St. Petersburg Times: Special report


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Bill Duryea

Day One:
Deciding to go
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Day two:
The way there
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Day three:
When you arrive
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Walking to Paris: Story by Bill Duryea,  Photographs by Bill Serne  of the Times

Pierre Laplume, a veteran physical therapist at the clinic, provided Jim with the one ingredient he believed was missing in St. Petersburg: expert training.

Two new arrivals

The walking room was filled with patients and their therapists when Schoenstein appeared with a pair of basic plaster etudes. No social pleasantries were exchanged as Schoenstein and Menager focused on pulling the soft liners onto Jim's legs.

"How do they feel?" Menager asked.

"Pretty tight," Jim said.

Since the surgery, the diameter of Jim's right leg had remained larger than his left. It was difficult to find a pair of elastic liners that fit the left stump without squeezing the right one.

Then Jim slid into the sockets and pulled himself upright with the parallel bars.

"How do you feel?" Menager asked.

"No pain," he said. "It feels quite good."

With the fit taken care of, and an easier donning system, all that remained was to turn these test sockets into final legs, a process that would be handled by the small manufacturing plant adjacent to the clinic. Schoenstein was confident the legs would be ready for Jim after the Christmas holidays.

But Jim returned to the center the next day convinced that the sockets he had pronounced pain-free hours before were now a problem.

The new sockets did not leave enough space for the rubber ends of the new liners. As a result, the liners bunched up, pulling the skin on his stumps.

"They are not actively painful, but uncomfortable," Jim said.

He drew Menager and Schoenstein a diagram, which Jim said Menager stuffed in his jacket pocket.

Schoenstein couldn't understand how these sockets did not fit when they came from the same molds that had been used to make the practice legs that Jim liked so much.

Jim believed the problem was not a lack of technical expertise. They don't respect my opinions, he thought. They're not used to being challenged by patients, and they don't like it.

Four days before the second anniversary of his accident, Jim prepared to fly home to Florida. He had covered a great deal of ground and spent a great deal of money during the past two years -- approximately $63,000 for surgery in Sacramento, $24,000 to Bill Copeland and another $12,000 to the French clinic (and that didn't include thousands of dollars in airfares, hotel rooms, meals and taxis).

But he boarded the flight without any legs to show for his efforts. He dreaded having to explain to his family that he was not coming home to stay.

* * *

Back in Paris in early January, Jim detected that Menager's demeanor had become coolly professional. Jim knew that he had a talent for rubbing people the wrong way -- he called himself "Mr. Diplomacy" -- and he regretted that. But he felt that confronting Menager had served its purpose.

Things were moving again, but his e-mails to me indicated it wasn't always clear in what direction.

Jan. 10: "A new type of liner has shown up and new sockets are in the works as we speak. I have faith in the whole thing as long as Menager is pushing it."

Jan. 21: "Major changes today. The new liners do not allow my stumps to descend into the sockets far enough. There is somewhere between a centimeter and 2 centimeters empty space at the end. (Schoenstein) is going to fill it."

Jan. 25: "Good news/bad news. I finally have sockets in plaster that fit well. The bad news is they think it will take another four weeks."

Jan. 29: "My new sockets are done and are being mated with the alignment devices. Thursday I will wear them for the first time. Exciting stuff for me."

Same day: "Each time I fall I suffer a real terror that perhaps I am really just in denial, perhaps all the people were right, and I should just get a good chair and get a life."

Feb. 2: "The left leg is okay for now, but it will need a bit of work before I can truly walk (for) long times in it. The right one still has a lot of space at the bottom and as a result pistons up and down when I walk with the sound of air leaking around the locking mechanism like a steam locomotive. This is a real roller coaster ride emotionally."

Jim flew back to Orlando on Feb. 4 to check on Ivonne. He stayed for six days before returning to Paris.

On Feb. 12, he tried on what everyone hoped would be the final version of the legs. Jim was satisfied. All that remained was to cover the apparatus with foam muscles and rubber skin.

On Feb. 13, to the surprise of the clinic staff, Jim flew back suddenly to Orlando to be with Ivonne. Her mother was ill and near death.

Two days later, Jim's legs were ready.

Ivonne's mother died five days after that.

In the middle of the afternoon on March 2, Marcelle Miller was born.

A few days later, Jim's legs arrived in an air freight box.

And that's where they stayed.

* * *

Pierre Laplume once said to Jim that his real success walking would come in the six months after he returned home. Laplume assumed that Jim would continue to practice. But days passed and then weeks and still Jim did not use the legs.

Instead, Jim decided what he really needed was a pair of shorter legs, something more like the stubbies Bill had first made for him. The shorter legs would be safer to use around the house, he believed.

Casting around for a local prosthetist, Jim had an unpleasant experience with a large outfit that had no interest in duplicating the French sockets. He then found a family-run business that finally agreed, after some cajoling, to forsake its computerized design system in favor of simply pouring plaster into the French legs. They were not perfect, but Jim felt more confident in legs with no knees.

Jim's quest for new legs confounded me. From my perspective, he seemed to be spinning his wheels, throwing more money at a problem he had already solved. I waited for things to settle down after the baby was born before I visited him in Orlando.

It was the middle of the afternoon on an uncharacteristically hot day in mid-April when I arrived. Jim seemed deflated.

"One of the biggest battles for me is the daily cycle," Jim said, his arms draped across the handlebars of his motorized scooter. "I get up and I'm ready to do anything. But by 3 in the afternoon my estimation of my potential has sunk to zero.

"There's a psychological component that's very hard to deal with. I liked the routine at the center (in Paris). I could get in there easily and know that I was going to do my hour and a half in the morning and another hour in the afternoon. Here there's no time. It's been five weeks since I have effectively walked."

Ivonne joined Jim in the back yard as he talked. She was carrying her sleeping daughter in a sling across her chest. She let Jim finish, and then she spoke up.

"You can't expect with a baby and a 4-year-old and a 13-year-old and a wife who's going through some things that you're going to have a window that's going to open up with nothing going on," Ivonne said. "If you put it off, it gets put off. My feeling is you should do it in spite of what's happening."

"But look at what happened," Jim said, referring to the minor scheduling crises of that morning.

"But you did it," Ivonne said, cutting him off. "You walked."

"I took a big chance," Jim said. "What if I'd fallen?"

"You did take a chance," she said. "But at least you got from 11:30 to 1. That's better than yesterday. It's not going to stop. There's always going to be something going on. If you want to do it, the opportunity is there. You've got to seize it in spite of everything."

Jim didn't say anything and soon Ivonne took the baby back inside. Some time later, while Ivonne was still busy with the baby, Jim returned to the subject. Out of her earshot, he had the last word.

"There is no time in this household," he said. "I don't think Ivonne accepts this."

But he put the legs on again anyway. For the second time that day.

It took him about 7 minutes from the time he rolled on the liners until he stood up.

He didn't even bother with the walker. He went straight to the canes.

He took a few laps though the living room.

Giselle giggled as she scooted between his legs.

He hung out in the kitchen for a while. He popped open the fridge, which has a route map of the No. 84 bus in Paris taped to it, and pulled out a couple of beers. He brought one to Ivonne in the bedroom.

Back at the stove, he stirred a pot of stew he'd cooked that morning.

For about an hour Jim was the 5-foot-8 father he had hoped to be.

He didn't fall.

Not even close.

"You know what?" Jim said. "This is going to work."

* * *

Why then did he not walk in them the next day or the day after that?

There seemed no explanation for this. Indeed, Jim had everything he needed to walk. He had good-fitting prostheses that he had gone to great effort and expense to acquire. He was healthy, and his legs, thanks to Ertl's surgery, were in excellent shape. Ivonne wanted him to succeed.

Weeks passed before Jim began to use his legs from France around the house. He said he was afraid of falling, but he never did. The more he walked, the more confident he became.

Jim had even demonstrated the benefits of the all-under-one-roof French system -- the value of having other patients nearby for support and a deep roster of in-house experts to consult on technical problems. His indictment of the U.S. system was less conclusive, given the existence of similar programs here. In the end, it was clear that the argument over which health care system was better had little to do with whether Jim would walk.

Jim had once told me, "I define myself by my ability to stick to things and get them done." At the time, he was talking about the 5 1/2 years he spent with his first wife building their 46-foot sailboat.

But where was that determination now?

For more than a year and a half, I had watched Jim's unorthodox and laborious journey. Several times I thought he would quit. Who could have blamed him? He had endured intense physical and emotional pain. Sometimes, the act of walking again seemed to promise only more of the same.

But Jim never quit.

Then why, after all that work, was he not using the legs?

Jim had three answers. The first was that he had no time. The second was that he was afraid to fall.

The third reason didn't have anything to do with his legs. It had to do with his life.

In the first months after the accident, Jim's motivation to walk had been a stubborn determination to prove the experts wrong.

In time, that stubbornness ebbed in favor of his belief that he needed to walk to pursue the life he considered worth living. That life was centered on Paris. To get to Paris -- to live in Paris -- he needed legs.

Later, as he reunited with Ivonne, walking became a necessity for the day-to-day functioning of his family.

But then, with the family together, he realized that goal was too abstract, or maybe not exciting enough. He said he needed a tangible dream, something that he wanted to leap out of bed every day to tackle.

"My greatest single challenge is psychological," Jim said. "Why do so many legs end up in the closet? Some people have badly made legs. Some have bad surgery. But I think the biggest reason is they don't have an objective. Once they get up on their legs, what have they got to look forward to?"

"I don't have it," he said. "I have to find a way to motivate myself."

Whatever that dream was for Jim, it certainly wasn't, by itself, walking. Just looking at those legs with their Superman-size thighs depressed him. What was the point, he asked himself, of all the extra effort it took to lurch around in them?

All along then, Jim's quest to walk had really been a quest for a reason to walk.

He had answered the question: "How do I walk?" But there was one more he hadn't anticipated:

"Why do I walk?"

* * *

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