The Vanishing Family – The New York Times

Today, she protects C. “He tried to help her,” she said. “He reached out to my grandfather, my mother’s father, and said, ‘Something is wrong with Christie.'” Something is changing. And he just ignored her.”

During her teenage years, she watched from afar as her Aunt Susan dealt with a host of challenges. Christie owes the IRS $10,000 in back taxes. Kristi swelled to 250 pounds, until Suzanne finally locked the refrigerator. Once, Kristi pulled out of the mall on a shopping trip and wandered five miles in the cold and rain to Wendy’s, where the police were called and she bought her dinner. Susan was crying when I caught up with her, but Christy was fine – unfazed, even elated. During Sy’s visits, she is able to see for herself the mysterious, almost random, new figure of her mother. Once, in front of C’s boyfriend, Christie asked C if she slept with David Hasselhoff, the star of “Baywatch,” Christie’s favorite show at the time. Watching her mother become unrecognizable was excruciating. But with Susan taking care of Christie, C was at least free to be a teenager, go to school, and one day start a life of her own.

Once she was in her mid-twenties, building a career, that might have been it — her mother’s tragic illness, a difficult childhood, and a safe landing with her father. Then her family learned about FTD. While others, especially her older relatives, lined up for genetic testing, she, like Barb, froze in place, deciding she didn’t want to know. She wanted to give herself time. “I was like, ‘If I find out I have this now, I won’t have any motivation,’” she said. “I won’t have any desire to move on.”

She makes a deal with herself: she will be tested in five years, when she turns 30. For her, the decision to delay knowledge was less like denial than a play of personal agency, of controlling something over which she has no control. During those five years, Si worked hard not to think about the family’s condition—to move on as if he wasn’t there. Pretending was less bearable for her than it was for Barb, when her mother’s example was always present, right in front of her, living in full-time care, losing her ability to speak, and losing herself.

When reached S. 30, she had a boyfriend, a serious friend, whom she told about her risk of FTD once they started dating several years ago. Now they are engaged. She sets out on her plan to find out the truth. “I wanted him to have the option to opt out if he didn’t want to deal with me,” she said.