The Vanishing Family – The New York Times

Mr. C is currently protecting his father. “He tried to ask her for her help,” she said. “He called my grandfather, my mother’s father, and said, ‘There’s something wrong with Christie. Something’s changing.’ And he brushed it off. ” She protects her privacy as well. (She said two of her aunts lost their jobs because they spoke openly about her family’s illness–and several others in the family told me this–.) She is also charitable towards Christie. “I remember her being a great person and she was just fun and active,” she said. However, with all the events that followed the outbreak of the disease, those happy memories now seem to be less accessible to Mr. C.

As a teenager, she watched her Aunt Susan deal with various difficulties from afar. Christie had paid her $10,000 in unpaid taxes to the IRS. Her Christie her weight ballooned to 250 pounds and finally Susan put her padlock on her refrigerator. One time, Christie ran out of the mall and wandered five miles in the cold and rain to Wendy’s, where she was called by the police and bought her dinner. She was in tears when Susan caught up with her, but Christie was fine, she was unfazed, rather hilarious. During her visit to her hometown, she was able to see with her own eyes the mysterious, almost random new persona of her mother. On one occasion, in the presence of C’s boyfriend, Christie asked C if she was sleeping with David Hasselhoff, the star of Christie’s favorite show at the time, “Baywatch.” It was excruciating to see her mother fade into oblivion to her. But with Susan looking after Christy, C was at least free to be a teenager, go to school, and someday start her own life.

As she hit her mid-twenties and built a career, it may have been her mother’s tragic illness, a difficult childhood, and a safe landing with her father. Later her family found out about her FTD. While others, especially her older relatives, stood in line for genetic testing, she, like Barb, froze on the spot and decided she didn’t want to know. She wanted to give herself time. “I thought, ‘She’s going to be demotivated if she finds out she’s got this now,'” she said. “‘I lose the desire to move forward'”

She made a deal with herself. Five years later, when she turned 30, she was to be tested. For her, her decision to put off her knowing was less a denial of hers than a play on her personal agency, a play to control what she could not control. felt. During those five years, Ms. C. worked hard not to think about her family’s condition and to move on as if her family’s condition never existed. Pretending to be her was even more impossible for her than for Barb. The example of her own mother was always present before her eyes, where she lived in full-time care, lost her ability to speak, and lost herself.

When Ms. C. turned 30, she had a serious boyfriend, but when they started dating a few years ago, she immediately talked about the risks of FTD. Now they are engaged. She enacted a plan to find out the truth. “She wanted to give him the option to opt out if he didn’t want to get involved with me,” she said.

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