St. Petersburg Times: Special report

Intro

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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

'I'm different'

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Life without legs meant adjusting to life on wheels. Doing a load of laundry was simple compared with the challenges of reaching items on higher shelves, getting in and out of his car or using a public toilet.

Jim came home after five weeks in the hospital.

Phil and Pete, a couple of handymen he knew, had modified his house for him while he was gone. They knocked a hole in a wall of the living room to accommodate a mechanical lift. Like something on a loading dock, the lift enabled Jim to get from the garage level up about 3 feet to the floor where the living room and kitchen were.

They disconnected the chains that suspended the circular bed from the ceiling in the downstairs bedroom. They bought him a new king-size bed and put it in a corner of the dining room.

They laid a plywood track on the wall-to-wall carpeting so he'd have an easier time rolling his wheelchair.

They hid his gun and the kitchen knives.

Steadily, Jim mastered the techniques of daily living: how to go to the bathroom by sitting backward on the toilet, how to turn on the shower without scalding himself, how to clean up spills on the kitchen floor by pushing around some paper towels with the end of a broom, how to use a pair of long-handled pincers to grab his cereal from the shelf without poking holes in the box.

A week passed before he left the house.

He bought a used car and got it fitted with hand controls -- press down to accelerate, forward to brake. The guy who did the work was a double-amputee also. He told Jim to forget about artificial legs. Get a good chair and get a life, he said. Jim told him he'd walk within a year. In the meantime, Jim decided reluctantly to use a motorized scooter to get around.

He was mostly on his own. After Jim returned home, his relationship with Ivonne resumed the same wary distance from before the accident. Ivonne was concerned for Jim, but she didn't doubt that he'd be okay. Ivonne knew Jim tended to see things in stark terms -- unqualified successes and cataclysmic failures -- but she knew as well that his mood swings couldn't override his innate stubbornness. He would not quit.

* * *

One day Jim went to talk to his doctor. He told him he could not imagine life without walking.

Without legs, he could not fly his plane that now sat unused at the airport. Without legs, he could not live in Paris. Without legs, he could not be attractive to women.

Without legs, he could not be Jim Miller.

This is what the doctor told Jim:

People with above-knee amputations of both legs often find it difficult to use prosthetic legs. A man who loses one leg below the knee has it hard. A man who loses one leg above the knee has it harder. But a man who has lost both knees requires so much extra energy it makes him feel he is carrying almost double his body weight.

How many of them walk again, Jim asked.

Fifteen percent, the doctor said. Some patients try to wear legs, but imagine carrying that extra weight while balancing on your knees.

I'm fit for my age, Jim said.

The legs are expensive and cumbersome. Patients get frustrated and they put the legs in the closet.

Don't tell me about people who aren't walking, Jim said. I've always been successful. I'm going to be walking.

Go ahead and try, the doctor told him. If it works, wonderful. If not, try to accept your situation. Some people prefer using a wheelchair.

I'm different, Jim said.

But weeks and then months passed and Jim didn't walk.

He'd visit the doctor and they'd talk about how his legs were healing. They'd talk about the pain in his stumps, caused by growths on the cut ends of his nerves. They'd talk, too, about the pain he felt in parts of his legs that didn't exist anymore.

This phantom pain was a chronic problem for Jim and also one of the least well-understood medically. Nearly every amputee experiences some kind of sensation in the missing limb -- everything from mild pressure or warmth to stabbing pain and cramping. In Jim's case, it felt as if the top of his shoe were cutting into his ankle bone.

The pain diminishes over time for most patients. Chronic sufferers, in particular lower-limb amputees, report excruciating pain when they urinate or have sex. The brain's sensory centers for the feet and the genitalia are adjacent, but why an amputee would experience crossover sensations is not known.

Just as theories differ as to the cause, no consensus exists on treatment. Jim's doctor prescribed Neurontin, an antiseizure medication used by epileptics. The Neurontin was not without side effects, one of which Jim believed robbed him of his mental acuity.

He could not give up the Neurontin, but he began to cut his pills in half, taking just enough to manage the pain. His head cleared some. As it did, he began to wonder, where's the program to get me legs?

Then he got scared. There was no program.

* * *

Prosthetists had approached Jim in the hospital. He didn't hear them talk about whether he would walk or not. All he heard was a product pitch. So he brushed them off like door-to-door salesmen.

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Jim and Giselle cuddle while he reads a Dr. Seuss story. Jim worried constantly that walking was necessary to be a good father, but the time it demanded was time he sacrificed with her.

Once he was out of the hospital, though, prosthetists didn't come to him anymore. He had to look for them. He worked briefly with two prosthetists in St. Petersburg, but neither of them could help.

Eventually Jim was referred to a man in Tampa. Bill Copeland was a smiling, solidly built fellow and Jim hit it off with him immediately. Jim paid him $10,000, money his attorney advanced him from the anticipated proceeds of the lawsuit against the drivers in the accident.

Bill's career as a prosthetist began more than 20 years ago in Oklahoma. He had lost his left leg at the knee when it was crushed by a steel rail he was loading onto a flatbed rail car. Watching his own prosthetic leg being made was almost like going to trade school.

The first thing Bill did for Jim -- apart from a few chores such as cleaning his pool -- was make plaster casts of his stumps. The casts looked like fragments of a Greek statue. Bill used them to shape the sockets for a pair of legs.

Bill knew the legs probably wouldn't work. He could tell by feeling the ends of Jim's stumps. Each had a mass of bone the size of a grapefruit, far bigger than the normal width of the thigh bone.

Sure enough, Jim couldn't wear the prosthetic legs for more than a few minutes without wincing in pain. Bill told Jim he probably had bone spurs, sharp growths of calcified bone that were poking every which way. They're like corkscrews cutting into your muscles, he said.

You'll never get legs that fit, and you'll never walk in prosthetic legs, he told Jim, unless you get surgery to remove the growths. If you get the surgery, we'll make a new pair of legs with the same $10,000, Bill said.

Bill told him about a surgeon named Jan Ertl.

He showed Jim an article in a trade publication.

* * *

Jim began to understand what had happened in the hospital.

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For general surgeons such as the emergency room doctor who treated Jim, Zollinger and Zollinger is the reference book of choice. Need to know the procedure for amputating legs? It’s on pages 466-468.

It was called a guillotine procedure. A French term for a no-frills surgery that looks about the same in any country.

Dr. Kevin Hirsch, the emergency surgeon on call the day Jim got injured, had performed his share of amputations in 17 years in emergency rooms. What he did to Jim's legs was straight out of Zollinger and Zollinger, the illustrated textbook of surgical procedures that is the bible of general surgeons. Pages 466-68; Plate CCXXI; Amputation, Supracondylar.

In the emergency room, Hirsch had done a quick amputation of Jim's legs, cutting through the knee joints just to stabilize him. Then, in an operating room, he had cleaned the wounds aggressively, trying to wash out even the tiniest fragment of the obliterated bones. He left the wounds open, loosely bandaged, for four days while Jim's condition improved to the point he could handle a second operation.

In traditional amputation surgery, the endings of the large nerves and blood vessels are tied off. If the cut bone is sealed off at all, it is done with wax, which is what Hirsch used. Sometimes the quadriceps muscle is pulled over the cut end of the bone and sutured down to create a pad on the end of the stump. Hirsch used that method. Sometimes surgeons simply cut the muscles and leave them slack inside the stump.

Jim was among the unlucky 10 percent of amputees who develop bone spurs, which form when bone-growth cells have a blood supply. If the cells are outside the bone when the blood reaches them, then that's where they grow.

Jim read the article Bill had given him. He discovered that Jan Ertl used a different technique, one that had been developed in the 1920s by his grandfather, a Hungarian surgeon, and later refined by his father.

The technique emphasized the need to seal the end of the femur biologically using the periosteum, the sheath of tissue that wraps around healthy bone. The point was to restore blood flow to the whole bone to prevent decay. Ertl emphasized, too, the need to restore tension to the four major muscle groups in the thigh by sewing the muscles to the bone and to each other.

Jim was certain the doctor at Bayfront had saved his life with a textbook procedure that met the standard of care. Still he questioned why Ertl's technique was not more commonly used. Was it because it was more costly, Jim wondered.

The United States, alone among the large industrialized nations, does not provide universal health care for its citizens. The marketplace economics work in the marketplace, Jim said many times, but profit margins have no business determining who gets care.

It surprised me sometimes how much angrier Jim was at this faceless system than the two drivers who had caused his accident. But this anger also seemed to fuel him.

Jim asked local surgeons if they would do an operation based on Ertl's principles. Never heard of him, one said. Too exotic, said another.

A return to Paris

Jim felt stuck, so he flew away.

In the middle of July 2000 he boarded a flight for Paris. He was alone and apprehensive, but he was thrilled at the prospect of returning to the city where he had been so happy. Of the many agonies Jim suffered after the accident, being estranged from his family was the worst. But being apart from Paris was nearly as bad.

Jim arrived at Charles de Gaulle Airport just before Bastille Day, the national holiday, with no baggage, but weighed down with doubts -- little things such as whether his wheelchair would fit in the taxi, and much scarier things such as whether the city he revered would shun him.

This was a city, after all, that had set the standard for Western beauty and sophistication. As the taxi rolled along through the streets, Jim didn't see a single person in a wheelchair. He thought he was the ugliest thing the eye could see.

Jim made his first stop L'Avenir, a restaurant near his old apartment on Rue Blanche. When his taxi pulled up, the two owners were standing in the doorway, one wiping his hands on his apron. They saw Jim through the taxi window and waved. Then Jim opened the door and swung his stumps out. He watched as the men stared back at him, at first glassy and uncomprehending, and then shocked. One of them sagged against the other and retreated inside.

Jim lost his nerve. He pulled the taxi door closed and told the driver to keep going. The driver said nothing. Truly kind, Jim thought.

There were moments of surprising joy, though. One night he got swept into a pack of inline skaters and he careened through the streets in his wheelchair, thrilled to have been accepted as part of their group.

Toward the end of the trip, Jim talked to an orthopedic surgeon. The doctor mentioned two American surgeons he considered qualified to operate on Jim's stumps. One was a doctor in Sacramento, Calif., named Ertl.

Jim understood that to be happy in Paris, he needed legs. To get legs, he needed to get to Ertl.

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