My Right Foot

Gordon McGuire's becoming a role model for the severely disfigured. But he's by no means any sweet-natured Elephant Man type.

There, he put a down payment on a house, started doing and dealing meth again and soon once more had a house full of prostitutes and drug addicts. On the street, he was considered "the nice little handicapped guy who would take in anybody," he says.

He rented his garage to an older woman who, he soon discovered, was one of the area's biggest heroin dealers.

McGuire started sleeping with one of the prostitutes, Rhonda, who was a friend of Sherry Latham's. Rhonda even took McGuire to meet her family, who, he says, "pretty much ran the drug and whore trade in the area."

Gordon McGuire with his new foot and his new dog Doogan at McGuire's mother's house in Paradise Valley.
Irvin Serrano
Gordon McGuire with his new foot and his new dog Doogan at McGuire's mother's house in Paradise Valley.
Gordon McGuire at age 3.
Gordon McGuire at age 3.

That relationship soon fizzled. After McGuire started dating a new prostitute, someone set his house on fire. This was becoming a pattern. He assumes it was the old girlfriend or perhaps someone in her family.

After the arson, he again moved back up into the mountains, this time into a shack with no water or electricity.

It was 1999.

McGuire's feet were swelling and getting infected more often by then. He tried to fashion footwear out of size 20 Nike basketball shoes by cutting off the ends and stuffing them with newspaper. But the ulcers kept appearing.

Alone in the squalor on the mountain, his feet became so infected that antibiotics and speed no longer worked. McGuire was dying. In agony, he finally drove down to an emergency room in Riverside, California. He spent several weeks in the hospital as doctors tried to get the infection under control.

While bedridden at the medical center, his mother invited him home. She was alone again. Her second husband, with whom Gordon didn't get along, had died earlier that year.

"I was just spent," he says. "It was time to start over."

It was late 2000 when he arrived back in Paradise Valley. He had stopped using methamphetamine and started a hunt aimed at trying to heal. He wanted to better understand his body. But it would be three more years before life became anything resembling normal.

In 1996, during one of McGuire's hospital stays, doctors had done MRIs on him.

The images that came back showed hundreds of small white dots throughout his body.

They didn't know what the dots were. They didn't want to cut into him to find out. At that time, McGuire didn't really care.

Back in Paradise Valley, McGuire did care. He began seeing local doctors, whose main goal was to keep his infection and pain under control.

He was placed on antibiotics and given several different narcotic painkillers. Some worked, some just made him queasy and disoriented. McGuire also began taking the muscle relaxant Ativan.

At the same time, he searched the Internet for information about his condition. He talked his mother into getting a new computer and a high-speed cable line.

One night, he decided to rent a video of the David Lynch film The Elephant Man. In the movie, a doctor referred to Joseph "John" Merrick's deformities as a complication of something called "Proteus Syndrome."

McGuire remembered that name from a conversation a decade earlier with one of his California doctors. Looking at his feet, knowing what his torso once looked like, McGuire believed that whatever afflicted Merrick was most likely what afflicted him.

Only about 100 cases of Proteus have been recorded. Doctors still debate if Merrick had Proteus, or if any or all of those cases involved the exact same disease.

That doctor had also mentioned a disease called Klippel-Trenaunay. And there was Parkes-Weber Syndrome, or more vague terms such as neurofibromatosis.

In 2001, as McGuire searched the Web, he found only about a dozen sites that vaguely referenced diseases that seemed to relate to his body.

At that point, McGuire and his doctors were stuck. Maybe he had some mix of all these maladies. Maybe he had a unique one.

As McGuire and his doctors pondered that larger question, McGuire began searching for answers to what seemed like a simpler issue. His right foot had become so swollen and infected he could no longer walk.

He wanted to be able to walk again.

By 2002, he was essentially a shut-in at his mother's house. He figured that finding shoes that were molded to fit his feet would be the answer.

Complicating the issue, though, was the fact that the shoes had to be built with his entire body in mind. He walked differently from anyone else, his weight was distributed differently.

He began e-mailing shoe companies for help. His insurance providers told him they wouldn't pay for the shoes. He was out of money; his mom and dad, no longer together, were struggling financially. Not only could he not find someone to make the shoes, he couldn't afford the thousands of dollars such a unique effort would probably cost.

After the small New Times story about his search for footwear in 2002, he began receiving calls. Ripley's offered shoes if it could film the process.

As McGuire began planning his trip to Colorado for new shoes, though, his life was falling apart. Again.

He was growing increasingly angry with physicians around the country who he believed were offering no help. In ranting e-mails and phone calls, he accused them of grossly overbilling children with diseases similar to his, and in one case, he even accused a doctor of killing three young patients because of hubris and incompetence.

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