SHE MIGHT HAVE SEEN A SHIMMER ON THE WATER, OR SOMETHING ELSE COULD HAVE TRIGGERED HER REACTION. All Dave Kendall knew was that one minute he was sitting in the stern of his fishing boat, steering, during an excursion on the Occoquan Reservoir about a decade ago. The next minute Diana, his wife of more than 20 years, had fallen from her seat near the bow. She was on the floor of the boat, limbs flailing in what looked like a violent seizure.
Diana had had fainting spells before, but doctors had not determined the cause. They didn't this time, either. Yet there were other things that now seemed wrong with Diana: She was having bizarre reactions to music, which made her head hurt so acutely that she would sometimes bolt out of church. One day, she came home from work at Fort Belvoir saying she no longer remembered how to use Excel. Dave, giving her a refresher session, saw that she was losing her focus.
And she was gaining weight. Diana, who had always been trim and active, began eating junk food and sitting for days, crying. Dave took her to more doctors, including a neurologist who said he wanted to run a test for something called Huntington's disease. He didn't tell them much about it -- just that they had better hope the test came back negative.
Dave felt reasonably optimistic while they were waiting for the results. Doing some Internet research, he learned that Huntington's is a hereditary disorder, and they didn't know of anyone in Diana's family who had it. The life the Kendalls had built together -- decades of hard work that had allowed them to leave behind impoverished childhoods in rural Virginia for the middle-class comforts of suburban Washington -- felt secure.
But when they returned to the neurologist on August 6, 2000, they learned that the future wasn't secure at all. The test had come back positive. "This is really bad news, isn't it?" asked Diana, turning to Dave. She was strikingly calm and dry-eyed. It was the beginning of a transformation in her; deterioration, yes, but also acceptance and what can only be described as grace. It was also the moment -- Dave realizes in retrospect -- when she entrusted herself to his care. It was the end of married life as they had known it, the beginning of marriage in an entirely new form. Same contract, radically altered circumstances. "She put her life in my hands," he says.
Diana was 48; Dave was 51. By then, they had been living with a fatal neurodegenerative disease for several years. Parts of Diana's brain were dying, an inexorable process caused by a single abnormal gene, a glitch that affects everything: thought, mood, movement. After
the diagnosis, Dave began keeping a journal to record Diana's rapid decline.
"She was unable to walk in grocery store to complete shopping -- sat on bench," he wrote in December 2001, adding, "I start peeling apples, potatoes, etc., to avoid accidents with knives."
In February 2002: "Walks like a drunk -- falls against wall."
In August 2002: "Cannot find hymn number in book. Leans while sitting."
In October 2003: "Cannot put her shoes on" and "could not get out of chair."
In April 2005: "Could not subtract 6 from 1977."