Epilepsy Glenn Mason-Riseborough (28/8/1998) In its most simplistic form, epilepsy is associated with epileptic seizures. These seizures are due to abnormal electrical activity in the brain. Hughlings Jackson (1835-1911) defined epilepsy as “the name for occasional, sudden, excessive, rapid and local discharge of grey matter” (Aicardi, 1994, p. 1). Further definitions and categories are difficult as seizures manifest themselves differently in all epilepsy sufferers, depending on the location and extent of the electrical disturbance. Despite this, we may categorise epilepsy according to the different effects it has on the individual, and the areas of the brain affected. Thompson and Trimble (1996) consider epilepsy to be a group of syndromes, and we may thus consider it to be a cluster concept – no particular list of psychological symptoms may be considered to be jointly necessary and sufficient. The initial task of this essay will be to give a brief overview of the different types of seizures. This will include a discussion of the categories that the various symptoms fall into, and the associated neurological activity. Secondly, this essay will discuss how epilepsy has been perceived in various cultures throughout history, from ancient Greece up until modern times. This discussion will focus on the stigmas associated with epilepsy and the degree to which sufferers have been discriminated against in various cultures. Due to the informal nature of definitions of epilepsy and madness throughout much of history, this discussion will generalise to some extent to the perception of madness, rather than concentrating exclusively on the perception of epilepsy. If we include epilepsy as a subset of madness, then this analysis will still remain within the parameters of the original topic. The classifications of epilepsy As Aicardi (1994) points out, epilepsy may be classified from numerous standpoints. We may examine the aetiology, the physical location in the brain of the associated abnormal firing, or mechanisms to which it occurs. With respect to classifications, this essay will focus on the different symptoms and physiological locations of the seizures. Epileptic seizures can initially be divided into partial and generalised seizures (Thompson & Trimble, 1996). Partial seizures are those that are initially localised to a specific area of the brain, but they may become more generalised during the seizure. Partial seizures can be further divided into complex partial seizures and simple partial seizures. Sufferers with complex partial seizures incur impaired consciousness, while those with simple partial seizures do not. Simple partial seizures (sometimes called Jacksonian seizures (Pinel, 1993)) may develop into complex partial seizures. Complex partial seizures are often temporal lobe seizures – these make up approximately half of all epilepsy cases (Pinel, 1993). Some symptoms that may be present during complex partial seizures are hallucinations, affective disturbances, and thought disorder. The sufferers of this type of epilepsy may perform purposeless movements (automatisms) such as twisting or unbuttoning and buttoning clothing. These movements may appear purposeful, and the sufferer may perform complex tasks and appear “normal” to observers. After the seizure the sufferer may by disoriented and confused and have no memory of the events. Sufferers of simple partial seizures may have motor (eg tics), sensory (eg tingling), autonomic, or psychic (eg fear or hallucinations) symptoms. Generalised seizures occur bilaterally from the outset and are generally symmetrically located in the brain. They may originate in a specific area of the brain (eg the thalamus) and project to other parts of the brain. Alternatively, they may begin simultaneously in many areas of the brain (Pinel, 1993). All sufferers of generalised seizures have their consciousness impaired. There are various types of generalised seizures. These are absence seizures (brief loss of consciousness), myoclonic seizures (muscular jerks), clonic seizures (shaking), tonic seizures (rigidity), tonic-clonic seizures, and atonic seizures (Thompson & Trimble, 1996). In some cases what is known as an “aura” is produced in the initial stages of a seizure (either partial or general) (Pinel, 1993). The sufferer can often use the aura as a warning to prepare him/herself for an impending seizure. The effect of the aura will be very different between sufferers, and the particular feelings may be useful in pinpointing the origin in the brain of the particular seizure. An aura may take the form of a sensation (smell, taste, feeling etc.) or a specific thought or emotion. Epilepsy with a definable cause is called symptomatic epilepsy; epilepsy without a recognisable cause is called idiopathic epilepsy. The causes of epilepsy are many. It may be caused by damage to an inhibitory system that then leads to generally greater neural activity. This damage may have been from head injuries, strokes, tumours, or infections for example (Rosenhan & Seligman, 1995). The history of epilepsy as a social stigma Throughout history, epilepsy has been perceived in numerous different ways depending on the cultural episteme in which it was observed. It has often been considered to have a supernatural origin, either as punishment or gift from metaphysical entities, or as an actual conversation with those said entities. In other cultures, particularly in modernity, epilepsy has been seen as having natural, physiological origins. As we develop a physiological understanding of how the body and brain work, we find it progressively less necessary to attribute causality to external metaphysical forces. As a consequence epilepsy is seen as something physically detrimental, which can potentially be eliminated or minimised by medical intervention. Epilepsy sufferers, rather than being seen as demonic or divine, are seen as suffering from an illness. This may bring about its own problems and stigmas in a society that looks down upon physical weakness and illness. This type of society may deny the experiential validity of epileptic seizures or other forms of “altered states of consciousness.” In ancient Greek culture, it was generally considered that epilepsy was of divine origin (Trimble, 1991). It seemed obvious that if someone was thrown to the ground, shaken, then restored to full health, this must have been the result of an encounter with a god. Gods could not be seen by mortals (unless the god chose to be seen), so this flailing, without any apparent earthly interference must have been caused by a god. Hecate, the moon goddess is often attributed to madness (Trimble, 1991). The furies also were known to cause madness in mortals (Warner, 1967), although this may be more likely to be depression rather than epilepsy. Many Greek mythologies revolve around a particular hero’s vision and the consequences of acting upon it. It may be the case that some of these visions were hallucinations brought about by epileptic seizures. In other mythologies the hero had to deal with the consequences of some horrific action and possibly a memory loss surrounding those events. Trimble (1991) states that Aristotle considered Hercules to be an epilepsy sufferer, because of his fits and consequent amnesia – according to one particular myth Hercules killed his family during a mad seizure. This Greek view did not perceive epilepsy as inherently good or bad, but judged it on the actions and experiences of the epilepsy sufferer. It was up to the gods to judge the action of the individual, and the Fates to dispense justice accordingly. A person “suffered” from epilepsy only in the sense that it was a natural and inevitable part of life. Attempting to “cure” epilepsy would have been considered the height of hubris. Perhaps those people who tried to go against the Fates would have suffered from seizures twice as much after the attempt. Hippocrates (460-377 BC) was a notable exception to this general Greek view of epilepsy. Trimble (1991) states that Hippocrates wrote a text entitled On the Sacred Disease, which gave an account of epilepsy in which he hypothesised that it was of natural origins. Hippocrates thought that the seizures were due to diseases of the brain. It was due to the phlegm and bile in the brain that caused the madness and delirium. Hippocrates thought that the brain was the area from which other feelings, emotions and reason emerged, so the seizures or non-reason must also have the brain as their origin. It is of interest to note that some of the most well known religious figures throughout history may have been epilepsy sufferers. Trimble (1991) states that Saint Paul (Saul) of Tarsus, who infamously on the road to Damascus, fell to the ground and heard God may be considered to be an example of this. This is possible, but Acts 9:7 states that the other men travelling with Saul also heard the sound/voice (f???). It is unknown whether the other men understood the sound as a spoken voice, or whether Saul, under the influence of a seizure, interpreted a natural sound in conjunction with a visual hallucination as the presence of Jesus. Trimble (1991) also suggests that Mohammed (570-623) had seizures in which he “became pale, resembled a drunkard, fell down, and sweated profusely. At such times he had visual and auditory hallucinations” (Trimble, 1991, p. 3). Smart (1996) rejects this view that Mohammed was an epilepsy sufferer, and suggests that it was propaganda put out by his enemies. Unfortunately, the evidence that is given for this view shows that there is little understanding of the psychology of epilepsy. “Muhammed was a man whose common sense never failed him. ... Had he ever collapsed in the strain of battle or controversy, or fainted away when strong action was called for, a case might be made out” (Guillame, 1956, cited in Smart, 1996, p. 300). (1) History has recorded that these two men were important religious leaders. If we accept that both Paul and Mohammed were epilepsy sufferers and that their “divine” experiences were caused by their seizures, then epilepsy in certain circumstances was an extremely positive affliction. The cultural beliefs of the day created an environment that supported epilepsy sufferers and accepted their experiences as real and important. On the other hand, Luke 9:37-43 (2) shows epilepsy as a demon that must be driven out – “a spirit seizes him [a young boy] and he suddenly screams; it throws him into convulsions so that he foams at the mouth. It scarcely ever leaves him and is destroying him” (Luke 9:39). This example clearly shows that some forms of epilepsy were seen as a stigma in some contexts of Greco-Roman society. This type of epilepsy (probably tonic- clonic) is extremely unpleasant to watch (for many people) and this unpleasantness probably influenced the belief that this type of seizure was demonic. With the influence of Christianity, this view of epilepsy dominated much of Western thought until recent times. Thus, we can see degrees of double standards with regard to epilepsy. Whether the seizures were seen as god-inspired (good) or demonic (bad) was dependent on the context – the type of seizure incurred, the charisma and socio-economic background of the sufferer were all probably extremely important factors. The experiential aspect of epilepsy had its value, but only in a religious context. In his book Madness and Civilization, Michel Foucault (1965) examines how “madness” was perceived from the Renaissance to Modernity. He does not specifically address the issue of epilepsy, but as mentioned above, epilepsy can be considered a subset of madness when understanding the writings of some cultures. It is interesting to note that Foucault sees a correlation between the decline in incidences of leprosy in Europe with an increase in the perception of madness as a stigma (fourteenth century). It is possible to see this social change in terms of in- group versus out-group behaviours. Leprosy sufferers had filled the role of those who needed to be kept at a distance from civilised society. The church used these people as evidence of the anger and grace of God, and the general population could use them as scapegoats. When leprosy became less prevalent, this role needed to be filled by some other group. The madman was perfect for this role of social exclusion. The fifteenth century saw the unique invention of the Ship of Fools. The cargoes of these boats were the madmen who were driven out of their towns and villages. Many wandered the countryside and many more were handed over to boatmen, whose job it was to remove the madmen from the sight of the townsfolk. These Ships of Fools plied the waterways of Europe, their cargoes of fools and madmen seemingly on a great symbolic voyage of truth. An uncertain sea voyage put those on board into the hands of God and Fate, and the water acted as purifier. Prison and freedom bound together: deliverance for both the sane townsfolk and the insane voyagers. The modern stigma of madness was born on these ships, and they proved to be the forerunners of the mental asylums of later generations. Trimble (1991) states that it was not until the eighteenth century that people started questioning the association of epilepsy with possession. He states that in 1770 Tissot (1728-1797) published a treatise on epilepsy that linked it to masturbation. In the book L’onanism, Tissot hypothesised that amongst other things, masturbation caused epilepsy. This belief became extremely influential, and in a puritanical society it created a strong social stigma against epilepsy. This view also needs to be seen in light of the focus towards “reason” during the Classical episteme (the Enlightenment). Reason was seen as supreme, and madness (including epilepsy) was pushed to the bottom of the hierarchy. The incarceration of the mentally ill (3) (including epilepsy sufferers, pregnant women, mentally retarded, etc) into asylums, separated “rational man” from the irrational, animalistic aspects of society. This was a form of oppression in which large segments of society were looked down upon (4). These people could then be treated with impunity. They could be locked up and forgotten about, without moral obligation or concern. Foucault (1965) shows the extent to which “Reason” biased the view of Europe – the display of the insane as entertainment. The locked doors of the asylum were opened periodically to allow the bourgeoisie to pay to see the madmen perform like circus animals. The attendants cracked their whips and the mad danced and performed acrobatics. Naturally, a “rational” person could not stoop to the inhumanity of being an attendant. The attendants were themselves inmates of the asylum – madmen displaying madmen for the pleasure of the “civilised” and “rational.” From the nineteenth century, we see increased awareness of epilepsy as separate and distinct from other forms of madness. Trimble (1991) states that hospitals started to create epilepsy wards, and that some older asylums even excluded epilepsy sufferers from admission because they could not be treated and were taking up valuable space. Newer asylums however, took up the slack and specialists were able to see and treat epilepsy sufferers in greater numbers. On the surface this would appear to be a beneficial change. People were studying the condition in greater detail and in greater numbers. Numerous books were being written on the subject, and there was a plethora of studies containing invaluable data. As the century progressed, Western society began to see epilepsy as an illness of the brain. Jackson wrote extensively on the subject and agreed with Falret (1824- 1902) in saying that not only was epilepsy physical, but there was a link between epilepsy and a “convulsion of ideas” (Trimble, 1991). Thus the stigma against epilepsy was insidiously altered. No longer was it seen as a perversion against God and reason (although this view was still prevalent), but instead as a disease in which the sufferer was buffeted by physiological forces which needed to be overcome. These people needed to be “helped” back towards a state of “normality.” The experiences of the epilepsy sufferer were often discredited as religious delusions. Trimble (1991) states that Howden (1873) studied religiosity in epilepsy sufferers, giving several case studies that suggested that “many religious fanatics were epileptics” (Trimble, 1991, p. 9). In this approach we see a forerunner of scientific positivism. Implicitly, it puts scientific objectivity as superior to individual subjectivity. People who follow this belief often forget that their own views are based on their own individual physiological make- up. It is a form of oppression that denies the rights of minority individual subjective experiences. Explaining away a “religious experience” as an epileptic seizure discredits the sufferer’s experience, while forgetting to realise that the observer’s experience is based entirely on individual subjectivity also. This bias against epilepsy is more subtle, but no less real than the view that proclaimed the superiority of rationality. The twentieth century has essentially refined the model of epilepsy developed toward the end of the nineteenth century. Late nineteenth and early twentieth century views saw epilepsy as degenerative and hereditary (Trimble, 1991). Maudsley (1879, cited in Trimble, 1991) stated that epilepsy led to idiocy, and parents who were victims of epilepsy passed the affliction down to their children. Turner (1907, cited in Trimble, 1991) had similar views in this respect. Epilepsy was also linked to schizophrenia in some studies (eg Yde (1941), Krapf (1928), and Glaus (1931), cited in Trimble, 1991). This all contributed to the perception of epilepsy sufferers as inferior. However, perhaps what is most revealing in recent years, is the stigma attached to the terminologies that are used to describe the people who have epileptic seizures. There is increasing awareness of the derogatory nature of some terms, and efforts are made to alleviate this discrimination (often to a ridiculous extent). However, all terms can be viewed in the light of an individual’s biases – new terminologies are not excluded from this. Ironically, the question for this assignment specifically requests that people who have epileptic seizures should not be referred to as “epileptics.” Instead it uses the terms “victims of epilepsy” and “epilepsy sufferers.” This is evidence that implicit judgements still abound on how epilepsy should be perceived. Despite our attempts at PCism, “victim” and “sufferer” are still words that imply negativity towards the “illness” or “disease” of epilepsy. While it is clear that many of the “sufferers” are indeed sufferers (in the sense that their experiences are unpleasant), it is certainly not the case that they all are. Trimble (1991) quotes Dostoievski as saying “I had the feeling that the sky had descended to the ground and swallowed me up. I truly felt the presence of God, and he entered into me.” These are not the words of a sufferer or victim. We are still in the grips of Classical views on madness and epilepsy. “Madness cannot be found in a wild state. … [T]he twentieth century collars madness, and reduces it to a natural phenomenon bound up with the truth of the world. This positivist appropriation gave rise to … the scornful philanthropy which all psychiatry displays towards the madman…” (Interview with M. Foucault published in Le Monde, “La Folie n’existe que dans une sociéte,” cited in Wicks, 1998, p. 246). Foucault shows that even today we exhibit our oppressive biases when we attempt to “help” someone change to a more socially desirable mental state. Despite our lip service to pluralism, we are still caught in our egocentric and ethnocentric mentalities. When we deem that someone requires help, we are saying, “you are inferior.” Our society is such that even the “sufferer” often believes this to be true. Conclusions We have seen that epilepsy has a wide range of symptoms that may or may not occur in any one individual case. This has resulted in the necessity to provide a comprehensive method of labelling some of the many different forms that epilepsy may take. Symptoms that are considered in the diagnosis and labelling of epilepsy are the location/s of disruption within the brain, whether consciousness is impaired, and the physical and mental disturbances that occur. As we become more knowledgeable about the aetiology and symptomatology of epilepsy we may find it necessary to narrow these definitions even further. The bulk of this essay examined the different perceptions of epilepsy in various cultures throughout history. The extent to which epilepsy is stigmatised or discriminated against is largely dependent on the perception of its causality. Concepts such as fate, karma, or the wheel of life essentially negate the necessity for societies to actively accept or reject the worth or deficits of epilepsy as a whole. In the polytheistic world that the Greeks inhabited it was very easy to accept epilepsy as a natural part of life. This is not to say that it was a pleasant experience, just that it had a purpose within a larger scheme of things. On the other hand, as Europe and her colonies began to see epilepsy sufferers (and madmen) as ontologically different, this difference began to be seen as synonymous with inferior. Possession, non-reason, and illness are all manifestations of a similar view that distances epilepsy sufferers from the “normal” population. Historically, this distancing developed into physical distancing, using tools such as the Ship of Fools or the asylum. This does not occur to the same extent within Modernity, epilepsy sufferers have been mostly reintegrated into the community, but the distancing still occurs psychologically. Even though we like to think that we are more accepting of epilepsy (and abnormality in general) the terms we use (such as victim and sufferer), and the fact that we feel the need to “help” people, show that we have not yet distanced ourselves completely from the Classical perception of the world. References: Aicardi, J. (1994). Epilepsy in children (2nd ed.). New York: Raven. Foucault, M. (1965). Madness and civilization: A history of insanity in the age of reason. New York: Vintage Books. Pinel, J. P. J. (1993). Biopsychology (2nd ed.). Boston: Allyn and Bacon. Rosenhan, D. L. & Seligman, M. E. P. (1995). Abnormal psychology (3rd ed.). New York: Norton. Smart, N. (1996). The religious experience (5th ed.). Upper Saddle River, N.J.: Prentice Hall Thompson, P. J., & Trimble M. R. (1996). Neuropsychological aspects of epilepsy. In I Grant, & K. Adams (Eds.). Neurological assessment of neuropsychiatric disorders (pp. 263-287). New York: Oxford University. Trimble, M. R. (1991). The psychoses of epilepsy. New York: Raven. Warner, R. (1967). The stories of the Greeks. New York: Farrar, Straus & Giraux. Wicks, R. (1998). 20th century French philosophy: Bergson to Baudrillard. Unpublished manuscript. University of Auckland. Endnotes: 1 This, in itself, shows the misunderstandings and stigmas associated with epilepsy, even in modern academic texts. 2 This same story is also given in Mark 9:17-29 and Matthew 17:14-18 3 The first mental hospital was the Hospital Generale in Paris in 1656 (Foucault, 1965). 4 Within several months of the Hospital Generale opening, more than 1% of the population of Paris had been removed from the streets and confined (Foucault, 1965).