The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Recommended reading?

Sun, 11/25/2018 - 14:59
Hi all, I have generalized seizure disorder and have dealt with absence, nocturnal, tonic, and tonic-clonic seizures since childhood. I've always struggled to reconcile my epilepsy with my identity, but I'm working hard to fix that. I'm an avid reader, and I'm looking for some books that focus on the subject. I've heard good things about The Spirit Catches You and You Fall Down but haven't had the chance to read it yet. Does anyone have other recommendations? Thanks in advance! Claire

Comments

I too am an avid reader.  I

Submitted by birdman on Mon, 2018-11-26 - 10:41
I too am an avid reader.  I have read many of the basic epilepsy books and found it encouraging to know that I am not alone.  Then I found great fascination in Oliver Sacks's books (The Man who Mistook His Wife for a Hat is the best) as he describes neurological disorders and the "wellness" patients experience as a result.  Sacks's way of responding to neurological disorder is a great relief form the aggressive efforts we experience from our doctors.Of course those of us who go through chronic treatment must learn to relate well with the creatures who diagnose and administer treatment.  That left me into reading many books that help us understand why doctors think the way they do.  "The Silent World of Doctor and Patient" by Karl Schneider is about the need for informed consent.  But Schneider goes on to describe why doctors may be hesitant to say everything they know.  In the world of epilepsy there are many "uncertainties" and topics which doctors don't like to discuss.  The newest one that I just finished is from Suzanne O'Sullivan, MD called BRAINSTORM.  In this book she presents stories of individual patients who are found to have epilepsy.  But their symptoms don't always present themselves as obviously epileptic.  O'Sullivan writes about the many ways that epilepsy can present itself and the hardships patients and families often go through just to get properly diagnosed and treated.  I'm not sure what you mean by the idea that you struggle to reconcile your epilepsy with your identity.  Epilepsy and its treatment often does influence the way we think and who we are.  In her book O'Sullivan writes much about how and why individuals are affected by their particular conditions.  I wish I could claim that I am more in control of my thoughts and behaviors than I am.  Maybe Brainstorm is not the book to help us make that separation.  But reading this book has helped me appreciate the professionals who treat epilepsy as it tells of the complexities they must sort through to help us out.Let me know of your specific reading interests; maybe I can offer more recommendations,Mike 

Thanks, Mike. That's so

Submitted by claireqd on Mon, 2018-11-26 - 12:26
Thanks, Mike. That's so helpful, and I'll put BRAINSTORM as next on my list, as well as look into the others you mentioned.Reconciliation probably wasn't the best term to use; acceptance is more accurate. I've historically downplayed the extent of my condition to myself and others. As it has escalated in recent years, I've had to truly embrace its impact on my life and how it will affect almost every decision that I make moving forward. It's easier said than done, but I'm sure that everyone who is in this particular boat has felt the same way at one point or another.In regard to specific reading interests, I've always read a little bit of everything. Lately, I've been focusing philosophy-centric books and nonfiction. (That being said, I love a good historical fiction.) Cheers,Claire

Claire,Based on your reading

Submitted by birdman on Mon, 2018-11-26 - 20:16
Claire,Based on your reading interest I think you will like the book I mentioned earlier, The Silent World of Doctor and Patient.  Correction--I wrote earlier that the author of Silent World was Schneider.  Jay Katz is the author of that book. Karl Schneider is author of another great book I read called, The Practice of Autonomy.  This book is about how much control over the decision-making process patients really want and should have.  We who have epilepsy have a condition which often leaves us out of control.  Schneider writes, "Fortunately, you can have a sense of control without the reality."  Then he goes on to describe different ways that patients go about gaining that "sense of control".  Mike

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.