Her Argument for Amputation

By S.I. Rosenbaum | The Boston Globe | June 16, 2008

Here is Bonnie Denis: pierced and tattooed and dreadlocked, balancing on a pair of custom-painted, raspberry-pink crutches.

Here is Bonnie Denis's right foot: small and calloused and square, the arch bent outward, toes overlapping each other like windblown trees.

When she walks, it feels "like there are a bunch of knives stabbing me," she said.

So about three years ago, after a host of surgeries and years using a wheelchair, Denis, 30, made a decision.

The foot was coming off. She would find a doctor to amputate it.

But it was not that simple.

Doctor after doctor turned her away. The foot was "healthy," they said. The tissue was alive; blood circulated through it. Amputation was not absolutely necessary.

How do you choose, at 30, to amputate a limb?

***

Denis was only 3 years old when a rare virus, transverse myelitis, attacked her central nervous sys tem, leaving her temporarily paralyzed from the waist down.

She adapted quickly: "By 5 I was doing handstands on my walker," she remembered. But as she grew, the muscles in her feet atrophied and the bones grew crooked.

When she was in high school, surgeons invented a series of procedures to reshape Denis's feet. They broke bones and reset them. They implanted metal pins and took them out again. (She saved them in a jar.)

They even augmented her own bones with bones from cadavers, a fact that at first horrified her.

Now she thinks it is kind of cool: "I'm part zombie," she said.

The surgeries were never fully successful. And as Denis got older, her feet got worse - especially the right one.

It felt, she says, as if her body below the waist did not quite belong to her. As an adult, dabbling in circus arts with an urban circus troupe, Denis had trouble balancing. She was not taking the weight of her legs and feet into account.

Her right foot, she said, "is only part of me when I'm in pain."

When she was 23, her doctor removed a mass on her right foot that looked like a tumor. While she waited for the biopsy results, Denis reflected that she would not really be sorry if the foot had to come off.

The mass turned out to be just a knot of overgrown nerve tissue. But Denis kept thinking about it. With a prosthetic foot, she thought, she would at least be able to balance better. And the pain might go away.

"It could be a good thing," she remembers thinking. "It's never going to be a great foot."

***

To most people, the very word amputation conjures up images of surgery at its crude beginnings: a patient biting down on a rag, a doctor with a bloody saw. Even today, it is not a procedure many doctors like to advertise, said Dr. Nathan Seversky, president of the New England chapter of the American Society of Orthotists and Prosthetists. "They don't really love doing amputations," Seversky said. "It would be considered as a failure - perhaps they couldn't save the limb, they couldn't repair it."

Besides, Seversky said, "Surgeons don't want to be known as 'The Chopper.' "

When Denis went looking for an amputation, some doctors refused to consider it, she said. Others said that her history of nerve damage increased her risk of phantom pain after the amputation. Still others offered her painkillers.

The foot was not so bad, they insisted. It was not gangrenous, or shredded after an accident. She did not have cancer or diabetes. Why amputate?

Denis says she can understand the need for caution, but it infuriated her when doctors dismissed her out of hand.

"I was a real person, sitting in front of them with my own history," she said. She told a few doctors what she thought of their ideas about her body. Her foot might not feel like it belonged to her - but it certainly did not belong to them, either.

***

Denis's husband, Chuck Lechien Jr., 31, loves her feet.

"I think her feet are adorable," he said. "They're incredibly unique little feet."

He hates that they cause her pain. But they are attached to her, he says. "And I love her."

Now, at night, he tries to picture his wife with only one foot.

It is hard to imagine. But he is trying.

This spring, she finally found a doctor who agreed to do the amputation. She does not want to give his name. The surgery will be in the fall.

It is not that she does not have doubts, second thoughts. She worries people will think she is crazy. She worries that she will be a freak. She worries that it will turn out to be the wrong decision after all, and she'll still be in pain.

At first, Denis had all sorts of macabre, half-joking ideas about what she would do with the foot once it was taken off: Stuff it and mount it like a trophy buck. Encase it in plexiglass. Use the bones to make jewelry.

But then she found out that she would not get to keep the foot. After surgery, it would become medical waste. She would lose it completely.

She wants to mark her loss somehow, but has not figured out the details yet. Before a surgery, Denis always eats a special meal with friends - "a last meal," she jokes. When she had a knee replaced, her friends wrote a song. Somehow that does not seem quite right here. She and Lechien thought about getting a cake shaped like a foot instead.

She will be saying goodbye.

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