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Here's the body of a letter Shufflebrain recently received from a remarkable reader.
In 1972 I began to have strokes, the result of a then undiagnosed cerebral arteriovenous malformation. I became agraphic in 1977 for about a year following a stroke not initially diagnosed. My left side was paralyzed in 1982 after the first craniotomy, done to remove the leaking AVM. During the operation the right middle cerebral artery "blew out" where it branches from the carotid and remains totally occluded. A partial temporal lobectomy was done and the frontal lobe was separated from the right temporal lobe to reach the AVM. When I emerged from the coma I was unable to orient to place or time and was amnesiac for most of my life from about the ages of 18-30.
I had a psychologist friend who was very interested in the holographic memory theories. I had interviewed him when writing an article about relaxation floatation tanks. After I was paralyzed he explained the theories to me as best possible and I began using the floatation tanks five days a week. Prior to getting into the tank I would study one of my CT scans to view where the lesions were located. I then spent my time in the tank imagining my brain reconstructing a holographic image of its complete self and figuring out how to find new pathways to move my paralyzed fingers. About five months after that surgery I got my left thumb to move and have fully recovered from the paralysis over a period of about 17 years.
In 1988 I had a second craniotomy, an unsuccessful attempt to control my intractable partial complex seizures. This was a right temporal lobectomy and in this operation part of the frontal lobe was also removed as well as the hippocampus and amygdala of the right hemisphere.
Between the strokes (4-6) over a twenty-year period) and the craniotomies, my brain was quite "scrambled." Yet it seems there is an instinctive drive to re-create ("remember") lost functions and "program" routines. "Shufflebrain" was very helpful to me. You at least considered the possibility the brain intuitively grasps how to re-invent itself when impaired for some reason.
I have had to relearn some very basic behaviors, like producing the behavior laughter, when something is funny. If you have a question about social graces you can consult Amy Vanderbilt's book of etiquette, or write to Miss Manners. Where do you go if you are trying to figure if something you are experiencing is related to, or a result of not having a hippocampus or amygdala? Like rats with hippocampal damage, I lost my ability work a maze, to recognize my house or find my way around town. Over the years it came to seem that the reasoning impairments were the abstract equivalent of the rat's maze dilemma. I get "lost" when speaking or writing my thoughts in a way that parallels the geographic disorientation. Is there a parallel between getting lost navigating physical places and losing one's way traversing abstract terrain?
About a year ago I began using the amino acid taurine for seizures. Six months later I was able to get my first driver's license in fifteen years. Especially over the past half year my ability to orient geographically is returning and I now recognize my building consistently. I have no claims of cures or conclusions to push on anyone, each person's situation is unique. I do have questions about various aspects of the brain damage, memory in particular, and no one around who can even discuss the subject. I came upon your site unexpectedly while researching an unrelated topic. Is it be ok to send you some questions about memory and some other aspects of brain function, such as overcoming amnesia? I hope I've not been intrusive. I will be leaving town for about two weeks this Wednesday. So if you write and don't hear from me immediately that's why. Thanks for reading my note. I enjoyed viewing your site.
Zoë L. Langley
Copyright 1999 by Zoë L. Langley ......published with the author's permission