His Brother's Keeper: A story from the edge of Medicine
Jonathan Weiner (2004, HarperCollins)
His Brother's Keeper takes Jonathan Weiner to the frontiers of biomedicine, where the latest genetic technologies promise wonders. Some of these wonders are happening already, and others are not quite around the corner. He is led by Jamie Heywood, a young mechanical engineer turned genetic engineer and activist, who is on a quest for a way to help his brother. In 1998, Stephen Heywood was diagnosed with ALS, ametrophic lateral schlerosis, which we also know as Lou Gehrig's disease. Beginning with weakness in his right hand, Stephen gradually lost nerve function; he could expect to lose the ability to walk, and eventually the ability to breathe, leading to death within five to seven years.
The past decade has seen spectacular advances in molecular biology and genetics, but the use of these technologies to help sick people is just getting off the ground. Today's work in genetic science includes the hope of using viruses to add genetic material to the cells of adult patients, potentially renewing their ability to carry out their functions. Weiner says, "Hope asked: How soon can we use this invisible anatomy to repair a dying nerve, brain, or heart? Fear asked: How much of the body can we change without losing the patient we hoped to save?"
This tension permeates the Heywoods' story. Jamie wavers between non-profit fund-raising and the entrepreneurial model of a Silicon Valley startup; he wants to see important basic research done, but he needs it to bear medical fruit in time to save his brother. Stephen has no choice about being a patient, and may consent to being a test subject, but he'd just as soon not be a poster child; he also wants to be a carpenter, and a husband and father. And while Weiner tries to be an objective reporter, he also falls under the spell of Jamie's persuasive enthusiasms, which sets him up for discouragement as problems, both scientific and bureaucratic, prove intractable. Meanwhile his own mother exhibits symptoms of a growing neural disability, and part of his attention is back at the family home worrying about her.
Weiner fell into the middle of this story, and he leaves it before its end. Jamie remains driven, continuing single-mindedly to seek people and money who would bring a treatment for ALS closer. Stephen has moved into a wheelchair, and needed a voice enhancement apparatus; he remains easy-going and thoughtful. "Stephen was still convinced that his brother would find a treatment or a cure, maybe after Stephen himself was gone. But there was nothing supernatural about any of it. That is how big things always start. They have to grow from a couple of lucky little things. They are normal miracles."
Such determination, such love, such hope--these are surely miracles too.