Karen was 17 when she first came to the clinic. Because of a prolonged febrile seizure she had experienced in childhood, complex partial seizures developed that began with an epigastric sensation and then progressed to oral automatisms and a prolonged postictal state. Her seizures went back as far as she could remember. She had never gone a significant length of time without them, and they had interrupted her schooling and had been an enormous frustration to her. Although Karen looked some years younger than her age, she was nevertheless determined to become more independent, to move away from home, and to be like younger people. Over the next 3 or 4 years we struggled together to find a combination of drugs that might enable her to fulfill her aspirations. She took part in an early clinical trial with one of the new generation of antiepileptic drugs. Her seizures continued to be frequent, and it was unusual for more than a day or two in a row to elapse without her experiencing seizures.

In the mid 1980s our center began to develop a program of surgical treatment for epilepsy. Previously, surgery for epilepsy had been restricted to only two or three centers in the United Kingdom and patients were subjected to extremely long waiting times. When we began our surgical program, Karen expressed an immediate interest despite the concerns and worries of her protective parents.

After the usual presurgical evaluation, Karen was offered and subsequently underwent a right temporal lobectomy. She awoke from her anesthesia with a dense left hemiplegia. She was the sixth patient to undergo temporal lobectomy and the first to experience a serious complication.

The day that Karen retuned to the outpatient clinic for the first time after a period of rehabilitation is engraved in my memory. This meeting has probably influenced my approach to people with epilepsy and their management more than any other. Karen walked into the clinic still showing evidence of a moderately severe hemiplegic gait and with a functionally useless left hand. I was a little surprised she had come to the clinic, by herself, as previously she had always attended with her parents.

I began to tell her how sorry I was about the complications of her operation and mumbled some apologies for suggesting it. This was as far as I got. Karen stopped me in the kindest way and pointed out to her uncomprehending doctor that she had been entirely seizure-free since her operation. For the first time she was not able to get on buses by herself and to go out by herself. In effect, she had attained much of the independence to which she had aspired. She expressed the view that moderately severe hemiparesis was much less disabling than frequent complex partial seizures. She explained this in sympathetic terms, as if instructing a small and somewhat naïve child.

The realization dawned on me although I had been treating epilepsy and advising people with the disorder for 10 to 15 years, I had failed to truly understand the nature of the problems facing them in their everyday lives. In Karen’s case I had been too quick to impose my own judgments about disability on the results of her surgery. I had spent my clinical life trying to avoid the paternalism that I felt doctors sometimes showed towards many of their patients, only to be as guilty of it as any of my colleagues.

I hope that Karen has taught me to listen more carefully to people with epilepsy and to understand their disability a little better. I certainly feel considerably less qualified to make management decisions on behalf of people with epilepsy, and I endeavor to spend more time presenting information so that they can make their own decisions. I have never had seizures or epilepsy, and I hope I never will. I realize that I will never have a full understanding of its impact.

Karen is now in her early thirties and her doctor is in his early fifties. Unfortunately, after being seizure-free for 3 years, Karen has experienced a return of her seizures, but they are less severe and much less frequent. She remains hemiparetic, but enjoys life and has a stable relationship with someone who also has epilepsy. Strangely, we both benefited in different ways, in spite of, in Karen’s case, and because of, in my case, a medical accident.

The Brainstorms Healer: Epilepsy In Our Experience edited by Steven C. Schachter, M.D. and A. James Rowan, M.D., Raven Press, 1998, Lippincott Williams & Wilkins