3 comments about A Pained Life.

1. This book helped me in a sense that I could assure me, "I am not alone."
   This book does not offer you the solution/cure to TN.
   However, it gave me the warnings for the future medical/legal decisions.
   As a TN patient, although the type of TN that I suffer and the type of the TN that the author suffers are different, I have gone through the very similar experiences with dental/medical/legal professionals.
   So it was very difficult and relieving for me to know that I was not alone.
   This book is good for "Reality Check."
   This book gave me a courage to live despite of everything, since now I know that there exists a person who has guts to keep living.
   I thank the author.



2. Amazing. I was 29, 3 years ago, when I developed TN. I had a few of the same procedures and doctors as Carol. I also had an MVD, which basically ruined me for a long time.
   Anyways, it was nice to hear someone else's tale about the horror of TN. I thought I had a hard case, but Carol is a true inspiration to me. She really went thru a lot and, it turns out, is a wonderful writer!
   This was a book based on medical info. But it wasn't boring at all. It was a real page turner. I couldn't put it down and had to finish it in a few days. I plan on loaning it out to others who are dealing with the "fun" of TN issues. Thanks for a fabulous book!



3. This is the true story of the author's struggle to overcome the debilitating pain of trigeminal neuralgia. Trigeminal Neuralgia (TN) is widely accepted as the most painful comdition known to medicine. It is a disorder of the fifth cranial (trigeminal) nerve, occurring in only 155 people per million, which causes intense intervals of electric shock-like pain in the areas of the face where the nerve branches. Carol Jay Levy begins her story as a young woman about to pursue a career on the stage in NYC. Suddenly, her hopes are dashed, as this disorder invades her existence. Diagnosis is elusive (she is "too young" for TN) and doctors repeatedly try to pigeon-hole her as mentally ill, due to a history of depression. Finally, the diagnosis is made, but treatment is ineffective, and she considers suicide, as some 80% of people with TN are thought to do.
   "A Pained Life is ... is so real, so honestly told, so suspenseful, that it is hard to put down. Carol Jay Levy's courage and perseverance can help light the way for others who endure pain and a medical maze, with little hope and less help. Medical professionals might also gain insight from this personal story of someone at the other end of the stethoscope."
   Reviewed by Kathy Lyons 3/28/04 for the American Chronic Pain Association.

No comments about A Deaf Artist in Early America: The Worlds of John Brewster Jr..

3 comments about Loving Rachel: A Family's Journey from Grief.

1. Jane Bernstein has done an amazing job describing the heartbreak of the initial diagnosis and the ensuing challenges of raising a child with special needs. Having been in this same position with my own daughter, I felt like Jane was sitting in my kitchen watching the struggles we were having and the ones we faced with each passing day. I have recommended this book to colleagues and other families with similar circumstances.



2. I thought this was a wonderful book. It manages to be not only about what it's like to give birth to a disabled child, but about the particular nuances and responses of a family, about a marriage, an older child's attempts to navigate these waters, the narrator's complex, ambivalent but ultimately loving and couragous response to the child she has borne. Nothing is simple in this book--not Rachels' progress, not her family's response to her, not the medical world that sometimes seems to hurt her as much as it helps her, not the waiting and waiting to see what Rachel will become. Nonetheless, this is a story not only about endurance, but also about the complicated, powerful workings of maternal love.



3. I have a child who also has this disorder. Loving Rachel was important for me to read because there are no other books written which address Optic Nerve Hypoplasia or Septo Optic Dysplasia, but I want everyone to know who considers reading this that Loving Rachel is not a guide for you or your child and that no two people are affected in exactly the same way by this disorder. I could relate with some of the things Ms. Bernstein wrote about but mainly I walked away from this book feeling sad for this family and for Rachel.

5 comments about Secret Life: An Autobiography.

1. This book was tasteful and interesting. I bought and read this book because I saw that my english professor was reading it--I didn't even know what it was about. When I bought it and saw it was about an addiction to sex I felt a little embarrassed--but soon got over it because it's not about sex, it's about a man with an addiction. I reccomend this as a literary read if nothing else. Ryan has true talent.



2. I never understood sexual addiction until I read this book. Ryan is incredible - he is able to completely convey what horrors this compulsive behavior meant for him. What said it all to me is when he explained he would go into bars and pick up whomever - a man, a woman . . . it didn't seem to matter! (He wasn't bisexual) Another shocker is that he had an incredible position at Princeton, but just couldn't keep his you-know-what away from his students. All that mattered is that he HAD to have sex, the compulsion was so incredibly intense, he just approached whomever was handy. In addition, this book, surprisingly enough, is amazingly funny (it reminds me of another memoir, "Permanent Midnight" in that way). Sometimes I found myself laughing out loud! It seemed that the humor was a great healer for him. My only regret is that he didn't reveal his treatment, which I would have loved to have learned about, as his compulsion was so deeply engrained. Bravo to him for "coming out of the closet" on this issue, writing this book, and showing us what this compulsion took from him.



3. This is one of the very best books I have ever read about sex addiction. Not only does it present a powerful, gut-wrenching account of what it feels like to be such an addict, it also tells a moving, often tragic, but also inspiring story of growing up in the America of the '50s and '60s.

   The author wins you over early as he leads you slowly and painfully through his early childhood and molestation, his memories of his alcoholic father, academic and athletic struggles, peer conflicts, bottoming out in his sex addiction, then seeking recovery through a 12-step program.

   Must reading for anyone affiliated in any way at all with any of the nearly half dozen programs dealing with sex/lust addiction. Highly recommended for other 12-step recovery people who might be tempted to snear at sex addiction. Ryan demonstrates that his disease was just as deadly as alcoholism and drug addiction. After reading the book, one realizes it is no laughing matter - regardless of what some sitcoms and commercials say.

   Compares well with "Asylum" by Patrick McGrath, also about sex addiction, but, unlike "Secret Life," a novel with the tone of a thriller. Ryan's story is so compelling, one almost feels sorry to put it down but wishes the author well at the end as he embarks on a hopeful journey of recovery.




4. I found Secret Life reveals many insights about human nature. Michael Ryan models a way to honestly face the worst aspects of oneself--right through adolescence--with humor, compassion, and therefore the capacity to change.



5. My Dad used to teach me that no one is "weird", but that we are all people of different backgrounds and experiences. This book shows that truth in the life story of Michael Ryan. It's a brilliant example of the experiences that shape each individual life, for better or worse or sometimes, eventually, both

4 comments about Regina's Record.

1. "Regina's Record" is an exceptional piece of literary non-fiction. Van Amber combines the story of his mother's mental illness and the horrifying treatment she suffers at the hands of the Veterans' Administration hospital staff with the autobiographical details of his own childhood and early adulthood. The writing is crisp and restrained during the most horrifying events, creating a sense of clarity in the reader. In other sections, the writing becomes lyrical, moving in its expression of love and pity and search for kindness. By the end, the reader believes both Van Amber's grandmother who says "The world is a hard place," and Van Amber, who finds miracles and kindness in that hardness. A beautiful book. A must read for students of counseling and psychology and psychiatry and nursing and medicine, for anyone whose profession requires them to see the human faces of the patient and the family members behind the label of the mental illness.



2. THIS IS AN INCREDIBLY BRAVE LOOK AT A LIFE, THAT IN SO MANY OTHER SIMILAR CASES HAVE BEEN PASSED OVER, AND EXAMINED FOR WHAT IT IS - A LIFE! REGINA'S RECORD IS SO SENSETIVELY WRITTEN, AND KEPT ME PINNED TO MY FAVORITE READING CHAIR. THANK YOU JAMES VAN AMBER!



3. The most affecting moments in this memoir take place when the mother and son share a scene. The opening scene, for example, shows, in great detail, how a five-year-old boy witnessed his mother being taken away to the mental hospital. Much later, as an 18-year-old about to join the Army, he visits her at a VA hospital north of Chicago, and she does not recognize him; furthermore, she says that she has no son. What would she make of this memoir-- the son, now in his fifties, reclaiming his mother, detailing her life of abuse and sad delusion? That is the powerful irony that lies embedded in every word of this memoir--how Regina never knew her son (and could not help him) and how the author only knew Regina long after she had died (and could do nothing to help her).

   In one sense, it's a tough book to read. It does not spare the reader. It never censors itself. At the same time, it is beautifully written, a work of great literary craft, that can be appreciated by all who care about excellence in writing, not just by those who are interested in the subject of this book. It would make a terrific movie.




4. This is a book that should not be missed. As I read through the pages, I felt myself walking with Regina as the grip of the VA psychiatric hospital became tighter and tighter. The little boy (the author) has an amazing talent for not only condensing his mother's pain, but also his hopes, fears and his attempts to avoid his mother's fate.

   It really is a thought provking book. The treatment of the mentally ill, children without parents and the brutality toward women left me with a new perspective.

   I recommend it without qualification.

No comments about Congratulations! It's Asperger Syndrome.

5 comments about If I Get to Five: What Children Can Teach Us About Courage and Character.

1. I had to read this for a class. Thing is, I went in thinking it was too fluffy and idealistic. But for some reason I couldn't stop reading, and when I was half way through it I realized that I was actually being affected by the readings. I recommend it for anyone who enjoys inspirational stories, who are going through hard times with a medically fragile child, or who need to be reminded why they got into the health profession in the first place. He writes about many of his patients, the lessons each one taught him about life, how he deals with pain and loss, and explains medical jargon. I enjoyed this book and would gladly recommend it to anyone who asked about it.



2. your heart feels every emotion. You can read this book in one day you will not want to put it down. Page to page you want to know what is going to happen to Dr. Fred. Not often can learn of someones struggles, and ask the hard qusetions to yourself. The "whys" in this man's life are hard to understand. Until you know that to him living is enough. This book will make you laugh, cry, never want to give up.



3. During the summer or 2004, I was at a junction in my professional path where I found myself in desperate need of encouraging words. I went into the hospital bookstore and found this. The book is simple, the narrative is not as flamboyant as John Stone's "In the Country of Hearts", but it strikes a chord, confirming a fact that we already know to be true: children are much more capable of opening their hearts and minds than adults. To capture the stories of these patients requires a man of courage and character, and I get the feeling that it's exactly what makes Fred Epstein a very special man, and physician.
   
   On a side note, this book was instrumental in finding a neurosurgeon for my niece's classmate. I had just read the book, and gave it to my mother to read. Just two weeks after she got the book, we heard that this little girl had a tumor and had been flown to see some specialists in Miami. After communicating with that family, they were able to get a consult from Dr. Epstein, and she is now recovering, although her prognosis still remains uncertain.



4. Fred Epstein is some sort of folk-hero of a man: Moved by righteous anger to battle against the evil cancers that threaten the lives of innocents, he performs miracles, curing "inoperable" tumours in his bespoke Neverneverland kids hospital.
   
   Whilst parents of a sick child may find solace or interest here, this book (and I appreciate that this view will be unpopular) did nothing for me.
   
   The narrative reads across between a religio-medical manifesto and a self-help book. For every hundred words of anecdote about a child who fought cancer, there's another hundred of pop-philosophising. There are glimpses of the children's brilliance, and one can appreciate the resilience that Epstein is trying to convey, but there is just too little detail here to do more than produce a colour-wash of feeling. It is this that fails to portray the depth of the situation, as any parent could easily empathise and little more understanding is offered by this book. Rather than giving a true insight into the life of a paediatric neurosurgeon, or any more than a superficial glimpse into the lives of his patients and their parents, this comes across as a pseudo-religious pick and mix of ideas, faith and assertions set against a candy-floss coated spiel about the courage, pluck and strength of children.
   
   Whilst there are undoubtedly some amazing stories here - not least Epstein's own as he struggles to recover from a brain haemorrhage with the distant hope of operating again - they are glossed over and whilst any individual's story would be fascinating, these soundbite snippets and clichés form an insubstantial whole that fails to do justice to Epstein or his charges.
   
   Epstein is clearly writing from the heart and to not enjoy his book is not to denigrate the fantastic work he has done for these children and their parents. For parents of children facing surgery, this may be a valuable support and readers who appreciate this tale might also like Albom's Tuesdays with Morrie. For other readers interested in the processes of treatment and recovery, but not fans of the self-help platform, I recommend instead McCrum's My Year Off, Diamond's C: Because Cowards Get Cancer Too and Vertosick's When the Air Hits the Brain.
   
   
   dr_sasp



5. I read alot but I don't write that many reviews. This one has to have one. I was ok for the first one hundred pages but on page 108 something happened and I read the rest in tears. This is a great lesson for parents of sick children and parents of seemingly well children. After all we as parents are not given any promises. I checked this copy out from the library but I want my own copy to make notes in and keep on my own shelf. I plan on letting my friends and family in on this little gem.

3 comments about Miles to Go Before I Sleep: A Survivor's Story of Life After a Terrorist Hijacking.

1. I read "Miles To Go Before I Sleep: My Grateful Journey Back from the Hijacking of..." and I assumed "A Survivor's Story..." would be the sequel. It is actually the same book with a new title and cover.
   
   The story is very inspirational. I would love to see a sequel about where Jackie is today.



2. I just heard Jackie Pflug speak at an event yesterday and she was amazing. Her incredible story and her determination to recover and remain positive truly are an inspiration. I had to get her book after hearing her story and she really explains why you shouldn't sweat the small stuff in life. She was simply amazing and blew me away.



3. I saw Jackie Pflug speak at a luncheon and I knew I had to buy her book. Her speech was the most inspirational I have ever heard and I have been a "junkie" of inspirational speeches. The book did not disappoint.
   There is something here for everyone -- a riveting adventure story as she gives a moment by moment account of the hijacking. There is inspiration in her telling of her recovery and the goals she set for herself. Jackie explains her philosophy and spirituality in a way that would be consistent with most any relious belief-- or non belief.
   Most of all, you will learn to appreciate every single day. This is not a sappy "survivor" account but a real life experience that happened to change the author's life. This book will give you the courage to face your obstacle's. It is on my gift list for everyone I know.

1 comments about Learning to Live With Huntington's Disease: One Family's Story.

1. So many people have written rave reviews to the Sulaiman's and the publisher on this book, I was surprised not to see any posted under Amazon's book review!
   
   Huntington's Disease has been so intricately entwined into the fabric of my life since the early 1980's when my only child, Kelly, was diagnosed with the Juvenile form of this devastating disease. Throughout Kelly's life, and since her death at age 30 to complications of JHD in 1998, I have been deeply involved in trying to help families living with Huntington's Disease by providing resources and support where I can. "Learning to Live With Huntington's Disease: One Family's Story" is one of the best non-fictional books on HD to be written since Carman Leal's "Faces of Huntington's" was published in 1998! Whether you are a professional involved in providing support to HD families, a person diagnosed with HD, a young person growing up in an HD family, a person at-risk for inheriting the disease, a friend or a relative of a family living with HD, or a spouse thrown into the role of a "caregiver" in an HD family, each chapter in this book not only will touch your heart but will provide you with insight on how this disease affects every single aspect of the life of anyone who is living with HD!
   
   I highly recommend reading "Learning to Live With Huntington's Disease: One Family's Story"!
   
   Jean E. Miller
   HD Patient Outreach
   HDSA HD CoE at USF~Tampa, FL.
   HD Links: http://get-me.to/hdlinks

2 comments about Silent Alarm: On the Edge With a Deaf EMT.

1. I believe this book is a very inspiring book that tells you how one lives its life. It gives me a very vivid picture of what the author is writing about, It is like a book come alive, and it's like a movie in some way. I am very proud of this man who sees an opporunity and takes it and achieves it. I can see a deaf man who can do anything, Not even blood stops this man. Death overflows this book, I can see the smoke of the dark cloud come out of this book and it feels scary but is also a very inspirating book which is full of true scenes that happened to him. I recommend anyone to read this book. It may encourage young kids to achieve their dreams and not to let anything stop them. Who can be an Emt like this man and face alot of discrimation? I wonder who can stand this much?
   Read this book!



2. I can't believe it. He saw my worst nightmare five times over every day.