Tuesday, April 29, 2014

When I Say Ghost

"As far as I know." 

That's the best I can do. I've had six seizures in my life.

As far as I know. 

An exact count is impossible, I've been told, because seizures often occur during sleep. My first seizure was hard to diagnose for that reason. My family couldn't wake me up the morning after Christmas when I was 10. There are other reasons a person might not wake up. To determine epilepsy, multiple seizures must occur. 

My neurologist labeled that first seizure a night terror. Or try it this way: the nightmare that won't let go.

My parents were insistent on epilepsy.

There were tests. I became familiar with electrodes. Sleep was deprived so that seizure activity could be induced. I was a patient child. I slept in machines.

My parents were right.


No one called it a ghost. But like a ghost, the seizure was there, then gone.

I can't shake this haunting even 20 years on.


Storms arise. The clouds change from blue to yellow. I, too, get hints before disaster. 

The medical term for the preface to a seizure is "aura." I experience an aura. The word is accurate in the way it conjures a dream. Or the other one. A night terror.

My brain remains active during the aura. I observe and respond. I watch my own arms rise up, independent of my command. I attempt speech, but my words don't have skeletons. They become jellies drooling from my mouth. I chew on my tongue. I forget to breathe. My eyes plead.

After that, I don't remember.

Yesterday, my partner, Josh, witnessed my sixth seizure. He'd never seen me have a seizure before.

"It was your eyes," he said. "I knew you could see me, but you couldn't ask for help." 

When the aura hits, the likelihood of turning back is slim. But it's there. Some people don't receive a warning. If luck enters at all, it enters here. I'm given time. If I know I'm about to have a seizure, I can fight it. That's what my eyes were saying to Josh. 

"Make me fight it."


The triggers are numerous. Repetitive lights and sounds. Stress. Lack of sleep. Increase in body temperature. Rapid release of endorphins. It's impossible to isolate a single reason because the underlying cause is deeper. The blame lies elsewhere. I have epilepsy. That blame extends back into my family history until "blame" ceases to have any real meaning. No one intended I have seizures. These genes were handed to me in the dark, and if it were possible, that's where I'd keep them.

Except yesterday was a sunny day in April. I'd just run a 5K. My body told me to take a nap. Instead, I looked back and forth between two computer screens. One of the computers wasn't working how I wanted it to work. I rebooted the system again and again. That only struck me as extreme when the computer began to ask my permission.

"Are you sure this is what you want to do?"

Of course, I thought to myself.

And then, doubt. 

As far as I know.

Enter the unexpected spotlight. The aura.

I ran to the bathroom. My body was the battleground, and if I could watch myself in the mirror, I could lead the charge. The impulse was ridiculous. I didn't make it to see my reflection.

As relayed to me later by Josh, I yelled out nonsense and hit the floor. There was dust on my face and blood in my nose. A tendril from the plant in the windowsill curled around my chin. Josh moved the plant. He said he could tell it was bothering me. By that point, there was no me to bother. The "me" had gone black. My frontal lobe, the place where my personality is generated, was hit by too much electricity. I became a simple machine running numbers.

Boot. Reboot.

Are you sure?

As far as I know. 

I was gone. Josh inherited my emergency. He took out his phone and called 911.


When I first come out of a seizure, I'm not really awake. I function, but that's not the same.

The paramedics arrived five minutes after Josh made the call. They took my blood pressure and asked me questions. My name. My birthday. If I'd like to go to the hospital for further medical treatment. I knew my name, and I knew my birthday, and I knew I didn't want to go to the hospital. I signed a touch screen. My signature was bad. I scratched it out. 

"Sir, would you like to try again?"

I tried again, this time in a child's cursive. Every letter was clear. 

Josh says. 

I don't remember any of it. 

After the paramedics left, Josh walked me to bed. He said my jeans felt wet. He offered to wash them for me. I emptied the pockets. Another act I don't remember.

I remember going to sleep. I remember waking up three times to vomit. I remember thinking, "Not again." Four years had passed since the last one. The story I'd told myself began and ended with, "You're mended." I held tight to that lie. Every seizure was the last seizure if I was strong enough.

I see the danger in that type of thinking, and yet I can't stop.

At midnight, Josh woke me up to eat. I'd slept all evening. I ate dry cereal and worried over the cost of the ambulance. I never would have called 911. I didn't see what Josh saw, though. Maybe I felt the seizure arrive, but Josh watched it travel through me, and then he watched it go. 


During college, I was medicated. The medication offered uniformity. I took one pill in the morning and one at night. I was free of seizures. I became romantic about my disability. 

Around this time, SMITH Magazine started their six-word memoir project. My posted memoir from 2009 reads, "My seizure disorder is still poetic." 

Again, the need to control the narrative. I had the pill, so I had the weapon. 

More fighting.

Weapons aren't always precise. Seizures are wild. The pill was a blanket that covered more than my epilepsy. I became soft. I became timid. I became tired.

I forgot to take my pill one morning. The seizure arrived that afternoon. Here was the deal I didn't know I'd made: On my own, I could go years between seizures. On the medicine, I could miss one dose, and I'd have a seizure the same day.

I didn't like the bargain, so I quit. I weaned myself off the pill. 

All those years, I'd been safe looking out a dirty window. Now the window was open, and the danger was real. 

Lightning strikes.  


There are tricks. 

If I feel an aura coming, I can close one of my eyes and discourage the seizure. Something about the flow of visual information to the brain. The point is I'm my own medicine now, and I'm not always fast enough. I try to balance my existence as both the problem and the solution.

Josh is afraid. Today, he asks how I am. He hugs me a lot to make sure I'm the "me" he knows and not the other me, the ghost he only met once.

I ask him what it was like. How I looked. How I sounded.

He won't say. 

I feel the remnants. My legs and arms are sore. My tongue is numb. My jaw aches from clenching. There are bruises on my chin and left elbow. 

I fought myself again and didn't lose.

When I say ghost, this is what I mean.

Sunday, April 13, 2014


For a place with so much history, Los Angeles appears to have been built yesterday. I wasn't in a city so much as a spilled box of Lego bricks. The links were sloppy, but a connection is a connection. I walked four miles to lunch. The sun turned my neck and nose pink. I never felt the burn. In a similar way, I stared out at the ocean, and for the first time in my life, I didn't feel the water beckon me. I felt it push me away.

Everyone out there has a solid reason to be out there. Otherwise, they'd be somewhere else. My reason was my friend, xTx. She read Thursday night. Two of my other friends came along. None of the three had ever met each other. We stood in a timeline. Abbi was high school. Chelsea, college. xTx, now. And of course that's too simple. Let me explain.

I met Abbi on a choir trip. We shared a moment of recognition. Friends forever. Friday night, I dreamed we were on a bus looking out opposite windows. I saw a haunted high school and began to tell Abbi the story of its most tragic ghost. Abbi didn't turn to acknowledge the school. She said she knew the story, and she was looking at the very place where it all happened. I turned and looked out her window. There was another haunted high school across the street from my haunted high school. What are the odds? We are the odds. A teacher once told us friends made in high school don't last. As if to spite him, we happily endure.

In college, Chelsea and I drove south to the place where three states meet and legend has it the Devil takes moonlit walks on an old bridge. Each night a spectral orb floats over the road. We witnessed the orb and were fascinated. That wasn't so long ago, but it gets longer ago every day. I miss Chelsea. She's good weather. She never stays anywhere long.

xTx. The hours we're together are the best hours. Thursday night we locked arms and joined hands and hugged like we were dying. I was sent to surprise her. She was surprised. I held her drink while she clapped for other readers. She whispered something in my ear, and I laughed at the same time someone told a joke that wasn't funny.

Stars aligned. Mars appeared brighter than usual. Fog rolled in, and the pastries were incomparable. On the way home, my flight dug through a thunderstorm. I was in the clouds with lightning, and I was aware I wasn't electric. 

These people jolt me.