Lying (10 page)

Well, that should prove my point. You can fake epilepsy. I admit I sometimes faked my epilepsy, but I also really had it. Still, once I realized I could set off seizures at will, I did it at all the right times and in all the right places. The Peter Bent Brigham. The Lying-In.

Tiring. And how dislike yourself. From my bout with Munchausen’s, I now know for a fact we are moral creatures, and that to be anything but is to violate our most basic physiologies. The lying hurt, physically. My head felt on fire, and yet my skin seemed snowy and far away. I started taking baths, long hot soaks, my skin turning tender and red;
here I am
.

I fixed my face up carefully when I went to see Dr. Neu. Back then there was a line of products called Love’s Baby Soft. I used all Love’s Baby Soft products, rouge in two small circles on my cheeks.

Is it possible that Lauren loved him if there was no Lauren? Was it Juliette who loved him, or Bobby with her floral smells? Who cried in her heart when he touched her head? Dr. Neu was Dutch, and his words had a feathery feel to them. I loved him for no other reason, perhaps, than his voice, how he made every word warm.

My mother, father, and I went in for a meeting with him
one Tuesday at 3:00
P.M
. Summer had arrived, and the air was so hot it hung between the trees like breath.

I remember the heat, and I remember the cool clasp of air as soon as we entered the lobby, the switch so sudden it was almost painful.

“Come in,” Dr. Neu said. He took us not into his examining room but into his office, where serene music played.

“Sit,” he said.

“She needs an operation,” he said. “I have thought about it carefully. I have explored the physiology of her seizures and, despite their eliopathic nature, I think a sectioning of the corpus callosum is warranted.”

“Oh,” we all said.

He went on to explain. He would cut the corpus callosum in my brain, thereby disconnecting the left and right hemispheres, a very common procedure in epileptic children with some, but few, significant side effects. With the brain split, the seizures starting in one side would not spread to the other, and so I should experience a real reduction in illness.

But wait a minute
, I wanted to say.
I’m not as ill as I seem
.

“You mean to tell me,” my mother said, “that you want to perform a lobotomy on my daughter?”

“It’s not a lobotomy,” he said. “Surgery is sometimes the method of choice when the pediatric patient does not respond to medication. The procedure will have no effect on her IQ or on her social skills. The side effects are very subtle.”

They all had a long conversation then about subtlety and side effects, but I had stopped listening. I noticed my mother
looked worn down, and sometime, over the years, grooves of disappointment had deepened by her mouth. She had had such high hopes, she must have entered life with such a lunge, and now, at this midpoint, what? A daughter with a brain disease, a husband in the bakery business, and all the while she with the scent of perfume that trailed her like a scarf. Once she had fought my illness with fists and money, but I had been younger then, and so had she. Once she had watched me seize with something like love in her eyes. But I had been younger then, and so had she. I think, that day in the doctor’s office, she just decided to take a rest. I applaud you, Mom, at least the left side of me does, while the right wonders why, why did you let them do it? Why did you let me go? I saw her lie down on the ground. In my mind I imagined her stretching out on Dr. Neu’s cream-colored carpet while in real life she nodded, tilted her head, talked to the doctor and my father, and sometime then or a few days later, she said yes to the surgeon; yes to the slice.

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—

D
R
. C
ARLOS
N
EU
, M.D.,
AND
P
ATRICIA
R
OBINSON
, P.T.

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.

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 question 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

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.