“The thing that I enjoy more than anything else is fabricating,” rigging up contraptions to solve a problem, White said.
Since he lost both his legs, he’s put that skill to use.
  
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A mechanic with 20 years’ experience, White has rigged his trailer home at the end of a gravel road 12 miles down Knik-Goose Bay Road to accommodate his new life.
He’s cobbled together a cart from a children’s toy to get down a hallway too narrow for his motorized wheelchair. He’s outfitted his wheelchair with a leather tool pouch and wooden tray table. He’s hung bars over his bed so he can roll over. He put a winch on his frontloader to pull him up to the pilot’s seat.
He’s figured a way to chop wood with a chainsaw and has even gone moose hunting.
“I can do everything I could before with the exception of going jogging,” he joked. But there are some things still beyond his reach.
“My son Andy at 14 had to start taking on a lot of my duties,” he said. “Without [Andy] I don’t know what we would do around here.”
White’s wife, Sherry White, said Andy, now 16, has taken on a lot of jobs that used to fall to Jim.
“My 16-year-old son knows more about working on vehicles and driving big machinery than probably most men,” she said.
White was working as a school bus driver when a little over five years ago he started having trouble with his legs. He could walk 100 yards and then his leg would just shut down. Almost like clockwork – 100 yards every time.
If he took a rest he could get moving again. But with this trouble also came pain.
“I finally realized that I wasn’t getting any blood to my leg,” White said.
He was diagnosed with Peripheral Degenerative Vascular Disease, a condition that restricts blood flow to the legs where arteries branch off in the belly.
Most of what happens next is detailed in a three-page letter he wrote to his creditors as part of court proceedings after both legs were gone.
“Every time I started writing it, something else would happen, so there’d be another chapter,” White said.
The letter begins in June 2004 when doctors replaced the artery in his groin going to his left leg. That worked for a while.
“At that point I was cured,” he said.
At the time, he didn’t know how wrong he was.
In October of 2006 a piece of the calcium blocking his arteries broke off, traveled down his right leg and lodged in his calf muscle. Blood couldn’t get to his foot.
Doctors tried five times to restore the blood flow.
“They tried to get it out, and they got most of it out,” White said.
But his foot got worse. In November of that year, they decided to remove most of his foot.
White still has a picture of the foot after it was removed. A hand holds the foot by the toes, which sit above a jagged edge of bloody tissue floating above a blue medical tray.
White joked that his wife said there was no way the doctor would let him have the photo. But White said he wanted it. He was still driving the bus and he figured it’d be useful when he was trying to get one of his riders’ attention.
At this point he was told he should apply for Social Security.
“After you’ve had something cut off, they can’t say you don’t have a problem,” White said, summarizing the advice he got.
But Social Security, he later learned, would cause more problems than it solved. He was told he was $28 over the limit for Medicaid and he no longer qualified.
“I went and I saw all the doctors and said this is the last time I’ll be seeing you, because I’ve got no more insurance,” White said.
On Memorial Day, 2007, doctors tried to avoid a second amputation, sending him into a seven-hour surgical procedure. But by June they found their efforts had failed and they took the rest of his foot.
Despite his lack of insurance, White said his doctor continued to help. At the time he had little choice but to accept. If he didn’t have the surgeries he’d likely die. If he tried to refuse to undergo procedures he couldn’t pay for, one talk with his family would have convinced him otherwise.
The third amputation came a week and a half after the second. Doctors cut his leg off at the knee.
The surgery was the “worst thing I ever went through,” White said.
For about a week and a half afterward he would break down crying, not knowing exactly why.
Eventually it dawned on him, “This has just messed me up so badly. I didn’t realize.”
He was told at the time that it was really only a matter of time before he’d be having trouble with the left leg.
At this point, his troubles with Medicaid found something of a resolution. He was told about something he’d never heard of — a Miller Trust.
Basically, if he put away a certain amount of his Social Security in a trust, which could only be used for expenses relating to his disability, that $28 roadblock between him and Medicaid would be removed. He quickly set up a trust, named his wife as executor, and got his insurance back.
Which is good because he wasn’t done with doctors yet.
In August, 2007, White had abdominal surgery to try to fix blood-flow problems now cropping up in his left leg. That was followed up two months later by surgery on the leg.
Finally, in January, 2008, doctors removed his remaining leg. This time, he said, it was easier.
“I had time to do everything I could to prepare myself for losing my left leg. The right leg was a little bit of a surprise,” White said.
These days White keeps upbeat and active. Among the devices he’s rigged up is a chair bolted to a snowboard he’s thinking he might try and use for sledding.
And he’s got a sense of humor about life as a paraplegic.
“I went to the doctor’s office for the first time after having both legs gone and the nurse is standing with her back to me asking me the standard questions that they ask and she asked me how tall I was and the thought had never occurred to me that I’m not as tall as I was,” White recounted with a laugh.
He said he replied that he wasn’t sure but could tell her how tall he used to be. When he got home, he laid out on the bed and had himself measured — 47 inches.
“I lie about myself to make myself sound sexier. I tell them I’m 48 inches, four feet,” White joked.
He also shared the story of a marital spat he’d recently had with his wife after he’d left some dishes out in the kitchen.
“She was just giving me a hard time and she finally said, ‘There’s nothing wrong with you, your legs aren’t broken,’” White said.
Sherry remembers that incident as well.
“I told him to get off his ass, his legs weren’t broke,” Sherry said. “He starts cracking up laughing and then it hit me.”
White said at bars everyone is his friend. The biggest, meanest, maddest drunk will lighten up when he cracks a joke.
Sherry said the family still gets out, goes fishing at Knik Lake or plays games indoors.
Aside from rigging his home, he’s gotten used to using the wheelchair he was able to get through Medicaid. It took awhile. He spent a lot of time borrowing manual chairs and walking on his fists.
He wishes he had something a little more capable, especially where he lives when the spring thaw turns his yard to mud.
“The state said, ‘OK, we’ll get you a wheelchair,’ and they got me a sports car when I needed an old Suburban.”
Sherry said having a husband without legs and living off Social Security has been hard on her and on their sons.
“They can’t go out and do things like the rest of their friends. They can’t go to the movies, they can’t go anywhere,” Sherry said.
She said she’s lost it a couple of times, but never in front of Jim or the
And she worries about what’ll happen if Jim gets a cut that becomes infected. Doctors have said he’s at risk of losing another limb if something like that happens.
“If that starts happening I think Jim will lose it. He’s got to be able to work with his hands. There’s just no other way,” she said.
But talking to her, it’s clear she loves Jim.
“He will do anything he can for anybody. He will give them the shirt off his back. Sometimes that aggravates me,” she said. But, “He’s a great man.”
They’ve known each other for 15 or 20 years and have been married for more than 10. She laughs as she tells the story of how they met.
“I was shooting pool one night, I used to shoot pool all the time and he came into the bar and this wannabe cowboy comes up and grabs me by the ass,” she said.
Sherry wasn’t going to tolerate that.
“I turned around and unscrewed my pool cue and was ready to cold cock him with it and Jim grabbed it,” she said.
They were fast friends after that.
White sometimes wonders if he shouldn’t move a little closer to town. But he can hardly stand the idea of leaving his five acres. He grew up in Anchorage and the Valley, spending quite a few years out in Knik. His family got the five acres by homesteading.
But, more than sentimental considerations, he enjoys the freedom of living where he does. He loves the idea that he can go moose hunting in his backyard and doesn’t think he could live in a place where he has to worry about neighbors.
Sherry is right with him on that score.
“It’s a long ways to drive but there’s nothing like the wintertime up here. It gets extra cold up here but it’s absolutely beautiful.”
She recounted recent sightings of foxes and owls. The bears show up as well.
“I can out shoot my husband so that’s not a problem,” Sherry joked.
But while he remains upbeat, White does get serious when talking about his Miller Trust.
“If I had known about the Miller Trust I could’ve had it set up back when I had those three surgeries in one month,” he said.
If he’d had it in 2007 when he started his surgeries, White said, he wouldn’t now be facing a debt of $36,000, mostly in the form of a judgment Alaska Regional Medical Center won against him.
“When you get to a point where you have to go to the system and say, ‘I need some help here,’ the system, Medicaid and Social Security, it’s so complex you have to have someone guide you through it,” White said.
And nobody told him about it.
“I really feel that the system should have had the moral obligation,” to let folks know about the trust, White said.
The money he owes is more than his five acres and 49-year-old trailer are worth.
He’d been talking for years about building a three-bedroom, ranch-style home on the property. But he wanted to build it himself, out of pocket, without going into debt with a mortgage.
He said his father always told him to go the mortgage route. Now, he’s even happier he didn’t listen.
There isn’t an immediate danger of losing his home, but he’d planned to hand it down to his kids.
“I worked all my life and I got this here,” he said.
Editor’s note: This is the first of a two-part series examining the life of Jim White, who lost both legs to Peripheral Degenerative Vascular Disease. See part 2, “Battling Bureaucracy,” in Tuesday’s Frontiersman.
Contact Andrew Wellner at andrew.wellner@frontiersman.com or 352-2270.
Comments
3 comment(s)james freeman wrote on Feb 8, 2009 3:44 PM:
Becky Henry wrote on Feb 8, 2009 9:45 AM:
Spankles wrote on Feb 8, 2009 9:04 AM: