Scheherazade in Blue Jeans

Because I keep getting asked: no, it was not me who had a seizure at the con on Sunday. (One person actually ran down to my party to make sure I was okay!) Yes, I know who it was. Yes, that person is out of the hospital and doing fine. (Not IDing because I don't think they'd want that.)

The whole situation was handled very well. Fortunately, the person who saw the effects of the seizure recognized it for what it was and got the person to Ops; Ops knew who they were dating and were able to contact the SO; the person was whisked out by paramedics quickly and with a minimum of fuss; and everyone who needed to know was notified quickly. It was a clear-cut example of emergency response = you're doing it right.

But I wanted to re-post my tips on handling a potential situation like this, which is basically: I write on the back of my badge.

I think it was Readercon two years ago that first asked that people with medical conditions do that. I thought it was a great idea, and I try to do it at every con.

I should get stickers made up for the back of my con badge that say:

I have temporal lobe epilepsy. If I seem out of my mind, I am probably having a seizure. Please call Adam at $#. If the seizure lasts for more than five minutes, please call 911.
Other emergency contacts:
My MedicAlert #:

(MedicAlert will tell the nice paramedics what drugs I'm on and in what doses.)

I highly recommend this, if you have any condition that could potentially incapacitate you. And I'd love for it to become standard at cons, so people know where to look.

(The icon is because my seizure focus is my lesioned and wee left hippocampus. Sick hippo.)

I am getting a neuropsych evaluation to more accurately gauge the extent of the short-term memory loss and associated brain damage.

Yes, this is Yet Another Medical Thing, but -

This will be a tremendous help for the disability claim.

So it's progress. Forward motion. Getting anything like this done is like slogging through molasses - takes forbloodyever to make a step, and it's exhausting to boot.

But it's a step. A micromovement, as SARK would call it. But I'll take it.

My brain damage is very specific: mesial temporal sclerosis; scarring in my left hippocampus. (This page has good information for the layman; if you want to get more in-depth, check this one out.) The lesion causes the seizures, which worsen the lesion. Tick tick boom - never know when I'm going to seize again, and if it's going to cause further damage, and if it does, how much.

The past few years have been much like the end of Flowers for Algernon, just so you know.

But what this is about is memory. See, the temporal lobe and hippocampus are where memories are made, stored, et cetera. And since my damage is very specific, it's fairly easy to map out what's affected: Short-term memory. Long-term memory is okay. Ain't what it used to be, but I still know my writing, and I can still tell you coyote stories and Inanna's descent and the entire history of the X-men. But I have the very devil of a time with short-term memory. And I was able to map that a bit better on this trip, because I was surrounded by people who were unfamiliar with my breakage. Adam has learned to work around it pretty seamlessly by now. But Rose and Cat, S00j and K, were unfamiliar with it, so their reactions helped me build a more detailed map.

Basically, my buffer's broken.

This site has some good information on memory encoding. Basically, information enters. It hits the hippocampus, is buffered, and gets written to disk (long-term memory). In a normal person. My damage is such that the hippocampus does not have a bunch of the cells it needs to do this.

Example: I'm given a verbal list of instructions - say five items. Items 3 and 4 push items 1 and 2 out of the buffer without being recorded; item 5 pushes out item 3. Sometimes,if my brain realizes that it's being asked to actively record information, it dumps the core and I don't retain any of it. Example of this on the trip: Rose telling me where the saucers go, and me losing every speck of information from the buffer, having it just fall out, and having to get her to repeat the directions.

Verbal stuff is really hard. This is part of why I don't like phones - I lose most of the information you give me verbally. It just does not get recorded. This is why I prefer e-mail - I need to have that in writing, or I won't remember what we decided, or if we spoke about it at all. I save all of my chats, all of my e-mails. I write everything down. Because I cannot rely upon my brain to record it.

I hope the buffer analogy helps people grok this...

I fight to be this functional, y0. So please be patient with me if I need to stop to take notes, or request that you e-mail me something, or forget that I owe you e-mail, or, well, anything.

Long-term memory is functional. Spatial memory is good - if you show me where the saucers are, for example (and Rose did), I will remember. Interesting how many different aspects of memory there are, and what varied bits of the brain handle 'em...

EDIT: Another example - cannot hold instructions in my head from looking at the paper to looking at the jumble of parts. So assembling the Gazelle? Ummno.

Got the call... my Video EEG monitoring will begin September 6.

And I'm scared.

I'm not flailing-about talking-a-mile-a-minute scared. I'm quiet, pulled-in scared.

Spooky is going to try to come down and be with me in the hospital. If she can't, Gwyn says she'll try. My parents have also offered, but that's the nuclear option. We'll try to exhaust all other options first!

I forgot to ask if I'll have an internet connection. If not... well, I'll get a lot of writing done!

(And a lot of reading. I've told Mom that she needs to hit my Amazon wishlist.)

I will be allowed visitors. I would like it if people would bring me JavaMonkey chai and chocolate cake. Because hospital food sucks.

The procedure: They will be electroding my head. (I will have funny hair!) And fixing a video camera on me. All 'song, all the time. And they will crash me off my meds to provoke seizures. They'll also sleep-dep me, if need be. Basically, whatever they can do to deliberately throw my brain off the rails so they can record it happening.

I predict many tears. (I never used to cry.)

I also predict a lot of fibro pain, as lack of movement = bad for fibro. We'll have to see what can be done about that. And karlita, have you ever done massage in a hospital? :)

Here are some articles.

This URL is long.

http://www.emedicine.com/neuro/topic103.htm

http://www.epilepsy.com/epilepsy/testing_videoeeg.html

So. Yep. I'm just going to be in the corner being quietly terrified of status epilepticus, thanks.

One of the things that helps me write = reviewing the stuff I've written already. I am supposed to be writing and editing the epilepsy book. So. Here's a piece of it, previously published on TwoHeadedCat.com. Copyright me. My upfucked brain. :P

TIME MACHINE GO
It is unlikely that you devote much time to visualizing the interior of your brain. Not impossible, mind. But improbable.

Nonetheless:

Picture the brain as a clock.

You were reading/You were on the phone/You were putting your shoes on, and…

time machine go


…then you are inside the clock.

Trapped.

With the gears drifting.

See, the gears are how the thoughts happen. So imagine seeing the gears slide. Imagine pushing them together, trying, trying to get them to connect. Because if they don’t connect, man, you can’t fix this. If you can’t think…

And that’s the thing. You can’t think.

But you can feel your inability to think.

You are quite aware that you have lost the ability to form thoughts.

You know that if you can just get one gear connected to another, you can form a thought. If you can form a thought, you can get out of this.

And the gears are so close… but you can’t push them together. You cannot make them catch on each other. Like opposing magnetic poles. You can’t push them together, and the harder you try, the more impossible it is.

And you would cry, if you remembered what crying was.

Panic. Terror. Frustration. Isolation.

Floating in the gears. Floating in the noise.

You know that you can’t think.

You know that there’s an outside. You were just there. You were just lacing a shoe. You were just talking to your boyfriend. There was a world with other people in it. And internal consistency.

And it’s gone. There was an instantaneous side-step into this.

This isn’t going away.

Is this ever going to go away? Is your brain stuck like this? Why/how did this happen? How did the world fracture? How did you fall through this crack?

Was there ever a real world?

It’s been so long now. Twenty, thirty minutes, like this. You try, and you try – your boyfriend was right there. Can he see that something happened to you? Did you fall down?

Did you die?

Are you dead?

Is this hell?

Is this forever?

it is so quiet in here, sometimes.

Time stretches. And you keep trying. The gears won’t go. They won’t. But you can’t give up. You need to connect them. You need to be able to have a thought. You are capable of just enough to know that. That must be how to get out of here. If there is a way out of here.

If you can just parse a thought, you can free yourself.

How long?

How long has this been the entirety of your existence? How long have the features of your world been silence, inability, fear? An hour? A day?

You would scream, if you could remember what screaming was.

And

Then

You

Fall

Out.



The world is blurred, but it’s there. Your bedroom/your living room. The books are there. The boyfriend. But you’re so tired. So goddamn tired. And you don’t understand. So he tucks you into bed, and you have just enough capacity to think, “I’m not dead.

“So I must be losing my mind.”

Before you fall asleep.

It wasn’t an hour. It wasn’t a day.

It was five minutes.

Welcome to epilepsy.

Now that you have epilepsy, this is what to expect.

The gears. The visuals of axons and dendrites, now that you know that this is what’s happening – that you’re having random neural cascades, that you’re having electrical storms in your brain. The noise. Every sense wide open at once – and your consciousness shutting down. Too much input. Too much input. Too much input.

This will happen at random moments for the rest of your life.

And you know this now. You know that it’s a temporal lobe seizure. That you’re not dying or going crazy. That you’ll come back.

But during the seizures themselves – you will not remember.

Sometimes, you won’t remember anything.

Every so often, you’ll just… go sideways. And not know if you’re ever coming home.

(Yes, all you've been getting from me these days is science and perfume. I know.)

Septum keeps neurons in synch, can reduce epileptic seizures by 90 percent
Septum sets the tempo of brain's electrical activity

BETHESDA, MD (June 20, 2006) - The brain's septum helps prevent epileptic seizures by inducing rhythmical electrical activity in the circuits of another area of the brain known as the hippocampus, according to a new study in the Journal of Neurophysiology. The researchers found that, by imposing a normal "theta" rhythm on chronically epileptic rats, they could reduce epileptic seizures by 86-97 percent.

The study "Septo-hippocampal networks in chronically epileptic rats: Potential antiepileptic effects of theta rhythm generation," by Luis V. Colom, Antonio García-Hernández, Maria T. Castañeda, Miriam G. Perez-Cordova and Emilio R. Garrido-Sanabria, The University of Texas at Brownsville/Texas Southmost College, appears in the June issue of the Journal of Neurophysiology, published by The American Physiological Society.

The septum acts as the conductor, orchestrating brain impulses as they pass from the brain stem through the septum and on to the hippocampus, said the study's lead researcher, Luis V. Colom, of the University of Texas at Brownsville/Texas Southmost College. The hippocampus is a part of the brain that plays a role in memory, spatial navigation and sensory motor integration, among other functions.

Normally, the hippocampus oscillates at a frequency of 3-12 Hz, a frequency that is called the theta rhythm, Colom explained. Oscillations at theta frequency are important in processing and storing relevant sensory information and appears important to certain memory processes.

"My hypothesis is that the septum keeps the electrical activity of neurons within certain areas of the brain working within normal ranges," Colom said. "By keeping the neurons firing normally, the septum inhibits neuronal hyperexcitability, such as epilepsy, and hypoexcitablity, such as Alzheimer's disease." In addition, septal impulses may help to maintain the anatomical integrity of other brain structures.

( But wait! There's more! )

Grabbed from epileptics...

Transcendent Experience and Temporal Lobe Epilepsy

by Clifford Pickover

From: http://www.science-spirit.org/articles/Articledetail.cfm?article_ID=130
SEPTEMBER/OCTOBER 1999—Temporal lobe epilepsy has often been linked to a variety of transcendent experiences: ecstatic communion with the divine, epiphanies of artistic creation, fearful encounters with alien beings. Clifford Pickover examines some of the implications of current research now shedding light on the terrors and wonders of this mysterious disease.

( Read more... )

Right, then.

Having a disability, having chronic pain, chronic illness, is like having a whole 'nother relationship. A really bad one. *wry smile*

The disability - and that's how I'll refer to it throughout - monopolizes your time and energy. You end up having to give more time and energy to the disability than to any other individual partner - some days, more to the disability than to all partners combined.

It throws temper tantrums. It demands that you change plans with your other partners at the last minute: "Oh, you thought tonight was your date night, huh? Tough shit. It's mine."

It does not respect your safeword! It is not safe, sane, or consensual! *laugh*

You end up spending huge chunks of your day, your week, month, year, just "working on your relationship" with your disability. Trying different medications, different patterns of rest or exercise.

And there's nothing your other partner(s) can do about this, really. They can fetch heat or ice packs for pain flares. They can carry you to bed when your meds steal the ability to walk in a straight line. But they do not have veto power over the disability.

It is an abusive partner, and it cannot be negotiated with.

More later. Time for wee Shadesongs to nap. I welcome your thoughts and additions.

E-mail because I am sick (and tired!) of fighting through the secretary and the nurse and not getting to talk to the doctor, because when I do get to talk to the doctor, she agrees with me.

( cut because I care. )

Yeah. How about Depakote?

Oh! w00t! She actually replied as I was typing this!

( She says... )

Aaaand I replied that the drunkenness-stuff was happening before the Zonegran, so it ain't the Zonegran - thanked her for the Trileptal decrease - told her no more seizures & normal sodium.

*nod*

Okay. Starting tonight, hopefully no more slurring my words and flinging myself against the walls in order to get down the hall to the bedroom.

EDIT: Boom, baby! I have been called and offered a 1:00 appointment. Cancellation. They have assured me that I will be the first patient of this block of appointments seen (I told them I could not take the appointment if I was not guaranteed to get out of there by 2 for kid-pickup).

Okay. Today's a good day.

The book talks a lot about chronic pain and quite a bit about its sister, chronic fatigue. This part spoke to me, as it's akin to my brainfuckery.

Kamen writes:

-------------

One friend responded that in reading the article detailing the miseries of chronic pain, she kept thinking of Dr. Seuss's classic book Oh, The Places You'll Go!, a treatise on the natural cycles of life. In the book, Seuss described an inevitable unpleasant place, "The Waiting Place", where all of us are doomed to spend time when life is just put on hold and you can't do a thing about it.

I agreed with the observation that this is what having chronic pain is like, but then I also thought: To a chronic pain patient, The Waiting Place means more. It does not just represent a temporary stop now and again; it's a way of life. For when all else fails for a pain patient - when neurology becomes destiny, when pills and powders and positive thinking don't work - waiting is all we have left.

We wait sometimes for an hour to feel better, so we can then finish writing a report. We wait three nights to return a phone call to a friend. We wait a week to get the energy to scour a bathroom tub. We wait an entire summer to withdraw from a powerful drug, meanwhile moving through the edginess and tremors and insomnia and blurred vision that it leaves in its wake. We wait an entire year, pill by pill, to see if a class of drugs will work over time, in higher and higher doses...

In this process of trying to live in the moment, we face constant tensions and contradictions, many all at once: the struggle between pushing through the pain or ministering to it; the struggle to be dependent on others or stand on our own; the struggle to continue an expensive and time-consming treatment or move on; the struggle to accept our disability while not overly identifying with it; the struggle to take responsibility for our health, but then not feeling guilty when the pain persists.

And during this time, here is the real challenge: while we wait for pain to release its grip, we try not to put the rest of our lives on hold, and to manage to participate in other parts of life as best we can.

-------------

For "pain", read "brainfuckery"; this is my life.

australian_joe may've been right about this not being okay for me at my current ability level. Syill. I persevere. Almost to the halfway point. zarhooie takes over at 9 PM.

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