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I like a lot of things about the summer months including the warmer weather, the longer days, the fact that New York City becomes less crowded, traveling, and sitting or lying outside resting and catching some sunrays. But what I especially enjoy about the summer is that I get to read the books that have been patiently waiting on my desk during the busy year. Typically, over the months, my workspace is steadily invaded by a pile of books that grows in height and that serves as a constant reminder that I should be carving out some time for reading (and not just clinical and research duties). The tower of books represents an assortment of publications that I have chanced upon one way or another and that I set aside to read “as soon as I have some free time.”
I find reading to be one of the most enjoyable ways to spend my time off and I hope you do too. So here go some recommendations.
And because this is a blog dedicated to PNES, it should come as no surprise that I am going to recommend books related to PNES and seizures.
For Clinicians:
Let me start out by recommending “The Psychogenic Non-Epileptic Seizure Pocketbook,” to psychotherapists or health professionals who may just be starting to see PNES in their practice. This book was written with the goal of providing a short and sweet resource, written for clinicians who may wonder if their training is enough to treat psychogenic (functional) seizure disorders. The PNES Pocketbook essentially aims to answer questions such as why these seizures are treated by psychotherapists instead of neurologists and how psychotherapists can tailor their treatments to work effectively with these patients. It also goes on to discuss safety in the office, in the patient’s life, and many other practical topics. Chapters that are especially important to allay a professional’s concerns are: Chapter five: Managing psychogenic non-epileptic seizures in a professional setting, Chapter six: Living with psychogenic non-epileptic seizures: Employment, Chapter seven: Living with psychogenic non-epileptic seizures as a student, Chapter eight: Other practical issues and recommendations for living with PNES. Lastly, as its name suggests, it is a pocketbook which means it is brief and reads easily.
Another excellent book that is meant for clinicians who work with PNES and is about clinicians who work with PNES (although patients may also find it interesting to learn how professionals feel about PNES, how they came to work in this field, and to see their humanity) is “Nonepileptic seizures in our experience” edited by Reuber, Rawlings, and Schachter. It includes the personal accounts of over 90 healthcare professionals from all over the world. The goal of the project was to provide readers with a better understanding of the experiences, feelings, and thoughts that clinicians who work with a challenging disorder such as PNES have. Hopefully, seeing these clinicians as humans (with their doubts, fears, and personal reasons for why they do what they do) may allow for more open communication and understanding in what should be a partnership and not a hierarchical interaction. For professionals, they will likely feel validated in some instances, surprised to learn that others see things differently or maybe see things similarly regardless of their country of origin and culture. The book almost acts like an asynchronous support group for professionals and for this reason, I recommend it.
https://global.oup.com/academic/product/non-epileptic-seizures-in-our-experience-9780190927752?cc=us&lang=en&
For those wanting to hear directly from a patient about their experience with PNES:
View from the floor by Kate Berger
What a pleasure this book is to read! Berger is a very, very talented author and in this book she shares with great honesty her experience of living with PNES as a young woman. She doesn’t mince words and is sometimes brutally honest, but she does so fluidly and conversationally, which ends up making the book highly entertaining and a page-turner. Her story is going to resonate with readers who are living with PNES because she brings to them a perspective that is often missing from the PNES conversation – the perspective and voice of an actual patient and her voice comes out loud and clear. This is not written by a professional, it is not a textbook nor is it a guide; this book shines a light on this condition as experienced on a personal level.
https://www.amazon.com/View-Floor-Psychogenic-Non-Epileptic-Perspective/dp/069254545X
And then a second book that also references “the floor” in its title is “On the Floor Again” by another stellar writer, Mia Montgomery. Montgomery provides vivid descriptions of how her life changed as a result of PNES. She takes the reader through her experience of multiple seizures per day, the seemingly endless medical tests, doctors, medications, and finally a diagnosis that was hard to comprehend—Psychogenic Nonepileptic Seizures (PNES). Readers are also privy to her thoughts on potential stressors and traumas that probably contributed to the appearance of the seizures as well as ways in which she learned to manage this condition. In this book, she graciously shares raw excerpts from her personal journals and blog, as well as stunning photographs that she began to take following her seizures. This is another fantastic book for anyone wanting to learn about PNES written from a personal perspective.
And finally, I am going to recommend a book that is not about PNES but rather written by someone who has epilepsy, “A mind unraveled” by Kurt Eichenwald. I am recommending it because so much of what Eichenwald writes about in this memoir will resonate with people living with PNES. I think this is probably true because whether your seizures are epileptic or not, sadly seizures tend to be affected by stigma and ignorance and the lives of people who have them can be similarly impacted (e.g., driving prohibitions, being on the lookout for potential dangers in case a seizure strikes, discrimination at school or work, etc.). One of the things that may ring especially familiar to many includes the painful descriptions Eichenwald gives of the long road he travelled to be properly diagnosed and then treated, the many disappointments and false hopes, but also his experience ultimately with a true professional. His accounts of the discrimination and stigma encountered in college, at different work sites, with doctors, and with others in his life, are certainly painful to read yet important to recognize. However, keep in mind, some parts of the book are really tough, and the reader should be prepared emotionally and mentally for this. What I hope readers will especially carry away from this book is a sense of hope and drive to continue regardless of all the obstacles life may throw their way. Eichenwald’s story will stay with the reader for weeks and is truly inspirational! For this reason, I strongly recommend this book.
https://www.amazon.com/Mind-Unraveled-Memoir-Kurt-Eichenwald/dp/0399593624
Well, I think this list is plenty long since we have less than two months left before classes start up and the autumn sneaks back in. I hope you enjoy these books and if you have a book that you would like to recommend to me, feel free to write it in the comments section below. Have a great summer!