Unraveling the Mysteries of Dementia: Robert Kolker’s Deep Dive into Love, Loss, and the Vanishing Family
Robert Kolker: I’m so glad to be talking with you again, Leslie. I do think that as a society, we often wall ourselves off from difficult subjects and uncomfortable feelings. Stories are one thing we all rely on to help us process and reckon with the fears we all keep hidden, just to get through daily life. In my narrative nonfiction, I think I’m drawn to stories of everyday people facing some version of the fears we all share. I think we all can learn from these people.
This family actually found me. Four years ago, I got the first email from one sibling, explaining their predicament. The choices they all face — whether to get tested, have children, tell their friends — was breathtaking. But then came bigger questions: What about any of us is real and lasting, if one genetic mutation can completely change someone’s personality? And if this mutation can be fixed by gene-editing, why hasn’t that happened yet?
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