‘People who see me think that because I can’t speak, I can’t hear, think or feel’ : Facing Death With Calm Courage

‘Ask any questions you like,” Carl Jennings slowly tapped out on his keyboard, one letter at a time. “I’m not sensitive.”

Jennings, 50, suffers from amyotrophic lateral sclerosis (ALS), a progressive degeneration of nerve and brain cells better known as Lou Gehrig’s disease.

The disease, which impairs muscular control, leads to atrophy and eventually death.

“The first indication was at a Scout camp in June of ‘82,” Jennings typed Monday, using both arms in a hanging harness to guide a rubber finger over the keys.

The device, fashioned by a family friend, gives Jennings just enough control to pick out a letter at a time to place on the computer screen.

When Jennings had trouble catching a basketball, he recalled, he went to see a doctor. His disease was diagnosed in November, 1982.

A little over a year later, Jennings was confined to a wheelchair. In another month, ALS had put an end to his career as a mechanical engineer. And last spring, Jennings lost his ability to speak.

“Everything’s bad, but that (loss of speech) is the worst,” said his wife, Camille. “Not just for him, but all of us . . . . I can’t talk to my best friend anymore.”

His personal computer and its software, donated by co-workers at Rockwell International Corp. in Anaheim, allow Jennings to communicate, albeit slowly, with his family and the world outside his Corona home.

“People who see me and don’t know me think that because I can’t speak, I can’t hear, think or feel. I call this an inverse deaf-and-dumb syndrome . . . .

“I write lots of letters, my personal history--a journal--and weekly messages for the church,” Jennings said. By continuing to communicate, he has been able to maintain his personal relationships and a quality of life.

“I have a very supportive family. I also have many visitors from work, church and (my) extended family.”

The Jennings family includes seven children--ages 12 to 24--a 2-month-old grandchild and Sheila Owens, a visiting nurse who helps care for Carl.

“We have our really bad times and we cry, but we were happy before and we’re happy still,” Camille Jennings said.

“We know his death is imminent,” she said, “but we’re not going to make ourselves miserable about it . . . . We had a healthy outlook on life and death before. Why should it change?

“You can lay down and die,” Camille said, “or you can stand up and fight. We’ve elected to stand up and fight.”

Carl Jennings’ co-workers joined his fight, raising $18,000 to buy a modified van with a wheelchair lift for his family to use. The Jennings family leases the van--for $1 a year--from the Dayle McIntosh Center for the Disabled, an Orange County-based nonprofit agency.

“When we no longer need it, it will go back to them,” Camille Jennings explained. “It will be known as the Carl Jennings van.”

Better known, she hopes, will be the Carl Jennings attitude, a positive approach to dealing with his terminal disease.

He also corresponds with other victims of Lou Gehrig’s disease, hoping to help them deal with their deteriorating condition as well as he has.

Two ALS victims the Jennings family knew died on the same day, about two weeks ago. “It was a sobering day,” Camille said, “but that’s all the longer it lasted . . . .

“The main thing is, you have to keep your spirits up,” she said, “because if you get depressed, it’s unendurable.”

At least as much as the van or the computer, the family puts high value on the moral support others have offered.

“There’s something in scripture about casting your bread on the waters and by and by it will return to you,” Camille said, recalling her husband’s words: “The bread I cast on the water has come back toasted, buttered and with jam.’ ”