MD Sufferer Doesn’t Like to ‘Toot His Own Horn’

Jeff Pierce threw his head back and groaned.

“Oh, I hate doing this,” he said. “I’d rather be on your side asking the questions.”

Pierce, this year’s winner of the John Zimmerman Memorial Award and honored Saturday night for demonstrating courage as a person afflicted with muscular dystrophy (MD), hates answering questions about his life. Normally a warm, friendly, sharing person, according to friends, he squirms uncomfortably in the limelight.

“I don’t like to talk about myself. It’s embarrassing,” he said. “I don’t like to toot my horn. I like to quietly fade back into the woodwork and just do what I want to do. . . . It’s really easy to ignore the fact that you have an incurable disease until everybody starts asking questions about it.”

Pierce seems to think he has done nothing worth tooting about. His wife, friends, co-workers and the selection board of the local chapter of the Muscular Dystrophy Assn. disagree.

“Jeff exemplifies that even though someone is disabled you can achieve great things,” said Gere Gastineau, director of the MDA chapter that includes Orange, Riverside and San Bernardino counties. “When you see Jeff, you just don’t even think about him being handicapped. . . . He’s really an outstanding young man.”

Pierce, a bearded, bespectacled 28-year-old Anaheim resident, was born with facioscapulohumeral muscular dystrophy, a variation of MD that usually strikes early in life and like all forms of the disease is progressive and incurable. He remained mostly unaffected until college, but has been restricted to a wheelchair for nearly two years.

Climbs Corporate Ladder

Unlike about 75% of the area’s 1,000 MD patients, however, Pierce not only works full time but has climbed the corporate ladder despite his handicap.

An assistant staff manager at AT&T;’s Western regional headquarters in Santa Ana, Pierce also is an active member of the Church of Christ in Cypress and is a member of the Orange County Master Chorale.

He first learned about his illness as a child and grew up knowing he would wind up in a wheelchair, but his is a “never-say-die” tale.

“Everybody has a choice,” Pierce said. “I can sit back and groan and moan all I want about how difficult it is, but I just don’t want to. . . . There’s a lot of resistance sometimes with handicapped people who say ‘I can’t.’ You can ‘I can’t’ yourself right back into a corner.”

But to Pierce, avoiding the “I can’t” syndrome is nothing special and hardly worth an award or elaborate banquet in his honor. (The award is named for John Zimmerman, a 15-year-old MD patient who aspired to become a U.S. Marine but died last year before realizing his dream. The Marines honored him with a full military burial.)

Best Job He Can

Pierce just does not think of himself as a handicapped person. He’s an ordinary person doing his job as best he can, he maintains.

“The only time I notice is when I look in the mirror,” he said, “and I’m still surprised about it sometimes.”

Born and raised in Ventura County, Pierce is the son and brother of MD patients. He watched his mother and brother slowly deteriorate to their current handicapped state and knew all along what he was in for, but he said he didn’t let it stop him from enjoying his childhood.

He tired more easily than most kids and he couldn’t run as well, but he remained active playing tennis, riding horseback and climbing mountains.

Today, if he falls down, climbing to his feet can be a 45-minute task.

In fact, it wasn’t until he fell down and broke his jaw at work one day in October, 1984--and right in front of the new boss, too--that his doctor finally convinced him that he did indeed need a wheelchair. Until then he had gotten around relying solely on his cane, too “pigheaded” to admit his need, he said.

Being confined to a wheelchair has its frustrations, Pierce concedes. He would find it extremely difficult to travel in Europe, can’t visit such attractions as Betsy Ross’ house in Philadelphia (no elevator) and can’t eat at restaurants that don’t have ramps. Fortunately, he said, Orange County, with all its new buildings, is a “mecca” for the handicapped.

But Pierce’s first and worst loss was his cello.

“That was traumatic for me because I was a good musician,” he said. “I had to quit in my freshman year (in college) because it was just too painful to keep playing. It took me about two years to really adjust. . . . I’m finally to the point now when I can listen to another cellist and not leave the room. It hurt that much. I just didn’t go to see orchestras for the longest time.”

Pierce has since rechanneled his musical passion into singing, which the disease cannot take away from him. With a broadcast-quality voice, he also hopes to eventually dabble in voice-overs for radio and TV commercials and maybe one day for Disney’s animated movies.

Planning to Adopt

Meanwhile, he and his wife, Joy, are looking forward to adopting their first child.

“I don’t think I could live with myself knowing I have dystrophy and would pass it on to my child,” he said of their decision to adopt. “It’s one thing dealing with it yourself, but dealing with it with a child, that I don’t want to ever go through.”

People who know him think Pierce will make a good father--one who deserved the award he received Saturday.

“He comes in early in the morning and manages to stop by and talk with everybody every day--the kind of thing most of us never get around to doing,” said his boss, AT&T; area staff manager Melva Tapia. “It’s because of Jeff that we have the team cohesion around here.”

A self-described “stern taskmaster,” Tapia added that she does not give Pierce any special considerations.

“I have the same expectations for him as I would for any other employee,” she said, “and that’s the way he wants it.”