LJ Idol Season Seven Week 10 - Staring at the Ceiling
o/` "But I'm not crazy, I'm just a little unwell
I know, right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know, right now you don't care
But soon enough you're gonna think of me
And how I used to be...me" o/`
-- "Unwell" performed by Matchbox 20
It is a disease once sacred, now profaned and maligned by the modern world which no longer values the gifts it confers to its sufferers.
Epilepsy has been known as an affliction for at least three thousand years. The first descriptions of the disease appear in Ayurvedic treatises dating to approximately 4500-1500 BC. The word apasmara, which means simply 'loss of consciousness' is used as the primary diagnostic label. Another reference, a set of Babylonian tablets dating from 1067 BC, mentions the disease as either a curse or a blessing of the gods which may grant the afflicted person the gift of prophesy. The Greco-Roman perspective, built upon the earlier Babylonian model, named it 'the sacred disease'. The term seleniazeti, used to designate those thought to be so affected by the moon goddess Selene. Her epileptic followers were said to be 'moonstruck' or 'lunatic' because of the common belief that the cycles of the moon governed the frequency and occurrence of the seizures.
Some shamanic cultures viewed the seizures, often caused by a near fatal neurological insult, as the final testament of the gods. A person seeking to become a shaman generally had to experience such a phenomena in order for his or her tribe to accept him or her. Robert Ryan, in The Strong Eye of Shamanism, writes:
...such states do, in a sense, draw us backward toward or even into the brain, for they relate to the "deeper" or older parts of our brain...various techniques used in shamanic practice...trigger activities that rely upon the campanological-sepal region of the mind...that 'includes terminal projections from somatic and autonomic nervous systems'....This implies crisis; the death of profane man; a return to the creative source, both within the mind and within the cosmos; and a rebirth with enhanced power from this source....On the personal level, the experience of this dissolution of personality is radical and profound....
A potential shaman might lie ill with an affliction for months or even years until the profane personality is subsumed by the sacred. Archetypal images for the transition include being assembled as a block of wood or some other malleable substance and then either torn asunder by the spirit animal who will become the shaman's guide or being disassembled to the bones and then rebuilt in an ideal image by their ancestors.
Thus may be the experience of one with temporal lobe epilepsy, such as I.
In the early 1990s I suffered a grand mal seizure and was taken to my rural community's small hospital for treatment. 'Treatment' consisted of a recommendation for psychiatric evaluation, followed by administration of slaps or blows to stop the seizures. My mother, somewhat more enlightened than the rustic doctors more used to treating combine accidents, took me to see a neurologist. Modern epilepsy was, and still is, defined as having two or more unprovoked seizures in one's lifetime. I have never, in all my perusal of treatises on epilepsy, seen a clear definition of 'unprovoked'. What I did find is that the sacred has been utterly, completely forgotten and has not been replaced by the enlightenment of the scientific. With one word from the neurologist, I went from being an intelligent young woman with a future to an imbecile who couldn't tie her own shoes. People spoke to me slowly, as though I couldn't hear properly, and edged away when I came near. No matter which physician I saw, the results were nearly always the same: prescribing of some sort of anti psychotic and advisement that if sufficiently physically stimulated (which my ex-husband and several others took to mean they ought to beat the seizures out of me) I would cease these activities. Tangent to that sage advice was the suggestion that I just wanted attention or was hysterical.
The ancients, though they didn't understand cause, at least did acknowledge epilepsy to be a physical disease of the brain. Not so from the Middle Ages onward. Malleus Malificarum, written in the 1400s under papal authority, identified seizures as one of the primary indicators of witchcraft. It seems, in spite of medical advances, we've been going downhill ever since. Take a look at these statistics:
People with epilepsy can be targets of prejudice. The stigma of the disorder can discourage people from seeking treatment for symptoms and becoming identified with the disorder.
Epilepsy has significant economic implications in terms of health care-needs, premature death and lost work productivity. An Indian study calculated that the total cost per epilepsy case was US$ 344 per year (or 88% of the average income per capita). The total cost for an estimated five million cases in India was equivalent to 0.5% of gross national product.
Human rights
People with epilepsy experience reduced access to health and life insurance, a withholding of the opportunity to obtain a driving license, and barriers to enter particular occupations, among other limitations. In many countries legislation reflects centuries of misunderstanding about epilepsy. For example:
* In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages.
* In the United Kingdom, a law forbidding people with epilepsy to marry was repealed only in 1970.
* In the United States, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
How about this?
During the last few decades greater attention has been paid to quality of life, i.e; psychological and social issues, for people with epilepsy, although progress is slow and services are still poor. It is also the case that most of the advances in developed countries are of relevance but not available for the 80% of people with epilepsy who live in developing countries -stigma is still the same in both developed and developing countries. For many of these people supernatural views, social stigma and discrimination still prevail. Even in developed countries the disorder is still shrouded in secrecy and people prefer not to reveal or discuss their condition.
Of the 50 million people in the world with epilepsy, some 35 million have no access to appropriate treatment. This is either because services are non-existent or because epilepsy is not viewed as a medical problem or a treatable brain disorder.
I'm one of those 35 million, on a medication which may or may not work prescribed by general physician. The neurologist to whom I was referred stated point-blank that epilepsy is a mental disorder and ought to be treated as such. I recently learned that while it doesn't specifically list epilepsy as a psychological condition, the fact that many symptoms of seizure are listed in the DSM will cause doctors to classify it as such by default. The psychologist to which I was sent wanted to subject me to a lobotomy, which would supposedly stop the electrical impulses from being generated. That, unfortunately, is only true if the patient has seizures which cross hemispheres of the brain. Mine do not. Another suggested electric shock therapy. Lady, I already have random electrical impulses creating havoc in my brain; why on earth would adding more electricity be a good idea?
What if I don't want treatment? What if it doesn't need treated? Hey, I think they're trying to erase something that makes me...well...me.
Who said that a gift or curse given me by divine right needs eradicated? It looks like I'm in good company, considering how many of the world's great people have had seizure disorders. The prophet Muhammad himself seems to have prophesied while having seizures.
What if I don't need a cure? Maybe it's simply a matter of grabbing hold of that mad gift and learning to fly as high as you can without letting genius burn you.
Even the experts don't agree on the matter. Epileptic seizures have a powerful symbolism which, through the ages, humanity has come to associate with the genius of creation. I would be among the folk who consider my disorder a curse and no blessing, yet I cannot deny that they run parallel. A neurologist, Dr. Paul Spiers, is quoted in the Epilepsy web site as saying, "Sometimes the same things that cause epilepsy result in giftedness. If you damage an area [of the brain] early enough in life, the corresponding area on the other side has a chance to overdevelop." Psychiatrist Dr. David Bear, says, ""A temporal lobe focus in the superior individual may spark an extraordinary search for that entity we alternately call truth or beauty."
Am I the only one who thinks that the damage my brain sustained perhaps opened up avenues of thought to which others do not have access?
Enter Icarus. I discovered the Icarus Project only recently but their mission statement, while aimed at other psychological disorders, struck a chord to the bottom of my supposedly damaged psyche:
The Icarus Project envisions a new culture and language that resonates with our actual experiences of 'mental illness' rather than trying to fit our lives into a conventional framework.
We are a network of people living with and/or affected by experiences that are commonly diagnosed and labeled as psychiatric conditions. We believe these experiences are mad gifts needing cultivation and care, rather than diseases or disorders. By joining together as individuals and as a community, the intertwined threads of madness, creativity, and collaboration can inspire hope and transformation in an oppressive and damaged world. Participation in The Icarus Project helps us overcome alienation and tap into the true potential that lies between brilliance and madness.
That's me. Wiccan priestess, walker between worlds, once-and-future writer, madcap artist --- I walk that delicate line between genius and madness.
Now I'm going to fly.
Written for Season 7 of therealljidol.
The poll is up HERE. Please take a moment to go there and vote for my entry.
I know, right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know, right now you don't care
But soon enough you're gonna think of me
And how I used to be...me" o/`
-- "Unwell" performed by Matchbox 20
It is a disease once sacred, now profaned and maligned by the modern world which no longer values the gifts it confers to its sufferers.
Epilepsy has been known as an affliction for at least three thousand years. The first descriptions of the disease appear in Ayurvedic treatises dating to approximately 4500-1500 BC. The word apasmara, which means simply 'loss of consciousness' is used as the primary diagnostic label. Another reference, a set of Babylonian tablets dating from 1067 BC, mentions the disease as either a curse or a blessing of the gods which may grant the afflicted person the gift of prophesy. The Greco-Roman perspective, built upon the earlier Babylonian model, named it 'the sacred disease'. The term seleniazeti, used to designate those thought to be so affected by the moon goddess Selene. Her epileptic followers were said to be 'moonstruck' or 'lunatic' because of the common belief that the cycles of the moon governed the frequency and occurrence of the seizures.
Some shamanic cultures viewed the seizures, often caused by a near fatal neurological insult, as the final testament of the gods. A person seeking to become a shaman generally had to experience such a phenomena in order for his or her tribe to accept him or her. Robert Ryan, in The Strong Eye of Shamanism, writes:
...such states do, in a sense, draw us backward toward or even into the brain, for they relate to the "deeper" or older parts of our brain...various techniques used in shamanic practice...trigger activities that rely upon the campanological-sepal region of the mind...that 'includes terminal projections from somatic and autonomic nervous systems'....This implies crisis; the death of profane man; a return to the creative source, both within the mind and within the cosmos; and a rebirth with enhanced power from this source....On the personal level, the experience of this dissolution of personality is radical and profound....
A potential shaman might lie ill with an affliction for months or even years until the profane personality is subsumed by the sacred. Archetypal images for the transition include being assembled as a block of wood or some other malleable substance and then either torn asunder by the spirit animal who will become the shaman's guide or being disassembled to the bones and then rebuilt in an ideal image by their ancestors.
Thus may be the experience of one with temporal lobe epilepsy, such as I.
In the early 1990s I suffered a grand mal seizure and was taken to my rural community's small hospital for treatment. 'Treatment' consisted of a recommendation for psychiatric evaluation, followed by administration of slaps or blows to stop the seizures. My mother, somewhat more enlightened than the rustic doctors more used to treating combine accidents, took me to see a neurologist. Modern epilepsy was, and still is, defined as having two or more unprovoked seizures in one's lifetime. I have never, in all my perusal of treatises on epilepsy, seen a clear definition of 'unprovoked'. What I did find is that the sacred has been utterly, completely forgotten and has not been replaced by the enlightenment of the scientific. With one word from the neurologist, I went from being an intelligent young woman with a future to an imbecile who couldn't tie her own shoes. People spoke to me slowly, as though I couldn't hear properly, and edged away when I came near. No matter which physician I saw, the results were nearly always the same: prescribing of some sort of anti psychotic and advisement that if sufficiently physically stimulated (which my ex-husband and several others took to mean they ought to beat the seizures out of me) I would cease these activities. Tangent to that sage advice was the suggestion that I just wanted attention or was hysterical.
The ancients, though they didn't understand cause, at least did acknowledge epilepsy to be a physical disease of the brain. Not so from the Middle Ages onward. Malleus Malificarum, written in the 1400s under papal authority, identified seizures as one of the primary indicators of witchcraft. It seems, in spite of medical advances, we've been going downhill ever since. Take a look at these statistics:
People with epilepsy can be targets of prejudice. The stigma of the disorder can discourage people from seeking treatment for symptoms and becoming identified with the disorder.
Epilepsy has significant economic implications in terms of health care-needs, premature death and lost work productivity. An Indian study calculated that the total cost per epilepsy case was US$ 344 per year (or 88% of the average income per capita). The total cost for an estimated five million cases in India was equivalent to 0.5% of gross national product.
Human rights
People with epilepsy experience reduced access to health and life insurance, a withholding of the opportunity to obtain a driving license, and barriers to enter particular occupations, among other limitations. In many countries legislation reflects centuries of misunderstanding about epilepsy. For example:
* In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages.
* In the United Kingdom, a law forbidding people with epilepsy to marry was repealed only in 1970.
* In the United States, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
How about this?
During the last few decades greater attention has been paid to quality of life, i.e; psychological and social issues, for people with epilepsy, although progress is slow and services are still poor. It is also the case that most of the advances in developed countries are of relevance but not available for the 80% of people with epilepsy who live in developing countries -stigma is still the same in both developed and developing countries. For many of these people supernatural views, social stigma and discrimination still prevail. Even in developed countries the disorder is still shrouded in secrecy and people prefer not to reveal or discuss their condition.
Of the 50 million people in the world with epilepsy, some 35 million have no access to appropriate treatment. This is either because services are non-existent or because epilepsy is not viewed as a medical problem or a treatable brain disorder.
I'm one of those 35 million, on a medication which may or may not work prescribed by general physician. The neurologist to whom I was referred stated point-blank that epilepsy is a mental disorder and ought to be treated as such. I recently learned that while it doesn't specifically list epilepsy as a psychological condition, the fact that many symptoms of seizure are listed in the DSM will cause doctors to classify it as such by default. The psychologist to which I was sent wanted to subject me to a lobotomy, which would supposedly stop the electrical impulses from being generated. That, unfortunately, is only true if the patient has seizures which cross hemispheres of the brain. Mine do not. Another suggested electric shock therapy. Lady, I already have random electrical impulses creating havoc in my brain; why on earth would adding more electricity be a good idea?
What if I don't want treatment? What if it doesn't need treated? Hey, I think they're trying to erase something that makes me...well...me.
Who said that a gift or curse given me by divine right needs eradicated? It looks like I'm in good company, considering how many of the world's great people have had seizure disorders. The prophet Muhammad himself seems to have prophesied while having seizures.
What if I don't need a cure? Maybe it's simply a matter of grabbing hold of that mad gift and learning to fly as high as you can without letting genius burn you.
Even the experts don't agree on the matter. Epileptic seizures have a powerful symbolism which, through the ages, humanity has come to associate with the genius of creation. I would be among the folk who consider my disorder a curse and no blessing, yet I cannot deny that they run parallel. A neurologist, Dr. Paul Spiers, is quoted in the Epilepsy web site as saying, "Sometimes the same things that cause epilepsy result in giftedness. If you damage an area [of the brain] early enough in life, the corresponding area on the other side has a chance to overdevelop." Psychiatrist Dr. David Bear, says, ""A temporal lobe focus in the superior individual may spark an extraordinary search for that entity we alternately call truth or beauty."
Am I the only one who thinks that the damage my brain sustained perhaps opened up avenues of thought to which others do not have access?
Enter Icarus. I discovered the Icarus Project only recently but their mission statement, while aimed at other psychological disorders, struck a chord to the bottom of my supposedly damaged psyche:
The Icarus Project envisions a new culture and language that resonates with our actual experiences of 'mental illness' rather than trying to fit our lives into a conventional framework.
We are a network of people living with and/or affected by experiences that are commonly diagnosed and labeled as psychiatric conditions. We believe these experiences are mad gifts needing cultivation and care, rather than diseases or disorders. By joining together as individuals and as a community, the intertwined threads of madness, creativity, and collaboration can inspire hope and transformation in an oppressive and damaged world. Participation in The Icarus Project helps us overcome alienation and tap into the true potential that lies between brilliance and madness.
That's me. Wiccan priestess, walker between worlds, once-and-future writer, madcap artist --- I walk that delicate line between genius and madness.
Now I'm going to fly.
Written for Season 7 of therealljidol.
The poll is up HERE. Please take a moment to go there and vote for my entry.