by Michael Finley
Copyright © 2001 by Michael Finley

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A Master of the Wired World?

I just got my author's copies of a new book from Financial Times Management (London), MASTERS OF THE WIRED WORLD: Cyberspace Speaks Out.

What's remarkable is that this collection of manifestos about the new age a'dawning contains proclamations by Tony Blair, Al Gore, Charles Handy, Nicholas Negroponte, Arthur C. Clarke, Alvin Toffler ... and me.

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Jumping in the Night

In a dream I am headed in a car with three friends across Saint Paul. We are going to a big meeting for a project we were part of. I suspect that our hosts are aliens, or some sinister force that has planted creatures in our bodies who at some point will blossom and be born, and kill us. We are living nests for their babies. But I am confident I can outsmart them.

As we approach our destination -- a school building -- the car descends a very steep hill, at an 80 degree angle. It is so steep the car actually falls to the bottom, where the road evens out again, the way a roller coaster does. Everyone in the car shouts out, "Whee!" like it was great fun to plummet.

Once we find the auditorium inside the school building, I become separated from the rest. Then I remember the sinister intentions of the alien group we came to meet, and I try to slip away. I hide in a stairwell, but one of the aliens, who appears to be a teenage girl, finds me and charmingly tries to lure me back to my seat. I tell her I need to go to the bathroom -- brilliant!

Now I am running away, though my running is clumsy and slow. A fat man steps forward to stop me and I slug him in the gut after much struggling. Then a little dog is assigned the task of fetching me back. I am running from the dog through a series of tunnels, and find a way up out of the tunnel, but my escape is barred by a couple of boards, screwed into place. While I pry the wood away with my forearm, I am kicking behind me to keep that little dog away. Get away, little dog, I am crying -- get away!

That's when I wake up. It's dawn, and the first rays of daylight are sneaking under the blinds, and I realize I have just kicked Rachel really, really hard in the shins. She looks at me with the level expression of a woman who as been kicked in the shins, but is worried more about something else.

I have just had a seizure, a big one.

I experienced my first seizure, a tiny baby of a petit mal, the day I came home. I was still in a low-level state of shock, and when I reached for a doorknob, one of the fingers on my left hand began to spasm. It was like the hand of a clock that shot from 3 o'clock to 8 o'clock, then back to twelve. And it did it all by itself. I saw it happen with my own eyes. Interesting, I thought.

After the first few nights, I see Rachel is taking an undue interest in my sleeping habits. I will wake in the middle of the night and she will be lying awake herself, with her arm over me, holding me close to her.

"You're still awake?" I ask.

"Can't sleep. Thinking about things. Hoping you're going to be all right."

"I'm going to be fine," I assure her. Pause. I recall wondering if she was to be trusted, as my online correspondents suggested. "Aren't I?"

"I'm trying to think it all through," Rachel tells me. "I think if we're lucky, we may just squeak by."

Meaning, we may never need surgery, we may never need to go on epilepsy meds, I may never be disabled, and my life will go on the way it used to. And I won't die for a long time.

In the morning Rachel tells me there is one thing that concerns her.

"What is it?" I ask. "The fact we can't have sex? Dr. Hoj says that will come back."

"You're moving," she says. "At night. When you sleep, you're all over the place."

I tell her I'm not wasn't aware of doing any moving outside the usual -- rolling over in my sleep, changing positions.

"It's more than that," she says. "You're like, jerking around in your sleep."

"Hmm," I say. "Like those funny jerking motions you make when you're drifting off to sleep, and suddenly you're driving a car into a ditch, and you slam on the brakes, and you almost fall out of bed?"

"Those are called myclonic starts. They're normal. But I think you might be doing something a little more serious."

"Well, what am I doing exactly?" I want to know.

"You don't have any idea?"

"No!"

"You're having little seizures all night long," she says. "I've been sitting up every night watching you. About 500 per night. You suddenly stiffen up, and it's like an explosion of neural energy. Sometimes you jump a foot above the bed. I'm worried you'll fall out of bed and break something."

The only nighttime seizure I remember is the one I just described, when I tried to kick the evil dog, and kicked Rachel instead. The other 10,000 seizures are news to me.

Well, there was one other seizure I remember, but it was a different kind. It happened when I was awake, in my office, about three weeks after my diagnosis. I was sitting at my computer and all of a sudden I got a whiff of a bad smell. I mean, a really bad smell -- like sour, sick menstrual blood. I could smell the iron in the blood, plus a fetid overlay, like blood-soaked rags dipped in bad milk.

There was no question in my mind that it was real, but I searched my desk area, I sniffed my clothes, I cupped my hand over my mouth to check my breath. I looked under my desk, and in the back drawers for a decaying mouse.

Truth is, I only smelled the smell when sitting upright and breathing normally. I was having an olfactory seizure -- consonant with the location of my tumor, along the saggital ridge.

We make an appointment with Dr. Hoj, my neurologist. I now have a team of my family doctor, Tim Rumsey, my neurosurgeon, Dr. Gregory, and a neurologist, Dr. Hoj. Hoj is a very smart, very decent, and very large. When I told him during our first meeting about experiencing pain during masturbation, he had quite a chuckle over that.

"Why is that funny? Do you have patients that don't masturbate?"

"No, I just enjoy having expressive patients. When you're in this work, that can be a novelty."

When we tell Hoj about the seizures, he orders a sleep-deprive EKG for me: an electro-encephalogram test conducted when the subject is tired in order to force you to have seizures, if you are seizure prone, by hyperstimulating your eyes and brain with a stroboscopic light show. With only four hours of sleep the previous night, I sit in the neurologist's chair while the technician attaches a kind of electric hairnet to my head. It is a net with about twenty electrodes connections on it. She has to screw each point into my head with something like a push-pin.

The effect of having twenty pinpricks in your skull is at least reminiscent of a crown of thorns.

Then wires are attached to the twenty points and the wires conduct analog input to a computer and graphing machine. For twenty minutes I stare into the psychedelic maw of unreason, as the machine does its best to provoke a neural damburst, and I do my best to keep my cool.

My score is ambiguous. Dr. Hoj assesses it as equivocal -- I either am having seizures or I'm not. "Just to be on the safe side," he says, "let's get to work defining a medication regimen that will keep this under control."

I don't want to go on the medication. I don't, don't, don't. It's because of the writing. I feel I have to be a certain way in order to write. I can write with a cold, I can write if the temperature outside is 95 degrees, I can write if there are radio reports of an escaped homicidal madman in my neighborhood. I can write if my checking account is overdrafted or if a presidential election has been overturned.

But I can be very sensitive to other conditions. I can't write if I am depressed. I can't write if I've just been jogging. I can't write if I am tired. I can't write if I am worrying about something. I can't write if I have had a beer. I can't write if I'm not sure who I am.

I am afraid, first of all, that if I go on seizure medications, I will be just different enough that I will no longer be myself, and my special little thing will dry up.

Beyond that, I am afraid that I will cross a line into a new country -- the sovereign nation of seizure guy -- and I will never be able to cross back to what I was.

And the things seizure medications seek to prevent, grand mals sweeping you away in your daytime hours, when you may be exceedingly vulnerable or dangerous -- driving a car, or performing surgery -- aren't happening to me. I am dancing in my bed, and one time I smelled something stinky. As long as Rachel's shins can take the pummeling, I want to continue as I am.

So I refuse Dr. Hoj's advice. A year later, I am still medication-free. The seizures have gotten neither better or worse. Sometimes, I am aware after a seizure that something just happened. Other times, I get a floaty, feathery feeling in my legs that I sense might be the prior sensations of a seizure -- that I'm a colt who has wandered outside the corral and is ready to kick.

I try to make the floaty, feathery feelings subside. But the fact is, you never know if you have a seizure coming on or not.

I think I have been a good patient over the course of my problem. But I rejected Dr. Hoj's advice, and I have never looked back.

My nighttime seizures have gone away. That isn't supposed to happen. My explanation is that I healed.

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