The obvious place to go with this week’s reading is in the direction of neuroethics, specifically into the realm of what a diagnosis of temporal-lobe epilepsy (or other conditions, as in the reading in Heilman) means for different people in a practical sense, which is to say “how a diagnosis of TLE can have an ultimately positive or negative, singularly extraordinary effect on a patient’s life.” Lying Awake sets the topic up in the framework of Sister John’s religious faith, and later brings in references to famous cases (e.g., Fyodor Dostoevsky) and posthumous diagnoses of “likely candidates” (e.g., Vincent Van Gogh, Saint Paul of Tarsus); Sadi Ranson-Polizzotti addresses it repeatedly, if indirectly, in her references to how “in the Victorian era, epilepsy was a disease of ‘idiots’ and ‘madmen’” and “the stigma of the condition”; and the chapter of Heilman, for all its intense discussion of regions of the brain, inherently includes a human element because of the constant demonstration of concepts through case examples.
The most apparent issue at hand, most notably in Lying Awake, is how wildly a diagnosis can alter the fabric of someone’s life. On the one hand, we have two cases of epilepsy in this week’s reading where the diagnosis, ultimately, altered the sufferer’s life for the better. The easier of the two to discuss is Portia, Heilman’s epilepsy patient at Northeastern University: her “frequent and disabling” (Heilman, 75) grand mal seizures (big bad seizures; also called tonic clonic or major motor seizures, these seizures present with the convulsions typically associated with seizures in general) clearly and significantly upset her life, and the failure of drugs to regulate and control them leads to the conclusion that surgery may be the best option. She receives surgery, has the right amygdale removed, and her life returns to “normal” (Heilman, 76).
Sister John’s case sees the same eventual end, but takes the long way of getting there, no doubt due to the difference in the presentations of her epilepsy and Portia’s. The first marked difference is that, unlike Portia’s grand mal seizures, Sister John’s TLE seizures, with their prominent headaches, disturbances of vision (“the left side of her vision got blurry,” pg. 114), distortion of perception (c.f., pgs. 116 & 135), and the one fit of losing conscious awareness and “wandering around the choir, staring at the ceiling and humming to herself” (pg. 136), would be classified as complex partial seizures. Although they have the potential to be incredibly disruptive, complex partial seizures are often not as readily visible as the convulsions of grand-mal attacks, which complicates things: on one hand, the accompanying headaches and symptoms can be misdiagnosed as migraines (as they are with Sister John); on the other, the visions and altered states that usually typify a complex partial seizure can be seen as a benefit or a sign from God.
Further complicating the matter are the emotions Sister John experiences before and after her seizures. In contrast to the “normal” presentations of epilepsy, which, like Portia, are typified by fear preceding the onset of a seizure, Sister John’s TLE manifests with feelings of intense euphoria before she seizes, followed by the hypergraphia that leads to her impassioned spiritual writings. What afflicts her is known as Interictal, or Dostoevsky, Syndrome (the model Dostoevsky “followed so closely that the syndrome was eventually named after him”, pg. 120), “A condition sometimes observed in people with temporal lobe epilepsy, characterized by intense productiveness, often in writing or artistic work, between convulsions” (encyclopedia.com). Indeed, the most fear that we see Sister John suffering from during the course of the novel comes after her diagnosis, when she agonizes over whether to sacrifice her current understanding of God and her faith by accepting the surgery and losing her seizures, or to consider that she hasn’t been blessed and is, instead, just suffering from a neuropsychological disorder.
Although making the decision takes her some time, her choice is eventually shown to be a positive one, most overtly in the final scene, when her new “understanding” (pg. 181) opens the opportunity of being the novice mistress to the former actress, Claire Bours, and even in small details, such as Dr. Sheppard (aptly named, given his function of leading Sister John out of epilepsy and towards her true faith), whose “expression chilled her” (pg. 45) in their first meeting, giving her a box of discarded medical scissors to take back to the monastery.
Despite these two cases, though, we are also given one major case where the diagnosis of epilepsy is so powerfully stigmatizing that the sufferer no doubt denied it vehemently, and most biographers would rather make allusions of pedophilia than deal with it. The case of Lewis Carroll/Rev. Charles Lutwidge Dodgson is an interesting one, made more so by the presentation in Sadi Ranson-Polizzotti’s article. Throughout her extensive case, she expertly weaves back and forth between discussing Carroll/Dodgson’s epilepsy, its effects on his life, and how it influenced the creation of his stories (and, by extension, all of children’s literature), the accusations of pedophilia and why they’re so enticing, and how a good deal of the “evidence” used to condemn Carroll/Dodgson as a pedophile is either suspicious (e.g., the series of books that all reference each other, making claims about Carroll/Dodgson based on “gossip”) or able to be interpreted as a symptom of his epilepsy. The picture that Ranson-Polizzotti gives us is a rather bleak one; her interpretation of Carroll studies and of society in general doesn’t suggest that epilepsy is horribly misunderstood and unfairly stigmatized by most of the Western world, but only because she’s too busy clubbing the reader upside the head with the idea.
Regardless of where, exactly, the different materials for this week’s readings fall on the matter of what sort of effect a diagnosis can have on a person’s life, they offer us something even greater: a wealth of material with which to discuss the relationship between brain and behavior. If I may go on two brief tangents, the first regarding epilepsy, but away from this week’s reading, and the second within this week’s reading, but away from the topic of epilepsy: TLE and mood disorders are, actually, quite ideal for discussing the links between form and function in neuropsychology.
On the first tangent: in the opening chapter of her book Seized: Temporal Lobe Epilepsy as a Medical, Historical, and Artistic Phenomenon, author Eve LaPlante discusses Vincent Van Gogh as a “classic case” of TLE and shows the effect that the disease had on his life and personality, from prompting him to drink (unwittingly exacerbating his condition), prompting unprecedented fits of rage, and keeping him hospitalized for most of the last two years of his life. LaPLante begins with the extended fit that called for Van Gogh’s hospitalization on Christmas Day, 1888 – said fit involved threatening fellow artist Paul Gaugin with a knife, the infamous ear-hacking incident, and leaving aforementioned ear as a “‘keepsake’ for a prostitute who once posed for him” (LaPlante, 5) – and then traces Van Gogh’s personal history, family history, and medical history before concluding with how, in broad terms, the “more than a hundred alternative [posthumous] diagnoses” (LaPlante, 9) were wrong and it is a great disservice to ignore the fact that, in his lifetime, he was pegged as “[suffering] from a form of epilepsy” (LaPlante, 1). Clearly, even though Van Gogh’s diagnosis didn’t “save” him as Sister John’s (debatably) did, it is likely an important factor in examining his behavior.
On the second: the last case presented in Heilman’s chapter is that of Mary Jackson, the motivated inner-city Valedictorian who went to the Ivy League, succeeded for two years, and then underwent a rapid personality shift, the details of which take up most of the story. Heilman tells us quite expertly how she went from a high-achieving member of the Dean’s List to sleeping around, sleeping through classes, partying hard, and even contracting HIV, most likely as a result of her sex life. Although the eventual diagnosis of a pituitary tumor and its subsequent removal did not fix everything that the personality shift had altered – c.f., “Her mother thinks that she still loses her temper more rapidly than she did before the tumor developed” (Heilman, 85) – Mary still returns to “her old self” (Heilman, 85). In discussing Mary’s “old self,” Heilman is notably sparse with the details, but the effect is still clear: because of the brain tumor, Mary’s entire personality was upended and the course of her life had to be adapted to suit a virus she picked up on account of the tumor-induced personality changes.
We see the same notion in the rest of this week’s readings. From the sudden resurgence of faith that Sister John has because of her seizures, which is so overpowering that she can hardly stand to let them go until she sees their effects on her fellow sisters, to the altered states that Carroll/Dodgson committed to paper in the Alice books, we see fruitful examples of how the brain can have an overpowering effect on personality, behavior, and life itself. Naturally, it is dangerous to do all of our inferring based on atypical brains, but, as Heilman notes in his chapter, this is how a good deal of the work in this field gets done.
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I want to try to complicate what you've said about the ethics of neurosurgery as harmful or helpful. Not only do we have to consider how surgery can affect the quality of life of the patient, we have to consider how the surgery might alter that person's self. Heilman provides two very convincing arguments in favor of surgery/medical attention as a path to restoring the self in the Irish priest and Mary Jackson. Because of their brain injuries, both patients were not themselves, and at least Jackson became more her old self with treatment and the priest might have if his diagnosis had been speedier. Clearly, their selves were restored with medicine.
ReplyDeleteBut Sister John of the Cross is a very different case. Her strongest sense of self was tied to her seizures. Was her surgery repairing a wound or altering her self? If the brain is the physical structure of the self, do we alter the self when we alter it? How can we distinguish what should be fixed from what is abnormal but not broken? And when the self is so intrinsically constructed around brain damage, is it healing or creepy Orwellian brain-editing when a surgeon goes to work with a scalpel? I hope we get to address this in class, because I certainly don't know the answer.
I think Zach places these issues quite nicely in a framework that the field of 'neuroethics' could address. Particularly, how can we distinguish what requires medical intervention from what is abnormal/atypical but not broken?
ReplyDeleteFurthermore, the case of Jackson showed that these issues can lead to more classic illnesses that in quite indisputable terms require medical attention ex-HIV. If in fact this is a common occurrence, then to what degree can we derive that the original trait must be treated?
Kassie, Zachary, Neil--I think you’re all hitting the nail on the head. Questions of ethics are central to this week’s reading--for instance, as has been pointed out, Sister John’s surgery and the ambiguous gift or curse of her epilepsy--and I might even broaden the conversation slightly, to include the discipline of psychology as a whole. My general feeling is that, if the patient is competent and not psychotic, the wishes of the patient need to be respected unless the condition is causing substantial material or psychological harm to others. But things get stickier than my statement would suggest; the moral implications of these situations are far-reaching and go well beyond the medical profession. The reading offers a number of examples of how neuropsychology and psychology in general can be misused or used well. The case of Mary Jackson is a powerful instance of how simplistically and presumptuously we can view behavior--such as her drug use and promiscuity--as always resulting from conscious choice, from some sort of moral failing or a failure of self-control. In her case, the neuroscience forced a radical reassessment and set her behavior in its proper context. A scheme like this might complicate the judgments we make upon others generally; it might add another degree of certainty or uncertainty, depending on your position. This is a good use of psychology. The accusations leveled against Lewis Carroll are, however, disgusting. His name has been dragged through the mud, and there’s absolutely no evidence he did anything wrong; it’s all speculation. This is, unfortunately, a perfect example of the ways in which psychoanalytic theory can be abused, in clumsy or unscrupulous hands--bad use of psychology. The insertion of Carroll’s epilepsy into the dialogue serves as something of a corrective--good use of psychology. But the issues will seldom be so clear--in all these cases, we have the benefit of retrospect, as well as its limitations. Epilepsy can’t be seen as the source of Carroll’s literary genius, but rather is a force that shaped it. Minus the epilepsy, he may still have been a great author--though of very different books. The gray areas seem to me the most important to explore in our discussion.
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