Frontotemporal dementia is a terrifying condition that tends to strike when you are in your forties. It's not Alzheimer's. With Alzheimer's, initially you lose some short-term memory while your personality remains intact. With FTD, your short-term memory is initially fine, but your personality starts to evaporate.
What does it mean to lose your personality? You become scarily disinhibited. (You might start to have multiple affairs--or throw yourself from the window of a moving train.) You lose an awareness of yourself; though you are clearly failing at your job, you believe you're doing fine. You cannot connect with other people. In one story, a woman becomes annoyed with her teen son's loud soup-slurping behavior, so she locks him out of the house, in the cold, for several hours.
A doctor with FTD once performed a C-section. "I did that so well," he said, "I deserve to carve my initials into the mother's flesh." And the nurses watched--horrified--as he did just that.
FTD is a genetic disease; if one of your parents has it, you have a fifty-percent chance of developing symptoms. It's very easy to spot within the genome. For a long while, it was lumped together with Alzheimer's; accepting that there were *multiple* kinds of dementia just seemed too burdensome for drug companies. So, many units of time--and money--were wasted on a doomed "one-size-fits-all" research approach.
Robert Kolker can see a universal story within the story of FTD. We are all (at least occasionally) aware that we must die. We all live with loss; as the years go by, our range of options seems to contract. In Kolker's new book, a young woman, Barb, watches as sibling after sibling after sibling will start to "make friends" with FTD. Is suicide the answer? Should Barb make herself available for genetic testing? If Barb must live with the knowledge that she will spiritually "vanish" in ten years, is this a "net gain"? Life in extremis tends to reveal the dimensions of character. One in-law becomes a villain; having divorced his deteriorating wife, he lies to the court about his wife's medical condition. Another character becomes a hero; she sacrifices her career to care for a sibling in need.
It's all just as terrifying and gripping as Robert Kolker's work always is. Kolker has a stunning gift--an ability to see the world through alien eyes. So--although you're on horror-story terrain--there is something oddly mesmerizing and even wondrous in Kolker's narrative.
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