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Volume 1, Issue 1
Spring 2005:

His Brother's Keeper: A Story from the Edge of Medicine by Jonathan Weiner

Review by: Richard M. Ratzan, MD

Cell 2 Soul. 2005 Spring; 1(1):a7

Ecco (2004); 368 pages; ISBN: 006001007X

I can usually tell within minutes when my patient (I am an emergency medicine physician) is an engineer. The attention to the minutest detail, the personal involvement, almost thrill, in the problem-solving aspect of the case, the fastidiousness of the carefully rendered history - these and other telltale clues often provide the diagnosis of an engineer with a medical diagnosis I've yet to make. Once, about 15 years ago, I missed a tiny finger fracture that was clinically irrelevant since I had splinted it anyway. The engineer patient asked for his film, took it home, scanned it into a digital image and sent it to me with an arrow pointing to the tiny, albeit missed, fracture, an image I could now keep for my education! (We had actually parted friends; I had given him my email address since I thought the entire process was more an interesting sidelight to my career than an educational opportunity for improvement, as the CQI people like to say.)

His Brother's Keeper is the story of an engineer with a problem. His problem is that his non-engineering brother has just been diagnosed with amyotrophic lateral sclerosis (ALS, aka Lou Gehrig's Disease), a disease of neurological signals that never reach their muscular targets. Jamie Heywood, 31, is the technology transfer guru, the new kid on the block of Gerald Edelman's Neurosciences Institute (the prestigious think tank of the 1972 Nobel Laureate in Medicine, in La Jolla), when he and his close family of five learn the bad news. Stephen, the younger brother with ALS, is 29 and a carpenter, a restorer of old houses, in reality an engineer like his brother, albeit of timber and hardware. In fact, it is while Stephen is restoring an old Victorian house in Palo Alto, in December of 1997, that he first discovers that his body is not right, is malfunctioning, to use the predominant metaphor in this book, i.e., a machine with a problem. What malfunctions is his right hand when he tries to work yet another machine, a door lock. His right hand will not turn the key. Almost exactly a year later Robert Brown, a Harvard neurologist and a subspecialist in ALS, diagnoses Stephen. Ben, the youngest brother, is also an engineering graduate of MIT, where the three brothers' father, John, is a professor and author of Internal Combustion Machine Fundamentals. Peggy, their mother, is a therapist and the keeper of the house in Newtonville, a town outside Boston.

When Jamie hears the news by email, late in 1997, he begins his move from technology transfer engineer to family engineer. For what he does, and what Jonathan Weiner documents so well, is to re-engineer himself and several others in the process, not all for the better, in a fairly well coordinated attempt to prevent his brother, a robust hulk of a young man, from becoming the eventually skeletal, prototypically wheelchair-bound ALS patient, like Stephen Hawkings, the famous astrophysicist with ALS. Although the effort is valiant, he does not succeed; the book, however, does. The ensuing narrative is a story only the son of an engineer, Jonathan Weiner, could appreciate and construct about a family of engineers converting themselves and others from theoretical to applied engineers.

Jamie, a mechanical engineer by education, is a problem-solver. Although that might sound redundant when describing an engineer, Jamie is that unusual type of problem-solver who becomes the stuff of fascinating reporting. In fact Weiner devotes a chapter to a description of Jamie's hankering for problems entitled "The Repair Man", the moniker his wife, Melinda, has given him. He had already re-trained himself for the switch from mechanical engineering principles to the genetic and molecular biology engineering knowledge necessary to understand the information flooding his circuits daily at the Neurosciences Institute.

He begins a campaign devoted to a basic science (theoretical) and clinical (applied) onslaught to find a cure for his brother's ALS. Although the juggernaut he soon assembles - he enlists the national help of two genetic therapists (Matthew During and Paolo Leone) in Philadelphia, an ALS neuroscientist (Jeffrey Rothstein) at Johns Hopkins, and others - honestly arises as an attempt to engineer a team to help cure Stephen, Jamie quickly realizes that his efforts to energize the research into a protein (excitatory amino acid transporter two, or EATT2) essential to the complicated process of transmission of neural impulses has broader implications relevant to all ALS patients.

Weiner's book is a rich, well built engine that successfully relates the understandably conflicted emotions of the family. Although the course of Stephen's illness is an unaltered and progressive decline, Weiner wisely includes the transient local successes from apparent research breakthroughs involving genetically altered mice with ALS and EATT2 genes, and the national and international environment of gene therapy, including the disastrous death of Jesse Gelsinger, a young man with a highly publicized gene therapy misadventure.

In fact, HBK is three finely tuned engines with turbo-drive gears: engine number one, of course, is the drama of the Heywood family, especially Stephen. Engine number two is the eerily parallel and synchronous neurological disease of the author's mother, who suffers from progressive supranuclear palsy (PSP), a neuro-degenerative illness with close anatomical and molecular ties to ALS, with interesting asides into the history of the field research in Guam by John Steele into lytico-bodig disease, the intriguing variant of PSP (with generous and typically insightful comments by Oliver Sacks). But the dominant engine Weiner builds, the Ferrari of the three, is story of Jamie's crusade to help his brother and the carefully wrought look into the gears and pistons that make Jamie run as his brother's keeper.

It is one of the strengths of this book that the rich sound that results from these three engines and their narratives is symphonic and not just noise. One hears the macro and microscopic machinery hums of all three stories - still individual but harmonious - by the last page. Interwoven amongst the angst of Ponnie, the diminutive of the Polish nickname for Weiner's mother; the personal interviews with and revealing profiles of the major players in molecular genetics and regenerative medicine, like Jacques Cohen, Lee Silver, GŁnter Blobel, Matt During, Paola Leone and more; and literary references to Donne and Shakespeare, among others, that sometimes blind with their clarity, like the inclusion of Kafka's short parable, "An Imperial Message", as a unifying parable of signals gone awry - the dominant sounds one hears are the Heywood story and especially the driving force that is Jamie Heywood. Jamie quickly becomes the center of focus, the repetitive theme 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 co-ordinates gene therapists, molecular biologists, clinicians, family members and philanthropists. At a cost. By story's end, Jamie is separated and Stephen happily married playing with his child via hardware and software: How else would the ALS-stricken son and brother of engineers play with his child?

Since the Accreditation Board for Engineering and Technology has recently re-defined the goals of their programs, it is interesting to note that Jamie meets their criteria:

Engineering programs must demonstrate that their graduates have:1

  1. an ability to apply knowledge of mathematics, science, and engineering
  2. an ability to design and conduct experiments, as well as to analyze and interpret data
  3. an ability to design a system, component, or process to meet desired needs
  4. an ability to function on multi-disciplinary teams
  5. an ability to identify, formulate, and solve engineering problems
  6. an understanding of professional and ethical responsibility
  7. an ability to communicate effectively
  8. the broad education necessary to understand the impact of engineering solutions in a global and societal context
  9. a recognition of the need for, and an ability to engage in life-long learning
  10. a knowledge of contemporary issues
  11. an ability to use the techniques, skills, and modern engineering tools necessary for engineering practice.

And in a recent issue of "Metropolis" (http://www.metropolismag.com), in a long and intriguing article about the creation of the new Seattle Public Library, with Rem Koolhaas at the architectural helm, Tim Macfarlane, an architectural engineer, states that "Good design should not cost more - it should cost less. It should be thought out, and thought should add value. What we do as engineers is ask: how do you solve as many problems as possible with one act? That requires collaboration." (pages 104-105)2

What Jonathan Weiner has accomplished in HBK is the collaborative engineering of a story that works, a well designed story about two families of engineers, how they approach their respective problems, and how their inevitably less than successful solutions to human problems, especially the devastating illness of loved ones, is the nuts and bolts of a good story well told. The emphasis, to Weiner's credit, is on the attempt, the design, the construct, rather than the results.

References:

1 ABET Engineering Accreditation Commission Criteria

2 "The Making of a Library", in Metropolis, October 2004, vol. 24, no.2: pages 97-115

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