Nearly a year ago, I wrote a story about a soccer coach.
His name is Bob Horn and he suffers from amyotrophic lateral sclerosis--commonly known as Lou Gehrig’s Disease. In January, I learned about Horn, the former Chatsworth High girls’ soccer coach who helped found the City Section girls’ program in 1988. He had been an excellent coach, a renowned expert in Russian studies, a popular political science professor at Cal State Northridge for 22 years and a devoted husband and father of three.
Bob Horn, everyone told me, was the type of man who sucked the marrow out of life, not by yelling and screaming, but by caring. He was the type of man who invited his students to come to his house for barbecues. He was the type of man who rolled out of bed at 5:30 a.m. on Saturdays to set up soccer goal posts for his kids. He was the type of man who phoned his players at home if they had had a bad day at practice, just to say, “Are you OK?”
“He was like a father to all of us,” said a former player. “Whenever he was around, it seemed like everything was all right.”
When I first met Bob, the man who had traveled all over the world--teaching, learning and exploring -- he was physically unable to move any part of his body except his eyebrows, and, very slightly, his right leg. He communicated in painstaking fashion, one letter at a time, by raising his eyebrow as his wife, Judy, called out the desired letter.
I sat in their Northridge home while Bob (with Judy’s help) told me about his choice--not an easy decision--to go on a respirator in February of 1991, rather than die. As happens with every ALS sufferer, the nerve cells that control muscular movement deteriorate. The ability to talk, move, eat and finally, breathe, are lost.
Some ALS sufferers choose to die rather than go on the ventilator. Bob’s respirator sat next to his bed and rhythmically pumped air in and out of his lungs through a tube attached to his trachea.
I asked him about the ventilator.
“It isn’t great, but it beats the alternative.”
I asked him about all the things he could no longer do.
“Compared to what I can’t do, I can do things that are important , like love, feel, think, communicate, read and write.”
I asked him to tell me how he coped with the prison his body had become, asked him to put his mortality in full public view, to assess the value of his life.
And he did, with lively, humorous brown eyes and jokes he told letter by letter. He trusted me to tell his story, and I did, knowing it was worth the telling. I called the Horns the morning the story was published.
“It made his day, his month, his year,” Judy said. She told me that friends from across the country had called, elated with the article.
Journalists generally are not in the helping business. Their job is to observe, interpret, report, not to make things better.
“I can’t tell you how many positive and enthusiastic comments I received about your article,” he said after I walked into the Horns’ house two weeks ago. I hadn’t seen Bob and Judy in 10 months. He had a new, improved computer that he was able to operate with his leg. His foot clicked the mouse, and he could use a special word processor program to write, which he did for his church newsletter. He could even print his documents.
“Good to see you, Kennedy!” he printed out.
He looked smaller, his body slightly more atrophied but his eyes were still warm and he could still smile.
I learned that Judy carried an added burden because their insurance no longer provided for the 16 hours of home nursing care per day, and she had to help pick up the slack.
“Judy wears her various hats as preschool director (her full-time job), nurse, bookkeeper, mother and wife with grace, patience and understanding,” Bob said.
She said it, of course, translating for her husband. Then she smiled at him. “Thank you.”
Bob also told her, “Show Kennedy the pictures.”
Judy led me to his room, where the three photographs that accompanied my story were framed. She then pointed to a copy of the story I wrote hanging on his wall.
Before I left, I asked if the holidays were a time of poignant reflection for him.
“They are in a way more difficult because I am reminded of what I can’t do,” he said. “And at the same time more special because I am reminded of what’s really important.”
I nodded, and I picked up the piece of computer paper he had printed. “Good to see you, Kennedy!” it said.
I took it home and hung it on my wall, one writer’s tribute to another.