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Seizing Control: managing epilepsy and others' reactions to it - a memoir
Despite a lifelong challenge managing epilepsy, Laura Beretsky has led a good life with friends, rewarding work, and a life-partner. After having a grand mal seizure at work, she was devastated by the subsequent job insecurity—her superiors sidelined her. When her first child was born three years later, she worried that loss of awareness during seizures jeopardized his safety. Laura opted for brain surgery despite the terrifying possibility of life-threatening complications.
Seizing Control offers candid descriptions of rattling physical experiences of smaller and grand mal seizures and patient self-advocacy required to get the best possible medical care. Foreword by Dr. Steven Schachter, Harvard Medical School neurology professor.
Seizing Control offers candid descriptions of rattling physical experiences of smaller and grand mal seizures and patient self-advocacy required to get the best possible medical care. Foreword by Dr. Steven Schachter, Harvard Medical School neurology professor.
216 pages, Paperback
First published October 25, 2023
7 people want to read
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Displaying 1 - 2 of 2 reviews
May 15, 2024
In 2019, Laura Beretsky was filling out a job application, and she had to decide whether to check the box for people with disabilities.
Laura had had epilepsy for years, and in 2014, she actually underwent two brain surgeries to put her seizures in the rearview mirror. She could have left that disability box unchecked, to avoid explanations and escape the stigma that her new employer might attach to people like her. She had reason enough to choose silence. A previous employer had downgraded her work evaluation and essentially forced her out of her job after observing her having epileptic seizures in the workplace. But Laura decided to go public about it. She got the job.
This book is a continuation of the courageous decision to speak out about "epilepsy and others' reactions to it" (as the subtitle of the book proclaims). It is a public service to those of us who know little about the disease AND to those who have gone through it.
Read this book and you will learn about the disease, the diagnosis, the treatment, and the personal care that recovery from surgery required. You will also get a visceral sense of what it feels like to know a seizure is coming on. You'll go through Laura's process of making difficult choices that not everyone in her life (medical advisers or family members) agreed with, and in some cases, never knowing whether they were the right choices or not. You'll find out a bit about what it was like to be her husband and her children going through these experiences without having a choice in the matter: she is crystal clear about how difficult that was for all of them.
You will also find out what people did to support Laura that wasn't helpful and the things that definitely were, and she will point you toward places you can go for more information and/or to get involved in advocacy for people with disabilities.
Full disclosure: I know Laura as a fellow resident of Somerville, MA, and as a former member of the Somerville Grant Writers and Fundraisers Group. We had mostly fallen out of touch before the events described in this book, however, so her story was all new to me. What I did recognize was her voice: wry, smart, honest, troubled by troubling things and cheered by cheerful news, and dedicated to making a better world.
Laura had had epilepsy for years, and in 2014, she actually underwent two brain surgeries to put her seizures in the rearview mirror. She could have left that disability box unchecked, to avoid explanations and escape the stigma that her new employer might attach to people like her. She had reason enough to choose silence. A previous employer had downgraded her work evaluation and essentially forced her out of her job after observing her having epileptic seizures in the workplace. But Laura decided to go public about it. She got the job.
This book is a continuation of the courageous decision to speak out about "epilepsy and others' reactions to it" (as the subtitle of the book proclaims). It is a public service to those of us who know little about the disease AND to those who have gone through it.
Read this book and you will learn about the disease, the diagnosis, the treatment, and the personal care that recovery from surgery required. You will also get a visceral sense of what it feels like to know a seizure is coming on. You'll go through Laura's process of making difficult choices that not everyone in her life (medical advisers or family members) agreed with, and in some cases, never knowing whether they were the right choices or not. You'll find out a bit about what it was like to be her husband and her children going through these experiences without having a choice in the matter: she is crystal clear about how difficult that was for all of them.
You will also find out what people did to support Laura that wasn't helpful and the things that definitely were, and she will point you toward places you can go for more information and/or to get involved in advocacy for people with disabilities.
Full disclosure: I know Laura as a fellow resident of Somerville, MA, and as a former member of the Somerville Grant Writers and Fundraisers Group. We had mostly fallen out of touch before the events described in this book, however, so her story was all new to me. What I did recognize was her voice: wry, smart, honest, troubled by troubling things and cheered by cheerful news, and dedicated to making a better world.
December 27, 2023
Dr. Steven Schacter's foreword opens with a compelling message on the importance of raising awareness of what epilepsy is and is not. Laura Beretsky delivers. We feel the telltale signs that a seizure is coming on and - as Laura rouses on the other side - the fear and dread of wondering who witnessed it. We cheer her on as she battles workplace discrimination. Join her courageous journey as she contemplates and then undergoes a rocky, but ultimately successful, brain surgery. Seizing Control reveals Laura as a resilient role model for anyone facing a medical challenge or disability. Readers will benefit from powerful lessons of patient self-advocacy!
Displaying 1 - 2 of 2 reviews