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Integrating Mind, Brain, Body, and Spirit in Treating Epilepsy (Cont.)
Psychological Approaches
Psychological factors in epilepsy have been neglected until the last few years, although the overlap between epilepsy and migraine, depression, and other mental illness has been known for over a century. Sir William Cowers, the great nineteenth- and early twentieth-century neurologist, published his book, The Borderland of Epilepsy, in 1907. (it is now out of print. Oliver Sacks' Migraitte (1 9851 14 ADVANCES,TliejournalofMind-BodyHealtli Vol.8,No.4 raiII992
draws extensively on Gowers.) The high rate of suicide and depression among people with epilepsy has been verified in a number of recent studies.
What is more, there is a growing recognition that we are whole and complex organisms, whole and complex beings in the deepest human sense as well as in the medical sense. The psychiatrist Peter Fenwick (1991) writes:
The neurologist sees the pathological seizure discharge as arising in a particular structure and spreading through distinct brain areas. The psychiatrist sees the aura (which is the beginning of the seizure discharge) as an experience which is followed by an alteration in the subjective world of the sufferer as the epileptic discharge sweeps through his/her brain. Within the seizure discharge is the synthesis of neurology and psychiatry.
"Seizures do not occur in a behavioral vacuum," he continues. "With the detailed knowledge that we now have of the epilepsy focus and the way that it is connected to the surrounding cerebral mechanisms, it really is not surprising that seizure control is significantly influenced by altering the outlook and behavior of the patient with epilepsy."
Psychosocial stresses and strains from epilepsy are well recognized. They affect families and friends, marriage and the ability to marry, self-esteem, choosing work, looking for a job and keeping it, obtaining a driver's license, getting insurance-the list goes on. For these reasons epilepsy societies around the country sponsor extensive job programs, support groups, and other services. Relieving these stresses can reduce seizure occurrence as a number of researchers (including Mariah Snyder and David Coulter) have shown.
The reverse is also true. The 31-year-old patient at Bethel who reduced his seizures through biofeedback feels he can now consider changing his work to a field more satisfying and less frustrating; he sees himself living independently for the first time. "What counts in a self-control approach," writes the psychologist in charge, "seizures decreaseself-esteem increases" (personal communication).
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Medical and behavioral approaches in combination currently hold the highest likelihood for seizure control and, possibly, elimination.
The psychological aspects of epilepsy certainly go deeper than the psychosocial. The incidence of depressions and suicide is much greater among people with epilepsy than it is in the general population (Mendez, Cummings, Benson 1986) or even among people with far more disabling problemsamong paraplegics, for example. Child abuse-physical, sexual, and emotional-has been implicated in epilepsy, as has the battering of women. These issues then are often deeply buried in memory and are not easy to face either for the individual or for practitioners. As a consequence, the issues are resistant to research.
What varieties of psychotherapy help to reduce or eliminate seizures? Since the early work of Williams, Spiegel, and Mostofsky (1978), a pattern has emerged that combines behavioral intervention and brief psycliotherapy. Donna Andrews has had remarkable success in reducing and eliminating seizures with this model (Andrews 1989 and Schonfeld 1992). In as few as 15 individual counseling sessions, she takes the person with epilepsy along a path to 'channel negative emotions into productive outlets." She stresses "expression, self-acceptance, the negative emotional state as a demand of reaction, and taking action." Her aim is to help the individual cultivate compassionate self-acceptance and relieve deeply conflicted emotional states that may lead to seizure activity' The therapy is accompanied by behavioral intervention.
Elsewhere, family systems work has been found effective for people with epilepsy (Ashley, personal communication), and I am told of a remarkable therapist in Stockholm, Sweden, who works with people with epilepsy using psychodrama and expressive arts.
One research study has shown group cognitive therapy to be ineffective (Tan ind Bruni 1986).
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Understanding why a seizure breaks through at a certain moment is critical to all seizure-specific approaches and to an integrated view of epilepsy and its treatment.
There is a great need for research to validate seizure-reducing therapies and the training of therapists knowledgeable in epilepsy. I know of one case where a woman had gone through many years of psychotherapy, unsuccessfully trying'to control her bursts of anger. Only after she found an epileptologist/psychiatrist were these bursts diagnosed as a complex partial seizure and treated successfully with both psychotherapy and medication. She is now off both.
Spiritual and Creative Aspects of Epilepsy
Over the centuries, epilepsy has been connected with supernatural powers, both good and evil. Extraordinary intuition, extrasensory perception, precognition, out-of-body experiences, high creative gifts, and vivid religious experiences are described in the literature of epilepsy. The Delphic oracle was chosen from women with epilepsy, and prophesying epileptics were a phenomenon of the Middle Ages. One contemporary woman has told me of her success in gambling. "I always know the next card," she said.
The spiritual and creative experiences associated with epilepsy run head on into the scientific-materialistic basis of modem medicine. Neurologists tend to see such experiences as symptoms and to consider them a phenomenon associated with only famous people known to have epilepsy-Van Gogh, St. Paul, Dostoyevsky, Edward Lear, Julius Caesar. But more ordinary mortals have similar experiences, and the experiences need validation not as pathology but as meaningful occurrences. When nineteenth-century neurologist John Hughlings Jackson wrote about the creative and spiritual dimensions of epileptic experience, he called them "portals," gateways to the nonordinary, doors between the known and the unknown.
The individual may or may not treasure these experiences. Toward the end of her life, Teresa of Avila was humiliated by her sudden trance states. Dostoyevsky, on the other hand, found his seizures a religious ecstasy. One woman artist, who has the experience of leaving her body during a seizure, writes (Schacterl993):
During my life-since early childhoodI've had many conscious "out of body' experiences, when I could travel about in the so-called 'second body' or "astral body" to familiar (and sometimes unfamiliar) places on earth. I have also had many conscious experiences in the "next world" or astral world with friends and relatives who have died.
What is shared by the neurophysiology of these experiences and that of epilepsy? No one seems to know: Are right-brain lesions more likely to be present? What is the neurology of intense imagination? A neurology of living experience does not yet exist. For people with epilepsy and anyone intrigued by the perpetually astonishing brain, the subject fascinates. Answers may produce therapies that allow these experiences while limiting the convulsive and the debilitating aspects of seizures.
How do we fit such highly subjective experiences into an integrated view of epilepsy? What is important is that a person values and expresses his or her deepest experience. I would urge everyone who has experiences of intense intuition and imagination and mystical experience to honor them, write them down, draw, or paint them. It does not matter whether one is talented or not, adult or child, normal or low functioning. Expression and validation are of utmost importance.
An Integrated Model
Treatment for epilepsy must include all aspects of the disorder: the individual with the condition, the neurology of epilepsy, its medical diagnosis, its several forms of
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treatment-medical, behavioral, psychological, psychosocial-and, not least, its spiritual and creative experiences.
How to put such an approach into practice presents difficulties. Since neurologists and medical doctors treat this condition, a new course of training would be necessary for them. In addition, neurologist and behavioral psychologist need to work as coequals. There are individual instances in which this is happening. "I sit down side by side with the neurologist," psychologist JoAnne Dahl has told me, "and we view the patient's video and EEG together." The course of treatment is planned jointly. The practice of neurologist Joel Reiter and psychologist Donna Andrews also illustrates the necessary interaction between the two disciplines.
Social services specifically directed at epilepsy sufferers would be another part of an integrated approach. Epilepsy-specific social services are already offered by some epilepsy associations around the country.
But these efforts are scattershot. To have all the medical, behavioral, psychological, and social services in one place would be the ideal. Such places exist, and the Epilepsy Center at Bethel in Bielefeld is the most fully realized that I have visited.
Bethel exists in a campus setting of low hills, winding roads, tall trees, and flowering shrubs, and it includes a community of facilities. Neurologist Peter Wolf, the current president of the German Epilepsy Society, heads the center. I-le told me that complete medical diagnosis and pharmacological treatment are central to the treatment offered. The 900-bed hospital (it serves the town as well) includes a neurosurgical unit (staffed, I was told, by Americans trained in Cleveland). Dr. Wolf takes a particular interest in the slow-brain potential biofeedback methodology, and one of its leading researchers, Andreas Duchting-Roth, heads this progriin for the center.
Under Assistant Director Rupprecht Tiiorbeck, the 125-year-old center provides extensive educational, psychological, and rehabilitative services: units for children and adults (both normally functioning and devel-
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What is shared by the neurophysiology of out-of-body experiences and that of epilepsy? No one seems to know.
opmentally disabled); a 70-bed unit for epileptic adolescents from disturbed families; a school with athletic facilities (the swimming pool is shared with the town); complete arts and crafts therapy programs; job training (based on a model developed in the United States, the Training and Placement Services Program, sponsored by the U.S. Department of Labor); a 700-person "sheltered workshop" (which provides light-industry jobs for the retarded); and a bank and shops staffed by residents.
The center is also studying behavioral methods for seizure control. The emphasis is on help for those with severe retardation and epilepsy.
Bethel and other such centers in Europe-the Epilesiezentrum at Kehl-Kork in Strausberg, Germany, Siiidvika neir Oslo, Quarrier's Village near Glasgow, the Chalfont Centre in England-should make up the curriculum of a traveling semester in every neurologist's training. The multidisciplinary model is flourishing in these places.
Even so, it is clear that the difficulties in establishing a mind-body-spirit multidisciplinary view of treatment are formidable. Not least among the difficulties is the need to excise the Cartesian dualistic paradigm from the body medical. Medical materialism and specialization have served us well in many respects, but much of the dissatisfaction and disillusion among patients today can be laid at their feet. What former Surgeon C neral C. Everett Koop calls "the undue influence of the medico-pharmaco-industrial complex" only adds to a widespread sense of dissatisfaction.
As one step in countering the Cartesian approach, I would draw the attention of readers to the work of the great scientist/ mathematician/philosopher, Alfred North Whitehead. In his collection of essays, Science
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It is clear that the difficulties in establishing a mind-body-spirit, multidisciplinary view of treatmen t are formidable.
and the Modern World (1925-1963) and Process and Reality (1929-1957), Whitehead proposed 11 a philosophy of science in which organism takes the place of matter" (his italics) and 11 space and time become the locus of events."
Whitehead was concerned with 'process" rather than "entities." "The process itself,' he wrote, "is the constitution of the actual entity," and "the process ... of any one actual entity involves the other actual entities among its components." His focus was "the becoming, being, and the relatedness of
1actual entities."' A medical paradigm that recognized the process and relatedness of the epileptic condition as well as its "stubborn facts" would be one that much more adequately serves the person with epilepsy.
Whitehead's essays, originally written in the now-remote 1920s, have prompted a new direction in a field far from mathematics and physics. "Process theology" is now a major development in religious thought. Is there a possibility of a "process medicine" rather than a solely materialist one? Surely, "becoming, being, and relatedness" can be applied to medicine as easily as to subatomic physics or concepts of God.
Such an approach would incorporate and enhance-all the treatment modalities for epilepsy discussed here: the neurological diagnosis, the anticonvulsant medications and surgical option, the behavioral methodologies for intervention and prevention, the psychotherapies that help to relieve deeply conflicted feelings and build self-esteem, the psychosocial assistance, the multidisciplinary center. A philosophy of organism in process and relatedness-"process medicine"-would embrace them all. | 
