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《The Vanishing Family: Love, Fate, and the Quest to End Dementia》是一部以家族命运为切口、兼具医学侦探叙事与情感深度的非虚构作品,延续并深化了《Hidden Valley Road》对遗传、疾病与家庭关系的书写。
全书围绕美国宾夕法尼亚州 Pleasant Hills 一个九兄妹家庭展开。母亲年轻时逐渐变得冷漠、疏离、不负责任,仿佛被某种“哥特式魔咒”吞噬;后来家人发现,这个家族携带一种会导致额颞叶痴呆(FTD)的基因突变。
这种疾病尤其残酷:患者往往在四十多岁就开始出现症状,原本温和、负责的人可能突然失去工作、酗酒、出轨、卸下所有社会约束,像是“从前的自己消失了”。更令人不安的是,子女有50%的概率遗传这一突变。
随着兄弟姐妹陆续出现变化,家族命运像一部令人心碎的悬疑片展开。妹妹 Barb 踏上寻找治愈方法的道路,另一位姐妹 Sue 则在照护家人中找到了自己的位置。
这本书最打动人的地方在于,它把“痴呆”从抽象疾病还原为具体的人:谁在照护,谁在逃避,谁选择检测,谁选择沉默,谁仍试图维持尊严。它触及了衰老、自我认同、遗传宿命和爱的极限。
书名:The Vanishing Family: Love, Fate, and the Quest to End Dementia
作者:Robert Kolker
简介:From the #1 New York Times bestselling author of Hidden Valley Road comes the heart-wrenching journey of a family facing a tragic genetic destiny, set against the scientific search for hope for all of us who fear losing our selves to dementia
In the idyllic American town of Pleasant Hills, Pennsylvania, lived a family with nine siblings, the youngest a girl named Barb. As the older children headed off to college and started their lives, only Barb was home to see their beautiful, still-young mother fall under a gothic spell, changed into someone they don’t withdrawn, neglectful, uncaring.
Thus begins The Vanishing Family, journalist Robert Kolker’s stunning follow-up to Hidden Valley Road (“Deeply compassionate and chilling”, Washington Post). The family, we learn, has a gene mutation for dementia, but with a special cruel twist. As early as their forties, formerly loving parents and hard driving executives will lose their jobs, have affairs, take up drinking—shed all inhibitions and sense of responsibility, and become people their families hardly know. And there is a 50/50 chance that it will happen to their children, too.
Kolker follows the family over years as they realize that what happened to their mother is happening to first one, then two, three, four, and more begin to change. The Vanishing Family unfolds like a heartbreaking thriller, as the siblings struggle to cope with terrifying fates. Sue, the black sheep of the family, finds a calling in caring for the others. And Barb sets out to find a cure. She learns that their mutation for a rare form of FTD (frontotemporal dementia) might help scientists understand and cure all dementia, including the scourge of Alzheimer’s disease.
Moving, intimate, hopeful, redemptive— The Vanishing Family is a medical detective story about an unforgettable family that speaks to all of us who wonder how our own stories will end.









