A moving account by an extraordinary young woman who mounts a daily struggle with cystic fibrosis in an effort to lead an ordinary life.
Twenty-one-year-old Laura Rothenberg has always tried to live a normal life--even with lungs that betray her, and a sober awareness that she may not live to see her next birthday. Like most people born with cystic fibrosis, the chronic disease that affects lungs and other organs, Rothenberg struggles to come to grips with a life that has already been compromised in many ways. Sometimes healthy and able to go to school, other times hospitalized for months on end, Rothenberg finds solace in keeping a diary. In her writing, she can be open, honest, and irreverent, like the young person she is. Yet mixed in with this voice is an incredible maturity about her mortality.
The memoir opens with Rothenberg's decision to accept a lung transplant. From the waiting--and all it implies to the surgery, recovery, and her new life, Rothenberg muses on mortality in journal entries and poetry. Through it all, she reveals a will and temperament that is strong and wise despite her years.
Laura Rothenberg's story, recorded and shared on NPR's Radio Diaries , was awarded the prestigious Third Coast Audio Festival Award, it also received an unprecedented listener response and generated more e-mail than any other story the producers could recall. Rothenberg's story was also featured in the New York Times and U.S. News & World Report .
I always feel very strange reading this type of book. Like a voyeur, I worry. Wanting to hear about someone else's difficulties with life so I can sit back and sigh and think "wow, that's terrible. Glad I don't have to deal with that!" Illness as entertainment.
Note: The rest of this review has been withdrawn due to the changes in Goodreads policy and enforcement. You can read why I came to this decision here.
In the meantime, you can read the entire review at Smorgasbook
I wanted to like this book so much, because I have something of an interest in chronic illness and cystic fibrosis, but I found it disappointing. Laura Rothenberg, a college student with cystic fibrosis (a terminal illness that affects the lungs), decides to undergo a double lung transplant. The book is the story of her wait for new lungs, told through journal entries and e-mail updates.
I was bothered by the fact that a portrait of Laura as a person didn't start to emerge until the portion of the book where Laura's friends and family wrote about her transplant. She had a boyfriend named Brian who isn't even mentioned in the first half of the book. Ill friends of hers are introduced and later die without any real explanation of their relationship to her. I can't tell if the author's illness and death contributed to the lack of editing. I wanted to read the story of Laura's life, but this book is ultimately the story of her death.
This entire review has been hidden because of spoilers.
This book was so informational & so sad at the same time . The last twenty or so pages made me cry my eyes out . Laura was a very strong girl with a lot of life & so little air . This book made me realize that not a breath should be taken advantage of .
I liked this book because it really got at the raw emotions that are felt and thought patterns experienced by many during chronic illness and CF, in particular. While the writing style is unconventional, I thought it was appropriate for the things being expressed.
I was familiar with Laura's story from NPR, so was eager to read this book. It's hard for me to say, but one hurdle for me to get over in reading it is that I don't think Laura and I would have gotten along had I known her. I know she had lots of wonderful qualities, but something about her personality just rubbed me the wrong way. I feel terrible saying it, but there it is. I just didn't find her terribly likeable. Admirable, yes, but I just didn't like something about her tone. As a memoir, it was kind of disjointed, and while it was interesting, it didn't really keep me involved in her story. I think it's terrible that Laura had to endure so much suffering and her life was cut so short. I just didn't really like the book.
This entire review has been hidden because of spoilers.
I first heard about Laura Rothenerg from an NPR CD I'd received as a premium many years ago but never played. One day I put it in the car's CD player and listened to Laura tell her story. I must have played the Radio Diaries segment three or four times. This book is a nice continuation of that, and really brings home the challenges of CF. I did long for a little more about her life. (The boyfriend only gets a mention at the end!) and a little less medical jargon, but it was still a moving tale of an extraordinary but too short life.
I feel guilty about not liking this memoir by a young woman with cystic fibrosis who died at 22, but it isn't good. I'm not sure this material was ever intended to be a book, most of it is just updates on her health sent to friends and family. I have read several other memoirs about illness and dying that were far better.
Laura Rothenberg is - was - clearly one of those special beings who affect everyone they touch. She glows on these pages with a fierce and unforgettable voice, making you envy every person who got to know her. She doesn’t hold back on the medical details so you need to be able to handle the gritty and messy truth, but the reward is to feel a connection to a beautiful soul.
I don't know. I really wanted to like this, but I was hoping for a more narrative account of her experiences as a chronic patient. Or what her life was like living with CF to enable me to extrapolate the differences between hers and kids who don't have CF.
She primarily focuses on the time flanking her lung transplant using her diary entries and e-mails from the time. It's clearly the most personal way for us to follow what she's going through, but it was kind of muddled.
Her friends, teachers, care takers, assert she had a gift for writing, I wish she would have intentionally written a memoir rather than compiling some diary entries and essays from people who knew her.
While I was in medical school her father came to discuss his experiences being a physician with a daughter diagnosed with a chronic disease. It was several years after her death. As a part of his lecture he shared a video recording of Laura giving a talk at grand rounds, or some major lecture for health professionals.
She was dynamic, well-spoken, and had interesting, tart, things to say. I guess I wanted this book to be an extension of that dialogue.
I felt compelled to read this memoir for two reasons: 1) Laura and I share the same birthday, though she was born ten years after me. 2) I've had a couple students with CF, one of whom I still keep in touch with, and I wanted to understand what it is like to live with this horrendous disease. I'm impressed by Laura's honesty and unflinching resolve to be her most honest and true self, even as she endures one awful medical procedure after another. To read a memoir like this, you have to be willing to sit with sadness, you have to be willing to let it haunt you for awhile. Strangely enough, this feeling evolves into something much more complex, the true intimacy of understanding someone else's experience, even if it is painful. Laura's story isn't just about sadness and pain though; it is an eloquent reminder that all of us have a finite amount of time to live, and how we fill each of those moments is a conscious choice, or should be. Make each moment count, each breath count.
This is an autobiography of illness (cystic fibrosis) told by a young woman with the disease, who has since died. One of her doctors was my attending in the MICU this year and encouraged me to read it to understand the experience of someone living with CF. I'll be honest; it was tough to get through the book. I found it hard to sympathize with her reactions to her illness and how she described her interactions with the health staff. But it was good for me to hear her anger, her self-pity, her mature and her less mature insights.
I become interested of reading this because of our topic now in our biology subject which is about genetic disorders, and our teacher made us to research 1 genetic disorder. So I surfed the net, and I found different genetic disorders and read about each one of it, and I found cystic fibrosis, and it is different from the others, maybe because the one who had it looks normal but on the inside they were so much suffering, and now our teacher asked as to search about a person who suffer that genetic disorder that we have researched on.
Laura Rothenberg, who passed away months before the publication of her memoirs, due to complications from cystic fibrosis, wrote about her experiences living with CF. A beautiful book, written by an extraordinary young womyn. I keep this at my bedside at all times, the lessons Laura teaches about our society's reactions to illness, differences, and disability are innovative and keen.
Great book, having known Laura, it really captured her essence. I think it should be a mandatory read for any future health care professionals, Laura will school you! She reminds us health care providers how not to be in a witty and palpable sense. She took a lot in stride and really lived her life to the fullest which is chronicled in this book.
What a sad story, told by an incredibly positive and brave young woman. I wish the book had told more of the basics of CF, since I didn't know anything about it. I read a little about it on my own to better understand what Laura is talking about. It's no literary masterpiece, but tells a story that makes you think and puts things in perspective.
Touching account of a young girl who dies of CF. Reading it, you feel like Laura is a good friend. I'd also recommend going onto the Radio Dairies website and checking out her dairy, "My so-called lungs."
Authored by a beautiful young lady whom I would have liked to have met, this book was very difficult for me to read. I want so much for researchers to eradicate CF so that no one else has to deal with this awful illness.
FANTASTIC book by a patient living with cystic fibrosis. This is a required reading for pediatric residents at WVU before our infectious disease/CF month. It should be a required read for everyone! It really makes you appreciate life a little more.
I think I would have liked this book a lot more if I read it when it first came out. Laura and I were the same age and I think I would have appreciated it a bit more. I really loved her candidness about CF and all of her feelings surrounding it.