His Brother's Keeper: A Story from the Edge of Medicine
Genre: Investigative Journalism
- Ratzan, Richard M.
- Date of entry: Dec-14-2004
- Last revised: Dec-29-2008
When Jamie Heywood, the eldest of three brothers in a tight New England family of engineers, learns that his middle brother Stephen (they all are in their 20’s at the outset of this drama which begins, for them, in early 1998) has amyotrophic lateral sclerosis (ALS), he has just assumed the position of entrepreneur in technology transfer at Gerald Edelman’s Neurosciences Institute, the prestigious think tank of the 1972 Nobel Laureate in Physiology and Medicine, in La Jolla, California.
Jamie quickly announces his resignation and simultaneously his decision to devote his life to helping his brother in the only way he can--as manager, CEO, COO and staff of, initially, a loosely organized team effort to develop a cure for ALS, an insidious wasting disease of the nervous system that progressively leaves the person with the merest remnants of voluntary motor function.
Jamie’s resignation and his move from the West to East coast is but the mildest of changes in the weather for what becomes a perfect storm of technology recruiting, fund-raising, career-rebuilding and the emotional equivalents of El Niño, profoundly affecting at least four families, three of them Heywoods: Stephen Heywood, the strapping carpenter/house-restorer with ALS, and his wife, Wendy; Jamie, and Melinda, his belly-dancing wife with a PhD in medieval French literature; the brothers’ mother, Peggy, and father, John; and, lastly, the author and his father, Jerome, and mother, Ponnie (a Polish diminutive).
Concomitant with Stephen’s development of ALS, Ponnie begins to evidence the dementia of Steele-Richardson-Olszewski syndrome, also known as progressive supranuclear palsy, a form of brain decay uncannily similar to ALS. (Fortunately for the Heywoods, ALS involves only the motor nerves, not the cognitive apparatus.)
The author’s decision to include his family’s ordeal is wise, generous and instructive. The Heywoods and Weiners are both engineering families with an academic engineer as the pater familias and both are trying their best to cope with a deteriorating illness that dismantles the center of all cerebral engineering activity, the brain. The comparison of the diseases and the responses of all the players involved are culturally and psychologically dissected with the author’s trademark precision and kindness. But this book, as the title indicates, is more about the keeper than the brother.
Within minutes of his learning of Stephen’s diagnosis, Jamie becomes a man possessed. He moves quickly, as though by intuition and almost a fated skill, from technology transfer to technology-bricolage; genetic therapy on the fly; and people-, funding- and support-transfer. In fact, when there is no transfer involved, Jamie creates in order to transfer.
Like Gregor Samsa, in the short story by Franz Kafk, from whom Weiner also deftly borrows another parable, "An Imperial Message," (to illustrate, metaphorically, the pathophysiology of ALS as a disease in which neural messages, like the Imperial Message, go awry), Jamie undergoes a metamorphosis, albeit admittedly much less drastic than Gregor’s. He molts his undergraduate degree in engineering at MIT to emerge as a self-appointed manager of any and all ALS research and gene therapy in the U.S. that might help retard the progress of his brother’s illness.
Recruiting, petitioning, nourishing, cajoling, funding, and courting researchers and clinicians alike, Jamie meets, entertains, enlists and co-ordinates the efforts of gene therapy researchers and other medical scientists. He becomes a fund-raiser with the help of Melinda and her family of belly dancers, raising $240,000 as a result of the First Annual Belly Dance Extravaganza. His efforts involve the Heywood and Weiner family members, as epicentric waves of activity inevitably affect them all.
We watch, through Weiner’s eyes (and the diaries of Wendy and Melinda, whom he cites with permission), as the four families experience the predictable mood shifts that accompany a devastating illness and the great adventure of a risky attempt to work a miracle (a miracle that Jerome E. Groopman grumpily and stuffily bemoans in a cited Wall Street Journal editorial): excitement when a genetically engineered ALS mouse outlives its cohorts and money starts to flow; and disillusionment, when Stephen’s disease relentlessly progresses, Jamie’s marriage dissolves for a lack of boundaries, as Melinda, Jamie’s wife, records in her diary, and the author’s mother slips deeper into a dementia that Lucretius, Weiner’s authorial inspiration of the book, would easily recognize as part of the world explored in his famous treatise De Rerum Natura.
By the end of the book, there is an air of exhaustion yet surprising calm--perhaps the calm after the storm--as we witness the normalcy of Stephen, in his motorized wheelchair, playing with his son. As Stephen repeatedly affirms to Weiner, now a family friend and no longer merely a reporter, "I’m fine."