Today, C. protects his father. “He tried to get her help,” he said. “He contacted my grandfather, my mother’s father, and said: ‘There is something wrong with Christy. Something is changing.’ And she just gave it up.” She’s equally protective of her own privacy. (She noted — 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 was also kind to Christy. “I remember her being a wonderful person, happy and active,” she says. But those happier memories don’t seem accessible to C. now, overshadowed by everything that’s happened. after illness.
During his teenage years, he watched from afar as his aunt Susan handled many challenges. Christy owes the IRS $10,000 in back taxes. Christy ballooned to 250 pounds, until Susan finally padlocked the refrigerator. Once, Christy escaped from the mall on a shopping trip and wandered five miles in the cold and rain to a Wendy’s, where the police were called and they bought her dinner. Susan was in tears when she caught up with her, but Christy was fine — calm, even cheerful. During C.’s visits, he sees firsthand his mother’s mysterious, almost random new personality. Once, in front of C.’s boyfriend, Christy asked C. if she was with David Hasselhoff, the star of “Baywatch,” Christy’s favorite show at the time. Watching his mother become unrecognizable was painful. But with Susan taking care of Christy, C. is free to be a teenager, go to school, to one day start a life of her own.
Once he was in his mid-20s, building a career, it could have been that – his mother’s tragic illness, a difficult childhood, a safe landing with his father. Then her family learned 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. He wants to give himself time. “I was like, ‘If I found out I had this now, I wouldn’t have any motivation,'” she said. “ ‘I will not have any desire to advance.’”
He made a deal with himself: He would be tested in five years, when he turned 30. For him, the decision to postpone knowing was less like a denial than a game for personal freedom, for control over something he had no control over. During those five years, C. worked hard not to think about the family situation — to move forward as if nothing had happened. Pretending is even more impossible for her than it is for Barb, when the example of her own mother is always there, directly in front of her, living with full-time care, losing her ability to speak, losing herself.
When C. was 30 years old, she had a boyfriend, a serious one, who she told about the risk of FTD almost as soon as they started dating a few years ago. Now they are engaged. He continued his plan to find out the truth. “I want him to have the option to opt out if he doesn’t want to deal with me,” he said.