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Elephant Man

Lee McGuire as a toddler.

The toddler in the photograph beams as he rests his arm on the cantaloupe-size growth on his side. The doll-faced boy in the old print seems unaware that his body shouldn't look this way, that the growth isn't an armrest, that humans shouldn't have cauliflower feet.

Doctors in Denver chopped the growth off soon after the hospital photo was taken back in 1964. They fashioned the cauliflower into ersatz hooves. The boy was given a slight chance of surviving the operation and a slighter chance of surviving childhood. Whatever this disease was, it would surely kill him.

Thirty years later, in 1994, Lee McGuire found the hospital photo of himself. He had never seen the giant lump or his pre-surgery feet.

By 1999, McGuire's hooves had worn out. He returned to Paradise Valley from California and moved in with his mother. Loaded up on pain pills and barely able to walk, McGuire spent most of his time sacked out on the couch watching TV.

One evening, as he watched the History Channel, a documentary on the Elephant Man came on. The narrator mentioned that doctors now believe the Elephant Man, the wildly deformed subject of the classic movie, suffered from something called Proteus syndrome.

McGuire remembered a comment made by a doctor years before. McGuire thought the doctor had said pro-tirus, or pro-tirius -- pro something -- as the doctor looked at his body. McGuire limped to the computer and scanned the Internet for more information on the symptoms of Proteus. He was soon reading about himself.

What the world's best doctors have told him since then, essentially, is that he probably has the same crippling disease as golfer Casey Martin, which is extremely rare, mixed with the deadly, shape-changing disease of the Elephant Man, which is even more rare.

Basically, he discovered there is nobody on Earth like him.

"Whoopee," McGuire says sardonically as he sits on his mother's couch in Paradise Valley. "I'm the freak of freaks.

"I could have a lot of fun with this if I could just walk."

But McGuire needs shoes. More specifically, he needs biomechanically engineered shoes, unique shoes built to be a comfortable, solid foundation for a uniquely contorted body that wasn't supposed to live this long.

After a year of surgery and healing, McGuire is ready to get back on his feet.

The right shoes will cost thousands to design and make. McGuire will have trouble affording them if he can ever find somebody who can make them. His insurance probably won't pay for what he really needs.

What he really needs is help from a company such as Nike, which brags about having the most advanced biomechanics shoe-design lab in the world. Nike built Casey Martin's shoes.

McGuire wrote Nike asking if the company's researchers could help. He asked if they could at least look at photos of his feet and body and give some advice.

But while Nike tells us to "Just Do It," Nike told McGuire they just wouldn't do it.

And so it goes, and so it has often gone, in Lee McGuire's four-decade search for a pain-free life and a comfortable pair of shoes.

Whoever makes the shoes, McGuire admits, will have the challenge of their careers.

"First of all, this is just half a toe," he says, pointing a pencil head at his right foot.

"Now, the knuckle to it is over here. Follow? And these two bones over here are fused together. They're supposed to be separate, but they're fused together with this bony overgrowth stuff.

"Over here are the heads of two knuckles. Right under here are my two metatarsal heads.

"Are you freaked out yet?"

His left leg is three inches shorter than his right leg, which is supported by bones three times thicker than on the left. His leg bones meet in a misproportioned hip askew with his spine, which curls up between two large humps of something on his back. Doctors think the humps might be masses of capillaries, masses that, if punctured, probably wouldn't stop bleeding until he was dead.

Around that crooked frame, the laws of anatomy break down. Blood flows through him in odd ways, waste material is mishandled. There are unexplained lesions throughout his torso and a wall of some sort of tissue against his liver. Sometimes fluids move with too much pressure, sometimes too little. Bruises, blisters and sores all come and go within a different paradigm.

Only his head was spared the cruel metamorphosis.

So the head must deal with cruelty and pain. Instead of suicide, McGuire copes using his innate lust for life and a ferociously mordant, morbid sense of humor.  

He'll tell people he's an alien; then, as they laugh, whip out his feet at them. He once made money off kids at a playground by betting them he only had three toes. "I've always dreamed of selling my skeletal remains to Michael Jackson," he says. And don't get him started joking about his huge testicles.

"It probably would have been better if I was nuts or stupid," he says.

Instead, he was normal. Growing up, his mother and brothers were supportive, his father drove him to fight through adversity. He played football in junior high in Michigan, he made the varsity wrestling team his freshman year in high school. He wore bell-bottoms that hid his legs and feet. He bought cavernous Dr. Scholl's to hold his feet.

"I'd just hack them up a bit to make them work," he says. "Considering everything, I was actually really lucky. I couldn't do everything every other kid could do, but I could enjoy the subtleties of what I could do."

McGuire went to college in Texas, then headed toward California. As he aged, his body ached more and his feet began to swell.

In 1993, as McGuire was on the way home from his job as a driving instructor, he was T-boned by a local journalist rushing to a plane crash. The contour of the driver's seat slammed up into his side where the growth had been.

The blow triggered a cascade of excruciating complications. He spent the next year lying face down on a pile of clothes "absolutely amazed that I kept waking up in the morning."

McGuire's life spun out of control after the accident. He started using meth to stiffen his muscles and organs against the pain of pooling blood. He smoked pot to numb the ends of his damaged nerves.

His wife left him. He moved to Texas, where he lived for a few months with a 52-year-old woman he later discovered was the town's ex-top prostitute.

"Apparently, I had gone through $300,000 of sex by the time I left," he brags.

He moved back to Southern California, where the little house he bought with settlement money became a haven for druggies, prostitutes and bangers.

He just sat stoned amid it all, a sort of immobile Big Lebowski.

As money ran thin, he began haunting a local Nike outlet for shoes. He would buy size 18 basketball shoes for $10, then chop off three inches of the tip, pack the shoes with rubber pads and wads of cushioning, cut off the tongue and then sew the tongue over the fronts to make the shoes look somewhat normal.

He moved from the coast to the mountains, where he lived in a trailer next to his pot plants. When his feet swelled up, he used antibiotics he bought at a feed store.

Sometimes he could walk, sometimes he couldn't. By 1999, he was mostly immobile.

After seeing the Elephant Man documentary, McGuire began sending photos of his body to doctors and scientists. Soon, he was traveling to America's best hospitals. He visited NIH, then Harvard Medical. He found the most help at the Mayo Clinic in Rochester, Minnesota.

The mix of therapy, medicine and drugs has him in the least pain he's been in years. The hideous, relentless sores on his feet have mostly healed.

He no longer needs meth. He doesn't smoke much pot.

Now he wants to return to life. He is creating a Web site to help connect and inform families with children suffering from deforming diseases like his.

"I just want to make sure some kid doesn't have to face the same crap I faced," he says. "But are there kids like me? I don't know. Probably not in America because of ultrasounds. If I saw me on an ultrasound, even I would say, 'Screw it, get rid of it.'"

His fatalism yields to his impulse to help.

"There have to be others like me in the world. And I bet wherever they are, they're having one terrible, terrible life."

Beyond his Web site, McGuire would like to work. He once was a sales representative for a local company. He'd like to do something like that again.

But he'll need shoes. While doctors have helped repair and heal him, they have been much less successful, or helpful, in finding him shoes that will help him walk safely.

And it is clear, he says, that his insurance will pay for only one pair of these extremely specialized shoes. He admits that he may be a little greedy, but he was hoping to be like normal people who have different shoes for different tasks such as mowing the lawn, or going for a walk, or walking into a boardroom.  

Until a company or lab steps forward, McGuire plans to keep scanning the Internet and writing letters trying to find someone who can help him build the right shoes.

"It just seems like it should be a right that everybody should have a decent pair of shoes," he says. "At this point, that's all I want -- a decent pair of shoes."


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