Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
Feb
26
2013

“The Test” by Jean Barema

Published: 2005

Length: 160 pages

Summary:In “The Test: Living in the Shadow of Huntington’s Disease” by Jean Barema, a successful journalist in France, tells the story of his chaotic emotional life before finally getting tested for the Huntington’s disease gene. At age 52, Barema faces the decline of his affected older brother and younger sister while considering whether or not to find out the truth about himself. He questions everything in his life that could be a potential symptom: depression, irritability, and similarities to the mother who could have passed along the abnormal gene to him. Barema almost drives away his wife, children, and family as he approaches his personal doomsday – April 4th, the day his test results arrive.

“The Test” focuses on what it means to be at risk for Huntington’s disease and how this differs from having the disease or caring for a loved one with the disease. Barema explores the rationality and irrationality of suicide if he were to receive a positive test result and pushes the boundaries of what actions are acceptable when death is potentially imminent. He questions what it means to have one’s brain destroyed from the inside-out and whether there really is a line between being disease-free and diseased with HD. This book’s importance lies in its examination of how not knowing one’s HD status can be life-changing all on its own, something that families and doctors seek to understand and HD patients usually remember all too well.

CMB 02/26/2013