lots of pitfalls to this whole situation. The perks: decent food! Lot's of time to waste on the computer (I have an excuse now), the 3 Indiana Jones movies, visitors, 8 Ray Bradbury books (I'm a geek...) lots of phone calls and absolutely no self-consciousness! (Come on, I look like a science experiment gone wrong).The pitfalls: I can't leave my bed without calling the nurse so I can't go to the bathroom by myself (I had to pee REALLY badly about an hour ago but no one came for 10 min..), the bed is controlled by air pressure that responds to movement (so whenever I move, air gets pushed into the spot I was originally laying on. It's really annoying), I have a camera pointed at me 24 hours a day to "moniter" me in the event that I have a seizure (not that my seizures have any physical side effects...)
I have to wear an IV in my hand "in case of emergencies" although I'm not sure what kinds of emergencies they're expecting
but I do get to wear this cool wristband that says "FALL RISK" because they don't want me to fall while getting out of bed (?)
So other than the not being able to leave my bed thing, it's not so bad here. For some reason, the door has been left open so whoever passes by ends up glancing into my room. I've made a couple people stop and look startled by my Frankenstein'ish facade. It's great.However, I think it's all worthwhile, not only because I'm going to get a better understanding of my condition but because I see this whenever I look out my window:
Can you see her? :)
Day Two: 6/3/08
I met the lady behind the camera this afternoon. You know, the person who is constantly monitoring all that I do from above the foot of my bed. My 24/7 demigod if you will. She's a god in a red pant/sweat suit with orange flames going down her sides and has a touch of a New York accent on her lips. She came in and told me that my laptop was causing too much noise for the machine mapping my brain and so I asked her, "Are you the one who sees everything I do? Like....when yesterday I was wiping my nose on my sheets?" She sort of just stared at me for a sec, completely blank faced. "Uhm, yea, I'm doing the rotation tonight."I don't think she appreciated my honesty.
So today came at a rough start. I remember I kept on waking up to people murmuring, "Oh hello Kristina! I am Dr. So and So..." And then I'd fall back to sleep. This is my grrr face:
I remember someone coming in and asking me why I hadn't gotten my breakfast yet? I shrugged and fell back to sleep, only to be awoken by the same question a little later. It was 7:30am. 7:30???? What did she mean by "yet"? After coming to and fully waking up, I realized that my face felt like it had been peeling and cracking. I touched my face and realized that it was the tape/plaster/bandage that was holding on a few wires. They hurt:
I then looked out the window and saw this:
Blah.Fortunately, I had an extra special visitor and we ended up eating chocolate, watching Edward Scissorhands and drinking a much needed cup of tea. Here's the aftermath:
After all that fun stuff, I had to get re-IV'd because the one in my left hand was hitting a nerve:
So I had it transferred to the other side:
(I found the pain more endurable by actually taking pictures of it as it happened)Unfortunately, I wasn't able to snag any documentation of the actual documentation taking place (of my brain) but worry not, it will come one way or another! However, I have definitely started noticing the withdrawal effects.
When I go through withdrawal, my hands start to go numb and tingly and I have to keep re-focusing my eyes: everything starts to go a little fuzzy. For example, I have to type extra carefully because my fingers keep sloshing all over the keyboard. I'm also starting to feel slower and slower....even my face feels a little numb.
Fortunately, Lil V (my sis) and my dad came to hang out for a bit. My dad said, "Oh no! I forgot to color my moustache!"
They were totally awesome and were able to manage staying almost two hours after visitors hours were over. However, it was when my sister led me to the bathroom that I almost had my first "FALL RISK" moment...Any time now, I think, anytime now.... Where are all the damn seizures?? I've definitely been through up to two days of not having my medication before but when you're simply just waiting for them to happen, well....time seems to run thaaaaaaaaaat much slower. I'm currently undergoing sleep deprivation right now and I must stay awake until 5am. I must then me woken up at 7 and then only allowed 2 hour naps throughout the day tomorrow (6/4). This is what I have to say to that:
So yes....another 5 hours to go.....Indiana Jones? Wizard of Oz? Willy Wonka?.....more sf0?ENTERTAIN ME, DAMN IT!!!!
Day Three: 6/4/08
I pretty much slept the whole day after NOT sleeping last night. No seizures. No pictures. No progress.FAIL
Day Four: 6/5/08
Shananigans and some more.
Day Five: 6/6/08
Camera died....nooooooooooooooooo!!!!
However, I did get to have a pretty epic tea party with my British Grandma. But still no seizures...
50 vote(s)
- Sparrows Fall
- Levitating Potato
- help im a bear
- Gremlin
- heather galaxy
- Lincøln
- Ben Yamiin
- GYØ Vicki
- Julian Muffinbot
- Tøm
- star5
- Darkaardvark
- Flitworth
- Flea
- Scarlett
- Dax Tran-Caffee
- a actinism torrents joins
- Secret Agent
- Burn Unit
- The Animus
- H L
- Loki
- Kyle Hamilton
- GYØ Ben
- susy derkins
- JJason Recognition
- zer0gee
- meredithian
- Not Here No More
- teh Lolbrarian
- Rainy
- Jellybean of Thark
- Myrna Minx
- Bex.
- Ink Tea
- JTony Loves Brains
- teucer
- Minch
- Blue
- Magpie
- Spidere
- praximity
- Vena Nightmare
- Evil Sugar
- Adam
- Optical Dave
- Terpsichore
- The Vixen
- Morte
- gh◌st ᵰⱥ₥ing
Favorite of:
Terms
hospitaltasking, everyoneshouldsee39 comment(s)
The first thing I asked the doctor was if I could see the images. He said "Why yes of course! We will show you when you have a seizure!"
I'm hoping he meant after I have a seizure :)
Maybe we should make some of those wrist bands and hand them out. Some people may need constant reminding like that.
I kinda want a t-shirt in that color with a big "FALL RISK" on the front.
even better. stenciling party?
and actually, fall risk can have many levels of meaning... i mean, let's say your a bit of a romantic, like some may be.... fall risk still works
I'm always a sucker for the very personal praxis.
the very personal praxis that involves copious amounts of science...
Aww!
I love this, Kristina. And the description of your seizures is really awesome. Lucid waking. Interesting.
The red one in the middle looks like a tilak. Didjya do that on purpose, ya Indian?
(I know, I know, you're not hindu, etc, etc...)
Ahaha, no...I think they used it as some sort of marker for positioning. I rubbed it off a few hours ago (!)
Probably a week or so.
....the doctor said "You know, a week. Or indefinitely."
I was like, wtf you muthafucka?
If it makes you feel any better, I have a small blister on my finger from a recently acquired grease burn. . . .
Doesn't cut it? :: grins ::
A suggestion to anyone visiting her (you), bring in a strobe light when you ask for a room number to see if anything happens.
"Yeah, Kristina with a K? She's a seizure patient. 503? Great. Oh hey, do the rooms have outlets? :: holds it up ::"
As for your health, I'm too intrigued by your condition to hope that you get better. Though I prize my sanity (ha) above all else, I would try to explore those 'moments' more. Then again, given the after-effects, perhaps not. Very strange..... Let us know the test results and whatnot.
I miss you.
Get cured quick, kay?
P.S. Are those seizures anything like the ones I have when I pass out from fear or pain and convulse unconsciously while seeing my life flash before my eyes and experiencing a seemingly timeless realm that feels like death and then I wake up totally exhausted and lonely and small and alienated and aged?
I'd like to apologise on behalf of Vancouver for provoking the relapse. Damn.
Hope they don't keep you chained up there too long, though at least the wire braids look hip as fuck.
(would totally visit were it not for oceans and such)
Laying in a bed with a rainbow coming out of your hair, under constant surveillance from a little white video camera, in the shadow of a monstrous tower, waiting for an unpredictable occurrence to occur, eating brie, with eyeliner... I saw this in a comic book somewhere. Are you in a comic book?
I wish you happy seizures. And fond memories of the last one I had the opportunity to witness.
Did you really witness one?? Where was I? Why don't I remember it??
I love me them hip wires.... :)
Aw, honey, you wear those wires with panache!
Cheering you on, you and your friend science, and best wishes for having a seizure while being monitored. (Hmm, it would be awesome if they could teach you to have voluntary control over the timing)
You think she should go see Professor Xavier?
Everyone else has beat me to saying it, but dang, you make wires hanging out of your hair look real cool. I expect all the cool kids will be wanting to do it soon.
Eating fine cheese, and watching Indy under the eye of Lady Sutro, very nice.
Hope you're out of there soon.
Hey Fall-Risk, I think I'm gonna go vote w/ my feet. Which room are you in?
I'm in Room 807 in the Long Nurse's station on the 8th floor of the UCSF Medical Center.
Visiting hours are from 11am-8pm.
COME NOW!!
Hey guys, thanks for all the positive words!!
The internet has been down all day so I've just been reading some science fiction, watching edward scissorhands, doing some tarot, making faces at the video camera and twiddling my thumbs until I could sign in again.
So no seizures yet...I've been dealing with a little withdrawal but I foresee it to hit me in full force by tomorrow.
Look for a proof update by later tonight.
No! Don't eat those wires! Those are probably important.
Anyone up for an sf0 group visit and some tasking from a hospital room? Thursday late afternoon / early evening, maybe?
possibly. I'll be biking from the sunset sometime between now and then. I wanted to make it today, but fail. Insomnia gets me every time....
(Like you, the gummies also like to gnaw on their wires.)
SEIZURE GUMMIES!!!!!!!!!!!!!!!
YAY!
That's so hardcore.
FREEDOM!!!!!!!!!!
Wires off, Dad on the way and I finally get to walk!!
Never did have a seizure though...
Nonsense. :)
Also, I expect to later see some sort of EEG or other brainscan for brain documentation.