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Despite ALS diagnosis, longtime DFL legislator Gary Kubly continuing Capitol duties

The hardest part of dealing with the disease so far has been explaining what he’s dealing with to others.

On Dec. 9, Sen. Gary Kubly was facing his physician at the University of Minnesota.

The diagnosis was in. Kubly was informed that he had ALS (amyotrophic lateral sclerosis).

“Well,” Kubly told the doc, “I appreciate the offer, but I think I’ll turn it down.”

Did the doctor laugh?

“He’s from India,” Kubly said. “I’m not sure he totally understood.”

Kubly, a longtime Lutheran minister from Granite Falls, kept trying to bring a smile to his doctor’s face.

“I told him, ‘Doc, I’ve been a country preacher for most of my life. This is the season of good news. Where’s the good news in this?”

There is none, of course.

Sen. Gary Kubly

Sen. Gary Kubly

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ALS, also known as Lou Gehrig’s disease, is a slow, cruel killer. It destroys the motor neurons that control muscle movement.

Prognosis for the longtime state legislator?

“You don’t have a guarantee,” said Kubly. “They say the average is five years. I’ve met those who’ve lived with it for 21 years. Stephen Hawking, for 48 years.”

That effort to make the physician smile left as soon as Kubly left the University medical center. For the rest of the day, he said, he and his wife, Patricia, cried.

But amid the tears, they also made a big decision.

“My wife said, ‘Let’s focus on the things you can do,’ ” Kubly recalled.

And so far, that means that the 67-year-old DFL legislator Kubly is back at the Capitol, studying legislation, pushing hard on issues that matter to his district — wind energy is a big thing back home, as is rural health care and school funding.

To date, he’s had to make a couple of concessions to ALS. When he’s in the Capitol, he can get around with a cane. To get to the Capitol from the Senate minority offices in the State Office Building, he needs an electric cart. He sometimes struggles to button the top button on his dress shirts, meaning there are days he tightens his necktie without buttoning that pesky button.

The hardest part of dealing with the disease so far has been explaining what he’s dealing with to others.

“Why the cane?”

“It keeps me from having a more intimate relationship with the ground,” he often says.

Then, he explains his problem.

“It’s more awkward for them than it is for me,” he said.

In retrospect, he knows now the symptoms began late last session. Suddenly, his left leg was weak.

Kubly tried to brush off the problem as a combination of tiredness and stress from the end-of-session crush. By early summer, his problem was only getting worse. He saw his hometown doctor, who directed him to the University.

All the while, Kubly was in campaign mode, seeking his third term in the Senate after three House terms.

He won re-election handily in November, although in the year of huge Republican gains, his margin of victory (57 percent) was down 10 points from his previous election.

A few weeks after the election night victory, with his right leg as weak as his left, he got the diagnosis.

Legislators can become divas over the smallest things, and ideology often gets in the way of rationality.

Kubly, a moderate DFLer, long has understood that.

“I’ve always tried to be accepting of other people’s positions,” he said. “I’ve never been one of those people who believes you MUST agree with my position. The older I get, the more I understand others who may not agree with me are human, too.”

That he’s now dealing with something so real and so ugly as ALS makes some of the legislative drama more absurd than ever.

“This attack business,” he said. “Is it really necessary?”

He shrugged. The “attack business” likely is not going to change, particularly this session, with so many Republican freshmen bouncing around, filled with a sense that they can fix all of Minnesota’s problems, if only people will listen to them.

Kubly insists that his own burdens will not diminish his passion for dealing with the issues of the state and his district.

The Kublys do have blessings, he said. They have five grandchildren in the metro area. He’s doing work he loves.

He says he gets up each morning and reminds himself, “I’m glad I’m alive.”

He admits that may be harder as the disease progresses, as it surely will.

“There are times when it would be nice to move from faith to certainty,” he admitted.

But he smiled when asked if he hasn’t spent a few hours railing against his disease and God.

“You’d better read Job again …,” Kubly said. “God blesses us all, but some just don’t notice because we’re too pre-occupied with other things.”

Doug Grow writes about public affairs, state politics and other topics. He can be reached at dgrow [at] minnpost [dot] com.