Surviving Epilepsy: Living with Temporal Lobe Epilepsy

by Sharon R. Powell

Surviving Wonderland: Living with Temporal Lobe Epilepsy is the story of one woman’s journey down the rabbit hole and into the Wonderland of temporal lobe epilepsy. Sharon tells of her life starting with the diagnosis and moving through seizure-related issues, the isolation associated with a condition still carrying a negative stigma, to the eventual insights into the value of the experience. For people with TLE and their families, this book can serve as a guide through the maze of a condition still not easily recognized by healthcare providers or accepted by the general public.

Medical experts agree epilepsy affects between one and two percent of the world’s population, with TLE making up about half of that number. This accounts for more than 1.5 million in the US, or roughly the population of Philadelphia. The actual number may be much higher, however, because TLE shares many of the symptoms of migraines, anxiety disorders, post traumatic stress disorder, bi-polar disorder, and schizophrenia.

A limited number of books exist on this type of epilepsy. Most books come from the standpoint of the healthcare provider. The reality, though, is that sometimes what the provider understands about TLE and what the patient experiences are hard to reconcile. Finding information from a patient’s standpoint may be the most valuable thing for someone suffering from a condition that is both physical and mental, with myriad symptoms and challenges.

Powell’s personal and professional experiences have shown her that a huge gap separates the patient from the doctor. For this reason, a book from the patient’s standpoint is a tremendous asset to those with temporal lobe epilepsy who are making their own way through the Wonderland of medicine and emotion, and those living with them.

[Copied from http://www.amazon.com/Surviving-Wonde...]

Genres: Nonfiction, Health

117 pages, Kindle Edition

First published April 7, 2014

Reviews

[J.A. Ironside · Rating 3 out of 5]

As someone diagnosed with TLE thirteen years ago, I can say that a lot of this rang true. Shockingly there is still very little information available despite TLE being an umbrella term for an entire range of seizures that just happen to start in the temporal lobe of the brain. The downsides to this book are that it is very much a personal account - don't expect much science or you'll be disappointed. However I still recommend for sufferers and those who live with sufferers because it gives a fairly clear picture of what it is like to fall down this particular rabbit hole. This is not the best written book ever. There's repetition, the account occasionally gets jumbled and narratively its not told with enough distance to be unbiased - which no doubt is the point. However the author makes some interesting and insightful deductions through the observation of her own condition. If nothing else it illustrates the terrifying lack of knowledge, compassion and interest often shown by the medical profession when faced with this - a condition that is unseen, hard to detect by strangers and not an easy medical puzzle to solve.

[Tree · Rating 3 out of 5]

helpful

It’s good to read of the author’s experiences with temporal lobe epilepsy, in part because it’s rare to find books that are first person accounts of the illness. It’s also painful to read this and be reminded of what I’ve been through and what I continue to experience, even if our experiences of the illness are sometimes different.
I hope more stories and more books come out to the public.

[Jaclyn Hillis]

I picked this one up because I knew absolutely nothing about Temporal Lobe Epilepsy (TLE).

Sharon gives us personal insight into her condition, alternating between diary entries and her observations about her condition. She illustrates the terrifying lack of knowledge, compassion, and interest often shown by the medical profession when faced with an invisible illness.

Be your own best advocate.

There is a lot of repetition in this book, but it really honed in on what it’s like to fall down the rabbit hole. I enjoyed her perspective, and makes me want to learn more about the condition.

I also appreciated that her husband gave us his insight into what it’s liking living with someone with TLE in the last chapter.

[Amanda · Rating 3 out of 5]

I gave this book three stars only because I will not put it on my shelf with literature alongside the books that I have found so well written that I will read them again to savour the sentences. That said, I read this book in one swallow--one big, interested gulp. The author gives the caveat herself at the outset that she is not a writer, her skills lie elsewhere; her goal here is to try to communicate her experience of living with Temporal Lobe Epilepsy, or Partial Complex Seizures.
For anyone who experiences this kind of epilepsy, or friends and family of epileptics, this is a very compelling read.
While the organisation of the book is unusual and, at times, confusing, I read it for her very bald account of what it is actually like to live in such an unreliable reality, where visual and auditory hallucinations, migraines, time warps and shape changes are just the norm--a part of one's reality as much as getting up in the morning and going to work...Amazingly, she maintains a successful corporate career, rising in her field to national recognition, even as her inner life (of her perceptions constant pain) is coming to shreds.
This strikes me as a brave and honest attempt to describe an experience for which there are really no words in the same way that it is often impossible to describe a weird dream or, for those who have experimented with hallucinogenic drugs, the odd perceptual phenomena that ensue.
It is brave because few medical conditions are so stigmatised, even today, as is epilepsy, and because though she does not have a real command of language, she humbly digs in and delivers many bright insights. It should also be said that epilepsy tinkers with the language centres of the brain; so she is dealing with a double handy cap--she is writing for people who may be inclined to judge her from the start, and who will quickly suppose she exaggerates, and doing so with a brain that is visibly, as stated, functioning very different from others. I hesitate to say her brain is "compromised" by epilepsy for fear of suggesting that epilepsy is costing her her intelligence, which I don't think is the case. Hers is the epilepsy that Van Gogh and Dostoevsky suffered. They suffered, but they were not the less intelligent for their difficulties.
The result of her effort to turn her insides out so that it might be visible to others is, to my mind, fruitful. I learned a lot from reading her book.

[Jill Robinson · Rating 5 out of 5]

Epileptic rabbit hole

I would recommend this book to anyone dealing with the long road to diagnosis. An epileptic doesn't have to have TLE to understand and empathize the confusion, wonder, and aura of this author.

[Christy :') · Rating 5 out of 5]

Very thankful for this book!

I am extremely thankful to have a book that portrays this condition so well. As a 29 female who was diagnosed with late onset TLE last year, I can attest to the accuracy and insight provided.

Since I lose my ability to verbally communicate after or around the time of my seizures, I can't even try to explain how I feel to people.

This book allows me to give the people in my life perspective into what I am going through. It provides hope for people who are trapped in the loneliest place in the world.

Highly recommended for anyone who is trying to understand or cope with TLE.

P.S., love the title!

[Lee]

Read a quarter of the book. Bit depressing and not very well written. Decided to stop reading.