on March 22, 2004
Jonathan Weiner, the pulitzer-prize winner for The Beak of the Finch, has tackled a subject that most of us will have to face sometime in our lives: a medical crisis in the family. He brings us, as he says in his subtitle, to the edge of medicine with a startlingly honest and moving account of an amazing family, the Heywoods. Stephen Heywood, a handsome young carpenter, is just finding himself when he can't make a door open by turning a key. When Weiner shows us that moment, we already know instinctively that something is really wrong, and also that something about this guy and his family will make it not an ending, but a beginning. That is the key to the book: how one family takes a devastating diagnosis and turns it into a quest for a cure. The focus is James Heywood, Stephen's brother, who turns his own life around (to great sacrifice in some ways) to find a cure for his brother. It's a superhero effort, and I won't give away if it "works" or not. What it does do is make a page-turning and incredibly meaningful and important story. Weiner brilliantly juxtaposes his own family's reaction to his mother's eerily similar illness. His family reacts much more normally--the way most of us do--with fear, sadness, anger, and eventually coping. That we strongly identify with the Weiner family as well as with the Heywood family brings this book into the level of Epic. It's as if he is telling the whole human reaction to illness in one tale, and he pulls it off like the master he is. If that isn't enough, he gives us the Big Picture of biomedicine today, and helps us understand the promises and the dangers of gene therapy, stem-cell therapy, and other cutting edge treatments that scientists are playing around with today. This is a book that everyone should read, not only for all the points I've mentioned, but also for the beautiful writing. Jonathan Weiner is perhaps the most eloquent non-fiction writer out there today, right up there with John McPhee and Annie Dillard. Add onto his literariness the great page-turning suspense of Michael Crichton, and you've got this winner.
Stephen Heywood was a carpenter, and a good one. His father was a director of an engineering lab, his mother a retired psychotherapist, one brother an aspiring Hollywood producer, and another brother an MIT graduate mechanical engineer. Stephen, therefore, was sort of a black sheep in a family of achievers. He had as a suitable project the restoration of a cottage in Palo Alto, where he was working in 1997. It was there that he put the key into a door, and it was stuck. He could not turn it, even though the lock was new, top-of-the-line, and previously working well. This simple problem puts into motion the events described in _His Brother's Keeper: A Story from the Edge of Medicine_ (Ecco) by Jonathan Weiner. Weiner has previously given wonderful accounts of current evaluations of the evolution of Darwin's finches and of the genetics of fruit flies, but here he has given a deeply human portrait of the effect of illness on one family. The problem is not the lock; Stephen dismantled it and it was in full working order. Then he discovered that he could turn the key if he used his other hand. The problem was within his own body.
It was Stephen's first signs of amyotrophic lateral sclerosis (ALS), often called Lou Gehrig's disease. ALS inactivates neurons which control the muscles. The muscles atrophy and eventually even those involved in breathing cannot function, so that the victim dies of suffocation. Death comes almost always within five years after the condition has been diagnosed, and most patients die within two years. Stephen's engineer brother, Jamie, had tackled many projects, many problems, and had overcome them all. Surely finding a cure for Stephen's condition was just one more problem, essentially an engineering problem. It didn't matter that he was a mechanical, not chemical or biochemical or genetic, engineer. Jamie immersed himself in ALS research, first on the Internet, of course, and then in the medical journals. He found that one factor getting the blame is the overproduction of the neurotransmitter glutamate, which kills off spinal nerves. He set up a foundation to power his efforts, and eventually a biotech company. He got contributions from his family, and his wife belly-danced to make money at benefit performances. The odds against success were overwhelming, while Stephen lost one function after another, providing the tension within the story.
It all should have turned out differently. It would be unfair to give away the specific ending of the book, but suffice it to say that Stephen at the end is heroically, calmly beating the odds in his own way, helped by a wife who is devoted to him and a family that cares for its lovable black sheep. He refuses to see himself as victim or hero, just prey to a "normal accident." He also does not mythologize Jamie's race for a cure, seeing it as a hunt for a "normal miracle." Jamie remains enthusiastic; it is clear that his own hubris in his project is only his individual partaking of the larger over-optimism of molecular medicine. The latter is obvious in the death of an eighteen-year-old in a clinical trial of gene therapy in 1999; as a result, the plans for gene therapy for Stephen had to be abandoned. Weiner himself shows that he has been disillusioned by medical hype. This is an often inspiring story of good intentions and hope, however; it isn't the fault of any of the people described herein, including the author, that hope is sometimes misplaced.
on June 1, 2004
I just finished "His Brother's Keeper" and will not forget this family for a long time. This book is incredibly sad but it also shows the hope of a family trying to reverse the course of a terrible illness. It is a story of the turn of a new century, when there was hope in gene therapy, in internet start ups, in Dolly the sheep.
The characterization within this book was excellent. The people who stuck out for me were Jamie, his brother Stephen and Stephen's wife Wendy. Jamie is the epitome of the driven man. His energy pops off the pages. Stephen is the searcher, the world traveler and, as Weiner writes, the Gen-X "slacker." That is, until Stephen finds his calling in carpentry and is just as driven as his mechanical engineer/entrepreneur brother.
Wendy is introduced later in the narrative. She is by her boyfriend's (eventually husband's) side as he goes through the progression of the disease. Whether arguing with a neighbor or keeping a visage of hope for her husband, she is a valuable presence in Stephen's life and in this book.
The author Jonathan Weiner is part of the story as well. He is captivated by the Heywoods and readily acknowledges it. His own mother is ill, and, as a "science writer," he has both knowledge and hope for the promise of new therapies and cures. Weiner writes of medicine, of the Heywood brothers, wives and parents, of September eleventh (briefly), and primarily, of hope. Hope and family are at the heart of this sad story of the new millennium.
A couple of years ago I had a cancer scare. There was a growth in my kidney that the doctors said was either a dense cyst or a tumor. So I had to have a CAT scan every six months for a year in order to monitor the growth. If it stayed the same, I was OK. But if it expanded, cancer was the most likely diagnosis. Fortunately, it turned out to be a cyst. But I came away from that experience with the knowledge that things can go terribly wrong in my body even if I do everything right. How do you deal with such a worst-case scenario, and how far do you go for a cure?
So it was with Stephen, a healthy and active 29-year-old from a successful family of overachievers. One day, Stephen was unable to turn the key in the door of the house he had just finished remodeling. He dismissed it as fatigue, but his hand continued to weaken and other symptoms arose. Finally, he could no longer ignore signs that something was wrong. He was examined and given a terrible diagnosis: ALS (Lou Gehrig's Disease). His younger brother Jaime, an engineer with an entrepreneurial streak, immediately switched careers to genetic engineering and began a race against time to save Stephen. Jamie founded an ALS foundation and enlisted the aid of various medical and research experts to help him find a cure using gene therapy. As Stephen's health declined, the pressure to find a cure intensified, until the stress began to take its toll on everyone involved.
I was afraid that "His Brother's Keeper" would be a turgid read, but I was mistaken. Jonathan Weiner writes in a clear fashion, and has the ability to make complex subjects easy to comprehend. The author uses Stephen's saga as a gateway to the world of cutting-edge medicine, including cloning, gene therapy, and the use of stem cells. He also reveals the arcane world of drug development and testing in the United States. Not surprisingly, medical ethics also come into play, such as the right and wrong of profiting via seeking cures, and experimental drug trials on dying humans who have no other options. But most compelling was the personal story of a family rallying to the side of a terminally ill member. Mr. Weiner was not exempt from tragedy either, for he parallels Stephen's fight with his mother's decline from a rare neurological disorder. His account of the moment when he discovered she was "not Ponnie and...not my mother (p 220)" is perhaps one of the most disturbing passages I've ever read in a non-fiction book.
Despite its excellence, I would've liked two changes in "His Brother's Keeper." First, it seemed that Stephen was a cipher in his own story. He pops in and out of the proceedings at various stages of disability, and appears lost in the tornado of Jaime's quest, the author's personal struggles, and the medical discourses. Perhaps that was intentional, but knowing Stephen better would have made him a more compelling figure. Second, the book does not end with Stephen's inevitable death and its repercussions. I wanted the closure of finding out how Stephen and his family dealt with his passing and the aftermath. But even with these issues, "His Brother's Keeper" is a fascinating tale of one family's forced entry into a part of medicine that is almost science fiction in nature. Recommended.
on May 15, 2004
"His Brother's Keeper: A Story from the Edge of Medicine" is is a beautiful book.
At age 29, just when he is finding himself, Stephen Heywood, a carpenter and house restorer, is diagnosed with ALS -- Lou Gehrig's disease. His brother Jamie, an MIT-trained engineer, turns his life upside, and adapts his engineering know-how as quickly as he can in a quixotic effort to save his brother. Corralling cowboy scientists and traditional experts along the way, he puts together a team to work on a few different ideas, including his, which is the most promising--a kind of gene therapy. This is one of the best books I have ever read.
Weiner', who won the Pulitzer Prize for the equally wonderful but very different "The Beak of the Finch," interweaves analogies and information from classic texts, from his own mother's struggle with a different neurodegenerative disease, and from intimate exposure to the Heywood family, into his narrative of the brothers' lives to create a phenomenally rich mix of philosophy, medical ethics, and up-to the minute science-- and above all, love. Weiner brings all of his incrdible intelligence and talent--along with real emotion--to bear in this unforgettable book.
on January 9, 2016
I really enjoyed this book. I felt that it was written well and was honest. It gives two very important perspectives of the difficulties of fatal diseases--from the patient and from medicine. I highly recommend it.
on January 31, 2009
This book means different things to different people. If you're affected in any way by ALS, it's that hand to hold that reminds you that while the disease is horrible, it will be okay.
Those of us who have loved ones with ALS, we know what is to come, we understand the dire nature of this diagnosis, but that doesn't mean we don't have hope. The relationship of the Heywood brothers, and the rest of the Heywood family, is how it is supposed to be; families are supposed to circle the wagons, as we are suddenly and unceremoniously inducted into a fraternity we'd give anything not to know. Read this as a book that is about human spirit, about family, about love and dedication that is lacking in so many ways in this world. Read this because when the diagnosis comes, with the averages spewed about having 3-5 years to live, maybe more, maybe less, you need hope, and the Heywoods, not only do they give us hope, they exemplify the spirit of what family is.
on August 14, 2005
I read a review of this book and instantly wanted to read it. It is a heartbreaking story of an amazing family and the sacrifices one brother makes for another. It is well researched and although science is one of the major stars here, the author makes it understandable to the lay person. It made me laugh and cry along with the family - the kind of book you save to read again. I will follow Steven's progress with care and keep this family in my heart for long after the book is finished.
on May 30, 2004
"His Brother's Keeper" is the author's extremely personal book and each reader's reaction is correspondingly likely to be uniquely (and probably intensely) personal. Thus I doubt if my own opinion expressed here will have any great generality. I'll post it anyway and apologize in advance for its specificity.
This is the third book about science and scientists by Jonathan Weiner that I have read. Based on what I saw as significant evolution in skill in the second ("Time, Love, Memory"), I had high expectations for this third. The book means to tell two interwoven stories. One is the very specific yet compellingly multi-faceted one of a young man, Stephen Haywood, who contracts an incurable disease (ALS, or "Lou Gehrig's disease) and of how his family reacts. The second means to generalize from that by relating it to how genetics, gene therapy, and other radically new treatments are challenging the accepted norms of medical research. This interplay of the particular and the universal is the approach that Weiner seemed to have mastered in his previous work.
It is a third narrative that, in my view and as Weiner almost admits, causes this account to go off course. At about the same time that he embarked on this project, the author learns that his mother is also the victim of an incurable neurological disease. As he struggles to come to terms with this devastating diagnosis, he describes how he is inextricably seduced by the efforts of Stephen Haywood's entrepreneurial brother to accelerate the discovery of a revolutionary cure for ALS and perhaps other related disorders.
The book radiates sadness from the beginning and you might want to steal yourself, as I did, by resolutely distancing yourself from its subjects. (This was a strategy that was unavailable to Weiner once he learned of his mother's illness.) Before their collision with ALS, the Haywoods were a privileged and blessed family, characterized by charm, intelligence, a prosperity that exceeded most, an excess of good taste, and apparently no notable good works. Weiner strives to convinces us that they are not just charming but also sympathetic and admirable people - "grace under pressure" is one of his professed themes -but he achieves that only for Stephen.
Tolstoy taught us that there is uniqueness in every unhappy family. The Haywood story achieves uniqueness in large part because of Stephen's older brother Jamie. At the beginning of the account, just before Stephen's diagnosis, Jamie is distinguished by two characteristics: he is remarkably tied to his brother and he has happened to have just made his way into the Biotechnology field. Trained and successful as a Mechanical Engineer, his talent and drive have propelled him into more entrepreneurial pursuits. This is 1996, and where better to be an ambitious, driven entrepreneur than in Biotech. He joins the Neurosciences Institute, with the charter to "package the think-tank's ideas and turn them into money." The scientists there believe that their research puts them on the verge of being able to "cure the uncurable." It is a time of great hubris, both scientific and economic, and Jamie has found an epicenter.
When he learns that his brother has one of those "uncurable" diseases, Jamie launches his own foundation to find the cure. Weiner traces Jamie's various battles and tries to relate these efforts to the larger story of modern neuroscience. But the author's own reactions increasingly compete for the focus of the story. He too is seeking a cure for an uncurable disease, that of his mother. His objectivity is undermined, and his ability to distinguish hype from reality is incurably compromised.
We do get fascinating and tantalizing glimpses into the science, business, and personalities of genetic therapy, but these serve only to make us wish for a more developed treatment. Weiner is a surreptitiously artful writer whose style is usually characterized by paragraphs that are compact but commanding and authoritative. He crafts many of those here, but not to the same effect as in his earlier work. In fact, this book frequently does not seem crafted at all, just avalanched from an emotional precipice. The aspects of the story beyond that of the Haywoods and Weiners are difficult to follow as scientists, researchers, and theories of neurological behavior flicker in and out of the account, and there's no index to help those of us with less than encyclopedic memories.
In the closing Acknowledgements, the author says this in thanking his father: "[h]e would much rather have kept our own story in the family, and I hope he will feel that the cause was good." This seems to me to be a measure of the both the strength and weakness of "His Brother's Keeper." It is obviously a heartfelt work that attempts great personal honesty. Yet we are left not quite sure what the cause was.
on March 12, 2006
The book itself is compelling as it glides you through the journey Jaime Heywood (the protagonist) takes in order to engineer a cure for his brother who has been diagnosed with ALS.
Weiner does a great job in showing the reader the reality and complexities behind scientific discovery and engineering. He also manages to showcase the giants in the world of neuroscience and neurology - the battle and fuse between academia and industry - the red line between ethics and empathy.
Although the summary on the back cover claims the book is written in 'translucent prose' - this is only partially true. It is evident that Weiner exerts considerable effort to keep the techno-jargons as simple as possible, however it is hard to appreciate the scientific gibberish without any prior knowledge (or interest) in the neurosciences.
Weiner writes in an incredibly personal manner and at times his bias and favourtism seems a little overwhelming. Nonetheless, Weiner is honest in the sense that he as a bystander (despite cheering the Heywoods on with all his might), is capable of comprehending the truth of the matter at hand - an incredibly interesting perspective.
The book reads almost like a fiction. The Heywoods seem almost too good to be true (any other ordinary family would have fallen to tatters). Then again not many families have handsome business-minded chap with lucrative connections in the MIT and a Pulitzer Prize-winning author documenting their story...
A good read.