Another memory of that time: my father praying. I, waking early in the morning, and seeing my father with the glossy tallis on his shoulders, and a small silver star in his hands.
“So that you might get better,” he said. “So you stay safe.”
In the weeks before the operation, time speeded up. I wanted to say, “Wait. Wait just a minute. I’ve made my epilepsy seem worse than it is.” I said nothing, half from fear, half from confusion. I had always believed there could be two truths, truth A and truth B, but in my mind truth A sat on top of truth B, or vice versa. In this instance, however, I had epilepsy, truth A, and I had faked epilepsy, truth B, and A and B were placed in a parallel position, instead of one over the other, so I couldn’t decide. I had bad dreams at night, dreams in which I found myself skiing fast down a steep slope, and monkeys hung from all the trees.
One day I said to Dr. Neu, “Are you sure I really need this operation?” And he said, “Yes,” and that made me feel a little better. He had long talks with me in the hospital cafeteria, telling me I would be his patient for years to come, because even long after the operation he would have to keep studying my brain. I saw my future then. Maybe during the day I would have a career, but I would always come back here, where they would be waiting with thermometers and foot soaks, and if I ever did anything wrong, if I couldn’t get into college or forever flunked Mrs. Bezen’s math class, no one could blame me, for I was sick and being studied by a surgeon.
Lying on a hospital bed, or on my own bed at home, I had these thoughts. Maybe I would even move into Dr. Neu’s house so he could study me twenty-four-seven. We shared a world, that I knew, for the doctor and the patient are bound by necessities more urgent than the love between a husband and a wife, or two best friends; they are bound by the body, and so long as the body lives, so does their love.
And I was pleased with these thoughts, and I was also displeased with these thoughts, with the way I wanted to escape.
I once, years later, met a priest and I said, “What is sin?” and he said, “Sin is the refusal of responsibility,” and as soon as he said it I saw he was right, and I apprenticed myself to him.
Six days, five days, four days. A great fear came over me. I was going to have my brain cut. A great darkness came over me, for I knew I was a thief and a liar and it felt wrong on a very basic biological level. I read a story about a tribe of people who live in the mountains in Africa, and sometimes invisible beings called dabs came to steal their souls. A dab, perhaps, had come to steal my soul, because I thought I could recall how once I’d been a different kind of girl, a girl who went in the snow with nuns and said what was on her mind.
And then, the night before the actual operation, while I was lying in my hospital room, I saw the dab who’d stolen my soul. I opened my eyes in the late night, and there was a thing flying and flying around my bed, an angel the size of someone’s thumb; I said, “Come here,” and the dab said, “No.”
When I opened my eyes again, morning had come, and without even opening my window I could see the heat wave had broken; the air looked crisp, the flowers in the beds all bright.
I stood and looked out the hospital window at the cars on the road below, the world awake now, moving in one direction, me moving in another. Where, I wondered, had Lauren gone? Where, I wondered, had my mother gone? And then I felt what I had not allowed myself to feel, the longing for her love, and the longing for a younger, braver self, a self who had once said a definite yes to living in the world.
Down in the parking lot below me, a station wagon turned in and Dr. Neu stepped out from the passenger’s side. The sight of him outside the hospital shocked me. The sight of his wife—his life outside the hospital—shocked me. She stepped out to hug him, a curly-haired woman in a green dress. And then, of course, next came the kid, stepping out to hug him, and this put me over the edge. First, that he had so many people to hug him, his world so wide, I was just a tiny piece, I saw that then. And second, the kid herself. I was twelve stories up but I had, just then, bionic vision. I could see her wheat-colored hair, the bright sneakers on her feet—she was nine, maybe ten—and then I was inside her head, in the world before the body changes, before all the separations start, in a world where you are so surefooted and you believe you can be many things.
I cried then, like I should have cried a long time ago, a coiling cry coming out of me, a nurse rushing to my side, “What’s wrong, what’s wrong?” I was shaking but it wasn’t a seizure, it wasn’t a sickness; it was me this time, it was real this time, my sadness and longing coming out and my hands, for once, staying still, not stealing a thing. I did not flee from the feeling but let it puddle up in my throat and go straight out of me, my sound, the sound, guttural and wet, salty to the taste, a sound like Lauren, here I am, Lauren living.
It was Lauren, then, who lay on the table in the OR, Lauren who felt the needle of lidocaine slide into her scalp, Lauren who heard the whining of the saw and felt the pressure from his hands and the cutting devices, Lauren who fancied she heard the snapping sound of disconnecting tissue, and the cool air that came to fill the cleft where her connections had once been, and the whole time it happened it was Lauren who hung on to the sound of her cry, a sound without pretense or mask, true-tongued and absolutely absolute—remember this, remember this, no, not you, Juliette, not you, Bobby, not Maria or Kayla or April or June but Lauren—
Love, Lauren
CHAPTER 5
THE BIOPSYCHOSOCIAL CONSEQUENCES OF A CORPUS CALLOSTOMY IN THE PEDIATRIC PATIENT
DR. CARLOS NEU, M.D., AND
PATRICIA ROBINSON, P.T.
ABSTRACT
Sixty percent of patients with temporal lobe epilepsy display dysfunctional psychological profiles that include emotional lability; mythomania, with all its attendant exaggerations and untruths; tendency toward melodrama, hypergraphia and hyperreligiosity. This paper addresses the degree to which a successful surgical intervention that reduces or eliminates tonoclonic seizures can concomitantly reduce or eliminate the epileptic’s dysfunctional personality style. This paper also addresses the importance of postsurgery rehabilitation that takes into account the complexity of epilepsy as a biopsychosocial phenomenon.
INTRODUCTION
While we once conceptualized epilepsy as a solely physical illness with few, if any, personality correlates, we now, thanks to the insights of Geschwind (1963) and Bear (1981), view temporal lobe epilepsy in a more complex fashion—as both a seizure and a personality disorder. A significant number of patients, although by no means all, display a series of dysfunctional character traits that include a tendency toward exaggeration and even outright disingenuousness (mythomania), hypergraphia, hyperreligiosity, and emotional lability. Called Geschwind’s disease, interictial personality disorder or the Temporal Lobe Epileptic personality profile, the phenomenon raises crucial questions as to the relationship between anatomical and psychological phenomena. Anatomically, patients with a TLE personality profile display cortical scarring in the temporal amygdalan areas of the brain. Psychologically speaking, such patients are oftentimes deeply concerned with religious/spiritual issues, display artistic proclivities that include excessive writing and, in some cases, are so prone to fabrications that they themselves are no longer able to determine where fact and fiction meet. In addition, such patients may display histrionic personality traits that include the persistent need for attention. Antisocial behavior—stealing, lying, fire setting and the spectrum of more severe crimes—is also high among the epileptic population. For these reasons, TLE patients have a statistically significant increased rate of psychiatric difficulties, with diagnoses clustering on Axis II. Correlation studies such as Sperry’s (1981) and DiAngelo’s (1979) have been instrumental in pointing out the compelling and critical link between labile and disingenuous personality styles, and seizural foci in the temporal lobe area.
Case study LJS, a pediatric TLE patient, can contribute to the ongoing body of knowledge and evolving ques
tion sets in the study of epilepsy. LJS developed eliopathic epilepsy in her tenth year; seizures appeared to commence in the temporal lobe but quickly spread to other cortical regions as well. Her dramatic drop seizures, her young age and, as revealed on neuropsychological testing, the apparent plasticity of her cognitive style, made her a good candidate for a corpus callostomy, which was performed on February 15, 1979. While it has been amply documented that a corpus callostomy is an effective procedure for dramatic drop seizures, reducing or entirely eliminating them, it has not yet been systematically explored as to whether or not a reduction or eradication of seizure activity would correspond to a change in personality style, namely a change in the direction of psychological health. In short, if a corpus callostomy reduces seizures, will it also reduce the emotional lability, the mythomania, and other attendant psychiatric dysfunctions? This paper attempts to begin to address the above-mentioned questions, in addition to explicating the postsurgery recovery course, and its psychosocial consequences, in a pediatric patient.
PART ONE
The Surgery and Its Effects
on Personality
Prior to surgery, patient LJS had a severe seizure disorder and displayed significant psychiatric dysfunction consistent with the TLE personality profile. The patient, an affable thirteen-year-old, engaged in compulsive kleptomania, stealing small, apparently insignificant objects from the treatment facility. During her inpatient preoperative workups, nurses observed the patient taking hospital paraphernalia; when confronted, the patient vociferously denied. In addition, the nursing and the surgical team suspected that this patient, while suffering from a severe illness in its own right, was also able to engage in psychosomatic seizure activity, and thereby gain the attention she seemed to crave. Patient LJS, according to several CORE evaluations, had an entrenched tendency toward mythomania in environments that ranged from hospital to school to home. She frequently spoke of a correspondence with a professor of philosophy—a Hayward Krieger—with whom she discussed Ouspenskian ideas. However, we have been unable to locate or confirm the existence of any Hayward Krieger, which is not surprising, and only further underscores the diagnosis.
Patient LJS underwent a posterior cingulate corpus callostomy on February 15, 1979. She was subsequently followed at the Beth Israel Neurology Clinic for four years. Her physical recovery from the seizures was good. Her seizures themselves were reduced by over 90 percent, thus qualifying the surgery as a success. Her side effects were minimal, as she had undergone extensive preoperative tests to determine cerebral dominance. However, we did not note a significant change in personality style, which was dysfunctional prior to and post surgical procedure. Patient’s MMPI scores prior to surgery were well above the mean on the test’s psychopathology scales, the test’s lie scales and the test’s paranoia scales. Patient LJS was retested with the MMPI two years post surgery, when she had been nearly seizure-free for some time. MMPI scores remained the same. In addition, three years post surgery, this patient developed an intense fixation with writing, and, later, a subsequent fixation with religious/spiritual pursuits, all of which suggest that the TLE personality profile remained entrenched, and even continued to burgeon. Therefore, the personality traits associated with TLE may not be direct products of random electrical discharge—i.e., seizure activity—but, rather, consequences of an as yet undetermined source, possibly minute or even microscopic cortical scarring. Thus, patients with TLE may experience improvement via surgery in terms of their actual seizures, but it may be that the emotional exigencies of TLE remain largely unaltered. TLE, therefore, even when largely controlled or eliminated, remains at the very least a psychosocial phenomenon, continuing to affect the patient’s life course and intrapsychic functioning throughout the life span.
PART TWO
Rehabilitation
Patient LJS’s seizure disorder was serious enough to prevent her from participating in many age-appropriate activities, thus leading to social isolation and poor peer relationships. TAT scores suggested a primitive psyche with a marked fear of social situations. At the age of thirteen, her seizures were brought under surgical control, and the question for her physical and rehabilitation therapists was how to help reintegrate this pediatric patient into an age-appropriate social sphere, especially in light of the fact—and the challenge—that while the physical seizures were gone, the personality patterns remained fixed.
Post surgery, the Beth Israel Rehabilitation Team worked closely with this young patient, teaching her a series of age-appropriate skills so as to aid reintegration. Of special note is that the patient’s family structure was such that she could glean little support from it. Her mother appeared to suffer from a narcissistic disorder, while her father, as is typical of this type of family constellation, remained in the largely passive role. Rehabilitation staff found the following activities helpful:
1. Role plays involving common adolescent social situations.
2. Structured reintegration activities. I.e., the patient was given a homework assignment—to attend a dance, to attend a sporting event—and then asked to rate her feelings about it on a Likert Scale and report back to her rehabilitation therapists, who then, with the patient, reviewed her reports so as to determine in which spheres and doing what activities she felt most to least comfortable.
3. Vocational counseling/early career exploration.
4. Cognitive restructuring techniques: Patient taught to restructure negative self-talk with positive or reality-based statements as exemplified in the work of A. Beck (1984).
5. Physical therapy involving sports activities. LJS responded particularly well to swimming and tennis.
6. Twice-weekly psychotherapy.
Most difficult for LJS post surgery was learning how to structure her time constructively. LJS had spent much of her childhood and early adolescence either having seizures or recovering from them. For the first year post surgery and 90 percent seizure-free, the patient appeared disoriented and complained of chronic boredom. Rehabilitation staff focused on helping this patient find or develop interests, hobbies and skills that had not been able to burgeon in what had previously been a crisis-ridden childhood.
After two years of intensive rehabilitation, patient LJS appeared better able to structure her time around subjectively experienced interests with a strong social component, interests from which she had previously been barred by epilepsy. For instance, this patient joined the school’s drama club, and, later, the tennis team. While she had difficulties participating in cooperative sports, her personality style was well-suited to the drama club, where she met with significant successes that reinforced her fragile self-esteem. Important to note, however, is that, despite her modest social successes, she still displayed impulsive behavior, poor social judgment (as revealed on several psychological tests, projective and cognitive) and a limited ability to sustain age-appropriate friendships. She did not engage in age-appropriate sexual exploration, indicating either an unstable sexual identity or marked sexual anxiety due to as yet undetermined factors, factors possibly rooted in her experience with chronic illness. She was charming, even flirtatious, with the males and females on her rehabilitation team, but showed little interest in peers.
During the rehabilitation period, patient LJS displayed some disturbing depressive tendencies, which may have been an indication of an adjustment disorder with disturbance of mood, or of a more serious mood and/or anxiety disorder as a diagnosis separate from the TLE personality patterns.
Conclusion
1. While a corpus callostomy can dramatically reduce seizures in children, it does not appear, in this case, to have any mitigating effect on the attendant personality proclivities sometimes seen in TLE patients, namely proclivities associated with emotional lability, disingenuousness, hyperreligiosity and hypergraphia. Further research is needed to determine whether or not the unaltered personality style of TLE patients post surgery is is indeed a statistically significant phenomenon.
2. Crucia
l to the success of a medical/surgical intervention is a comprehensive rehabilitation program that addresses not only the biological but also the psychological and social aspects of epilepsy.
PART THREE
THE
CONVULSIVE
STAGE
CHAPTER 6
THE CHERRY TREE
Like squalls, then, brief bursts of rain in otherwise clear weather, my seizures were that way after the surgery. I had far, far fewer fits. I could go for weeks, for months, and then have a small storm in my brain, rain falling fast, I falling fast, and then over in a second or so, afterward the air clear, all the seagulls singing.
And yet, I still had my auras. The surgery had lessened the seizures but intensified the auras, and I wondered whether or not Dr. Neu had made a mistake in my brain when he’d split it. “Well, I’ve never heard,” Dr. Neu said, “of a person who has more auras after a corpus callostomy, and I’ve also never heard of having auras without a seizure following,” but both these things were the case with me. “Write me up,” I said, and he did. In the months, the years following my surgery I had auras all the time, strange states coming over me morning, noon and night, clasping me quickly like the huge hand of God reaching down from the sky. The auras were feelings and tastes, delights and despairs, and they wrapped me totally for the time they lasted. They were not a problem. People called me “dreamy,” and “space cadet,” and my father chuckled when he saw me staring out the window and said, “This girl of ours is a guru.”
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