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Today, C. protects his father. “He tried to get her help,” she said. “He had contacted my grandfather, my mother’s father, and said, ‘Something is wrong with Christy. Something is changing. And he just brushed it off. She’s also protective of her own private life.(She mentioned – and several other family members told me – that two of her aunts lost their jobs after speaking openly about their family’s illness.) She is also charitable towards Christy “I remember she was 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 that. the disease took over.
During her teenage years, she watched her Aunt Susan face many challenges from afar. Christy owed the IRS $10,000 in back taxes. Christy ballooned to 250 pounds, until Susan finally padlocked the fridge. Once, Christy ran away from the mall to go shopping and walked five miles in the cold and rain to a Wendy’s, where the police were called and bought her dinner. Susan was in tears when she caught up with her, but Christy was fine – unfazed, 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 his mother become so unrecognizable was excruciating. But with Susan taking care of Christy, C. was at least free to be a teenager, to go to school, to one day start her own life.
Once she was in her mid-twenties, building a career, it could have been this – her mother’s tragic illness, a difficult childhood, a safe landing with her father. Then his family heard about FTD. As 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 just like, ‘If I find out I have this right now, I won’t have any motivation,'” she said. ” ‘I will have no desire to move forward.'”
She made a deal with herself: she would be tested in five years, at the age of 30. For her, the decision to delay knowing felt less like denial and more like a personal play, for control of something she had no control over. During those five years, C. worked hard not to think about the state of the family – to move on as if she weren’t there. Pretending was even less possible for her than for Barb, when her own mother’s example was always present, directly in front of her, living with full-time care, losing her ability to speak, losing herself.
When C. was 30, she had a serious boyfriend whom she told about the risk of FTD almost as soon as they started dating several years earlier. Now they were engaged. She went through with her plan to find out the truth. “I wanted him to have the choice to walk away if he didn’t want to deal with me,” she said.
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