His Brother's Keeper: A Story from the Edge of Medicine [Hardcover]

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.

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.