The Book of Blessings: an Autobiography

Sunday was here and with it another day of Santa Anas. All over town people were talking about the weather.

Leaves had blown inside the foyer of Northridge United Methodist Church. Malcolm Sears sas saying he couldn’t remember a wind like this, not in all his years in the Valley, all the way back to the year of his birth, 1918.

The wind wasn’t the only impressive news of the day. “Hiya, Bob,” Sears said upon greeting a friend. “I hear you wrote a book.”

The line was delivered deadpan, a kind of teasing understatement. Yes, Bob Horn had written a book, which had just been published. It’s called “How Will They Know If I’m Dead?” and the cover identifies the author, formally, as Robert C. Horn III.

Perhaps you remember Bob Horn; I’ve written about him before. He’s a former Cal State Northridge professor who has been virtually paralyzed by amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. For several years now, he has been unable to talk, eat and even breathe without assistance. The disease has left him with precious little ability to control his movements--just a little flex in his facial muscles and a little flex in his thighs.

This is enough, though. By moving his eyebrows, he is able to spell out words in a code understood by his wife, Judy, their three children and a few close friends. And because of special computer software and a specially rigged mouse that he taps with his right foot, Horn is able to write.

“How Will They Know If I’m Dead?” is a 146-page softcover published by St. Lucie Press. The title reflects Horn’s irreverent sense of humor. The subtitle is “Transcending Disability and Terminal Illness.” A foreword was written by Dr. C. Everett Koop, the former U.S. surgeon general; his son and “Robbie” Horn had been childhood friends.

The book, which I read in manuscript form, is a kind of autobiographical guide to a fate that many fear. He explains why he believes assisted suicide should be legalized and why he still considers life very much worth living.

“I have no complaints about my life,” Chapter 1 begins. “I have, luckily, only a few regrets and none of them is of cosmic significance. In fact, prior to ALS, I loved my life!

“I grew up into my mid-forties a very normal person and yet, at the same time, a somewhat abnormal one. I was normal in the sense that there was nothing particularly unusual about me, no involvement in anything, positive or negative, unique or spectacular. I was, I think, abnormal in the abundance of blessings and joys I have received. I thoroughly enjoyed, and appreciated, my family, my job, my other activities, and my friends. I have lived a wonderful life and consider myself an extremely fortunate man.”

You may detect an echo of Lou Gehrig’s famous words here. That said, Horn proceeds to tell his tale, offering both practical and philosophical advice for individuals and families coping with severe disability. Bob Horn says he tries not to focus on what he can’t do, but on what he can do.

He doesn’t get to church as often as he used to. Getting around is difficult, but on this day the family hooked up the portable ventilator, put him in his wheelchair and loaded him into the van. Inside the sanctuary, Judy parked Bob on one side and took a seat beside him. Lights flickered and the sound system screeched as wind fiddled with the electrical system.

Afterward, more than 100 congregants visited the Fellowship Hall for an event Judy described as a “book-stamping.” As Bob’s handwriting worsened after ALS was diagnosed in 1988, a rubber stamp of his signature was made.

The price was $14 and several people bought extra copies for friends. Two dollars from each sale was reserved for a fund that helps the Horns pay for equipment such as the automated lift for the family van and for nursing care. The Bob Horn Fund was established a few years ago by friends from church, Cal State Northridge and the youth soccer leagues Bob had coached for years.

Bob Horn surveyed the scene, occasionally moving his eyebrows to converse with Judy or his son Chris. Something made Chris laugh.

“I just told him that almost everybody around here has a book under their arm,” Chris said.

“He said, ‘Get the names of those who don’t.’ ”

Bob Horn didn’t want a quip to be his only quote this day. Through Judy, he also said this: “The people of Northridge Methodist have been the foundation of our ability to cope.” Judy, fortunately, can anticipate most words after just a couple of letters.

There was joy in Bob’s expression. The disease has now left the tip of his tongue protruding from the right side of his mouth, but there’s no mistaking his expression. His mouth doesn’t move, but his cheeks puff below his eyes, which seem to sparkle.

“Bob Horn doesn’t smile any more,” a friend once told Judy. “He glows.”

He’s a hard man to interview. I just wanted to know what it feels like to have everybody making a fuss over his book.

Speaking in code, Judy said “one”; Bob lifted an eyebrow. Again she said “one”; again he lifted an eyebrow.

That would be the letter A. The next letter was M.

“Amazing?”

Yes, said Bob Horn’s eyebrows. It feels amazing.

Scott Harris’ column appears Tuesdays, Thursdays and Sundays. Readers may write to Harris at the Times Valley Edition, 20000 Prairie St., Chatsworth 91311. Please include a phone number.

The book is a guide to a fate that many fear. He explains why he believes assisted suicide should be legalized and why he still considers life very much worth living.