An active mother, wife, and sportswoman until felled by two massive strokes in 1967, the author presents a vivid, moving memoir of how she learned to communicate through a computer and her painful recovery of hope.
I read this book years ago and just added it to my goodreads list. I grew up next door to Julia’s daughter Judy who was 2 years younger than me. We were best friends until I moved 2 towns over and went to middle school. I only met Julia once when George asked me to go with them to the hospital. It was shocking when as a grown woman my Mom called me and said she had just seen Julia on a talk show and that she had written a book! After reading the book, I then knew all sides of this tragedy and, of course, sobbed through it! Simply devastating on all sides both emotionally and financially for this family.
The technology of Augmentative and Alternative Communications devices (AAC) have gone from nothing but eye gaze boards (like the one Julia used) to complex computers that can detect the movement of a single muscle like an eyelid or can detect slight differences in the environment like a puff of air. These devices whether simplistic or complex aid those who can no longer communicate as they used to whether due to a stroke, car accident, or other tragedy.
This book chronicles the life of one woman who was lucky enough to live at a time when these communication devices where just being implemented. Her story is amazing because it ranges from a time when these devices were not being used at all to a time when they were just beginning to enjoy their inception in the world. So we get a 'before' and 'after' snapshot, life before people realized the her communication, not her cognition, was impaired to life after people realized that she was cognitively aware and only needed a new way to communicate. This book is an easy read and a good story of trial and success.
Extremely powerful. I couldn't put it down, even though every sentence made me want to cry. Life is hard. Life is much harder when you have no control of your body. Tavalaro successfully made her mark on the world with this book and her poetry is unique and full of emotion.
It's soul wrenching and tragic, all the more so for the autobiographical nature of the novel. It makes you want to give Tavalaro a big hug. It has made me think about people I have written off in society who may be struggling. So much of her depression came from being treated as less-than-human and it makes you wonder who else may be in her shoes. The homeless beggar on the street? An elderly man who tries to start a conversation at the bus stop? Where are the lonely people of the world and how do we reach out to them?
This book makes me want to spread kindness in the world. If one thing could come of this book, I think Tavalaro would want it to be that. And any book that makes you feel that way is an automatic five stars, wouldn't you agree?
A brutal look at what life might be like if you were unable to communicate after a serious illness. I was more interested in hearing what happened to Julia while she was in the hospice and not so interested in her reflections of her past life. It left me with questions about why her family abandoned her and why they weren't really any support. I learned, once again, about the infallible spirit that humans are capable of when put in desperate situations. I will think of her when I get 'pissy' when people ask me to repeat what I'm saying. I learned again to be greatful for the small things in life.
Excellent read for health care workers, an interesting look at how far we have come in not only augmentative devices but also in patient rights. Her story would be similar but not the same today, with therapy playing a much bigger role in the immediate post-CVA window. In a personal level, I could only keep thinking...nope. No way. Not for me. What a living hell to be locked-in. I do not know how she persevered over 30 years. I need an advanced directive ASAP.
This book is about a woman who suffers from a stroke and the only way she can communicate it to look up. She tells about being trapped in her body with a functioning mind and no way to let anyone know. It is a powerful story about learning to deal with the challenges we are given and learning to thrive no matter our circumstance.
An amazing true story of a women paralyzed with full consciousness, but everyone thought she was brain-dead in a coma. Remarkable tales of abuse, and love. I will always remember the moment when a therapist realized she was conscious and aware. That was the day her life turned around and she was taught how to communicate through "looking up".
The moment I picked it up I felt the obligation to read it and need to appreciate every word and phrase that was translated from a paraplegic woman's eyes and printed into this book. It was an intense and bitter sweet read about a woman's struggle with entrapment in her own body and her perseverance to be heard. I cried through it and until the very end. A must read.
The true story of a woman unable to communicate except for blinking and looking up and down after a horrible accident. This woman was unable to communicate for years and years until a healthcare worker took the time to sit and attempt to contact her. Such a powerful story!!!!!!!!!!!!!!!!!!!!!
An emotionally excellent read for those interested in Locked-In syndrome. Julia lives the nightmare of being trapped in her own body while being cognitively aware and deserted by her family and friends. Considering this was an assignment, I am thankful for this perspective of life.
This is an amazing memoir by Julia Tavalaro with Richard Tayson. Julia's determination and spirit in the face of her paralysis are as evident on the page as they were in person when she looked up to communicate poems to me during the period that I volunteered at Goldwater Hospital.
What a incredibly moving story and so beautifully written. This is the memoir of a young woman who wakes up in a hospital room, completely paralyzed and wanting nothing but death. Yet over the next decades in the hospital, her life slowly expands and flourishes. This book is heartbreaking and hopeful at the same time -- a strong statement that every life is precious.
i read this a few years ago but i am just adding it to goodreads now. one of my psychology professors talked about it in class; it was not an assigned reading. i thought it sounded so interesting so i went and bought it. i loved it so much. definitely need to reread.
A harrowing account of this brave woman's endurance. She survived two devastating strokes at a time when her condition was not understood and lived to tell the tale, and to make beauty out of her circumstances. I gained some insight into the experiences of quadriplegic patients which I hope will give me more sensitivity. I wished there had been a little bit more about her daily life, but perhaps that's another book.
Das Buch ist erlösend und traurig zugleich. Die Erlebnisse dieser vermeintlich als Wachkomapatientin eingeschätzten Patientin sind erschreckend. Jahrelange Demütigungen durch Pflegefachpersonal. Doch schließlich kommt Erlösung durch eine Therapeutin die ihre Arbeit nicht nur mit Verstand sondern auch Herz macht. Rückkehr ins Leben wird möglich nach jahrelangem Vegetieren in einem sterilen Krankenzimmer.
This was an inspiring story of a young woman trapped in her body by the onslaught of two major strokes. I found myself struggling in her pain. I cried in her triumphs. Her indomitable spirit lifts her beyond her circumstances. She gets the concept of choosing easy rather than hard in a situation that appears to have no easy. Just an amazing book!
An emotional read for sure. But, worth it if you're up for the ride. It made me think about how we treat the people that we interact with on different levels throughout our lives. And how often times dignity and grace are displayed in silent ways.
An amazing book-i couldn't put it down. It made me more compassionate for those paralyzed with no cognitive way of speaking or being heard. coma victims struggle to communicate and we need to be more passionate to their needs-this book opened my eyes.
This is a book for everyone, but especially for anyone who is, or wishes to become, a healthcare provider. It doesn't matter the health profession, this should be a required read.