Good days anyways

What Cody Cordellos considers a good day wouldn't get most people all that excited.

On a good day, the 27-year-old Sonoma native might feel up to having his kid sister, Tori, 14, over to his apartment to hang out, perhaps watch a movie or play video games.

It's a good day also when Cordellos' mother, Julie Rasmussen, also of Sonoma, comes by to cook him something and he's able to eat it. When it comes to his own culinary repertoire, he admits, "If it goes in the microwave, I can do it."

On an especially good day, the pain that's often immobilizing can be uncommonly muted and Cordellos' spirits so inexplicably high that the thought occurs to him that he is feeling happy.

"It doesn't happen very often," he said without drama or self pity. But those flashes of happiness do happen. On occasion, his mom or sister will ask him, "Why are you so cheerful?"

"I'll say, 'I don't know. It's just a good day.' "

Such a day stands out sharply for a young man tormented and stunted by a genetic skin disorder that makes him look and feel as though his body is covered by horrible burns and scabbing that never heal.

Epidermolysis bullosa first showed itself when blisters appeared on his fingers as a newborn at Sonoma Valley Hospital in 1984. Quickly, the terribly fragile skin on his hands and feet blistered and turned raw. "Then it moved up and got worse," his mother said.

The rare disorder so severely stresses Cordellos' system that he stands just 5 feet tall and weighs about 65 pounds. "Seventy pounds on a good day," he said with a wry smile.

Though Cordellos is approaching 30, the condition short-circuited his going through puberty. "This embarrasses me," he confides, "but I get mistaken for my sister when I answer the phone."

His mom serves as his in-home assistant and is paid by the state to change the bandages that cover nearly every inch of him. It has to be done three times a week, and each session takes more than three hours.

"It's quite an ordeal," Cordellos allowed. He's grateful to his mother for performing the mutually arduous task all these years.

"She's somebody I'm comfortable with, plus she's used to it," he said.

Cordellos requires morphine to control the pain from the epidermolysis bullosa, which menaces not only his skin but also his muscles and gastrointestinal tract.

"It's a wide range of stuff that just doesn't go right," he said. "About 90 percent of the time, I'm in some way uncomfortable."

Sleeping is difficult. "Some nights, I don't sleep at all," Cordellos said.

Fond of Facebook, he has connected with other EB patients and once asked if they, too, have trouble sleeping.

"Every one of them said 'yes,' " he recalled. "I guess it's just part of the condition."

Unable to work or drive, Cordellos relies on volunteers from Friends In Sonoma Helping to take him to a grocery store about once a week. That's typically the only time he leaves his apartment.

He spends his better days catching up with Facebook friends, surfing the Internet, listening to music, watching movies and playing video games. On bad days, he barely moves.

"He hurts a lot," his mother said. "A lot of people don't see what he goes through."

But some do. Cordellos has a few friends who have stood by him and who rally the community to provide him something he values dearly: an apartment of his own.

Family friend Steve Thrasher of Sonoma has helped him with living expenses for years.

"I met him as an infant. I took him to his first baseball game," Thrasher said. "I've always looked out for him and tried be his friend."

Thrasher, by the way, said he can always tell when Cordellos is feeling relatively good. If he's being funny, sarcastic, that's a sign.

"When he's pulling your leg, I can tell he's having a pretty good day," Thrasher said.

For the past four years, Thrasher, 48, has raised money for Cordellos by putting on public events that include an annual motorcycle poker run, car show and concert. The next one, on June 16, starts with breakfast at 8 a.m. at the Moose Lodge on Broadway and moves to Cary's Sports Grill on Arnold Drive for a barbecue, live music and other festivities from noon to 6 p.m.

"I'm just the instigator" of the fundraisers, said Thrasher, who can be reached at ssthrasher@yahoo.com. "I gotta say that the people of Sonoma have paid his rent."

Another partner in the benefits for Cordellos is lifelong friend Codi Binkley, now 32 and vocalist and co-founder of the band Whiskey Thieves. The two of them met at El Verano School when Binkley was tagged to become the fifth-grade buddy of first-grader Cordellos.

"It seemed like people would be stand-offish to him," Binkley said. "I would always look out for him."

The musician said that since they were kids, he's liked being with Cordellos.

"Oh, man, he's hilarious," he said. "His outlook, for what he's gone through, is absolutely amazing."

Binkley and Whiskey Thieves will perform at the June 16 barbecue for Cordellos at Cary's Sports Bar. Binkley said, "It's been cool to watch him grow into the little man that he is."

Cordellos, whose only income is about $600 a month in Supplemental Security Income benefits, feels cared for in Sonoma Valley. "It's not like a big city, where everybody's on their own," he said.

"It's amazing how much help I'm getting."

He's grateful also for the support of his other longtime family friends, Laurie and Mike Sterner. They, Thrasher and others have helped Cordellos live independently with living-expense donations from a small foundation they created (thebutterflyfund.org) to help young victims of epidermolysis bullosa and other catastrophic illnesses.

Mike Sterner said there are people, like himself, who are prone to complain and moan when they come down with a simple cold.

"Poor me, poor me," he said. "But Cody doesn't do that. He deserves some help."

What keeps Cordellos going? The question made him shake his head.

"I have no idea," he said. "I ask that question sometimes, too.

"Maybe I'm just stubborn. They said I was supposed to die at 3. So I have 24 years on them."

Contact Staff Writer and columnist Chris Smith at 521-5211 and chris.smith@pressdemocrat.com.