The Vanishing Family

Today, C. is protecting of her father. “He tried to get her help,” she mentioned. “He had reached out to my grandfather, my mom’s dad, and said: ‘Something’s wrong with Christy. Something’s changing.’ And he just brushed it off.” She is equally protecting of her personal privateness. (She talked about — and several other others within the household informed me this — that two of her aunts misplaced their jobs after talking overtly about their household’s sickness.) She can be charitable towards Christy. “I do remember her being a wonderful person, just fun and active,” she mentioned. But these happier reminiscences appear much less accessible to C. now, overshadowed by every thing that occurred after the illness took over.

During her teenage years, she watched from a distance as her aunt Susan dealt with a bunch of challenges. Christy owed the I.R.S. $10,000 in again taxes. Christy ballooned to 250 kilos, till Susan lastly padlocked the fridge. Once, Christy bolted from the mall on a procuring journey and wandered 5 miles within the chilly and rain to a Wendy’s, the place the police had been referred to as and acquired her dinner. Susan was in tears when she caught up together with her, however Christy was positive — unfazed, even cheerful. During C.’s visits, she may see for herself her mom’s mysterious, virtually random new persona. Once, in entrance of C.’s boyfriend, Christy requested C. whether or not she was sleeping with David Hasselhoff, the star of “Baywatch,” Christy’s favourite present on the time. Watching her mom grow to be so unrecognizable was excruciating. But with Susan taking care of Christy, C. was not less than free to be an adolescent, to go to highschool, to at some point begin a lifetime of her personal.

Once she was in her mid-20s, constructing a profession, that may have been that — her mom’s tragic illness, a tough childhood, a secure touchdown together with her father. Then her household discovered about FTD. While others, notably her older relations, lined up for genetic assessments, she, like Barb, froze in place, deciding that she didn’t wish to know. She needed to offer herself time. “I was just like, ‘If I find out I have this right now, I’m not going to have any motivation,’” she mentioned. “ ‘I’m not going to have any desire to move forward.’”

She made a cut price with herself: She could be examined in 5 years, when she turned 30. For her, the choice to delay figuring out felt much less like denial than a play for private company, for management over one thing she had no management over. For these 5 years, C. labored onerous not to consider the household’s situation — to maneuver ahead as if it wasn’t there. Pretending was even much less potential for her than for Barb, when the instance of her personal mom was all the time current, instantly in entrance of her, dwelling with full-time care, dropping her potential to talk, dropping herself.

When C. turned 30, she had a boyfriend, a critical one, whom she informed concerning the danger of FTD virtually as quickly as they began relationship a number of years earlier. Now they had been engaged. She went via together with her plan to seek out out the reality. “I wanted him to have the choice to opt out if he didn’t want to deal with me,” she mentioned.