The Vanishing Family – The New York Times

Today, C. protects her father. “He tried to get her help,” she said. “He reached out to my grandfather, my mother’s father, and said: ‘There’s something wrong with Christie. Something is changing.’ And she just shrugged it off.” She’s equally protective of her privacy. (She mentioned — and several other family members told me this — that two of her aunts lost their jobs after speaking openly about their family’s illness.) She’s also benevolent toward Christy. “I remember she was a wonderful person, fun and active,” he said. But those happy memories seem less accessible to C. now that the illness has taken a toll. They are affected by everything.

During her teenage years, she watched from afar as her Aunt Susan faced many challenges. Christie owes the IRS $10,000 in back taxes. Christy’s weight increased to 250 pounds, until Susan finally locked her in the refrigerator. One time, Christy left the mall on a shopping trip and wandered five miles in the cold and rain to Wendy’s, where the police were called and dinner was bought for her. There were tears in her eyes when Suzanne held her, but Christy was fine — unperturbed, even happy. During C.C.’s visits, she herself could see her mother’s mysterious, almost random new personality. Once, in front of C.’s boyfriend, Christie asked C. if she was sleeping with David Hasselhoff, the star of Christie’s favorite show “Baywatch” at the time. It was painful to see my mother become unrecognizable like this. But with Susan taking care of Christy, C. was at least free to be a teenager, go to school, and one day start her own life.

Once she was in her mid-20s, pursuing a career, that’s probably what it would have been like — her mother’s tragic illness, a difficult childhood, a safe landing with her father. Then his family came to know about FTD. While others, especially her older relatives, lined up for genetic tests, she, like Barb, stayed in her place, deciding she didn’t want to know. She wanted to give herself time. “I was just like, ‘If I find out I have this now, I won’t have any motivation,'” she said. “‘I would have no desire to proceed.'”

She made a deal with herself: She would be tested in five years, when she turned 30. For her, the decision to delay knowing felt less like a play for personal agency, more like a denial of control over something she had no control over. In those five years, C. tried hard not to think about the family situation—to carry on as if it didn’t exist. It was even less possible for her to pretend than it was for Barb, when the example of her own mother was always present before her, living with full-time caregiving, losing her ability to speak, losing herself.

When C. turned 30, she had a serious boyfriend whom she told about the risk of FTD when they started dating several years ago. Now he was engaged. She began to execute her plan to find out the truth. “I wanted him to have the option of opting out if he didn’t want to deal with me,” she said.

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