Great book. Although the end fizzles a little, the prose is wonderful and the method of combining personal experience with literary and family historyGreat book. Although the end fizzles a little, the prose is wonderful and the method of combining personal experience with literary and family history is fascinating....more
Skloot took ten years to research and write this book, and the time was well worth it. It's a compelling story, not so much of the woman of the title,Skloot took ten years to research and write this book, and the time was well worth it. It's a compelling story, not so much of the woman of the title, but of her daughter, Deborah, and Skloot's poignant relationship with her.
For me, there were many fascinating questions that remained by book's end. Skloot poses the question of whether or not individuals or their families should be financially compensated for the use of their cells and tissues in research. But what the story pointed out to me was the way that this kind of science is less these days about finding cures and treatments than it is about making profits. It was hard to hold the original scientists accountable for their "stealing" of Henrietta's cells because they didn't see her cells as a profit machine. Only later, in other people's hands, did they become profit machines. Although informed consent should never have been left by the wayside, this made me wish that some more of that scientific curiosity was behind today's research.
Skloot certainly captured the family's vulnerability. In some ways, it felt almost invasive to me, as the family's lack of resources was so astounding that I could see they might feel ashamed. Of course, it's not their fault, and Skloot is careful to make that clear, but I wonder what they will eventually feel about it. And I do hope that Skloot has fully kept her word to invest in scholarships for the Lacks family children. It would be bizarre for someone else yet again to get rich from their situation without any help for them.
Anyway, a great story, dispassionately and yet movingly told....more
I am a big fan of Verghese's nonfiction. He's one of the best writers among the fleet of physician-writers out there. And there were good things aboutI am a big fan of Verghese's nonfiction. He's one of the best writers among the fleet of physician-writers out there. And there were good things about this novel, but it didn't hang together for me. The forward movement of the novel hinges on a mystery about the pregnancy of a nun who dies in childbirth, but the mystery turns out to be something disappointingly uninteresting. And I really felt a male chauvinism in the way the female characters were treated that I've never noticed in Verghese's nonfiction, maybe because he's hoping they'll make this into a Hollywood movie. Unlike the positive ravers on amazon.com, I also felt as though the medical information was too detailed (and I love medical information); it was almost a catalog of illnesses and conditions, as if Verghese felt a need to cover it all, and this interrupted the story quite at length at times. The ending is a very tidy deus ex machina. All in all disappointing, though I will give V the benefit of the doubt and will hope this first novel was a learning experience and a second might be better. His editor should have insisted on better....more
A powerful book about medicine gone wrong. Vicki Forman gave birth to twins so premature that they should have been allowed merciful deaths. Instead,A powerful book about medicine gone wrong. Vicki Forman gave birth to twins so premature that they should have been allowed merciful deaths. Instead, the doctors took every heroic measure to make them live. One died anyway, and the other lived eight years with terrible complications and disabilities. Forman's appeal is that she is honest about the awfulness of her situation. She doesn't mince words. Reading the book is, of course, uncomfortable, as she traps you with her in the nightmare of callous doctors and inappropriate nurses. I did feel, however, that it was very difficult to feel for her son, and I found this odd since he was at the center of the story. Haven't quite figured that out yet, and perhaps it's because she focused so heavily on the first year of his life, which was a series of worsening diagnoses and medical crises. But I felt no grief to learn in the Epilogue of his death, only relief. Maybe that's appropriate, but I'm not sure. Terribly sad. ...more
Ackerman chronicles the aftermath of a massive stroke for her husband, Paul West. Paul was also my writing teacher and mentor during graduate school,Ackerman chronicles the aftermath of a massive stroke for her husband, Paul West. Paul was also my writing teacher and mentor during graduate school, so I was immediately invested in how devastating the subsequent aphasia was for such a language-loving person. Ackerman captures his personality before the stroke and then the long process of re-discovery for both her and Paul. Having already done a lot of research on the brain for an earlier book, An Alchemy of Mind, Ackerman is the perfect person to observe carefully--and she was also the perfect person to challenge the limitations of usual stroke-recovery techniques. So she pioneered new ones for a man who would turn his nose up at the pedestrian nature of most rehab coaching. This is also a beautiful chronicle of what it means to be married and to still love someone who is much changed by illness. Beautifully written with more profound insight than in dozens of other illness memoirs....more
In a way I dreaded reading the by-now well-known story of the glamorous man who edited Elle magazine in France and who was struck by a sudden brain heIn a way I dreaded reading the by-now well-known story of the glamorous man who edited Elle magazine in France and who was struck by a sudden brain hemorrhage that left him unable to move most of his body. The writing of the book was a triumph in and of itself, as he had to do it by blinking his eye when a person reading aloud the French alphabet got to the letter he wanted. I have a hard time reviewing anything like that for the writing in itself as opposed to responding to the sheer miracle of its existence.
But last year I suffered my own brain hemorrhage, and though I escaped major brain damage, I knew I had to read this book. And it was poignant and fascinating. I loved the way that Bauby described his reliance on his imagination and memory now that he was unable to move. And his gradual realizations about the loss of all his life's privileges provided an interesting thing to contemplate: I felt distinctly that I wouldn't have liked the person he was before this event, but I very much liked the person he became after. Disturbing for me to think about, as I certainly would not have wished this experience on him but felt that it gave him much greater insight than he probably ever had before. I am glad he found a way to share it....more
I liked this book, I really did, but it went haywire for me in Richard's turn toward religion at the end. First, I didn't feel compelled to go with hiI liked this book, I really did, but it went haywire for me in Richard's turn toward religion at the end. First, I didn't feel compelled to go with him on this journey--perhaps because of his controversial decision to use second person instead of first to write about himself. I didn't mind this strategy up to that point, but then he has this sudden conversion, a "call" to religious life, and I just can't buy it without a little more reflection and insight into why this happened. I suppose he would say there's no reason but God, but I couldn't follow him into that part of the story and therefore it felt fake to me.
Richard is an interesting writer and seems to be an interesting person, and I was compelled by his stories about his disabilities. His prose has more "profluence" than just about anyone else's, and he tells a damn good tale about his troubled youth. If only the end......more
This is one of my favorite books of all time. I'm not usually a great reader of collections of letters, but O'Connor comes to life so brilliantly in hThis is one of my favorite books of all time. I'm not usually a great reader of collections of letters, but O'Connor comes to life so brilliantly in her letters that I immediately loved this book. It's a big, thick book, but as I came to the end of it I wept. I knew that I was coming to the end of her life, and I so wanted her to live longer. She was a real character, in all the best senses of that word. And she had no patience with b.s....more
This is not as polished a manuscript as most of McCullers's books, but it is important nonetheless to show her growing as a writer even near the end oThis is not as polished a manuscript as most of McCullers's books, but it is important nonetheless to show her growing as a writer even near the end of her life. Her turn toward memoir was both painful for her and unusual for the time. It was a brave move for her to examine her own often difficult life....more
I read this book with some eagerness, as I’m always glad to hear a whole-systems approach to medicine. However, I ended up being disappointed. I am suI read this book with some eagerness, as I’m always glad to hear a whole-systems approach to medicine. However, I ended up being disappointed. I am sure that Dr. Agus is a highly intelligent man who has made strides in his field of oncology, but I am unimpressed with the job that his ghostwriter did. The book relies very heavily on standard health advice—get plenty of sleep and exercise, eat whole foods, try to be less sedentary, etc. And even what’s offered as “new”—take baby aspirin and a statin drug after age 40, throw out your vitamin supplements, and wear comfortable shoes—are really not all that new. If you hadn’t heard about these debates and suggestions already, then you weren’t paying much attention.
That doesn’t mean that there aren’t good things about this book. I celebrate any physician who is trying to focus on preventive medicine and who believes in empowering people with information about their health. He is absolutely right that we need to do things differently in health care, and he has some good ideas about what some of those things are. His orientation toward the wealthy and the celebrity aspects of his work lead him astray a bit. But I do think his intentions are a step in the right direction.
Still, for me, this book is flawed in a few important ways:
1) The entire first part felt a lot like an infomercial for genetic testing. Dr. Agus admits that he is part owner of a genetic testing corporation, which he names, but that still didn’t ease my sense of having paid for a book that was a big promotion for his profit-making corporation. It was almost as if they sat around the corporate board room and asked, “How can we get more customers? Oh, let’s put out a book that is really an ad. We’ll have profits from the book AND more genetic testing customers.” And the thing is that Agus’s particular corporation doesn’t get good reviews online. Wired noted that it is overpriced even compared with similar companies. And most of us do not have health insurance that will help pay for it, nor do we have doctors that can interpret the information obtained. Dr. Agus’s fantasy of health care that is tailored to the individual based on genetic screening is both futuristic and out of the reach of most people financially.
2) In his chapter on tossing out vitamin supplements, Agus notes two things: a) correlation is not the same as causation and b) animal and petri-dish studies don’t always apply to the whole human person. I couldn’t be happier for someone to say this. Yet, as the book progresses and Agus turns to his causes, he uses the same kind of questionable study results as though correlation IS causation and as though animal and lab studies CAN be generalized to people. There are many examples, but, for instance, on p. 255, he uses a study of rats to claim that people need downtime. Now, I believe in downtime, but this study doesn’t prove its need. He also does this with the issue of “positive” people living longer or surviving cancer longer—a chicken and egg question if ever there was one. And he notes in cavalier fashion that “study after study” shows that happier people live longer. That does not mean, I will remind him, that the happiness causes people to live longer. This is a classic confusion of correlation and causation, which he criticized before. Maybe I’m missing something, and I certainly don’t have the same level of expertise at analyzing medical studies that Agus has. But, something is inconsistent here.
3) Agus claims that we need to become personally responsible for our health, and I am certainly a person who has years of experience doing so. But he hedges about the need for universal health care. While he does cite the brutal statistics involving our health care system (p. 296-297), he also notes that “we need health-care reform at a much more basic and fundamental level before we can get to the financial end of it” (p. 279). I think he has it backwards. In fact, Agus calls on all of us to gather our own health data and share it fearlessly so that large-scale analysis of such data can be conducted. That is a great idea, but it is not likely to happen as long as the health insurance industry is able to disenfranchise any of us at a moment’s notice and as long as people are discriminated against because of their health standing, and, in fact, can’t get independent health insurance with certain pre-existing conditions. Agus notes that many corporate fitness programs do collect data anonymously and preserve individuals’ privacy. Would that I trusted that would always continue. But I know full well that those policies can change with the political climate. As long as profit is the motive for the health insurance industry, then some individuals will always have the potential to have their health information held against them. To assert otherwise is unrealistic. ...more
This is a terrific book about family love and what it means to have a family member who is "different." Though Glen focuses particularly on the autismThis is a terrific book about family love and what it means to have a family member who is "different." Though Glen focuses particularly on the autism of her youngest son and the challenges he faces as he grows up and becomes a man, the issues she raises are similar for most any family that faces a disability or health issue in a child. What's most unusual about this book is the combination of Glen's mother-love and her cool journalist's eye that gives her the ability to see even her own family clearly. When I read the first chapter, I didn't like the persona of her husband, Bruce, but as I read further into the book, Bruce became a complex and sympathetic person, but one who has the difficulties of a real human being, as does Glen herself. And she doesn't mince words about those troubling moments that they have. In other words, you feel as you read that you are in the hands of someone you can trust to be honest with you, and she reveals the difficulties with humor and modesty. That the book ends on an up-note that many disabled people never (unfortunately) have, Glen is also cautionary about the discrimination that her son will continue to face in his life. She makes a powerful argument for respecting the disabled and tells a beautiful story of parenting. The writing often sparkles, and the book is a pleasure to read....more
By far and away my favorite book of the year, and perhaps beyond that time frame. I read this slim volume as slowly as I could, and I will go back toBy far and away my favorite book of the year, and perhaps beyond that time frame. I read this slim volume as slowly as I could, and I will go back to it over and over again, because it is beautiful and thought-provoking at the same time.
It's a quiet book, although it is about the sounds and musics of the world. I love that combination--contemplative yet thrilling in moments. I categorized the book as poetry as well as memoir because the short essays often have the suggestive, cryptic, imagistic feel of poetry.
The book is also about the author's blindness without being about the author's blindness. Whenever someone has a "condition" that takes up time and energy to deal with, it's inevitable that it will affect the story and the language, but Kuusisto has written what I think of as the least malady-oriented memoir of anyone categorized with other ill and disabled writers. This book is a celebration of the sounds that guide and enliven him--from the conversations he overhears, the things people say to him, the rush of air, the leaves rustling, the machinery of planes and automobiles, to a whole host of other things that the sighted hardly think about hearing. This book will wake you up in that regard.
It's also a wonderful depiction of place--the book starts with stories of Kuusisto's childhood home places and moves outward into the world of travel. All of the personalities of these places take on much more specificity than if merely described by sight.
A rich and wonderful book. I have to add that I have read so much lately that is not wonderfully written--so much that is overrated as prose and for which the praises are sung based on sensationalist subject matter and some so-called "energy" (and not much else), that I truly celebrated this exquisite prose and expansive sensibility....more
Everyone made a big deal out of this book when it came out, but I found it unconvincing. Read Diane Ackerman's One Hundred Names for Love and/or PaulEveryone made a big deal out of this book when it came out, but I found it unconvincing. Read Diane Ackerman's One Hundred Names for Love and/or Paul West's The Shadow Factory for more interesting insights into the aftermath of stroke....more