This is an unbelievably poignant story about what it’s like to learn that your nervous system is fated to self-destruct. Katherine Moser, a 25 year old occupational therapist, decided to take a genetic test that would tell her whether she carried the gene for Huntington’s disease:
The test, the counselor said, had come back positive.
Katharine Moser inhaled sharply. She thought she was as ready as anyone could be to face her genetic destiny. She had attended a genetic counseling session and visited a psychiatrist, as required by the clinic. She had undergone the recommended neurological exam. And yet, she realized in that moment, she had never expected to hear those words.
“What do I do now?” Ms. Moser asked.
“What do you want to do?” the counselor replied.
“Cry,” she said quietly.
Huntington’s is biological determinism in its purest, cruelest form. One of the interesting subplots of the article is that young people at risk for Huntington’s seem to be more willing to undergo genetic testing than previous generations. (Katherine’s mother, for instance, has refused to get tested. The test has been around since 1993.) I wonder why that is. And I also wonder if I would have the courage to get the test. Knowledge can be such an awful thing.