I just finished reading this wonderful new book that has been added to the growing body of PNES literature. It is co-authored by Kate Taylor and Jeffrey Underwood. In just 85 pages, it provides the reader with a candid view of the struggles author Kate Taylor faced when she developed PNES and sought help from health professionals. But it doesn’t stop there: it goes on to provide reflective and artistic exercises and a plan for a three-day retreat that assist you, the reader in understanding how your PNES developed, what triggers the episodes, what warning signs you have, how to stay healthy, and how to advocate for yourself and the community. The book also provides helpful tips on how to explain PNES to others which is always a difficult thing to figure out.
I found her description of how she was initially informed of her diagnosis to be very moving: simply told that she had “pseudo seizures” and “was crying out for help”. She goes on to explain how by proactively searching for more information on her condition, she came to understand that her condition is called: psychogenic non-epileptic seizures, that she is not “a lunatic” and that there is hope for recovery. She shares that she is now in psychological and psychiatric treatment and is well on her way to recovering.
I especially enjoyed Chapter 1: Rag Rugs and Backstories and Chapter 2: Over the Rainbow and Waiting because they are so artfully penned.
At the Northeast Regional Epilepsy Group, we are considering adopting some of the artistic exercises that the book discusses including clay modeling, the color of your seizures, torn paper collage, black-out poetry to our wellness program.
You may not know that Kate Taylor is the author of a poem that has become the unofficial poem of PNES called It has a Name and which will be read out loud at the October 3, 2015 Second PNES conference.
The authors wrap up their book description on the back cover with a very telling statement: Together, we say as a community of friends: PNES…Finally, it has a name! We are comforted and comfortable. We feel acceptance. We are not alone. It is not the end. Be blessed with healing in your body, mind, and spirit. May your seizures be quieted.
This book is available on Amazon and is sold for the very reasonable price of $7. http://smile.amazon.com/Color-Seizures-Living-PNES/dp/1515243052/ref=sr_1_1?s=books&ie=UTF8&qid=1440245425&sr=1-1&keywords=color+of+seizures
Remember that if you purchase through smile.amazon and select Epilepsy Free as your chosen charity, a portion of the sale is donated and helps us maintain our scholarship program for adults with PNES.