Cecil Neth Keeps the Lights On

Pneumonia struck Cecil Neth six times during his three months in the hospital in 1987, which is one of the reasons he was so sure last winter that returning to the hospital would kill him. Living at home, he’s had pneumonia only once.

“That one was a real scorcher, however,” he wrote, describing his life as a victim of Lou Gehrig’s disease. “I recall nothing of the entire period except a strange reminiscent dream. In the dream my eight-year-old self was sitting in the rear seat of what could have been my stepfather’s car. He was telling me quietly that I would survive.

“When I was eight, I was seriously ill with a respiratory problem, but there was no cash for a doctor and our credit was bad. My stepfather borrowed two dollars from another oil field worker and bought whiskey. He used part of it to make a strong hot drink for me. I survived both the illness and the whiskey. I am still wrestling with the meaning of the dream.”

Cecil Neth is paralyzed from his nose down. Lying silently in bed at home, he’s fed intravenously. A ventilator handles his breathing. His wife is often uncertain of his mood.

“I’d like Cecil to do a lot more writing,” Jane Neth told us the other day. “It would make his days less dreary. But I’m not positive his days are dreary for him. He never complains. Sometimes he gets really depressed, but he never complains.”

The courage everyone admires so much these days is the courage of the young. In the name of freedom, the young stand in front of tanks. Cecil Neth did that sort of thing when he was young; he was lead bombardier on a B-17. Today he is 66 and only his mind is free. The choice it is free to make is to live or to die.

Cecil was writing editorials for the Sun-Times back in 1985 when he was told he’d acquired amyotrophic lateral sclerosis. Within three months of this diagnosis he was unable to dress himself. The Sun-Times allowed him to move back to Fort Collins, Colorado, where he’d recently taught journalism at the local university; sit in on editorial conferences by way of speaker phone; and file copy by modem. In early 1987 he retired. The paper gave him a big send-off. Friends came in from all over to hail Neth, who sat wanly in a wheelchair. After dinner the writer William Greider, to whom Neth had been a mentor years ago at the Wheaton Journal, stood with one hand gently resting on Neth’s shoulder and told stories.

A few weeks later a tracheotomy was performed, and Cecil was hooked up to his ventilator. He later wrote, “The surgery separated me forever from two of my greatest loves–eating and talking.”

Jane Neth teaches in Fort Collins’s public schools. “He still can think and he still can write,” she told us, “but he gets tired so fast. And he is fearful. And I think in some ways this fearfulness has limited him. He is fearful that when I go to Denver, which is 60 miles away, that he won’t see me again. I think the disease has done that to him. His world is so confined. We got him into a wheelchair at Christmas, and on Labor Day we’ll put him on the patio. But it takes four people to get him out of bed.”

She went on, “We have in our town another woman who was just diagnosed, and he’s been writing to her. He did not write all summer–he had an infection and was too weak. But in the last week or so he’s started writing to her. She’s trying to decide whether to go on life support. He said it’s hard, it’s full of indignities. But he chose life. He doesn’t want the lights to go out–that’s a phrase he uses.”

When Neth was diagnosed he decided to write a book about his disease. But he put off starting and eventually lost the use of his hands. He scaled his ambitions back to a chapter. He asked an ALS patient in Nebraska to contribute a woman’s point of view, his Chicago doctor sent in a medical overview, and other people contributed chapters on hospice care, on the financial effects of the disease, on how families cope.

Marilyn Colter Maxwell, a Fort Collins journalist who once studied under Neth at Colorado State University, is pulling the book together for him. The school will soon publish a limited first edition.

A few weeks ago Lynda Cabela, the woman in Nebraska, entered a hospital to be treated for bedsores. Her lungs collapsed and she died.

In some respects the tale Cabela told for Neth’s book was grimmer than his own.

“She was diagnosed at the Mayo Clinic,” Jane told us. “They essentially said, ‘You have ALS. Go home and die.’ The guy who talked to her had no bedside manner.”

By contrast Neth received compassionate support from Chicago’s Les Turner ALS Foundation, from doctors at Northwestern Memorial Hospital, and from the Sun-Times.

“Lynda didn’t have anything but medicare and medicaid,” Jane Neth told us. “To me one of the saddest things–Lynda couldn’t afford an air bed. Cecil has an amazing bed. It’s an air bed with Goretex covering so that it breathes and he doesn’t get bedsores.”

We wondered how Cecil reacted to his collaborator’s death. “Well, he cried,” his wife said. “And I was just devastated too. She was really a tough lady. She wrote her chapter with her toe.”

Cecil finished writing his with an eyebrow. By raising an eyebrow he throws a switch that controls a cursor on a computer screen in front of him. The cursor brings down letters, common words, and even pet phrases from the top of the screen and adds them to the copy block at the bottom. “You’d think that using your eyebrow to type wouldn’t wear you out,” Jane Neth said. “But it really does take a lot out of him.”

Cecil can live at home with round-the-clock nursing care and an air bed thanks to his wife’s health benefits. But earlier this year he came perilously close to losing them. His medical costs were running the school district $20,000 a month, and the district threatened to stop paying when the tab reached $750,000, which would have happened in March.

Desperately, Jane Neth went looking for an attorney. In a piece of extraordinary luck, she found Thomas McComb Jr., who was both a lawyer and a practicing actuary and even had a good friend with ALS. McComb didn’t charge a penny. He argued that putting Cecil back in a hospital would kill him. The case received heavy sympathetic press coverage in Fort Collins, and the Neths won.

Cecil’s eyebrow wrote on his computer: “Jane did it.”

We called McComb and told him we’d known Neth since our days together at the Sun-Times. “He’s a tenacious son of a bitch,” said the lawyer. “He’s just tougher than hell.”

Last week McComb dropped dead. Again Cecil wept. McComb had saved his life.

“His disease has made his emotions right on the surface,” Jane explained. “He cries when other people would just be sad. It all comes over him.”

Can he also laugh? we asked.

“No, he doesn’t laugh anymore,” she said. “But he can smile. Which is great.”

“Loneliness is by far the most painful aspect of my illness,” Cecil wrote. The sentence begins the last page of his manuscript.

“There are visitors, but they all have jobs or families or both and can’t come often. Some of my most treasured friends live elsewhere. So I plan to make up for all those dreary days with one hell of a party when I die.

“First of all, there will be no funeral and no burial plot. Enough good land has been destroyed for a bunch of bones. I’ll be cremated and the ashes destroyed.”

Cecil goes on for another three paragraphs discussing the music he wants played when he’s dead. There’ll be some hymns his wife will choose, a local brass band, some bluegrass.

How long did it take Cecil’s eyebrow to write this page? we asked Marilyn Maxwell. “From the time he started it,” she said, “a good six to eight months.”

Capitalism: It Works for All of Us

An old headline writer once revealed his secret. I try to say for the reporter, he explained, what he wanted to say himself but didn’t have the guts.

Not every headline honors this agenda. Although “Worthy Canadian Initiative” is the undisputed front-runner in the annals of boring headlines, any head employing the word “may” merits our ennui. Such as the recent Tribune headline, “Public may gain in airline dogfight.”

May gain. Which is to say, may not gain. Which is to say, who knows? Which is to wonder why the Tribune printed the story at all and to be astonished that it showed up leading page one. The subhead read, “Biggest cities likely winners in fare wars.”

With Delta, United, and American now dominating the nation’s airways, “the big winner may be the flying public,” Stanley Ziemba’s account began. He went on to say that industry analysts predict that “discounts and frequent-flier programs won’t disappear. . . . Indeed, price-cutting and special deals will likely proliferate on the high-volume routes between major cities . . .”

But price-cutting and special deals have already proliferated on those routes. Do you know anybody who flies to New York full fare? Meanwhile, everyone flying the lesser routes has been gouged.

Here are some other things Ziemba reported:

“Those compelled to fly to or between second-tier cities such as Des Moines, Toledo and Green Bay likely will find the fares as expensive as ever.”

“Service on some low-volume routes could be curtailed or abandoned.”

“Most fare discounting in the future is likely to take place on international routes.”

“Air fares may go up somewhat.”

So it’s happy news if you’re off to Frankfurt. But if our old headline writer had been handed this assignment, we think he’d have composed something along the lines of “Inequities in air fares likely to mount.” Or even, “Carriers to Des Moines: Screw You.”

Art accompanying story in printed newspaper (not available in this archive): photo/Michael Madrid.