Personal Experience With Epilepsy

The Author.

“Steven Schachter is Professor of Neurology at Harvard Medical School; Chief Academic Officer and Director of NeuroTechnology for the Center for Integration of Medicine and Innovative Technology, Boston; and Senior Neurologist, Beth Israel Deaconess Medical Center, Boston.

Dr. Schachter is Co-Chair of the ILAE Therapeutics Strategies Commission and serves on the ILAE Global Campaign Task Force. He is Past President of the American Epilepsy Society, past Chair of the Professional Advisory Board of the Epilepsy Foundation and a member of the Epilepsy Foundation Board of Directors.

He has directed over 70 research projects involving antiepileptic therapies, and published over 200 articles and chapters. He compiled the 6-volume Brainstorms series, which has been distributed to over 150,000 patients and families worldwide, and edited or written 23 other books on epilepsy and behavior. Dr. Schachter is the founding editor and editor-in- chief of Epilepsy & Behavior. ”

What a Godsend for all people who have, or are involved with epilepsy and seizures, that Schachter, sometimes with co-authors, with this amazing professional reputation and career, has had the insight and afforded the time to publish this Brainstorms Series of 6 books on epilepsy and seizures.

Each book in the Brainstorms Series each begins with the guidance of a brief introduction to epilepsy, written in simple, easily understood layman’s terms, but it is the heartrending personal stories in each book which have such enormous universal appeal – different people’s personal experiences and descriptions of seizures and epilepsy, across the globe – infants, young children, teenagers, parents, women, family, carers, teachers, work colleagues, professionals and so on.

The scope of these stories is enormous, covering innumerable classifications of seizures and epilepsy, written from the heart, bridging all ages, religions and cultures, while revealing the apprehension, heartache, grief and life changes, loss of lifetime dreams and expectations, that people with epilepsy must face and address… grapple with, and admirably, it seems, with so much determination, courage, as well as support and unconditional love from those around them.

As the saying goes, ” A problem shared is a problem halved “, and by absorbing these stories written in the first person, the reader feels much support and comfort, simply from the confirmation and realization that they are NOT alone in the world, and that others share and confront their same difficulty. Readers can identify their symptoms and circumstances with others, absorb support, helping put their own lives into context, often giving some peace of mind, and these factors alone often help resolve stress (a trigger in itself).

Following are brief summaries of each book and it’s relevance to a specific group of people who have epilepsy and seizures or are closely involved with the care of such.

• The Brainstorms Family: Epilepsy on Our Terms. These stories are so engaging. Heartfelt and inspiring, they are written by children, their parents and other family members, describing reactions and emotions from the time of initial diagnosis and how it affects the whole family – coping with the seizures, sharing the information with close family, teachers, school friends etc, adjusting to medications and other new routines resulting from the diagnosis.

Two inclusions in this series are:

. the glossary of terms – invaluable for those on the steep learning curve after diagnosis, and
. a straight forward, easily understood comprehensive guide for those in the lives of the children

• Brainstorms: Epilepsy in Our Words: Personal Accounts of Living With Seizures.

In 68 stories from across the globe, people describe a wide range of different seizures, their individual experiences of seizures and epilepsy – their fear and confusion at the first diagnosis, the before and after of seizures, how epilepsy affects their lives, their work, their families and their confidence as well as the constant apprehension of not being able to predict their seizures.

• The Brainstorms Woman: Epilepsy in Our Lives.

Women of all ages and nationalities share their personal real-life accounts of how epilepsy affects their lives, their menstrual cycle, their roles as wife, mother or work colleague, their sexuality and life in general. Interestingly, they repeatedly speak of the “peace of mind” experiences having shared these stories which have helped put their own personal situations into context.

• The Brainstorms Healer: Epilepsy in Our Experience.

These are stories written by Health Care Professionals around the world – doctors, nurses, technicians, social workers, etc as Care Providers of people of all ages who have seizures and epilepsy. Their recollections describe the challenges and rewards experienced in their various roles.

• The Brainstorms Companion: Epilepsy in Our View.

This small book is compiled of stories from friends and families of people w ho have seizures. Dr Schachter highlights the importance of the observations of witnesses to seizures from both a medical and personal point of view. Medically, accurate and detailed observations greatly support accurate diagnosis, and treatment. Schachter encourages friends and family to record their emotions, observations, feelings and worries so that patients themselves have a clearer understanding of the condition, and more readily come to accept their circumstances.

• The Brainstorms Village: Epilepsy in Our World.

The causes of epilepsy over past centuries was often subject to the traditions and beliefs of a particular culture and was for example cited as being a type of witchcraft, a punishment for sin, a disease of the brain, and contagious. Current data from anthropological and biomedical studies can indicate just how much the understanding of epilepsy has progressed… symptoms, diagnosis, classifications, treatments. In the letters and personal stories received from 21 countries around the world, common responses the condition of epilepsy abound. They cross the boundaries of ethnicity, religion, sex or age. They refer to the same loss of expectations in life, social, educational and occupational limitations, emotional impact on friends and family, the fear of unpredictable seizures, the lack of community understanding, yet above all and through adversity, there is the persistent characteristic of inner strength, hope and determination to maximize their own goals.