BOSTON — Nelson Pritchett's death sentence came in the form of a question.
"You've heard of Lou Gehrig's disease?" the doctor said.
Pritchett had gone to the doctor that December day in 1999 for what he thought was a pinched nerve. Suddenly, at age 57, he had two years to live.
Driving home, he felt oddly detached as he squinted through the windshield into the bright Florida sun. It occurred to him that he would need to sell his house, that he should inform his sons.
That night, in his bed in Gainesville, Fla., Pritchett lay awake. He wasn't afraid to die, he said later, but dying this way scared him. Beginning with his arms and legs, then moving ever inward, the neurological disease would gradually paralyze him. The retired air traffic controller would lose control of his own body. He would become completely helpless. He would die gasping for breath.
He vowed to end it before it got to that point. Death was inevitable, Pritchett said, but suffering should be optional.
Later, in the advanced stages of his illness, Pritchett would take his case to the nation. He would become the face of the right-to-die movement. That's when something happened that he never expected.
In his fight for the right to die, Nelson Pritchett found a reason to live.
Reconciling With Sons
The day after the doctor's visit, Pritchett called his youngest son, Eric. He had some "important news," he said, and asked him to arrange a conference call with his other son, Brian.
In Boston, Eric and Brian Pritchett wondered what was going on. The news couldn't be about his health, they thought. Their father was a fitness fanatic, had even run marathons. Maybe he was getting married for a third time.
When Nelson got on the phone with his sons, he struggled to compose himself.
"I have Lou Gehrig's," he managed to blurt out.
For more than a decade, his relationship with his sons had been strained. They talked only occasionally. But now, in this crisis, Brian and Eric resolved to try to put old resentments behind them. Father and sons made plans to spend Christmas together, something they hadn't done in years.
But the 10-day vacation turned out to be tense. Nelson was emotional, often breaking down. He also proved to be the same stubborn man they remembered from their youth, Eric later said. Being diagnosed with a terminal illness doesn't bring an overnight change in a man who has spent a lifetime doing things his way.
The day before Eric was to return to Boston, the Pritchetts sat down to discuss their father's options. At the kitchen table, they mapped out scenarios. Everything, from marrying someone who could care for him in exchange for his pension to moving into a nursing home, made the list.
Nelson was adamant about not going to a nursing home. He expressed interest in moving to Boston to live with Eric.
Eric, 27, struggled with his reluctance. "Look at the empirical evidence," he later said. "He is an extremely difficult person to live with."
So Eric laid down ground rules. He'd do what he could, but he wouldn't sacrifice his business career to become a full-time caregiver. Nelson would need to arrange for help from health aides and support groups. Brian, 28, who worked as a waiter and was battling his own problems, would pitch in with emotional support and errands.
Nelson set about wrapping up his affairs in Gainesville. He also started speaking out on physician-assisted suicide in his local paper. A columnist visited and did a series of stories on him.
Before his diagnosis, Pritchett's passion was running. He had jogged 30 miles a week and had run in races in Gainesville, Boston, New York, Honolulu. He decided to make one last run, a 5K in his hometown. This would be his farewell to the sport.
He'd been running only a few minutes when he tripped and fell to the pavement, scraping his knees and arms. Moments later, he pitched forward and scraped his face. He walked the rest of the way, a bloody mess, supported by friends.
Over the next few months, even his walk became unsteady. He could lift his arms only with great effort.
Eric found a two-bedroom apartment in a high-rise near Boston College, and in August, his father moved in. It was awkward, after all these years. The needs of a terminally ill man didn't always go well with a 20-something trying to have a social life. Inevitably, they clashed. At times, both would regret the arrangement.
In a spiral-bound notebook, Nelson started writing a book for the grandchildren he would never see. "This could very well be my obituary," he scrawled on the first page.
He wrote down his memories and his thoughts on life. He pasted in photos and mementos. He named places he'd visited and things he'd done. He made a list of books he wanted his grandchildren to read: "The Power of Myth" by Joseph Campbell; "The Demon Haunted World," a book debunking superstition, by Carl Sagan; "The Fourth Turning," an apocalyptic tome by William Strauss and Neil Howe, a pair of historians.
