North Dakota Man Must Fight for Life 3 Times a Day

Tom Mattern, the rail-thin and amiable fellow who oversees state elections, lives down the street from the Capitol, the better to take a quick trip home every day at noontime. It helps keep him alive.

During the break, North Dakota’s 29-year-old elections administrator takes off his dress shirt and dons an inflatable gray vinyl vest. After snapping its five black buckles, he picks up a blue tube and sucks moisture and medicine into his lungs.

Mattern has cystic fibrosis.

His lunchtimes are punctuated by the whir of a compressor pumping air into the vest as it presses his chest and shakes down the thick, stubborn mucus in his lungs that could suffocate him.

Mattern endures this half-hour battle for life at least three times a day. But the tedium inspires only humor. After describing his midday routine to a visitor, Mattern quipped, “Then I inhale my lunch.”

He’s soon hurrying back to Secretary of State Al Jaeger’s office. Mattern’s $26,880-a-year job requires knowing the intricacies of state election law, answering questions from county auditors and political activists, keeping manuals and forms updated, and checking proposed initiatives and referred measures.

“He has a very good knack of putting together the big picture, how little changes in the election law might affect something else,” Jaeger said.

Mattern was hired in August, 1991, after graduating from the University of North Dakota law school. His then-boss, Secretary of State Jim Kusler, had no notion of Mattern’s affliction until they were driving one day to a meeting in Fargo.

Was Mattern interested in political office, Kusler asked. No, Mattern replied. He didn’t think his body would stand the rigors of a campaign, explaining he had cystic fibrosis.

“If I’m realistic about it, my own estimate of my life span is two to four years, I guess,” he said matter-of-factly.

An estimated 30,000 Americans--100 in North Dakota--have the disease. When Mattern reaches his 30th birthday on Monday, he will have passed the average life expectancy for cystic fibrosis, now 29 years, said Tammy Rhodes, a spokeswoman for the national Cystic Fibrosis Foundation in Bethesda, Md.

Mattern’s parents, Frank and Hermina Mattern of Bismarck, helped found the independent Cystic Fibrosis Assn. of North Dakota. Tom Mattern serves on the board and this summer appeared for the first time in a television public service message about the disease.

Recent years have seen big advances in the understanding and treatment of cystic fibrosis. Scientists in 1989 found the recessive gene that causes it. Researchers are testing a genetically engineered copy of the natural enzyme that thins lung mucus, making it easier for the body to shed.

His damaged lungs have lost 60% of their capacity, and he needs to catch his breath after walking a flight of stairs.

He’s in the hospital about four times a year for intravenous doses of antibiotics to fight recurrent lung infections. Pills no longer help.

“You get sick to the point where it’s difficult just getting from my car to my desk at work,” he said. “I know it’s time to put out the white flag and go in.”

Like many people with cystic fibrosis, he also suffers from digestion problems. Mattern chases every meal with 12 to 14 enzyme pills; at 95 cents each, a $11.40 handful costs more than the main course. “That’s about the cost of a good steak dinner,” he said.

Just under 6 feet, with his genial manner, little about Mattern gives away his condition. There are only hints: a deliberate gait, fingertips swollen from lack of oxygen, a slight build he is always trying to fatten.

“I’ve graduated to a 29-inch waist,” he remarked recently, tugging on his waistband.

Growing up in Bismarck, he played basketball and football until high school, when his frail build started to matter.

“I was just not big enough to be playing,” he said. “I would have loved to have played football, but 94-pound seniors don’t tend to make great linebackers.”

And though the disease gave him pause, it didn’t stop Mattern from getting married last New Year’s Eve to Marjorie Buchl, a 26-year-old speech therapist from Rock Lake.

They met at the University of North Dakota in Grand Forks, where Mattern also earned his undergraduate degree.

“I was real concerned about whether she fully understood what she was getting herself into, what the ramifications were, what the sacrifices might have to be,” Mattern said.

It didn’t matter, he said. “She was willing to forge ahead.”

Just like Mattern.