But at night, crying herself to sleep in the dark of her lavender bedroom, she would go over and over it. But Ms. Moser bristled at the idea that she should have to remain ignorant about her genetic status to avoid discrimination.
And the information, she was cautioned, could make it harder for her to get a job or health insurance.
She had more repeats than her grandfather, whose first symptoms — loss of short-term memory, mood swings and a constant ticking noise he made with his mouth — surfaced when he turned But it was another year before Ms.
Moser would realize that she could have less than 12 years until she showed symptoms. She never, she said, regretted being tested.
Save citation to file
Still, in college, Ms. Moser often trolled the Web for information about it. She was the same, but she was also different. Some people battle depression after they test positive. Once, staying in Ms. Another time, he came into the kitchen naked, his underpants on his head.
The staff at Columbia urged Ms. Moser to consider the downside of genetic testing. She moved to Queens without giving her mother her new address. She had attended a genetic counseling session and visited a psychiatrist, as required by the clinic. In the weeks before getting the testMs. Moser gave Ms. Elio explicit instructions about acceptable responses.
And she did not want to know. As awful as it was, she admitted to Ms. Elio, her freshman-year neighbor at Elizabethtown College in Pennsylvania, she almost hoped it was true. Facing their genetic heritage, they say, will help them decide how to live their lives. The gene that will kill Ms. But the greater the of repeats, the earlier symptoms tend to appear and the faster they progress.
It was there, in a conversation with another staff member, that she learned she could be tested for only a few hundred dollars at the Columbia clinic across town. But increasingly she was haunted, too, by the suspicion that her mother did. More informed about the genetics of the disease than any generation, they are convinced that they would rather know how many healthy years they have left than wake up one day to find the illness upon them.
When Ms. Moser graduated in with a degree in occupational therapy, their relationship, never peaceful, was getting worse. Moser grew up in Connecticut, part of a large Irish Catholic family. Moser learned.
Sometimes, she raged. But when Ms. Moser announced as a teenager that she wanted to get tested one day, her mother insisted that she should not. Before the test, Ms. Moser made two lists of life goals. The test, Ms. Moser remembers her mother suggesting, would cost thousands of dollars.
Moser was But most young adults who know the disease runs in their family have avoided the DNA test that can tell whether they will get it, preferring the torture — and hope — of not knowing. They are confident that new reproductive technologies can allow them to have children without transmitting the disease and are eager to be first in line should a treatment become available. If she was negative, flowers were O. If positive, they were not.
Immediately after getting herMs. Moser was too busy making plans. InMr. But a year or so later, when Ms. Moser was left to confirm for herself, through library books and a CD-ROM encyclopedia, that she and her brothers, her mother, her aunts, an uncle and cousins could all face the same fate. When the children giggled, Ms. But no one explained what had happened to their grandfather, Thomas Dowd, a former New York City police officer who once had dreams of retiring to Florida.
Opening a bed-and-breakfast, a goal since childhood, made both lists. Her mother, who asked not to be identified by name for fear of discrimination, had not always been so guarded. You make the decision to test, you have to live with the consequences.
Out of school, Ms. She knew it was meant for her. Elio, her straight brown hair pulled into a determined bun. Not a problem, Ms. Moser responded, gesturing to her curvy frame. She threw herself into fund-raising in the hopes that someone would find a cure. Mostly, she imagined how sweet it would be to know she did not have the gene.
Few people know what it is. Katharine Moser inhaled sharply.
Yet even as a raft of new DNA tests are revealing predispositions to all kinds of conditions, including breast cancer, depression and dementia, little is known about what it is like to live with such knowledge. She had undergone the recommended neurological exam.
Moser is still part of a distinct minority. And there was nothing she could do. She thought she was as ready as anyone could be to face her genetic destiny. In the tumultuous months that followed, Ms. Moser often found herself unable to remember what normal had once been. Moser recalls replying. But her efforts to raise awareness soon foundered. Balance, in that case, would be important. She scheduled an appointment for the next week.
In either case, drinking was acceptable. Her best friend, Colleen Elio, seated next to her, had already begun.
On that drizzly spring morning two years ago, Ms. Moser was feeling her way, with perhaps the most definitive and disturbing verdict genetic testing has to offer. She forced herself to renounce the crush she had long nursed on a certain firefighter, sure that marriage was no longer an option for her. Perhaps, Ms. Moser suggested to Ms. Elio, she meant one in each hand. If her daughter carried the gene, that meant she did, too. No more than two drinks at a time. And yet, she realized in that moment, she had never expected to hear those words.