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A life without fear
By Amy Roe

Seattle Times Eastside bureau

Before the diagnosis, Dave Cawdrey was a professional skateboarder. He skates in downtown Seattle before he became a pro.

Dave Cawdrey proposed to Kori the day he was diagnosed with ALS about six years ago. They married quickly and have two sons, Elijah, 3, at right, and Keone, 5.

When Dave Cawdrey was diagnosed with ALS, he said the thing he wanted most was to have a family. A photo of Dave and his first son, Keone, taken shortly after Keone was born, is kept near his bedside.

Dave Cawdrey struggles to say a few words to his wife, Kori. Cawdrey's condition has worsened over the years and he is now bedridden, breathing with the aid of a ventilator.

Dave Cawdrey was all about the rails.

The boyish member of Faction Denim's skateboard team tore it up on the half-pipe, but it was his skill scraping the board along railings that made him semi-famous among Seattle-area skateboarders in the late 1990s.

In a photo in Transworld Skateboarding magazine, Dave, swathed in a gray T-shirt and camouflage shorts, is crouched, arms outstretched. He's grinding atop a railing along the fountain near Westlake Center, like a skate-punk superhero about to take flight.

Rails now keep Dave, 32, from falling out of the hospital bed that sits in the living room of his North Bend home. He can't move his arms or legs, let alone pull an ollie. He breathes only with the aid of a ventilator. He weighs about 112 pounds.

The former pro skateboarder suffers from ALS, also known as Lou Gehrig's disease, a fatal, progressive degeneration of the nerves and muscles, for which there is no known cause or cure.

He was just 25 when he and his girlfriend, Kori, learned he would die young. Dave and Kori had to decide: What kind of life did they want to live?

He was forced to leave skateboarding, but skateboarding never left him. Dave chose to live his life the way he skated, with finesse, not fear, no matter what's in the way. Kori was right there with him.

They married quickly and had two children even though Dave would not live to see them grow up. A finite fatherhood, they figured, was better than none at all.

Now in his last days Dave lacks the strength to hold his young sons. Kori, 28, considers how their boys will handle it when Dave's no longer around.

"I always knew that they would have to deal with the death of their father. I just took it for granted that it would all be worth it," she said.

Life of a skateboarder

Dave has trouble talking now: Kori reads his lips, although Dave can barely move them. When Kori tells the story of her life, it is also the story of his.

They met in early 2000 through mutual friends. Dave worked as a journeyman carpenter, which allowed him to take winter months off to snowboard. Kori was a student at the University of Washington.

One of their first dates was a showing of a promotional video in which Dave skated wearing sponsors' skateboarding clothes.

"He was so different from my other boyfriends," she remembers. "He just had that kind of magnetic personality that everybody kind of followed and liked to be around."

He got boxes of swag, like shoes from Etnies, but since skateboarding is a low-profile sport, there was little money or fame. Kori was nonetheless impressed, not just with Dave's talent, but also with his spontaneity, his passion for living. He didn't skate because it was cool; he did it because he loved it.

When she had a fight with her sister, who was also her roommate, Kori went to stay with Dave at the house he rented near Northgate Mall. She never left.

Lately she's taken out pictures of them enjoying the outdoors during their first days together in 2000. Dave would tease her about the car camping they did. For him, "it wasn't camping unless you hiked six miles in," she said.

He was always figuring out a way to make things work, like when he drove his three-wheel ATV on top of Kori's old Nissan Maxima to take camping with them.

"That three-wheeler was big as the car," she said with a laugh, and remembers the looks they got as they drove to the campsite.

Dave thought it was funny, and everyone was amused as he used the three-wheeler to ferry friends' gear, and beer.

That was pure Dave. "He was just crazy," Kori said. "If he wanted to do something, he'd just do it."

She treasures the photos showing him climbing a tree or stripping down to his boxers to swim in a river.

"We had that whole summer of fun."

Something felt wrong

Casually or in competition, Dave was known for "grinding" the board over rails, curbs, any edge — using the board instead of the wheels.

He would practice the same tricks over and over, pushing each one further, until he got it right.

In hindsight, Kori sees the warning signs more clearly. Like the time she and Dave and her sister and her boyfriend were walking to the store after having a few beers. Kori gave Dave a playful push.

"And he fell down; I was thinking, 'Oh my gosh, I didn't even push him so hard.' "

They rationalized the fall. It was just the beer.

And when Kori went to watch Dave skate at a competition at the naval base at Sand Point in March 2000, he was unusually nervous and shaky the first time on the board.

He came back to Kori and told her something felt wrong, but he wanted to continue. Kori had a bad feeling.

He fell hard on his tailbone while trying to grind a rail. Still, he got back up and got on his board.

"Everybody was waiting to see him," Kori said. The younger, less-capable skaters had shown up to see what Dave could do, and he wanted to show them.

Falling wasn't that unusual for a skateboarder. He blamed it on an earlier knee injury.

"You kind of excuse things in your mind when something's not right," Kori said.

A frightening discovery

It took months of doctor visits and tests before Dave was diagnosed in November 2000 with ALS. Those three letters meant little to Dave or Kori. The doctor didn't really explain ALS, so they went home and Googled it. What they read scared both of them.

They cried and talked all that day. That evening, Dave proposed at his parents' house, with his family nearby.

His parents asked him what he wanted to do, and where he might want to travel, Kori remembers.

But what Dave wanted was a family, and he didn't have time to wait. He couldn't wait to start living.

"A lot of people have time to build more of a foundation," Kori said. "We were kind of different from the start."

The couple plunged into wedding plans. On Jan. 13, 2001, roughly a year after they'd first met, the couple- Kori in her grandmother's wedding dress - were married at Seattle's Stimson-Green Mansion. They honeymooned in Hawaii. In August, they welcomed Keone, a red-haired son.

No longer able to work, Dave became a stay-at-home dad, sharing responsibilities with Kori, who finished her undergraduate degree in sociology at UW online. Since then, she has worked part-time jobs for her in-laws, and at Keone's preschool.

In between night feedings and changing diapers, Dave restored his project car, a 1969 VW bug, so Keone could one day drive it.

ALS weakened his hands first, so he worked slowly, until he no longer had the dexterity to restore the car. Finally, he couldn't hold the tools. A friend finished it for him.

Son becomes dad's caretaker

As his son became more mobile, Dave became less so. As his son developed his physical abilities, Dave watched his own deteriorate.

Keone grew to become his father's caretaker. From the age of 3, he fed his father bite by bite, and helped him in the bathroom. He also watched his videos, mimicking the skateboarding moves on the carpet and becoming a prodigy at the skate park.

Kori remembers one day when father and son were looking at their hands, which seemed to surprise them, though for different reasons. Keone was just discovering his physical self, while Dave was noticing what he'd lost.

"Everything Keone was learning was being taken away from Dave."

Kori gave birth to their second son, Elijah, just 18 months after Keone was born. Dave was too weak to hold the baby, so Kori would set him on Dave's chest.

Just as he'd done for Keone, Dave set out to fix up an old 914, "the poor man's Porsche," and scoured eBay for parts, while local members of a car club he'd joined online did the physical work.

Pretty soon, Dave stopped going to the skateboard shop where he used to hang out.

It was too hard, Kori said, and many of his friends didn't know how to relate to him, although one would come over with a "guy flick" and usher Kori out of the room. Together in the glow of a Hollywood blockbuster, the men would sit, watch and not talk.

Distracting himself with the Internet or movies was one way Dave coped with his illness, and soothed the anger that flared up.

For Kori, the constant motion of caretaking was a balm.

"I think I just distract myself a lot because I just keep moving and moving," she said. In April 2003, when Elijah was just 1 month old, Dave got his wheelchair. It took months of wrangling for Kori to get Medicare to pay for the $10,000 electric wheelchair, but Dave didn't want to get into it.

He knew he would never get out.

Dave struggled to walk. It was only after he fell so hard he knocked out most of his teeth that Dave finally began to use the wheelchair. Keone and Elijah climbed aboard and went everywhere with their father.

Friends from the car club raised $18,000 for a van with a lift so Kori wouldn't have to assemble and dismantle the 50-pound wheelchair ramp every time they took a trip.

They went everywhere together. It was always the four of them, Kori said, a team. At walks to benefit ALS, Dave was glad to help raise awareness about the disease, but "he'd see people who couldn't talk," Kori said. "That was always really hard for him."

A financial toll

The Cawdreys' financial health suffered, too. In five years they moved to five different rented homes, relying heavily on Dave's parents to pay the bills.

In August, Kori's sister, Kasi Beverly, moved from Missouri with her four children, who range in age from 2 to 9, to help out. They all live together in a modest house cluttered with coats and coloring books. A dog named Hawk, after skateboarder Tony Hawk, roams in and out of the house.

With six kids attending two schools, colds spread fast and often. Last spring the whole family caught a cold, but it hit Dave the hardest. He ended up in the emergency room with pneumonia.

After two weeks in intensive care, he had a tracheotomy, a turning point for many ALS patients. Once on a ventilator, they rarely come off it.

"He didn't want to be stuck in a bed for years," Kori said. "He thought he'd be more like Christopher Reeve," the actor who remained highly visible after he was paralyzed by a head injury.

Dave wasn't Superman. When he came home from the hospital in June, he could no longer talk. He opted for hospice care and refused to be quarantined from the kids if they were sick. Doctors told him he had a matter of months to live, and he wanted to live them.

Raising the children, now 3 and 5, taught Kori to care for Dave, "physically, completely." But at first, the machines and the protocols used for hospice were overwhelming.

"They threw everything at me," she remembers, "and then everybody left."

During the December power outages, Dave chose to stay home, aware that if his battery ran out and the generator failed, he'd be without a ventilator. Only a few ambulances are equipped to operate life-support systems, and there was no telling how long it would take for them to get to North Bend.

No matter. Dave didn't want an ambulance, anyway. Kori had the pain medication ready; hospice workers told her what she'd need to do. She remembers being scared to see him die, though Dave, she said, seemed at peace.

He made it through, but Kori never knows which day will be his last.

When the end comes, she hopes their sons won't be "scared of what was happening ... scared of the machines and the tubes and the beeping."

She knows her husband worries about the kids, too.

"That's the hardest thing for him," Kori said, "because he doesn't want to leave the boys. And me."

They try not to think too much about what will come next. "We've always said you can't stop time," Kori said.

Knowing that her husband's legacy will live on through his sons helps Kori cope, she said.

In hospice, social workers say, families often reframe hope. Dave and Kori did that years ago.

For them, Kori said, hope was never about avoiding death.

It was about creating a life — a life in which "everybody is able to stay who they are, stay true to themselves," right up to the end.


Amy Roe: 206-464-3347 or aroe@seattletimes.com

About ALS

ALS, amyotrophic lateral sclerosis, is a progressive, neuromuscular disease that attacks nerve cells and pathways in the brain and spinal cord.

How many have it: Nearly 30,000 Americans now have ALS, also known as Lou Gehrig's disease.

Treatment: There is only one FDA-approved drug to treat ALS: riluzole. It extends life for up to a few months. A one-month dosage costs around $1,000.

More information: Contact the Evergreen Chapter of The ALS Association at 1-866-STOP-ALS or see www.alsa-ec.org.


Source: Evergreen Chapter of The ALS Association