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.

December 16, 1996|By Ken Fuson | Ken Fuson,SUN STAFF

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.

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