Sunday, April 17, 2016

Ecstatically Alone

     In my lap is an article from a journal called Epilepsy & Behavior, dated 2009. It isn't my kind of journal, with scraps of paper and purple scribbles and pictures all mixed together, but rather a medical journal with big, fancy words and lots of notations.
     Professors and doctors can be extremely protective of their words, constantly making sure no one takes credit for their original ideas. You may notice I don't write that way; it's because I'm a journalist.
     Feel free to steal my words and ideas to reuse in any way you please. I don't care if you give me credit; it's a big enough compliment to have someone take the time to see things from my point of view.
     When I was a volunteer in the art classroom at my sons' elementary school, my friend, the art teacher, gave me advice for students who became angry when their classmates tried to imitate their drawings or pottery or other projects. She said to remind them that imitation is the greatest form of flattery.
     Sometimes, I had to further explain to students what those big words actually meant, which was fun because I love talking about words and what they really mean.
     I learned how to quickly get through and understand articles from professional journals while getting my master's degree in Special Education at UVA. Other students who were much younger than me provided insight on how to skim through the annotations and find the good stuff, while the professors taught me which types of articles to trust.
     It's a valuable tool for someone who is looking for the truth but not always sure where to find it.
     A woman from the Epilepsy Foundation emailed the article to me, page-by-page, after I called and asked for information about ecstatic seizures. It's old but one of the best articles I have been able to obtain on the subject.
     The authors interviewed five patients with ecstatic seizures and came up with a theory involving another part of the brain, not the temporal lobe. Dr. S tried to explain a similar idea to me last summer, when he pointed to an area of my MRI pic that is near the broken part my brain.
     In this particular article, the authors concluded that hyperactivation of the anterior insular cortex is responsible for the "intense feelings and heightened self-awareness" reported by ecstatic epileptics. If you look up "insular cortex" on Wikipedia, there is a section titled "Subjective certainty in ecstatic seizures" that may be easier to read than the journal article by F. Picard and A.D. Craig, which is resting on my knees.
     Now that I have given proper credit, it's time to talk about what the five people in their study had to say, hopefully in a way that won't anger the authors enough to file a lawsuit against me. I'm selecting the parts most relevant to me, the ones similar to the feelings I have during my own seizures.
      One woman said her body fills with warmth from her feet to her head and then she is overcome with a feeling that it surreal, as if she is at total peace, with no worries. "It felt beautiful; everything was great," she reported.
     She described the sensation as almost like an orgasm but not at all sexual, and although not a religious person, she said the experience itself felt almost religious in nature.
     The seizures have taken away her fear of death and left her with more detailed perceptions, especially when listening to music. "It's a big happening in your life, to have these seizures," she said.
     Amen to that, sister.
     The next person felt a sense of deja vu, like me, during his aura. He reported a sense of well-being with a pleasant feeling that wraps his entire body, like velvet, sheltering him from anything negative. "I feel light inside, but far from being empty, I feel really present," he said.
     Also similar to me, the second epileptic maintained his sense of awareness to his surroundings and some control over his conscious thoughts. "I feel a stronger consciousness of the body and mind, but do not forget what is around me," he said. "My inner body rises from an unalterable bliss. I escape into the time space of my body. It is a moment of fullness in the loophole of time, a return to myself."
     He experienced anxiety, the way I do, about how he would appear to others during the seizures, but that anxiety was overcome by the mounting sense of bliss.
     The third person described feelings of pleasure that become stronger and stronger until they are unbearable and lead to a complete loss of consciousness. He went on to say the intense feeling of fullness and pleasure was "a physical overload" that is "certainly more intense than could be achieved with any drug."
      The fourth person described a head that is filled with emotions and a sense of being more conscious of herself in a pleasurable way that builds to a crescendo of intense cerebral thought. "Being very conscious of myself, I feel discharged from anything else, although I do not lose consciousness," she said.
     Like me, she also felt a sense of being relaxed and having warmth rise up through her body.
     The final person in Picard and Craig's study earned purple lines on the page beside her descriptions, which means they spoke to me loudest. She, too, has a sense of well-being that is almost spiritual in nature.
     "The immense joy that fills me is above physical sensations," she said. "It is a feeling of total presence, an absolute integration of myself, a feeling of unbelievable harmony of my whole body and myself with life, with the world, with the 'All.' Entirely wrapped up in the bliss, I am in a radiant sphere without any notion of time or space," she said.
     "My relatives tell me it lasts two to three minutes, but for me, these moments are without beginning and without end. These experiences brought me confidence. They confirm that there is something that surpasses us."
     Last week, before taking the time to read this article I had already printed out, I described similar feelings in a much less eloquent way, with my Fyodor and Simba post. When I finally took the time to read it, I could hear that Meat Loaf song playing in my head, the one that says, "You took the words right out of my mouth."
     According to the authors, an altered sense of time during ecstatic seizures can be explained by the involvement of anterior region of the insular cortex, which is crucial to human time perceptions. While reading that info, I remembered telling my sons last summer as I sat on my front porch that time doesn't really exist but is something made up by humans so we can keep our lives organized.
     The authors try to distinguish these five people from those with temporal lobe epilepsy by certain differences in their behavior and symptom reports. I'm not going to get into all that because I think the two are connected and cannot be so easily separated.
     Dr. S was very persuasive when he pointed out different areas on my MRI and showed how they are all connected and nestled right up against one another in my head. He's the one who told me about how my hippocampus is part of my limbic system, which regulates such things as emotion, behavior, motivation, memory and sense of smell.
     I wish more neurologists thought the way he seemed to think, about how everything in the brain connects.
     Picard and Craig were on the right track at first, with their in-depth reports of what people actually feel during ecstatic seizures. I also agree with their theory that patients are less likely to talk about pleasant symptoms during seizures out of a sense of embarrassment or limited ability to describe in words what is happening in their own minds.
     But I'm not completely comfortable with their idea of separating people with ecstatic seizures from those with complex partial seizures originating in the temporal lobe. Instead, I wish they had listened to Patient #5 and followed her lead about there being a greater connection to "the All."
     People with epilepsy seem to be divided into enough seizure types anyway. I think the figure is around 120, but would hafta look it up to be sure.
     However, I do appreciate their taking the time to study and write about ecstatic seizures. I carried the article in my pocketbook yesterday because I knew there would be lots of people with more common types of seizures all around me, types that show up more easily on EEGs and cannot be hidden when they happen in public places.
     I didn't show it to anyone but wanted to have it on hand just to prove that people like me really do exist.