I am not going to lie to you. The Vanishing Family by Robert Kolker is going to crush your soul. It’s about a specific type of dementia which destroys an entire family. You’re going to cry. Your heart will break. However, there is hope. More importantly, there are people who stare this tragedy in the face and somehow persevere. Yes, this is sad, but I didn’t finish this book feeling defeated.
The book follows a particular family which has a specific type of dementia which is early onset and genetically passed down. In pure numbers, if one of your parents has it, you have a 50/50 chance of getting it. If you have it, sometime around your 40s you will slowly stop being yourself. You will act out and say inappropriate things. You will be unable to empathize with people around you and yet you will still be able to drive, read, and live a relatively normal life for a time. Kolker tells the story mainly through the lives of the nine (!!!) children in one family, although the next generation is documented later in the book. Kolker is an excellent writer, but there is a specific trick he uses which is ingenious when dealing with so many characters. Every chapter about a family member has a list of the children in birth order with the focus of the chapter highlighted. Don’t remember which one Barb is? Well, the first page will show she is the youngest and let you know she is the focus. There is another detail I won’t spoil, but…well, it becomes obvious very quickly.
Kolker also intersperses chapters dealing with the science behind dementia and what medicine is doing to try and cure it. I am not a science nerd, but these chapters are wonderfully to the point and explained so well that even I understood them.
However, Kolker never loses sight of the fact that the family is the story. I found myself profoundly taken with each of the characters, hoping beyond hope that the 50/50 chance of them getting dementia was wildly exaggerated. It’s not. In fact, one could say it was too optimistic. I know there is a horror genre in books and TV, but nothing I have ever read or seen compares to the dread of starting each chapter only to read the telltale signs that another family member is showing symptoms.
All that said, there is reason for hope. Science is making inroads. Medications and gene therapy offer a possible cure. However, the real hope in this book is how the family comes together when everything is falling apart. Obviously, I think this is a must-read. Just make sure to keep the tissues handy.
(This book was provided as a review copy by Doubleday Books.)
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