EPILEPSY: A PATIENT’S PERSPECTIVE

By Bonnie Prescott
Beth Israel Deaconess Medical Center staff

"Coming out of medical training, I was taught to think certain ways about certain conditions," says Dr. Steven Schachter, director of research in the department of neurology at Beth Israel Deaconess Medical Center and a leading authority on epilepsy. "But as I established my medical practice, it dawned on me that there was more to my patients than what I had been taught to recognize. My patients were much more than the sum of their MRI scans, their blood tests, the pieces of paper with results and measurements and statistics."

Dr. Schachter's insights into individual patient experiences led to the creation of Brainstorms, Epilepsy in Our Words: Personal Accounts of Living with Seizures, a collection of firsthand patient experiences compiled in 1992. Now grown to include six volumes that chronicle epilepsy experiences from the perspectives of children, women, patients from other countries and cultures, as well as family members and caregivers, the Brainstorms series was recently updated and reissued by Oxford University Press.

I am aware of objects/persons and voices during a seizure but they are all distorted and my head, sometimes my whole body, spins to one side. I have eight to 10 of these episodes a day. It's no doubt that they are stress induced, but I must also truthfully say I have had three convulsions in my lifetime, all in my sleep. How do I know they're stress induced? During a two month vacation from my job my seizures went down. (From Epilepsy in Our Words: Personal Accounts of Living with Seizures)

Often called a "hidden disability," epilepsy is a disorder of the central nervous system, the communications network that controls thoughts, emotions, memory and movement. Nerves throughout the body function something like telephone lines, enabling the brain to communicate with other parts of the body via electrical signals. Normally the brain generates these tiny electrical impulses in an orderly pattern, but for patients with epilepsy, these cells misfire, generating a sudden, uncontrolled surge of electrical activity in the brain -- a seizure.

"In between seizures, most people with epilepsy appear and function normally," says Dr. Schachter. "But no matter how often someone has seizures, their day-to-day life is often dramatically affected by many epilepsy-related factors, including the fear of having a seizure without warning, the possible shame and embarrassment of having a seizure in public, the consequences for employment as well as for driving and insurance, and the stigma of epilepsy, which is still prevalent in our culture."

I have been with my sister on several occasions when she has had seizures. To my eyes, the onset was subtle, and I wasn't fully aware that the seizure had begun until I noticed that she was not engaged in the surrounding activity. She had an expression that was both pained and frightened and seemed to be caught in a freeze-frame. After the seizure, which lasted only 20 or 30 seconds, she was weak and upset, as if unnerved by the experience. Everyone else was upset for her as well and tried to calm her and reassure her. (From Epilepsy in Our View: Stories from Friends and Families of People Living with Epilepsy)

It was in listening to his epilepsy patients describe their wide-ranging experiences that Dr. Schachter realized it might be helpful for others to hear their stories to better understand what it is like to live with epilepsy. "A common sentiment of the disease is feeling alone," he explains. "I wanted patients, especially those who were newly diagnosed with epilepsy, to understand that they weren't alone."

So Dr. Schachter asked patients if they would write down their thoughts and experiences, which he then compiled in a notebook. Met with appreciation and enthusiasm, the "notebook" led to Brainstorms.

"A broken bone is a broken bone, it affects most people in roughly the same way no matter who they are," says Dr. Schachter. "But a chronic illness, especially one like epilepsy that has a stigma attached to it and is often unresponsive to therapies, affects people as differently as they are different from one another."

Brainstorms consists of Epilepsy In Our Own Words: Personal Accounts of Living with Seizures; Epilepsy in Our View: Stories from Friends and Families of People Living with Epilepsy; Epilepsy in Our Experience: Accounts of Health Care Professionals; Epilepsy on Our Terms: Stories by Children with Seizures and Their Parents; Epilepsy in Our World: Stories of Living with Seizures from Around the World; and Epilepsy in Our Lives: Women Living with Epilepsy.

The Brainstorms books are available at major bookstores, through Amazon.com, or by contacting Oxford University Press at 1-800-451-7556 or www.oup.com/us.