A Remarkable Position to Be In

Imagine being overwhelmed, utterly without warning, by a strange smell, a sensation of electric shock in an arm or leg, flashes of brilliant light, a dreadful fear, or a powerful sense of déjà vu. Imagine such episodes occurring repeatedly and unpredictably, causing either a temporary sensory change or unintended movements or facial expressions, or robbing the power of speech production or comprehension. Such is the world of an epilepsy patient. It is not hard to see why the ancients thought that an individual in the midst of an epileptic seizure was possessed by a supernatural spirit, for what natural force could possibly have such power?

The world of cutting-edge epilepsy research is a highly technical realm of ion currents, molecular channels, and complex connection diagrams. Yet ironically, the technology that has enabled us as physicians to truly begin to understand how this disease affects each individual patient is an incredibly simple one: the video-EEG unit. The patient is admitted to a specialized floor of the hospital, where we observe and record his interactions with the external world by video camera, and ask him to share with us any unusual changes in his internal milieu. At the same time, we continuously record the electrical signals from the surface of the scalp, the EEG. The goal is to correlate the patient's external behavior and internal experiences with the EEG tracings. When we are able to identify particular EEG signals that correspond to the patient's auras or seizures, as we are in the overwhelming majority of cases, we have succeeded in localizing the particular region of the brain that is the epilepsy generator. This allows the neurologist to much more successfully and rationally plan a therapeutic approach.

What fascinates me about the video-EEG unit is that it provides us, for the first time, with an objective, scientifically measurable entity that correlates with the patient’s internal experiences. Other disease states cause pain or nausea or vertigo or malaise, sensations with which we are all well acquainted. In contrast, epilepsy can wreak havoc with the entire sensory, motor, and psychological apparatus. Regardless of what one holds to be the essential core of individuality, however one defines "self," epilepsy reaches out and transmutes that essence entirely, only to restore it again to its owner until the next episode. The physician will never truly enter the experiential world of the epilepsy patient, cannot imagine what a seizure feels like. It is impossible to overcome the fundamental fact that the internal world of another human being is inherently unknowable. The presence of an EEG tracing provides us with a physiological marker, something concrete and understandable, a window into that which was previously unknowable.

Glimpses of the difficulties faced by neurologists of old are still afforded to us today by those cases — usually involving seizures in the part of the brain just behind the eyes, the prefrontal cortex — wherein the EEG does not show any sign of seizure activity. And yet, such electrically cryptic seizures can be powerfully dramatic — the patient may assume the pose of a fencer at the start, then, with a profoundly altered consciousness unable to connect with the outside world, the patient may scream in horror, or make furious bicycling movements or pelvic thrusts. Faced with such overwhelming personal transformations in our patients in the absence of EEG tracings on which to hang our hats, we neurologists are brought back uncomfortably to the pre-EEG days during which epilepsy was an impenetrable enigma.

In the past I was a student of neurophysiology and philosophy intellectually interested in epilepsy; I have now become a physician caring for epileptic patients. What that transformation has brought to the fore is the human element of struggle that is intrinsic to every aspect of this disease. A consciousness-altering disease is shocking to even consider. But how much more gripping is it to come to know the individual patient whose life is subject to these uninvited and unpredictable episodes? How moving it is to hear a patient describe how every last aspect of his or her life, from personal social interactions to the pursuit of school and career to the ability to drive or ski or climb a mountain, is affected by the possibility of a seizure? To such a patient, seizures are not an abstraction but an old foe, hated yet all too familiar.

A physician caring for such patients does not offer them freedom from pain or even a lengthening of life expectancy as the primary goal. Rather, if our treatment is successful, if the patient can be rendered seizure-free, what we offer is a restoration of personal autonomy. And to me, this is a most remarkable position to be in. In what other sphere of life can one offer to another human being his or her own self as a gift? In this sense, caring for epilepsy patients, more than any other type of doctoring, epitomizes the human bond that is at the core of being a physician. The patient tries to communicate how epilepsy alters his internal world and his relationship to the external one, and the physician, in understanding the patient as much as humanly possible, tries restoring to the patient the ability to lead his life with his own identity intact.