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Oregon Lawmaker Keeps Working In The Face Of ALS Diagnosis


 

Last November, a long-time Oregon state representative announced he is facing a “likely diagnosis” of Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease. Vic Gilliam said he would continue to serve as long as his conditions allowed.

The current five-week session of the Oregon Legislature is putting that promise to the test.

To understand how quickly ALS has taken a toll on Gilliam, you only need to listen to two of his floor speeches: one last June, the other just recently. The 62-year-old Republican from Silverton knows he sounds different.

“Your listeners may have already picked up on the fact that your speech can become slurred and slower,” Gilliam said. “That’s been an adjustment.”

Another adjustment: Gilliam needs a cane to get around the halls of the Capitol.

Still at work

It was actually a fellow lawmaker who first noticed Gilliam’s symptoms late in the 2015 session and suggested he get them checked out. Months after that, he got the news: He was facing a likely diagnosis of ALS. The neurological disorder attacks cells that control the muscles and is considered fatal.

While it’s hard to definitively diagnose, Gilliam went public with his condition in November.

“I just wanted to be up front and start the planning,” he said. “How do you continue to be effective or at what point do you say ‘maybe I gotta step down and let somebody else.’”

Gilliam said he’s not at that point yet. This session he’s continued work on two of his longtime causes: Elder abuse prevention and getting a statue of the late U.S. Sen. Mark Hatfield from Oregon installed in the U.S. Capitol.

Gilliam is also known around Salem for his off-beat humor. Democratic Rep. Brian Clem got his start in the legislature around the same time as Gilliam. His first memories of Gilliam were of him pointing to the public gallery and introducing people who weren’t actually there.

“He’d say ‘Madam Speaker, courtesies for Why You Tax Me, he’s here today.’ Stuff like that,” Clem said. “And I was like ‘oh, that guy’s funny.’”

Clem and Gilliam became fast friends despite their political differences. Their relationship even survived the time Clem campaigned for one of Gilliam’s opponents.

“He just has no punitive bone in his body,” Clem said. “So he’s effective because people I think respect him.”

Clem knows what it’s like to see someone close to him struggle with ALS. His mother-in-law died from the disease in 2014. That was also the year that Clem took part in the Ice Bucket Challenge, a popular fundraiser for the ALS Foundation. Clem’s partner in the challenge was Vic Gilliam.

‘I’m grateful for the years I’ve had’

Gilliam hammed it up in the YouTube video. He’s used to being on camera. Because in addition to being a state lawmaker, Gilliam is also an actor. You can even see him on an episode of Portlandia this season, though as Gilliam said, ”Don’t blink, or you’ll miss my scene.”

Gilliam appears during a dream sequence in which Fred Armisen’s character frets about getting gray hair.

Gilliam said he’s put his acting career on hold for now. Like his political career, it all depends on his ALS symptoms. The ALS Foundation says the typical survival time with ALS is three to five years after the onset of symptoms, but that some people can live 10 years or more.

Gilliam said he’s not focusing too much on what may or may not happen to him.

“I’m grateful for the years I’ve had and I’m grateful for the years that I can see in the future with my family,” he said.

One sign of Gilliam’s optimism: He’s filed for re-election to another two-year term in the Oregon House.

Correction: A previous version of this story misidentified former U.S. Sen. Mark Hatfield’s title.

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