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brightlotusmoonhttp://truth-out.org/opinion/item/14466-i-am-not-a-camel-but-i-do-have-epilepsy
What she said:
And then there's the other, less dramatic stuff - the "abnormal activity" buzzing around my brain on "normal" days. Since I had my first seizure, that "me" who floated outside myself and saw a separate version of reality has never really gone away. When I'm not concentrating hard on something - an engaging conversation, a good book, a challenging project, my wonderful wedding, my fast-paced job, an adorable dog, an extremely delicious sandwich - I'm sometimes flooded with a feeling of "derealization." The world around me appears like a dream, or a movie, or a secondhand vision: a matrix inside a matrix. Sometimes, the world wiggles. At times, I think I'm seeing the fundamental unreality of things as they really are, as in the Hindu concept of "Maya," in which the physical world is an illusion or projection that must be seen through in order to achieve enlightenment.... And at times, I just want to go to bed.
***
I should add:
People have asked me, "So, does temporal lobe epilepsy affect you when you are not having seizures?" And the answer is a resounding "Oh, yes!" Seizures are just one type of symptom, after all. The brain with epilepsy is routinely being shifted in and out of fantastic and fantastical neural and neurological wormholes and dimensions, in a strange way. There is always a buzzing, a shifting sense of reality. Colors, smells, sounds, shapes, sensations, flavors, textures. Particularly for epileptics with other disabilities or comorbid disabilities, like cerebral palsy or fibromyalgia or nerve damages.
I rarely tell people about the everyday life of my epilepsy, because the common reactions are often variations of "Well, maybe you should change your medication or add a medication or do this or do that because that doesn't seem normal!" or "Oh, no, does this mean something is wrong with you?" Sigh.
So, I have this damaged brain. Stuff happens in my brain. It is my brain and nobody else's. I talk to my doctors and specialists so often that they know me just by my voice on the phone. If something goes wrong or if something doesn't feel right, I take action. I don't say anything much to people who are not medical specialists or medical personnel, because, you know, reactions. But yes. Yes, I am constantly, consistently, and chronically affected by epilepsy. My temporal lobes, my amygdala, my cerebral cortex, my hippocampus, and the various neurons all involved are affected; and thus my perceptions, orientations, sensations, emotions, neurological functions, and memories are affected. When I seem to be drifting in and out of reality, I kind of am. It's not painful, it doesn't mean something is wrong, it certainly does not mean that my medicine needs changing. It's just my brain. Mine, and nobody else's. I cannot be compared to other epileptic people, and other epileptic people cannot be compared to me. But we all have things in common: Our brains are totally weird, fantastical, creative, artistic, and awesome. Most of the time. The Hindu concept of Maya does indeed apply. Also, as many people have told me, some people pay good money to feel the way I feel. *shrug*
It's just my brain.
What she said:
And then there's the other, less dramatic stuff - the "abnormal activity" buzzing around my brain on "normal" days. Since I had my first seizure, that "me" who floated outside myself and saw a separate version of reality has never really gone away. When I'm not concentrating hard on something - an engaging conversation, a good book, a challenging project, my wonderful wedding, my fast-paced job, an adorable dog, an extremely delicious sandwich - I'm sometimes flooded with a feeling of "derealization." The world around me appears like a dream, or a movie, or a secondhand vision: a matrix inside a matrix. Sometimes, the world wiggles. At times, I think I'm seeing the fundamental unreality of things as they really are, as in the Hindu concept of "Maya," in which the physical world is an illusion or projection that must be seen through in order to achieve enlightenment.... And at times, I just want to go to bed.
***
I should add:
People have asked me, "So, does temporal lobe epilepsy affect you when you are not having seizures?" And the answer is a resounding "Oh, yes!" Seizures are just one type of symptom, after all. The brain with epilepsy is routinely being shifted in and out of fantastic and fantastical neural and neurological wormholes and dimensions, in a strange way. There is always a buzzing, a shifting sense of reality. Colors, smells, sounds, shapes, sensations, flavors, textures. Particularly for epileptics with other disabilities or comorbid disabilities, like cerebral palsy or fibromyalgia or nerve damages.
I rarely tell people about the everyday life of my epilepsy, because the common reactions are often variations of "Well, maybe you should change your medication or add a medication or do this or do that because that doesn't seem normal!" or "Oh, no, does this mean something is wrong with you?" Sigh.
So, I have this damaged brain. Stuff happens in my brain. It is my brain and nobody else's. I talk to my doctors and specialists so often that they know me just by my voice on the phone. If something goes wrong or if something doesn't feel right, I take action. I don't say anything much to people who are not medical specialists or medical personnel, because, you know, reactions. But yes. Yes, I am constantly, consistently, and chronically affected by epilepsy. My temporal lobes, my amygdala, my cerebral cortex, my hippocampus, and the various neurons all involved are affected; and thus my perceptions, orientations, sensations, emotions, neurological functions, and memories are affected. When I seem to be drifting in and out of reality, I kind of am. It's not painful, it doesn't mean something is wrong, it certainly does not mean that my medicine needs changing. It's just my brain. Mine, and nobody else's. I cannot be compared to other epileptic people, and other epileptic people cannot be compared to me. But we all have things in common: Our brains are totally weird, fantastical, creative, artistic, and awesome. Most of the time. The Hindu concept of Maya does indeed apply. Also, as many people have told me, some people pay good money to feel the way I feel. *shrug*
It's just my brain.
