Today, C. is protective of her father. “He was trying to get her help,” she said. “He contacted my grandfather, my mom’s dad, and said, ‘Something’s wrong with Christy. Something’s changing.’ And he just brushed it off.” She’s just as protective of her own privacy. (She mentioned—and several others in the family told me this—that two of her aunts lost their jobs after speaking openly about their family’s illness.) She’s also kind to Christy.” I remember her being a wonderful person, just fun and active,” she said. But those happier memories seem less accessible to C. now, overshadowed by everything that happened after the disease took over.
During her teenage years, she watched from afar as her aunt Susan dealt with a multitude of challenges. Christy owed the IRS $10,000 in back taxes. Christy ballooned up to 250 pounds, until Susan finally hung the fridge. Once, Christy ran away from the mall while shopping and wandered five miles in the cold and rain to Wendy’s, where the police were called and bought her dinner. Susan was in tears when she reached her, but Christy was fine – easygoing, even cheerful. During C.’s visits, she could see for herself the mysterious, almost accidental new personality of her mother. Once, in front of C.’s boyfriend, Christy asked C. if she was having sex with David Hasselhoff, the star of “Baywatch,” Christy’s favorite show at the time. Watching her mother become so unrecognizable was terrifying. But with Susan taking care of Christy, C. was at least free to be a teenager, to go to school, to one day start a life of her own.
Once she was in her mid-20s, building a career, it might have been that – her mother’s tragic illness, a difficult childhood, a safe landing with her father. Then her family found out about FTD. While others, especially her older relatives, lined up for genetic tests, 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 forward.'”
She made a bargain with herself: She would be tested in five years, when she turned 30. For her, the decision to delay knowing felt less like a denial than a play for personal agency, for control over something she had no control over. During those five years, C. worked hard not to think about the condition of the family – to move forward as if it 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 with full-time care, losing her ability to speak, losing herself.
When C. turned 30, she had a boyfriend, a serious one, whom she had told about the risk of FTD almost as soon as they had started dating several years earlier. Now they were engaged. She continued 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.