To begin with, let us invoke a particularly characteristic story. It is the story life of Archibald Alec Leach, widely known as Cary Grant (1904–1986). In 1913, nine-year-old Cary Grant was informed by his father that his mother left them. However, many years later, when he had become a famous actor, in his late thirties and after the death of his father, he discovered that his mother was still alive and confined in an institution for mentally defectives. Her confinement had been an inhumane initiative of his father, in order to be able to live with his mistress (Mazower 1999).

Obviously, this particular case became widely known due to the involvement of a famous and popular Hollywood star. Nonetheless, it had not been the only one. In late-nineteenth and at the beginning of the twentieth centuries, there were quite many cases of people with mental and neurological disorders, with slight psychic disorders, or even cases of entirely healthy people, who were confined in institutions for mentally defectives, after the initiative and actions of their family for several, interrelated reasons; more often, on the basis that they constituted an economic, social and emotional burden and, at the same time, because they were regarded as a possible danger towards both their family’s stability and the social body’s prosperity. Besides, as we saw in the previous chapter, the category of “mental deficiency” was extremely flexible, including a great variety of social groups and individuals, who were identified with everything that was considered as socially, politically and epistemologically “dangerous” and “divergent”, and who, according to the degeneration theory, would, in all likelihood, lead to the reproduction of equally, or even more “dangerous” and “divergent” offspring. As it was underlined by A.F. Tredgold in Mental Deficiency: (amentia), published in 1908, “[t]he whole tendency of recent enquiries is to show that the feeble-minded are not an isolated class, but they are merely one phase and manifestation of a deeply ingrained degeneracy. They are kith and kin of the epileptic, the insane and mentally unstable, the criminal, the chronic pauper and the unemployable classes, and I am convinced that the great majority of the dependent classes existing today owe their lack of moral, mental and physical fibre to the fact that they are blood relations of the feeble-minded and are tainted with their degeneracy” (Rose 1985: 105–106). Eugenics’ racist discourse was now becoming extremely intense and fanatical.

In fact, a direct outcome of the turn towards the medicalized/neurological explanation and treatment of epilepsy, as well as of any other neurological disorder, had been the gradually intensifying objectification, pathologization and confinement of all those suffering from these disorders, as well as of all those who were considering as having a “dangerous” inclination towards the manifestation of these diseases, due to their “sinful” past. However, there was now noted a significant difference with the past, based upon a paradox; in other words, the negative feelings and reactions of a great majority of people towards them were not based upon theological explanations, superstitions and lay beliefs, but upon a novel, solidly constructed scientific – and, actually, for this reason, indisputable – rational ground. For, “to have a portion of our population declared physically unfit serves an important social function” (Dell 1986: 206). From this perspective, in order to be able to evaluate epileptics’ contemporary condition and position within society, it would be useful to briefly present epilepsy’s course, after its emergence as a neurological disorder during the second half of the nineteenth century until our days at the beginning of the twenty-first century. This venture will enable us to understand the historical significance of epilepsy’s interpretation as a purely neurological disorder and, more importantly, to understand the ways in which scientific knowledge is produced and disseminated, its impact upon (epileptic) patients’ lived experience and, consequently, its impact upon the whole population.

As the nineteenth century was approaching its twilight, European and, especially, British neurologists were making essential progress in the study and explanation of epilepsy. At the same time, they were taking the lead from their fellow French neurologists, by considerably extending the nosological category of the disease itself – shrinking, at the same time, the nosological category of hysteria. Neurologists’ daily contact with epileptic patients in the wards of the general and neurological hospitals contributed to the incessant observation, recording and examination of the illness and its diversiform manifestations, leading to new categorizations.¹ Epilepsy was now presenting a series of diverse neurological symptoms and could be linked to several brain dysfunctions.

Without doubt, beyond the nosological part, the most important steps took place regarding the diagnostic and therapeutic dimension of epilepsy. In this way, neurologists’ diagnostic potentials were greatly reinforced by the discovery of X-rays by the German physician Wilhelm Conrad Röntgen (1845–1923) in 1895,² and of cerebral angiography by the Portuguese Egas Moniz (1874–1955) in 1928 (Solomon et al. 1983; Porter 1999). In addition, after the mid-nineteenth-century introduction and domination of potassium bromide in the confrontation and therapeutic treatment of epilepsy, phenobarbital made its entrance to the forefront, along with the dynamic consolidation of surgery, which was gradually gaining more fervent adherents. Even though barbituric acid, the first fruit of synthetic chemistry and the future basis of most tranquillizers and sedatives, had appeared in 1864,³ it took almost seventy years until the German physician Alfred Hauptmann (1881–1948) would proceed to the clinical use of phenobarbitone as an antiepileptic in 1912. It was only in the 1920s that it widely circulated in Great Britain (Scott 1993).

In the Interwar period, there was noted a revival of the interest in epileptic patients’ diet, leading to the appearance of the ketogenic diet during the 1920s (Kossoff and Vining 2004; Freeman 2005; Scott 1993). The ketogenic diet is a diet rich in fat, adequate in proteins and poor in carbohydrates, which, through the production in the human organism of the ketone bodies that are induced by this particular form of prolonged fasting, is supposedly functioning as an antiepileptic medication. Already, in classical Antiquity, Hippocrates and Galen, as well as most of their followers, put a special emphasis upon their patients’ diet, including both their nutrition and their general way of living. In this way, during the 1920s,⁴ the ketogenic diet was mainly used for the control of epileptic seizures in children. It reached its peak during the 1920s and 1930s, being gradually abandoned. However, it is still used in some case in our days, alongside anticonvulsant medication, with occasionally positive results – it is considered as particularly effective in children suffering from the atonic/myoclonic seizures of Lennox-Gastaut syndrome (Freeman 2005).

Nonetheless, during this period, two were the major novelties that defined and determined the further course and evolution of the study and treatment of epilepsy within the next decades. The first was, without doubt, the realization of the first human electroencephalogram (EEG) by Hans Berger (1873–1941), in 1929. It was the first attempt to record the brain waves, which he characterized as “alpha-und-beta Wellen”, in order to record the brain’s electrical activity (Scott 1993). Being a psychiatrist himself and having the experience of treating a great number of wounded people with cranial abnormalities during World War I, his aim was to indicate the connection between mental diseases and EEG. Nonetheless, he faced great difficulties in persuading his fellow neurologists regarding the value of his discovery and its significance in the study of epilepsy. Moreover, the political conditions in Germany that were marked by the advent of National Socialism and the Nazi domination contributed considerably to his definitive isolation. Even though he did not have the chance to see the results of his efforts, as he hanged himself on 1 June 1941, the EEG had been widely used from the 1940s onwards. Despite its weak points – mainly, due to its short time of recording, as well as due to the fact that many epileptics present a normal EEG when the recording is taking place in the intervals between their seizures – the EEG is still constituting one of the basic tools in the detection of various brain disorders and the localization of a series of neurological diseases, from epilepsy and dementia to cerebrovascular accident and Alzheimer (Solomon et al. 1983). It is within the frame of its, according to many scientists, limited potentials in the diagnosis of diverse possible cerebral disorders that there were invented various auxiliary techniques; among others, the adoption of a series of procedures aiming at the provocation of artificial seizures (hyper-ventilation, photic stimulation, etc.),⁵ as well as the incessant recording of brain activity (i.e., during sleep) with various means, such as through prolonged EEG recording by telemetry or radio transmission.

The second, equally determinative innovation, during this period, was the discovery of phenytoin. Even if phenytoin had been already synthesized in 1908 by the German chemist Heinrich Biltz (1865–1943), it had to pass thirty years for the scientists to appreciate its antiepileptic action, in 1938, when it entered with the brand name dilantin sodium in the lists of Parke-Davis.⁶ Phenytoin, which became known as a drug with this brand name in the 1950s in Europe and in 1975 in the U.S.A., is still today one of the most popular antiepileptic drugs and is included in the 86.1 % of the first-line antiepileptic drugs in the countries’ list of essential drugs (WHO 2005).

The years that followed World War II witnessed the first studies on radioisotopes and their use in the reading of the human brain. Additionally, another antiepileptic drug, which became quickly very popular, made its dynamic appearance. The only difference this time was that it came from a Swiss pharmaceutical industry, namely, Geigy; this new antiepileptic was carbamazepine. At the beginning of the 1950s, within the context of the appearance of Largactil, the first psychotropic, in 1952, the search for new and more efficient psychoactive/psychotropic drugs led to the synthesis of a series of medicaments that eventually led to carbamazepine (Scott 1993). This particular drug drew once again to the surface the relation between epilepsy, on the one hand, and depression and other psychiatric disorders, on the other hand; these issues had been temporarily abandoned by neurologists, since the introduction of the EEG had showed that the electrophysiological basis of epileptic seizures and that of psychoses were different (Schmitz 1998). Nonetheless, as carbamazepine presented relatively few side-effects, it was considered as rather safe and is still used with its double quality, that is, as both antiepileptic and psychotropic. Moreover, the end of the 1950s witnessed the first comparative trials between the, until that time, most widely used antiepileptic drugs, potassium bromide and phenobarbital; both proved equally efficient (Shorvon and Sander 1996). However, it was ascertained that, beyond the successful reduction in the number of epileptic seizures, these two drugs contributed to the provocation of another pathological condition, to which we have already referred to; that is, Status Epilepticus (Scott 1993).⁷ In fact, it did have to pass many decades until 1959, when R. Hunter underlined that this particular condition was especially rare before the extended use of bromides from the middle of the 1850s onwards. Soon, it was appreciated that the sudden withdrawal of these drugs – at first, of the bromides and, then, of phenobarbital – could provoke Status Epilepticus; initially, it was attempted to confront it with the recently discovered “benzodiazepine”. However, even in our days, Status Epilepticus is considered as a very dangerous and extremely difficult to treat condition; it is indicative that it presents a mortality rate of about 10 % and that 26 % of the total number of epileptic patients’ death is attributed to it (Theodore and Porter 1989; Solomon et al. 1983).

Sodium valproate constituted the next antiepileptic drug that would dominate in the treatment of epilepsy, within the next decades. Despite the fact that it had been already synthesized in 1881, its potentials were appreciated with a rather great delay – particularly, in 1962 (Scott 1993). From then on, it has remained one of the first choices of neurologists and neurosurgeons for the treatment of many types of epileptic seizures – even, for the treatment of the drug-resistant absences. It is indicative that its success fluctuates between 75 and 100 %. However, it should be underlined that sodium valproate presents a series of rather severe side-effects – among others, abnormities (in pregnant epileptic women), liver failure and hair loss. As it is usually the case with the rest of anticonvulsant drugs, these side-effects influence noticeably and affect variably the quality of epileptic patients’ life; an issue to which we are going to return in the following section.

In 1970, there was published the first “International Clinical and Electroencephalographic Classification of Epileptic Seizures”, that is, the first official attempt to classify and categorize epileptic seizures. At the same time, 1973 was marked by the discovery of Computed Tomography (CT) by Sir Godfrey Newbold Hounsfield (1919–2004).⁸ CT would open new horizons in the thorough study and cartography of the human brain, as well as in the concomitant detection and confrontation of a great variety of pathological disorders and dysfunctions. Additionally, the discoveries of Magnetic Resonance Imaging (MRI) in 1977, of Positron Emission Tomography (PET) and of functional Magnetic Resonance Imaging (fMRI), an advanced type of MRI, at the beginning of the 1990s, which all constituted, as a matter of fact, advanced forms of CT, contributed further to the more analytical depiction and meticulous representation not only of the brain, but of the whole human body, its parts and its multidimensional functions. Without doubt, these new, more detailed and more integral diagnostic methods gave a new impetus to the study, interpretation and treatment of epilepsy. Moreover, the advances in the late twentieth-century neurosciences have dramatically changed and deeply influenced, as we are going to see in the following, the explanation and treatment of almost all neurological, as well as psychiatric, disorders.

The decades that followed until the beginning of the twenty-first century witnessed the revival of the interest in the surgical treatment of epilepsy and the attempt to perfect it, especially, within the frame of the advent of modern imaging and the concomitant molecularization of the human body and life. Nowadays, there are several types of epilepsy surgery (temporal lobe resection for mesial temporal sclerosis, lesion surgery for epilepsy, non-lesional resective surgery, hemispherectomy, etc.), constituting often the first option, always according to the specific type of epileptic seizure, and after the full and extremely precautious presurgical evaluation of the patient (Shorvon 2004). In any case, one of the most important factors for a surgery’s success is the explanation to the patient of the pros and cons, as well as of the potential benefits and risks, which could result from a surgery (Andermann and Harkness 2008). Accordingly, there has been noted an abandonment of polytherapy and a simultaneous turn towards monotherapy, through the appearance of new, more drastic and more effective antiepileptic drugs.⁹

So, the issue is now to examine several key aspects and dimensions of the nowadays condition of epileptic patients, in juxtaposition with the above scientific “achievements” and diagnostic innovations that marked epilepsy’s course from the mid-nineteenth until the beginning of the twenty-first centuries. What transformations have the above discoveries brought about in the life and daily round of those suffering from epilepsy? Did actually the “invasion” to their brain succeed in improving their living conditions, in integrating and absorbing them within the social body and, eventually, in de-marginalising them? And, if actually so, under what circumstances has it been rendered possible? All in all, how can the adventure of modern epilepsy be included within the general transformations that medicine has experienced, and is still experiencing, from its consolidation as a distinct scientific field and as a specialized scientific discourse until our days?

To elucidate epileptics’ living conditions in our days, we should begin with the recent adventures of two epileptic patients. Both stories are, to our view, quite indicative of a rather dominant tendency of regarding and confronting those suffering from epileptic seizures, as well as those suffering from other neurological and psychiatric disorders; we should notice that, in the case of mentally ill people, the prejudice and negative feelings towards them are by far more severe and intense. Despite the fact that the following incidents are undoubtedly extreme, they do not constitute rare phenomena within contemporary western societies. The first is the story of the forty-eight-year-old D.B., in Pontiac, Michigan (U.S.A.). D.B. was suffering from complex partial seizures – usually, one per week (Avila and Setrakian 2006).¹⁰ One evening in April 2006, he was taking his regular daily walk in his neighbourhood, as a form of rehabilitation to help restore the function in his legs that was impaired following a brain surgery to treat his seizures. Suddenly, D.B. experienced another epileptic seizure. A passer-by, seeing him acting “erratically” – particularly, she believed that he was masturbating in public – immediately called the police. When the police officers arrived to the scene, they failed to recognize the medical alert bracelet he was wearing, assuming that his failure to respond to their questions and his involuntary movements amounted to resistance. So, they kicked the bag he was carrying, and D.B. was tasered with 50,000 V through his body, was hit with a police baton, was threatened with gun and was handcuffed behind his back – extremely dangerous for someone in a seizure, since the restraint may cause him/her further upset and disorientation. D.B., due to some gap in the Michigan legislation, was forced to plead not guilty by reason of insanity. He was confined, for more than three weeks, in the psychiatric department of a penal institution, where he experienced, at least, two more seizures. Any comments by the patient about his “adventure” are not included in the relevant articles and it has not been possible to find any.

The second incident is the story of the ex-reporter of the British GMTV (‘Good Morning Television’) L.P., thirty-one years old. L.P. was claiming the, rather high, amount of 500,000₤ by the TV channel, in compensation after being sacked in July 2006 (Anonymous 2007a). The young woman was claiming that her problems started in 2005, after her demand not to work night shifts, as she had presented one epileptic seizure after having worked ten night shifts in a fortnight. According to her testimony, the TV channel representative, instead of being friendly and supportive, was rather offensive and, eventually, fired her by phone. On his side, the TV channel counsel accused L.P. of feigning epilepsy, in order to avoid night shifts. Eventually, the court did not justify the young journalist, as, according to the President H.W., she had not been honest and could not give an accurate account of the condition of her health. So, what exactly could we infer from the above incidents?

There are many points in these two stories that could actually impress the reader. Without doubt, police violence and labour arbitrariness are certainly shocking, especially, towards people suffering from chronic illnesses. Accordingly, the difficulties, which most epileptics face in their daily life, as well as in their attempts to find and maintain any kind of regular employment, should definitely concern us. Unfortunately, a quick look on some indicative data suffices to reveal the “obvious” point; namely, that most epileptic patients, as it is the case with the overwhelming majority of those suffering from chronic, incurable and, especially, mental diseases, are also suffering from constant marginalisation and social isolation, even in an era that is admiring itself for its scientific and, consequently, rational and objective understanding and explanation of any kind of phenomena.

From this perspective, recent researches reveal that the concealment of epileptic seizures constitutes a rather common practice of epileptic patients, in order to confront the harsh reality of their disease and its numerous difficulties (Dell 1986). For instance, according to a recent research in Great Britain, 1/6 of those who stated in an anonymous questionnaire, that they were suffering from epileptic seizures during the last year, admitted that they had concealed the fact of the seizures per se from their General Practitioner (Dalrymple and Appleby 2000).¹¹ Accordingly, the unemployment rates of those who had concealed their illness were obviously lower – about 17 % – than of those who had openly stated that they were suffering from epileptic seizures during the last year – about 47 %. Moreover, 40 % of those who had anonymously stated that they were having seizures during the last year did actually have a driving license; however, only 25 % of them had admitted it to their GP.¹² As one epileptic patient explains: “People say: ‘Well, why don’t you drive?’ And you have to start inventing excuses. You can’t afford – you see, there’s still a certain amount of social stigma, a large amount of social stigma on epilepsy; and you can’t afford to turn round and say to the public at large: ‘I don’t drive because I’m an epileptic’, because, as far as they’re concerned, an epileptic is a lunatic” (Scambler 1989: 54).

Of course, this inclination towards the concealment of epilepsy should, by no means, surprise us. Suffice it, to our view, to invoke the webpage of ‘Epilepsy Foundation’, one of the biggest voluntary organizations in the U.S.A., which is exclusively occupied with informing and supporting those suffering from epilepsy, as well as their families and friends. It is quite characteristic that in the “employment” section, there is suggested the concealment of the disease from the future employer. More specifically, the following are stated: “It is not always necessary to discuss epilepsy with a potential employer, however. Whether you do or not is up to you. If you have excellent seizure control and the employer does not ask any health-related questions, there is no reason to start talking about epilepsy unless you want to. Under the Americans with Disabilities Act, employers with more than fifteen employees may not ask any health-related questions until after they have offered you the job” (Epilepsy Foundation 2014).¹³ This suggestion is, by no means, accidental. The taunt and isolation that most epileptic children experience in school, the over-protectiveness on the side of their parents, the feelings of fear and discredit by their wider, family and friendly environment, the forbiddance of having a driving license, the great difficulties in finding a regular employment, the difficulties in obtaining a life insurance, the more general ignorance about the disease and its multidimensional manifestations and, for this reason, prejudice against it – that is, the fact that most people do actually identify epilepsy exclusively with the symptoms of generalized tonic-clonic seizures – are just some of the major reasons that contribute further to the stigmatization of those suffering from epileptic seizures, leading them to their self-censorship and self-isolation. It is exactly for these reasons that depression is the most often psychiatric comorbidity in epileptics – and not, as some physicians still ascertain, due to certain antiepileptic drugs’ side-effects or some general hereditary predisposition (Kanner 2006; Robertson 1998). Epileptics’ demerit and depreciation by society, within which they are trying to make a family, to work and, eventually, to live, is reflected in both the scientific explanation and treatment of their disease, and the dominant legislative framework. It is these factors that are constantly leading them to the margins of the social body and to a never-ending, yet thunderous, silence.

Within this context, it is worth examining some characteristic data in reference to the medical dimension of epilepsy that would lead us to equally discouraging conclusions. For, it might be that the new diagnostic methods and recent scientific novelties have noticeably expanded the horizons and limits of the medical knowledge concerning epilepsy; nonetheless, this scientific knowledge does not concern, does not address to and does not help every single patient. Under these circumstances, the data presented by the World Health Organization (WHO) for 2005 are, as a matter of fact, indicative of a general, often disheartening condition. Some illustrative examples do, to our view, suffice (WHO 2005). To begin with, 86.9 % of the total number of the countries under examination has the possibility of EEG recording, 85 % has access to CT and 68.6 % to MRI. On the other hand, just 50 % has the possibility of prolonged EEG recording by telemetry; particularly, prolonged EEG recording is possible in 77.1 % of the so-called “high-income countries” and only in 21.7 % of the so-called “low-income countries”. Additionally, epilepsy specialists are available in 70.3 % of the total number of countries – it is noteworthy that the percentage falls to 43.5 % for southern Pacific and to 57.1 % for Africa. More specifically, in 85 % of the total number of the countries under study one can find available neurologists for the provision of medical care and treatment to those suffering from epilepsy, and in 77 % there are available neuropaediatricians, as well, while specialized education for epilepsy is available in just 15.8 % of the countries. In addition, the surgical treatment of epilepsy is available in just 40.9 % of the countries under examination. More specifically, the surgical treatment of epileptic seizures is not available in 88.6 % of the African countries under study, in 68.2 % of the countries in western Pacific, in 66.7 % in south-east Asia, in 50 % in America and eastern Mediterranean, and in 33.3 % in Europe. Respectively, there are no available services of social rehabilitation for patients in 68.2 % of the total number of the countries under study in western Pacific, in 66.7 % in south-east Asia, in 57.1 % in eastern Mediterranean, in 37.8 % in Europe, in 37.1 % in Africa and in 25 % in America. Furthermore, a special budget for epilepsy care and health services for epileptics is available in just 6.4 % of the total number of countries, while any kind of disability benefits is available for people with epilepsy in 46.5 % – this percentage is raising up to 82.4 % for high-income countries, while it is falling to 14.6 % for low-income countries. Lastly, it is interesting that, according to those suffering from epilepsy in the countries under examination, their major problems are the lack of drug supply (52.3 %), the poor community knowledge and awareness, the cultural beliefs and stigma (52.9 %), and the government lack of resources, poor economy and lack of infrastructure (32.3 %) – the respective percentages on these issues, according to health professionals, are 53.2 %, 43.6 % and 39.1 %.