Fall, 2004
By Jonathan Weiner
Ecco, an Imprint of HarperCollins
New York, 2004, 354 pages
Review by Richard M. Ratzan, MD
Emergency Physician
Hartford Hospital, CT
Imagine you are the dean of a medical school, the chief operating officer of a corporation or a skilled programmer for IBM. Imagine yourself any of these and you learn, at the age of 31, that your 29-year-old kid brother has just been diagnosed with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease). Certainly you would call, commiserate, try to help as much as you can. But would you quit your job, reinvent yourself as a manager of scientists-all strangers to you at the time -working in this and related fields of neurobiology, and embark on a financial and entrepreneurial crusade to try to save your brother?
Jamie Heywood was a 31-year-old mechanical engineer working for the Neurosciences Institute-the prestigious think tank of Gerald Edelman, the 1972 Nobel Laureate in Medicine, in La Jolla, California -when he and his tight Boston family of five, heard the news in the beginning of 1998. He handed in his resignation and began a marathon of activity all geared towards preventing his brother Stephen from becoming the wheelchair-bound shell of a man we see in Stephen Hawkings, the famous astrophysicist with ALS. Leaving California, Jamie sets up a 24-7 headquarters for ALS-related activities in, and later near, his family home in Newtonville, a suburb of Boston. His Brother's Keeper is the story of this crusade as told by the Pulitzer-winning science writer, Jonathan Weiner. (It first appeared in The New Yorker in 1999 in a shorter version.)
Stephen, the middle son of a South Dakotan therapist and a British professor of mechanical engineering at MIT, was the renegade of the three boys. Jamie and Ben went to MIT and graduated with degrees in engineering, which is the operative world view of this book, since both the Heywoods' father, John, and the author's father, Jerome (at Brown University), are university engineers and the authors of highly technical books, respectively: Internal combustion Machine Fundamentals and Statistical Mechanics of Elasticity.
Stephen, a carpenter, was restoring a house in Palo Alto, in December of 1997. He realized something was wrong when he had trouble turning a key. Almost exactly a year later Robert Brown, a neurologist at Massachusetts General Hospital, diagnosed Stephen with ALS. In May of 2000, a neurosurgeon injects Stephen's cervical spinal canal with stem cells (to no effect, but also with no harm). Exactly a year later, Stephen is in a motorized wheelchair with a voice so soft Jamie has to translate for the author.
Between the turn of the key in December 1997 and the wheelchair in May 2001, we watch as the author expertly narrates three stories: Stephen's illness and the Heywood family's reaction to it; his own mother's eerily similar neurodegenerative disease, progressive supranuclear palsy, or pSP (actor Dudley Moore died of PSP in March 2002); and the ongoing development-scientifically, politically and ethically-of gene therapy and what Weiner calls both "regenerative medicine" and "futuristic medicine."
This book creates a rich tapestry from the woof and warp of these narratives and the reader gets the macro and microscopic pictures of all three stories by the last page. Interwoven is the angst of Weiner's mother, Ponnie, as her mind slips and slides into cognitive decay; the history of Guam field research by John Steele on a fascinating variant of PSP (with generous and typically insightful comments by Oliver Sacks); the personal interviews with and revealing pro- files of the major players in molecular genetics and "regenerative medicine." There are also literary references to Donne and Kafka, among others. Quite relevantly, when the author relates that a neurologist had told his family that his mother had a rare and incurable disease (Lewy body dementia), Weiner cites John Donne, from the XIIIth Meditation of his Devotions Upon Emergent Occasions: "It is a faint comfort to know the worst, when the worst is remediless." Such references sometimes blind with their clarity, like the inclusion of Kafka's short parable, "An Imperial Message," a 250 word short story that begins, "The emperor, so a parable runs, has sent a message to you, the humble subject, the insignificant shadow cowering in the remotest distance before the imperial sun." Of course the message never makes it past all the obstacles to the humble subject. As a unifying parable of well-intentioned signals gone awry, the parable is brilliant in illuminating the neuropathology of ALS.
The dominant thread throughout, however, is the Heywood story and especially the driving force that is Jamie Heywood. Jamie quickly becomes the focus, the tapestry's overarching pattern as the dynamic ubermensch who oversees (having never been asked) his brother's scientific and clinical care, organizes a new co-operative initiative into the field of ALS research, and coordinates gene therapists, molecular biologists, clinicians, family members and philanthropists at a cost. By story's end, Jamie is separated from his wife. Although we are given signals (paradoxically, the author seems to have gotten them but Jamie, like Kafka's humble subject, did not) by Melinda, Jamie's wife, of the toll such a frenetic life was exacting prior to the separation, we do not get the details of the breakup, just the aftermath of a deserted house. Is Jamie sad? Apparently. Remorseful. No. "When I asked Jamie if looking back he would do anything differently, he said, 'If you ask me would i prioritize Melinda above those life-and-death decisions-no.'"
Stephen, on the other hand, is happily married and playing with his child using hardware and software. How else would the ALS-stricken son and brother of engineers play with his child? And Stephen's response, typed on his keyboard amidst his family, "I FEEL LIKE A KING" says it all about the mind-body drama we have just read.
It is no minor accomplishment that Weiner, amongst the personal, political and medical stories, clarifies almost effortlessly and transparently the mechanics-he is, after all, also the son of an engineer-of gene therapy and the pathophysiology of ALS. His explanation of science is painless and always carefully related to the patient and symptoms at hand.
in collaboration with
Dartmouth-Hitchcock Medical Center
The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.
