He Chooses to ‘Fight the Unbeatable Foe’

Bob Horn is a retired political science professor and he still has that professorial look. His hair is short and turning white, his beard more salt than pepper. His eyes are brown and compelling. A smile often curls the lips.

The amusement is reassuring, for though his features may be pleasant, looking at Bob Horn takes some getting used to. The disease known as ALS (amyotrophic lateral sclerosis) has robbed him of all but the slightest of physical movements--an arch of the eyebrows, the direction of his gaze, a tiny lift in his legs. He is unable to speak, eat or breathe without assistance.

A tube the diameter of a garden hose extends from his windpipe to a ventilator, which sits on an end table beside his easy chair in the living room of the Horns’ Winnetka home. “The vent” inhales and exhales with a steady rhythm.

Bob Horn talks with his eyebrows; any movement means “yes.” Bob and his wife, Judy, converse in a code, using the alphabet laid out on a grid.

“One, two, three, four. . . “ Judy says. Bob raises his eyebrow; the letter is on the fourth row. “P, Q, R, S, T,” Judy says.

Bob signals, but Judy isn’t sure. “Is it a T?”

Indeed it is. Judy guesses at the word. “The?”

Bob says yes.

*

Sometimes he talks with his feet. The disease may have deformed them, but because he still has some movement in his legs, he is able to nudge a special “mouse” rigged to his personal computer. The software enables him to scan the alphabet. Not unlike Judy, it offers “word prediction.”

Bob Horn thus tapped out a letter to me last month. He was responding to a column about a woman’s decision to end her terminally ill brother’s life with a lethal dose of morphine.

“I am a supporter of legalizing euthanasia,” he wrote. “In recent months, I have read and seen numerous reports about people with ALS who have ended their lives or sought to. . . . I have become increasingly interested in the issue of doctor-assisted suicide. (In fact, I was offered that option by a physician at an earlier stage of my disease.)”

He proceeded to describe how, after 2 1/2 years on a ventilator, he finds life to be very much worth living. He enclosed some articles he had written for the newsletter of his church, Northridge United Methodist.

He tells of how he was moved by a TV news report on doctor-assisted suicide in Canada. Three people with ALS were considering the option--and all could still eat and talk. None was on a ventilator.

“I certainly don’t mean to be judgmental,” Bob wrote. “. . . I am not saying that I am in any way ‘better’ or more courageous because I chose to go on living in spite of the disease.”

He pointed out that the symptoms of ALS vary dramatically among patients. “For instance, one of the women in the report has a lot of pain, while I never have.” And he well remembers the early stages of the disease: “As I have told Judy, for me ‘getting this way was worse than being this way.’ You start dropping things, falling, having trouble swallowing, and losing your voice. This deterioration is, as you can imagine, quite depressing.

“Finally, the decision of whether to go on life support is an intensely personal one, I think. I made the right decision for me, but that doesn’t mean it’s for everyone.

“All that said, I would still like to talk to those people in the report. What would I say? Simply that ‘there is life on a ventilator’. . . . I am an admirer of Don Quixote; I can identify with his willingness, as sung in ‘Man of La Mancha,’ to ‘fight the unbeatable foe.’ So be it.”

Bob Horn loves to read and write and considers himself fortunate that he can still do both. He wears an athletic sweatband for reading. Inside it is a sensor that, when triggered by his eyebrows, activates a page-turning apparatus. On this day the subject was Shakespeare. Often he reads journals concerning the former Soviet Union--his specialty as a professor at Cal State Northridge.

If Bob Horn taps out G-O on his Macintosh, word prediction offers him the choice of “Gorbachev.”

There are so many times, I told him, that I struggle for the right word.

“Any writer,” he said with his eyebrows, “would love word prediction.”

Then he grinned.

*

The impression that Bob Horn gives is that he wants his life to go on simply because he has done such a good job of living it. His home reflects the love of his wife and three children, now grown. His memories are rich with world travel and the simpler joy of coaching youth soccer.

He wrote his church columns several weeks ago, but there is a Thanksgiving quality about them. He expounded on the value of humor. He spoke of the importance of friends and family.

He knows that his slow way of talking, letter by letter, can have a certain dramatic effect.

“I think the real story,” he said with Judy’s help, “is about Judy.”