Today, C. is protective of her father. “He tried to get help from him,” she said. She “She came up to my grandfather, my mom’s dad, and said, ‘Something’s wrong with Christy. Something is changing. And he just ignored it.” She is equally protective of her own privacy. (She mentioned, and several others in the family told me this, that two of her aunts lost her jobs after speaking openly about her family’s illness.) She is also charitable towards Christy. “I remember her as a wonderful person, just fun and active,” she said. But those happier memories seem less accessible to C. now, clouded by everything that happened after the disease took over.
During her teenage years, she watched from a distance as her Aunt Susan handled a series of challenges. Christy owed the IRS $10,000 in back taxes. Christy gained 250 pounds, until Susan finally closed the refrigerator. Once, Christy bolted out of the mall on a shopping trip and walked five miles in the cold and rain to a Wendy’s, where the police were called and bought her dinner. Susan was crying when she reached her, but Christy was fine, unruffled, even cheerful. During C.’s visits, she was able to see for herself the mysterious, almost random, new personality of her mother. Once, in front of C.’s boyfriend, Christy asked C. if she was sleeping with David Hasselhoff, the star of “Baywatch,” Christy’s favorite show at the time. Seeing her mother become so unrecognizable was unbearable. But with Susan taking care of Christy, C. at least was free to be a teenager, to go to school, to someday start a life of her own.
Once she was in her early 20s, building a career, that might have been it: her mother’s tragic illness, a difficult childhood, a safe landing with her father. Then his family found out about FTD. As others, particularly her older relatives, lined up for genetic testing, she, like Barb, stood by and decided she didn’t want to know anything. She wanted to take time. “I was like, ‘If I find out I have this right now, I’m not going to have any motivation,’” she said. “‘I’m not going to have any desire to go on.'”
She made a deal with herself: she would get tested in five years, when she turned 30. For her, the decision to delay learning felt less like denial than a move of personal agency, of control over something she had no control over. During those five years, C. she worked hard not to think about the condition of her family, to carry on as if she were not there. Pretending was even less possible for her than it was for Barb, when the example of her own mother was always there, right in front of her, living in full-time care, losing the ability to talk about her, losing herself.
By the time C. turned 30, she had a boyfriend, a serious one, whom she told about the risk of DFT almost as soon as they started dating several years earlier. Now they were engaged. She went ahead with her plan to discover the truth. “I wanted him to have the option to opt out if he didn’t want to deal with me,” she said.