Whose Death is it Anyway? Noel David Earley, rapidly paralyzed by Lou Gehrig's disease, is going to kill himself, as soon as he finishes his plea for doctor-assisted suicide.


LINCOLN, R.I. -- The German television crew has left. Ted Koppel may call at any moment. And the nun is late.

Noel David Earley can't remember the nun's name, or where she is from, but she sounded nice on the telephone. He still plans to kill himself -- the nun had no more success talking him out of it than had other callers -- but there was a sweetness about her. When she asked to visit, he agreed.

So everyone's waiting -- a documentary film producer working for "Nightline"; a reporter and photographer from the Providence Journal-Bulletin; a reporter from The Sun.

This has the promise of a good scene. The sweet nun will tell Earley that all life is precious. Earley will ask her to look at him, wasting away in his blue recliner, Lou Gehrig's disease claiming his muscles one nerve cell at a time. God's will, she will say. My choice, he will reply. Yes, this has potential.

But where is she? A slushy snowstorm has swamped Lincoln, a suburb of Providence, so maybe the nun will cancel. The Journal-Bulletin reporter fixes Earley a ham sandwich and cuts it into bite-sized chunks.

A knock on the door. As the nun enters Earley's basement apartment, she sees two cameras pointed at her face.

"Oh, my," she says. "What's this?"

This is drama. This is what happens when the story of a man's life becomes the story of his death. Noel David Earley is on a mission. He believes a doctor should be able to help him end his life. Like most states, Rhode Island prohibits physician-assisted suicide, so Earley says he will kill himself, using an injection of painkillers and barbiturates before the disease leaves him too weak.

He had a day picked -- Dec. 4 -- but changed his mind because he could still talk. As long as he can communicate, as long as the reporters appear at his door, he says he can keep the right-to-die debate alive and help other terminally ill patients.

The nun has other ideas. No interviews, she says. No recordings. No photos.

"This is a private meeting between me and Mr. Earley," she says sweetly but firmly.

The poor dear, she doesn't understand. Nothing about Noel Earley's life -- especially not his death -- is private anymore. He has become a symbol. He has willingly, eagerly invited the world to his death bed.

This is dignity?

"Absolutely," he says.

Earley was reaching for the Mariner's Dictionary to look up the word "bowsprit" when he noticed that he couldn't stand on his tiptoes. The diagnosis came a few weeks later: amyotrophic lateral sclerosis, ALS, better known as Lou Gehrig's disease.

That was in the spring of 1995, and Earley headed to the medical library. So typical, friends say. Earley has a voracious curiosity and wide-ranging interests; he has worked as a chef, mechanic and carpenter, among other jobs.

What he discovered in his research was bleak. The disease is progressive, relentless, fatal. The body's muscles die slowly, eventually leaving patients gasping for breath. He says he is in no pain, but he struggles to speak.

"You can hear how weak my voice is," Earley says. "I only have a few more weeks of voice."

He rests in the blue recliner, a pink blanket covering his thin legs. Earley is 47, but looks older; the disease has done its work with stunning dispatch. Quickly he regressed from a cane, to a walker, to a wheelchair.

Now his world has been reduced to whatever he can reach with his right hand from the blue recliner in his five-room basement apartment. Everything else -- his legs, his left arm and hand -- is atrophied, shrunken, useless.

Earley describes the "wonderfully fascinating" way his muscles have died. The nerve bundles in each muscle twitched and quivered. "There were evenings when the top of my legs shook like the surface of an angry sea," he says.

"You can see it in his arm right now," says a friend, Fran Ross, who is visiting from Boston.

The muscles in Earley's upper right arm, the one he can still use, twitch uncontrollably, signaling their inevitable decline. As Earley looks at the twitching arm, his blue eyes are filled with wonder, not dread.

This, too, is typical, friends say. Earley loves adventures and discovering new things, they say. He has traveled to Europe, the South Pacific, Hong Kong. He speaks Vietnamese (he is a veteran of the war), Spanish, French. His passions were physical -- sailing, tennis, squash, racquetball, carpentry, Ping-Pong.

"You could find an adventure in a cereal box," Ross tells him.

Earley pretends to swing a tennis racket with his right arm.

Does he miss it?

"I've accepted my limitations," he says. "If you've played enough tennis, you don't need to play it again.

"A long time ago I decided not to worry about the things I couldn't impact. Consequently, I don't worry about having ALS."

He has a remote control to maneuver the chair. A pack of Merit cigarettes sits on the blanket, but Earley must light them using a nearby candle's flame because his hand can no longer snap a lighter.

"I'm not worried about lung cancer," is a favorite one-liner.

He extinguishes the cigarettes by dumping them into a wide-mouth V-8 bottle half filled with dead butts and water. There are medical contraptions nearby -- oxygen in case he encounters respiratory distress and a suction device in case he chokes -- and two plastic urinals within reach.

"It's cumbersome," he says. "The loss of dignity is a salient point. A friend has to come take me to the bathroom. It's not really dignified. Somebody washes me."

He has gone from 250 to 140 pounds. He eats solid food, but has little appetite. Liquids are pumped into his stomach through a tube. He has trouble swallowing water; it tends to go to his lungs.

A friend carries him from the bed to the chair every morning. Another friend returns him at night.

He knows this from his research: "When I lose my voice, I will have five days or less before the breathing problems come. I will be gasping for breath 24 hours a day. I'm not going there."

The twitching in his arm, the raspiness in his voice, are more than symptoms. They are the ticks of a clock.

"I won't let the disease go beyond my ability to take my own life," he says.

Dying with dignity

Earley says he reached the decision to kill himself with little emotional torment.

His parents are dead. He has a brother, "but we don't get along that well." He is divorced and childless.

He says he was raised primarily by a grandmother in Port Jefferson, N.Y., and consequently spent much time with the elderly as a youth.

"When someone gets to be 70 or 80, they tend to have more wise thoughts about death and dying," he says. "All my life I've been aware of the need to die with dignity."

Another experience bolstered his beliefs. He recently operated a company in Cambridge, Mass., that provided day-care services for Alzheimer's patients. That disease, he notes, is the opposite of Lou Gehrig's disease -- it destroys the mind but not the body. He watched as patients slowly withered away, just as he is doing now.

"It reconfirmed my sense of the right to die," he says.

A person can believe in the right to die, or even in the right of a doctor to assist someone's suicide. A person with a terminally ill disease may, in fact, decide to kill himself. What separates Earley is his decision to put his life -- and death -- on such public display.

"It doesn't surprise me in the least that he'd do something like this," says Steven Ames of Old Lyme, Conn., Earley's best friend. "He loves to talk. He has a brilliant mind."

Fran Ross was engaged to Earley years ago; they were reunited for the first time in eight years after someone sent her a newspaper clipping about him.

"Noel's always been outspoken on anything that's near to his heart," she says.

So Earley went public. He contacted the Providence Journal-Bulletin, which wrote a story about him. He contacted a Rhode Island state senator, who introduced a bill in the general assembly to make physician-assisted suicide legal. He contacted a lawyer with the American Civil Liberties Union.

He testified before a legislative committee. He spoke before the Rhode Island Medical Society. When a Journal-Bulletin photographer asked to document Earley's decline, he agreed. When a documentary film producer, whose work appears on "Nightline," asked to do the same, he agreed.

Earley says it is "a combination of things" that motivates him, but he thinks most often of a friend who suffers paralyzing pain from bone cancer.

"She's an older woman who never did a bad thing in her life, who cannot lay down or sit down. She has no resources to end her pain.

"She's the one I work for and the thousands of people like her. I'm just giving them a voice."

If nothing else, he says, "everyone in Rhode Island is now discussing the issue."

Of course, they also are discussing Noel David Earley.

"He likes the publicity," says Bob Zuck, a friend. "It's the one thing he's doing on the way out. He's going to the max."

The opposite results

When the time comes, Earley says, he will inject himself with morphine and Demerol and take an overdose of Tylenol, "to kill my liver in case somebody breaks down the door and tries to revive me."

This is not entirely melodramatic. The bill Earley supported to make physician-assisted suicide legal in Rhode Island failed to get a single vote in committee. Instead, the legislators approved -- and the governor signed into law -- a bill banning assisted suicide. Anyone who helps Earley faces 10 years in prison and a $10,000 fine. Earley and the ACLU are discussing a court challenge.

Next month, challenges to two assisted suicide laws will reach the U.S. Supreme Court. The court is being asked to reinstate laws in New York and Washington that prohibited doctors from helping patients commit suicide.

Earley recently sent a letter to the justices:

"Because of Rhode Island's current unconstitutional law, I am forced to take my life in a clandestine and difficult way. I wish that it were not so. If I had the assurance that at sometime in the future a doctor whose skill and knowledge would be appropriate might come to my aid in my misery, if that were so I would consider living with a ventilator and other equipment that would preserve me for a few years. My premature demise is a result of the narrowness of the law."

In Rhode Island, Jeffrey Pine, the attorney general, says he will prosecute anyone who helps Earley kill himself.

Earley declines to identify the "health professional" who told him how to commit suicide and provided the syringe. He only says the person "has a personal story of watching a loved one die."

Rhode Island law gives the attorney general the power to seek an injunction against any person "reasonably believed" in violation of the law. If that's the case, why not raid Earley's apartment and confiscate the drugs he plans to use?

A spokesman for Pine wouldn't comment on what authorities might do.

Earley has invited two people to witness his suicide -- the Journal-Bulletin photographer and the documentary producer. The Journal-Bulletin plans to publish a special section after Earley's death, while "Nightline" may devote one or more shows to him.

But Joel Rawson, the Providence paper's editor, says he and publisher Stephen Hamblett have decided not to allow the photographer to watch. Rawson says ethical considerations outweigh legal concerns.

"Your first instinct is to be there," he says. "Well, what is your first duty? Could we live with ourselves if we thought our presence influenced his decision? You would never know."

To which Earley responds: "Baloney."

But his friends are less certain about Earley's new role. He is not a symbol to them; he is their friend.

"This whole thing has become a circus and I no longer wish to participate in it anymore," Ames says. "If Noel wants to participate in it, that's his business.

"His friends, all of them, say, 'You've got to do something about this.' I can't do anything about it."

The problem, Ross says, is that "there's a point at which you start to think they're not respecting the human being. That's upsetting."

Earley has a girlfriend who has steadfastly refused to be interviewed, filmed, photographed or otherwise drawn into the story.

"She's in denial," Earley says.

Many calls

The phone rings constantly. A television show called "Extra" wants to come. Earley says fine. Somebody from Yakima, Wash., is calling. He chats pleasantly. Another reporter calls. Put him on.

When Earley's story was dispatched via the Associated Press news service, a member of a church in Georgia called and said the congregation was praying for Earley and that God had told him to call. A Missouri man wanted to drive Earley to a revival in Florida; he said God had told him to call.

"Obviously, this means God works for NYNEX," the New York telephone company, Earley jokes.

He knows that his decision to commit suicide touches on the deepest religious beliefs of many people. He listens to their arguments patiently. The only time he came close to changing his mind was when a woman suggested he agree to stay alive if people would send him money for medical research.

"I could blackmail all the religious people," he says.

Then he shakes his head no.

"I suggest that they read the Koran and the Gida and the Talmud and the other good books that offer an interpretation of God. There are venues which say my position is valid."

The meeting with the nun goes well. She stubbornly refuses to give in: No interviews. Just as stubbornly, Earley refuses to change his mind and she leaves.

"Go see my coffin," Earley says.

In his bedroom, perched against a wall, is a simple pine coffin, like one you'd see in a Western movie. Earley designed it himself and had a cabinetmaker build it. "Cost less than a thousand bucks," he says proudly.

He would like to make it until Christmas. He was born on Christmas Day in 1948. That's why his parents named him Noel.

"Don't think I'm going to get there," he says. His voice is low and raspy and getting weaker. Soon not even the microphones will hear him.

Pub Date: 12/16/96

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