Kara
INTERVIEW WITH AN EPILEPTIC

by ANTERO ALLI


I became acquainted with Kara Amundson in the autumn of 1990 when she played solo cello for our theatrical performance of Rilke's lament, REQUIEM FOR A FRIEND. The night I shall never forget began at Kara's house after I arrived to drive her and her cello to the performance. We were running a little late that night and, true to form, I began succumbing to my usual bouts of "director's anxiety." Kara was still looking for her things. Then, she appeared and stood in the hallway apparently ready to leave. But she just stood there. Looking at me. Fixing her gaze onto my eyes. This felt immediately strange; I knew Kara as a very shy person. I asked her why she was looking at me like that. No response. I asked, again. Still, no response. Both of us now stood there, transfixed. And then, in a heartbeat, Kara spiraled down -- no -- it was more like a huge force of grace spiraling Kara down to the ground where she exploded into a massive stream of spontaneous convulsions. I stood there, paralyzed. A violent force of nature was now possessing my friend and there was nothing I could do about it. Feelings of helplessness engulfed me as I watching her head banging against the floor, blood running against her cheek... her body thrown by the silent rhythms of a grand mal seizure. At this time her roommates appeared and assured me there was nothing anybody could do and that she would eventually wake-up on her own time and come to terms with it. In shock, I was in shock. The look in her eyes, it seemed to transfer some of itself to me. I was still standing but my nervous system felt shot. I left for the performance. Shaking, I announced her absence and proceeded to offer my reading of Rilke like I've never read before.

ANTERO ALLI: How would you describe yourself ?
KARA AMUNDSON: I'm a person upon whom fell a profound unconsciousness. From a very early age, I didn't really know other people existed. I mean a part of me was watching all the time but I wouldn't allow myself to have emotional impressions. At the same time I'm a person who does feel things very deeply but wasn't allowing myself to feel these feelings. After awhile, something just had to give and what gave in me was my neurological control.

AA: So you're describing an early life of withdrawal from people ?
KARA: Yes; it was purposeful on my part. I withdrew. And then, I was called back. Something said it's time now to come back. Epilepsy was the method that brought me back down to earth.

AA: You believe your epilepsy was a reaction to your self-imposed isolation ?
KARA: Yes. The physiological effect of not feeling my feelings for thirteen years was somewhat volcanic. As a kid, volcanoes were the only thing I was afraid of where there were no volcanoes around and where there were plenty of other things I should've been afraid of but wasn't.

AA: When did your first seizure occur ?
KARA: I had just turned fifteen. It happened in church in the presence of my peers, my mother and my father. At the time nobody knew it was an epileptic seizure. It was "an event" and it was really shocking to everybody there. Later on, the doctors told me it was epilepsy.

AA: Two clinical terms, grand mal and petty mal. What kind of seizures do you have ?
KARA: Only grand mal. Those are the big, really overt seizures. I've never had petty mal.

AA: Over the years, how have your doctors explained the phenomena to you ?
KARA: Doctors are fairly reluctant to talk about it because I don't think they really know. What they have told me is that electricity in the brain stops following the pathways that it follows for the orderly process of bodily functions to take place. The electricity then gets out of hand and just starts flying around in your brain and setting off these strange things that happen during seizures (laughing) and there are lots of different kinds of seizures. Mine are pretty much physiological although I've had emotional residue, too.

AA: Emotional residue ? What do you mean ?
KARA: After the seizure that you saw -- which came in a set of three seizures -- I, for the first time, grieved for the fact that I was pretty much subject to this condition where I could die at any minute where -- who knows ? -- I could have a seizure anytime where no one could help me. I could fall off a cliff or into an oven (laughs), you never know what's going to happen. When this struck me for the first time, I cried for months and months. It's kind of like a power surge. As we speak, I'm having what's called a subclinical seizure something I'm told occurs in me every three to five minutes, which is to say a seizure that doesn't manifest itself physically but it's happening in my body.

AA: How does that feel ?
KARA: I don't feel it. I wonder what I'm losing during all this and with the drugs I must take and then, I wonder what I am gaining.

AA: I've heard that stroboscopic flashing lights can act as a trigger for seizures. Is that true for your seizures and have you been able to identify any triggers that activate your epilepsy ?
KARA: Flashing lights don't have anything to do with my seizures. Some people have them with smells or whatever but I don't have anything that seems to trigger it. Although, once I talked to my mom about it and she seemed to think that change had something to do with it and as soon as she said that, I burst into tears.

AA: In essence, you don't really know when a seizure will come ? Maybe you have an intuition about them when a certain kind of change happens ?
KARA: No, I don't know. That's part of what makes it uncomfortable.

AA: Will you tell me what, if anything, runs through your mind moments before a seizure as its erupting into manifestation ? Or anything during the seizure ?
KARA: It's black. There's nothing at all. My memory is basically erased for some unknown period of time before during and after the seizure.

AA: So, the first instance you register a seizure is that you black out ?
KARA(laughing): The first instance I register it is when I wake up and somebody tells me. I'm gone; I don't have any awareness.

AA: Wow... are there any reoccurring images that come to you after the fact ?
KARA: Certain metaphors do continue to suggest themselves, like being tossed on the boulders from above. Sometimes it feels like I'm being sucked into an updraft in a tunnel to be dashed into the boulders above me, like in reverse gravity. Another one is a phoenix. Death is another one.

AA: Do you mean some kind of rebirth or resurrection when you use the word "phoenix" ?
KARA: Especially with the last two sets of seizures I feel there has been a profound rebirth. The times after the one you saw, when I woke up the next morning, I felt that I was a different person. I can't describe this in any other way except I knew I wasn't who I was the day before. It was really strange and I also knew that I was going to get sued to it, which I have.

AA: What kind of pharmaceuticals must you take to prevent seizures ?
KARA: I take a phenobarbitol derivative called Mebarol, which is pretty much the workhorse and what it does is suppresses certain brain waves. I take another one to help it along the way called valproic acid. I'm not exactly sure what it does but it's a hideous drug that doesn't have much effect on my mental processes but if I were ever to have children, it's very dangerous. It can eat away your bone marrow and the red blood cells. If I were to have a child, there's a 17% chance that child would be born without any bones. Those are the drugs that keep my seizures in check.

AA: How many days you could go without drugs before a seizure erupts ? What's the danger zone ?
KARA: The last time I cut my drugs completely was right before the seizure you saw. I'd say between four to seven days without drugs and it happens. The last time I had a seizure was March 31st, 1991, on Easter Sunday. I had four that day. Pretty cataclysmic.

AA: Will you describe the state you're in after a seizure, when you come to ?
KARA: Terrible. I feel like I've just been in a fight. It takes a lot of energy to have a seizure. They estimate that a one-minute seizure takes about the same amount of energy as a six hour day at work. On top of that, I've bitten my tongue all to shreds and probably swallowed a lot of blood and feeling really sick to my stomach. Tremendous headache. I'm also usually extraordinarily depressed. It's a huge setback to have a seizure and when I have `em, I really have `em up. I broke out my front teeth. So I'm in a lot of pain and despair.

AA: Do you have words for what you might be learning ?
KARA: I've been really fortunate, I suppose, in my body's choice of disorder. In a really backhanded kind of way I say it really brought me down to earth. It made me aware of my feelings. The last two seizures were really key in helping me feel so much more myself. I've learned to value myself after realizing how really precious and easily damaged I am. And, I don't want to be damaged. Epilepsy has also protected me from getting involved with the higher levels of substance abuse. Considering my penchant for disappearing, I consider that quite a gift.

KARA AMUNDSON lives, works and performs in Port Townsend and sometimes, Seattle.


This TERROR issue also features Hakim Bey's THE NO GO ZONE, Rob Brezsny on THE BOMB, an interview with Loompanics' STEVE O'KEEFE, many book reviews and poetry by Rasha Refaie, Tim Lander, Antero Alli, Gavin Greene, Bob Zark, Edward Mast and much more.

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