Who Is Government?: The Untold Story of Public Service

In “The Free-Living Bureaucrat,” Michael Lewis interweaves two narratives: the story of the Smith family’s battle against a rare brain-eating amoeba that infected their daughter, and the story of Heather Stone, an FDA employee who created a system to help doctors share treatments for rare diseases.

The essay first introduces Walter and Amanda Smith, a married couple whose relationship was deteriorating. Their lives changed dramatically in September 2021 when their five-year-old daughter, Alaina, experienced a seizure. After a second seizure days later, she was referred to a specialist, who diagnosed her with epilepsy. In December 2021, the doctor finally ordered an MRI, which revealed a large mass in Alaina’s brain. She underwent high-risk surgery at Children’s Medical Center Dallas, where the surgeon removed an apparent infection rather than a tumor. The sample was sent to the Centers for Disease Control (CDC), and a week later, the doctors informed Walter and Amanda that Alaina had balamuthia, a rare brain-eating amoeba that was fatal in 95% of known cases worldwide. The doctors had no established effective treatment, only a cocktail of drugs with severe side effects. Upon hearing this devastating news, Amanda told Walter she wanted a divorce once their ordeal was over.