In Quest for Death, ALS Sufferer Finds a Reason to Live

BOSTON â€”  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.

He endowed a scholarship in his name at his alma mater, Southern Mississippi University. He established a trust there so Brian could go back for his degree. Nelson Pritchett was making things right.

In November, Nelson and Eric went on a Mediterranean cruise together. By now, Nelson needed his son’s help getting dressed. When they got back, Nelson’s queen-sized bed was replaced with an adjustable hospital bed. They ordered a motorized wheelchair.

Nelson fought hiring a home health aide, then relented. But he refused to join a support group, insisting he didn’t need support.

In the summer of 2001, Nelson traveled to Georgia to pick out his tombstone. His ashes would be buried in a family plot in the small town of Edison. The inscription chiseled into his marker would be: “Thanks for stopping by.�

Nelson also got in touch with the Hemlock Society, the country’s oldest right-to-die group. The group promises that if someone wants to commit suicide, he or she will not die alone.

Nelson had read, “Tuesdays With Morrie,� the best-selling book about the final year of life of a Lou Gehrig’s patient. He wouldn’t allow himself to end up like Morrie, racked by coughing fits and barely able to speak or move. The book was sugarcoated, Pritchett thought, cloaking pain and humiliation in homilies and life lessons.

“He died a miserable, suffering death,� Nelson said.

So he studied “Final Exit,� the Hemlock Society’s how-to-die guide, underlining paragraphs on suffocating with a plastic bag. He pored over articles on starvation and dehydration and learned that it could be over in as little as three days.

Nelson dismissed moral objections to suicide. He grew up in church but was cynical about organized religion. He labeled religious leaders “soothsayers.� Still, he insisted he believed in God and Jesus.

In November, he told Leo Johnson, a Hemlock volunteer who visited weekly, that he had made his peace. He was ready to go.

About that time, U.S. Atty. Gen. John Ashcroft issued a directive threatening doctors who prescribed lethal doses of federally controlled drugs with loss of their licenses. He was targeting Oregon, the only state that permits assisted suicide. But it was also a warning to other states.

Oregon challenged the measure, and a judge granted a temporary restraining order. He scheduled a ruling for spring. Hemlock mobilized for battle. Pritchett realized he could help. Hemlock board members eagerly took him on.

He would have to postpone his death, Pritchett told Johnson. He had things to do now.

In late November, Nelson flew to Washington for a news conference at the National Press Club. Addressing reporters, his quavering Southern drawl sounded mournful.

“The last time I was in Washington was in 1994 for the Marine Corps marathon, one of 21 marathons I’ve run,� he said. “Now I can’t hardly do anything. . . . I’m totally dependent on others.�

When the time came, he would starve himself, he said. “That’s not a good way to go, I’m told, but I have no choice.�

As he gathered momentum, he became angrier. “Hell, I don’t want to die,� he said, eyes flashing. “I’m normal.� He lectured that his choice shouldn’t be called suicide.

“Suicide is when a perfectly healthy person does a dumb thing,� he said. “All I’m wanting is a way out, dying in a way that gives me some choice. . . . It’s not a suicide. I’m already dying.�

Hemlock ran ads in the Sunday New York Times, featuring a photo of him with the headline: “I Am Dying: Either I will decide how I die or someone will decide for me.�

Back in Boston, Nelson was now confined to his bedroom. He weighed less than 120 pounds, compared with his former running weight of 165. It took all his strength to lean over and suck juice through a straw.

As the second Christmas after his diagnosis approached, friends had to open his greeting cards and hold them for him to read. They wondered when he would carry out his plan.

Not yet, he told Johnson, his Hemlock volunteer. He wanted one last Christmas.

Death Decides

December came and went. One day, watching himself talk about suicide in a Hemlock Society video, Nelson stifled a sob.

In January, Nelson’s trips to the bathroom were carefully planned around when people would be there to help. To bathe, he lay flat on his back in bed as his health aide, Nories Giraldi, cleaned him.

The man who so valued control had lost most of it, but Pritchett had been undergoing a change. His standards for what he could tolerate had been raised, he acknowledged.

Eric noticed. “The human animal is the most adaptable thing,� he said. “Things you consider as unacceptable quality of life before become normal and fine.�

Nelson’s advocacy for the right to die had given his life a new purpose, said Elaine McMillen, a Hemlock volunteer and friend. “The PR stuff is his reason for continuing,� she said. “He wants people to know.�

Nelson remained jovial during visits by his aide. When she helped him from his chair to the bed, he would lift his feet and sway back with her, calling out, “Nories, we’re dancing!�

He talked for hours with visitors, lecturing and badgering.

In mid-January, he entertained a visitor for two days with his stories and thoughts. He still had a lot of life left to live, he confided.

“Why should I go now?� he said. “I don’t want to check out early.�

On Jan. 20, Nelson spent the day watching a Steve Spurrier Florida Gator highlight marathon on ESPN. He marveled at the beauty of the snow outside his window. In the evening, he had dinner with Eric.

As it got later, Eric left to meet some friends. Nelson went to bed.

The next morning, Eric entered his father’s room to empty his urine bottles and set out his toothbrush and shaver. His father’s face was obscured by the pillow.

Eric rolled him over. His skin felt cold.

In the end, Nelson Pritchett had neither the death that he planned nor the one that he feared.

He went peacefully in his sleep.

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On the Net:

ALS Assn., a group dedicated to fighting Lou Gehrig’s disease: www.alsa.org/

Hemlock Society, the nation’s oldest right-to-die organization: www.hemlock.org/

National Hospice and Palliative Care Organization, a group opposed to assisted suicide and devoted to quality care for the terminally ill: www.nhpco.org/