Becoming a Part of Her

A theme that has surfaced in our readings and discussions has been, in some cases, the concept of a mental illness becoming an all-consuming, self changing part of the affected human being. It has the potential to become an actual part of the person rather than something outside of them. It can make a person who they are. There is no longer a differentiation between the self and the disease. In Mark Salzman’s Lying Awake, Sister John lived years with migraine-like headaches that gave her “a wonderful experience, but it’s spiritual, not physical” (47).

I found that the decision to place this story in a cloister with a nun who is affected by epilepsy is a very deliberate decision. Epilepsy is a disorder which can make the patient feel that they are “becoming so drawn into the altered world created by the disorder that one loses interest in everything else” (68). The days spent in the cloister are used for the purpose of becoming closer to God. The goals are to be as selfless as possible and to put oneself “in [God’s] hands completely” (125). In the cloister, the nuns are meant to lose themselves in religion. There no longer is a material world. Epilepsy, just like religion, is impalpable. Sister John experiences her epilepsy so that her spiritual world and physical world become undifferentiated. According to Sister John, Epilepsy is a disease of the will of God. She gives God full power over this illness and loses her will to cure her epilepsy. She questions her surgery because surgery used to cure epilepsy would mean questioning God. The narrator states that for Sister John, “leaving the enclosure made her feel uneasy, like being caught in an open field with a storm approaching” (38). The cloister and her place in it has been what defines Sister John. Everything that she experiences within the cloister whether it be physical or emotional becomes entangled within her identity as a whole.

Something that was quite striking in Lying Awake, was Sister John’s reaction to her diagnosis. It seems as though she was very much aware of her life, pre-epilepsy. She knew there was difference between her pre and post epileptic life and must have believed that it was due to some sort of religious awakening rather than a physical cause. The epilepsy actually improved Sister John’s emotional life. She states that “if the surgery were to take my dream away, everything I’ve gone through up to now would seem meaningless. I wouldn’t even be able to draw inspiration from the memory of it…” (138). In this moment sister John begins to separate her illness from her religious life, admitting that the epilepsy has made her religious self, a more meaningful self. She comes to the conclusion that the medical world and the religious world might be separated and that her doctor may not understand her “take” on her condition.

To Sister John, epilepsy is something that was given to her by God, a condition that was designed for her. To the medical world, her way of life seems like “hyperreligiousity” and “the choice to live as a celibate: hyposexuality. Control of the will through control of the body, achieved through regular fasting: anorexia. Keeping a detailed spiritual journal: hypergraphia” (153). Many of the mental illness that we have studied in class so far have seemed like an exaggeration of a neurotypical mind. In this case,however, Sister John contradicts the idea that what she experiences is “hypertypical”. She sees her epilepsy and her way of life as being normal and different from the material world, but not an extension of the “norm”. To Sister John, epilepsy is who she is, her conception of “neurotypical”.

The time has come, the Walrus said, to talk of many things

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.

Exemption versus Accountability: to Rescind or Not to Rescind the self

I found one of the most salient topics addressed throughout Salzman’s Lying Awake to be the rescinding of the self—or, at least, the grappling with choosing to do so. Most evident in Sister John’s dilemma towards the end of the novel regarding whether her choosing to undergo surgery is an inherently selfish or inherently self-less act, the consideration that the self as a hindrance spiritual achievement is quite evident. As Sister John conceives of it, “[t]he foundation of religious life…is a commitment to look beyond oneself”(Salzman 142)—and to strip oneself “…of self-will and self-love…[is] a means of clearing away all obstructions to the love of [what is conceived of/believed to be] God” (139). Indeed, the very act of sacrificing one’s self to some higher entity (be it a god, another corporeal person, an idea/doctrine, etc.) implies that the existence of that self was/would otherwise be an obstacle to whatever devotion one is attempting to engage in. In other words, to rescind the self implies it is in some way, not entirely facilitating to whatever aim one has in mind. This is very similar to the yogic concept of the universal Self (purusha) versus the manifested self (prakriti): the upper case version is supposedly the non-physical “seer” or “true self;” whereas the lower-case version is the physical, tangible “self” that is tied to identity, body, and labels. The former is supposedly the basis of all consciousness, existence, etc., the latter is the individual manipulation of such life-stuff. Here, too, the latter (the lower case self) is seen as a hindrance to accessing/being in communion with the former (upper case Self). [In fact, the lower case self is said to be a delusion—inasmuch as the idea that one is individual and separate is a fallacy that humans maintain by seeking individuation and identity—a concept paralleled by Sister John’s acknowledgment, albeit during petit-mal temporal lobe seizure, that “self had been an illusion, a dream” (18).]

Granted, letting go of one’s self-concept—of one’s identity—grants anyone a certain degree of freedom, in that he/she is no longer tied down to a set script of how to function; however, is this rescinding-of-self truly the most ideal outcome? Of course, spiritually speaking, it is one of the ultimate goals—indeed, one of the necessities in order to “merge with” or “access” a higher state of consciousness (or, at least, to believe that such a process is occurring). Is this, as religious-devotees would have the world believe, the most advantageous pursuit or activity when day-to-day survival and optimal functionality is considered?

I think not. On many different levels.

For one, to rescind the self—to sacrifice all that pertains to one’s individual personhood—is to rescind one’s agency (or one’s sense of it, at least). Without agency (or a sense of it), there is no accountability. One—in the absence of a self—becomes not only powerless but exempt. Take, for instance, a newborn baby: it does not yet have a self; its very role in maturity is individuation: the formation of identity that separates it (gradually) from other objects (both other people and other things). A newborn baby is not chastised for soiling its diaper, vomiting in public, crying at the drop of a dime as it has not yet required the personal accountability inherent in a self. It is still exempt. Likewise, teenager is not expected to pay taxes, rent an apartment, or hold a steady job: he/she, though having formulated more of a “self” than a newborn baby, is still not fully individuated from his/her caregivers (at least, in typical instances) and thus remains exempt from that which fully individuated persons are expected to be accountable for. With self comes personal responsibility (including care for self and others); without self comes lack there of (take sickness, for example, wherein one is not “fully his/herself” and thus is exempt from activities which he/she would normally undertake until he/she is back to his/her normal self-state). Giving up everything you are to something outside yourself (i.e. Sister Joseph’s—along with the other nuns’—cataloguing every adversity as “God’s plan”) is rescinding your own free will and agency in the matter: it is rendering your effort inexistent. Personally, I see this as an easy way out.

This is not to say, however, that it is not noble to give yourself over to another entity. Indeed, self-sacrifice in its non-extreme form is rather enlightening and irrefutably helpful to the world at large: who can deny that the altruistic efforts of doctors without borders, or other such volunteer programs have reaped immense benefits for others’ survival (or that cliché “common good” we are all moralistically supposed to be striving for)? The problem does not lie in letting go of the self in order to acknowledge and assist others; it is extant in the inflexible and rigid fixation upon a total abolition of individuality—a complete and total refusal to be accountable to the world at large.

In fact, it is my (perhaps controversial) opinion that sequestering oneself in a cloister, away from the world at large is an inherently selfish act—a refusal to use one’s human capacities (i.e. communication), a forced ignorance of realities other than one’s own, and, ultimately, contradiction to survival itself (one person alone, devoid of other humans can only survive up to a point—indeed the human race cannot survive if there are not multiple persons, some of whom are propagating future generations).

Not only is it (ironically) selfish, but it is also (again, my biased opinion) pathological. Just as the exaggeration of any other natural human tendency to a non-adaptable and non-functional extreme renders such a tendency injurious, the exaggeration of the natural human tendency to be self-less mirrors the symptoms of psychosis: the false-attribution of agency to external sources (such as in paranoid schizophrenia), the notion that one has no self/is not inherently “real” and/or that the self is inextricably merged with and bound to external entities—and thus has no stability of its own (as in borderline personality disorder).

Of course, the counterpart to this, the exaggeration of the natural human tendency to foster a self (to be self-focused), also drifts into pathology. Examples of this extreme are narcissistic personality disorder, anorexia (the obsessive self-centered drive to remain thin at all costs—though, arguably also attributable to external influence in many cases), as well as, say, anal-retentiveness as postulated by Freud.

Yet again, then, the theme of balance arises, when the necessity of both selflessness and selfishness (or, in this case, rescinding of self and maintaining of self) is contrasted with the over-expression of one leading to the extreme disregard of the other.

Nevertheless, the caveat remains that a person’s identity inextricably lies within his/her degree of self-sacrifice or self-focus—just as that same identity may be colored by varying degrees of quirks along a normalcy-pathology spectrum. Balance may be optimal, but it may not be achievable—as Sacks addresses in his furtive seeking of the ideal titration of L-Dopa for his post-encephalitic patients. Indeed, if it was—and we all achieved it—the world would be quite a monotonous environment. Thus not only a balance of both opposites are necessary, but so too is a gradation of their display.

Essentially, what it boils down to is this: I don’t consider it admirable to forgo one’s life and live in a cloister, exempting oneself from all worldly obligations (at least not at this stage at my life). I do not, however, have any right to deem this choice wrong. I find solitude to be extremely self-centered—necessary, at times, but self-centered. [Note: I am extremely guilty of this self-centeredness…especially during conference time]. But hey, that’s just an opinion generated from the self I personally choose to cling to in an act of non-exemption—the self I have formulated and adhere to in my (sometimes unsuccessful) attempts to be “accountable.”