Many of us know the experience of being in the middle of an activity that requires focus and attention to detail, but because the activity is one we perform on a routine basis and feels like second nature, we allow our minds to wander. We do not get alarmed if we realize we’ve missed our usual exit on our drive home on the interstate. Mildly ashamed at having lost our ‘autopilot’ sensors, we backtrack, re-enter the next on-ramp, and are home a few minutes behind schedule. Not a problem.
Seizure in the lecture hall
But what if one is lecturing to a packed university classroom, going through the same lecture she’s presented semester after semester, only to notice from the podium that students look at you with alarmed expressions on their faces, that some signal to each other in hushed tones, while others sit frozen?
It happened to me exactly like that in early 1991. I was lecturing undergraduates at a major university, feeling totally secure since I’d been through the routine so many times before. This time, something was different. Why the puzzled looks, the whispers, the furtive glances between students? Maybe I’ve talked over their heads this time. Not to worry, I assured myself. I’ve always enjoyed good relations with my students.
Alas, I’d experienced a complex-partial seizure in the middle of a lecture. When I examined the end-of-semester student evaluations, I learned the details of what had occurred. Students reported that I’d been lecturing as usual. Then, I began to stare and mumble incoherencies. The class initially thought I was acting out the scene under discussion. I stood motion- less, spoke inaudibly, and fiddled with my pen. A few students reported alarm at my sudden change of demeanor. Then, just as abruptly, within a few minutes I re-established composure and continued exactly where I left off before the seizure began. These evaluations sealed my fate.
How would I have known that anything untoward had happened? I was utterly amnestic of the event. Although I later sensed that something was amiss, I dismissed those qualms. Since none of the students said anything about the episode after class, I finished the semester believing that my contract would be renewed for the following fall.
Loss of employment and denial
My confidence fell apart when I was summoned to the Dean’s office at semester’s end and was told that my sections for the fall semester had been closed. The explanations were vague and misleading. I was now out of a job. I chalked the issue up to departmental downsizing, that I was another lecturer let go to ease the university’s financial squeeze.
Not so strangely, I never inquired about why I was dismissed from a promising career. Although persons with epilepsy are unconscious during their seizures, they develop a tendency to cocoon themselves and shun any discussion about their seizures. Denial explains why so many families and sufferers avoid facing details that may be crucial in understanding their condition and to prompt them to seek treatments beyond pharmaceuticals.
Delaying an investigation of one’s epilepsy highlights the need to raise awareness about how damaging epilepsy can be. We now talk about sports-related concussions and the dangers they present; yet we maintain a veil of silence about the life-threatening perils of inadequately treated epilepsy. Public awareness that epilepsy surgery offers positive outcomes is vital in bringing about higher cures. With surgery, those suffering from intractable epilepsy immediately experience an improved sense of psychological wellbeing and are much better equipped to cope with the disease. Successful epilepsy surgery extends one’s life expectancy.
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Early seizures and accidents
When I was 18 years old, I had viral meningitis that included several grand mal seizures. After a week in hospital in 1966, the virus dissipated on its own. Doctors at the time concluded that there would be no long-term effects. In 1981, the seizures started again. They were mild and infrequent. Despite this, I completed my doctorate five years later in English literature at age 38 and embarked on a Post-doctoral Fellowship. I began the usual lecture circuit and round of publications. During this period, not only did I have the seizure at the podium, but I also totaled my car by having a seizure while driving. On another occasion I experienced a seizure while frying fish; I immersed my hand in the searing oil and sustained third degree burns. Other accidents followed, such as one at age 50 when I walked into taxi lanes at a busy airport. I have no memory of any of these events other than the physical wounds that were quickly made apparent and required immediate medical treatment.
Damaged wire metaphor
How do seizures disrupt the brain’s functions and cause damage? Picture an area of the brain as a bundle of intertwined telephone wires. Observe that a disruption has damaged the insulation on some of the wires. Over time they will touch each other, spark, and cause progressively more damage. The sound over the telephone becomes static. With the passage of time the static becomes more frequent, and the sound loses some of its clarity. An examination of the bundled cables reveals scorched wires and burned insulation. With careful mapping from the ends of the cables, the damaged wires can be identified, and with further investigation the remaining good cables can be located. If the defective wires are cut out, the remaining cables can continue to carry the signal. The static stops and the telephone can operate properly again. Just so with epilepsy surgery.
Amygdalohippocampectomy
In 2001, I had brain surgery at age 53 after having first undergone extensive brain mapping and a hospital investigation with closed-circuit television to pinpoint the locus of the seizures. The paroxysms were found to originate in the amygdalohippocampal complex. A scar was located on my right amygdala, and it, together with the damaged areas in the adjacent hippocampus, was removed. I have been completely seizure free since then. I resumed teaching in 2009.
Erasing prejudice
Discrimination towards those suffering from epilepsy is not new. To what extent is social exclusion related to our uneasiness about the unknown? Our culture also tends to devalue the experiences of the disabled. Although it is unlikely that someone would choose to have a condition that interrupts consciousness without warning, the testimonies of persons with improved epilepsy can be persuasive in raising public awareness of the condition. Surgical intervention has restored my ability to work. It ended the tortuous shame of having seizures in public. I hope that my story will prompt others whose seizures are uncontrolled to consider surgery as an option with a positive outcome.
