My Right Foot
Gordon McGuire reaches into the back of his mother's fridge and pulls out the front part of his right foot. After eight months in formaldehyde, the skin on the body part is ghostly white. The piece of foot is the size and shape of a turkey wing. The skin is mummified and feels like jerky.
"I saved it figuring some clinic or somebody might want a bone sample or something," he says with a smirkish grin.
He is clearly saving it mostly for its gross-out factor.
But the piece from the front of his foot emerging from the fridge is less startling than seeing the same chunk of extremity, swollen and maroon from infection, coming out of his boot two years earlier. Or, several months later, getting scalpeled off his foot during surgery.
This is just one of the downsides of having Proteus Syndrome (thought to be what the Elephant Man suffered from) or whatever it is exactly that afflicts Gordon McGuire and a few dozen other people like him on Earth.
Today, the remainder of McGuire's right foot, devoid of ulcers and sharp edges, looks like a healthy, sturdy peeled potato. At 43, McGuire can finally walk on his right foot without the blinding shocks of pain that could only be relieved by a self-prescribed addicts' levels of pot and meth.
It's the first time in a decade that pain and trying to mitigate that pain and lashing out because of that pain haven't filled his brain.
Which is the part of his body -- for the people who know him or have had to deal with him -- that's usually the most startling.
That's because Gordon McGuire has never been Oscar-worthy in the role of the lovable special-needs guy. He's not the Elephant Man, the boy of Mask or the guy My Left Foot was based on.
He is more often blunt, vulgar, wicked, hilarious, philosophical, bizarre, brilliant, sex-starved, drug-starved, road-weary, love-crossed, pissed-off and only occasionally heroic.
And this is a problem, since McGuire, in his journey to walk again, has become, through his own Web site and some national exposure of his plight, something of a leader and spokesman in the world community of malformed people. And he is beginning to feel like he's finally found his calling, a chance to put aside the deep anger and put to work the deep faith that has kept him alive.
And this is a problem, because, in these more sensitive modern times, people seem to want their severely handicapped to be cuddly little animals.
But Gordon McGuire is not an animal. He is a human being.
Not to say that he can't play cuddly for the camera. You may or may not remember Gordon McGuire from an episode last year of Ripley's Believe It or Not.
Ripley's producers called McGuire after seeing a short story about his search for shoes two years ago in New Times. Though Gordon's right foot has always given him by far the most trouble, his left foot is large and misshapen as well.
If you were to believe the Ripley's show, McGuire's life has had a simple arc. He was a meek little cripple locked up in his mom's house until the benevolent folks at Ripley's paid for a trip to Colorado for him to get a free pair of specially engineered shoes that sent him skipping down the road to a happy adult life.
"What a crock of shit!" he snarls recently.
In fact, the shoes sucked. After a few hours in them, he felt less pain walking barefoot.
The Ripley's producers did more exploiting than paying. During the segment, for example, canned video of an airplane flying had a voice-over bragging that Ripley's had paid for the trip to Colorado.
"Yeah, they paid for the gas for me to drive there," McGuire explains. "And the drive hurt like hell."
McGuire described during filming how his misshapen feet once caused him to fall outside a cab and how the cab driver told him he "looked like a tree falling." On the segment, his story was accompanied with the sound of a tree crashing to the ground.
"Nice touch, huh?" he says.
During filming, he was asked to react several different ways to the same question. The editors, he was told, would decide later which reaction worked best.
The owner of the small company that built the shoes later opined to McGuire that it sure would be nice if he helped defer some of the costs of making the shoes.
Most disturbing, though, was that fraudulent story line.
McGuire was honest about his sometimes sordid past: the accident that set off his decline, the drug dealing, the hookers, the religious pastoring to sex cultists, the two times his house was burned down, the problems of shifting back from street drugs to prescription narcotics, the DUI, the father he sometimes loathed, the stepfather he was happy to see die, the jail time, the stops in the nut house.
This is not to mention his opinions that most doctors are thieves who care -- if they care at all -- only about finding a way to help mothers identify children like him during pregnancy so they can opt for an abortion.
The producers didn't like that story.
So they depicted McGuire as the sad but affable shut-in who had never been able to drive a car because of his giant, malformed feet.
"For Christ's sake, I was a driving instructor before the accident," he says. "Come on!"
All that said, McGuire still considers the Ripley's segment a positive step. The national exposure brought e-mails and inquiries that have helped connect him to a burgeoning Internet community of people with similar vascular problems and deformities. The show helped lead him to the real solution for much of his foot pain -- radical reconstructive surgery.
Perhaps the biggest benefit, though, came close to home. Many of the people who knew him, and many of his mother's friends and fellow churchgoers, had no idea about the extent of McGuire's medical problems. Most, to be honest, considered him a cranky screw-up who had returned to his mother's house in Paradise Valley three years ago to freeload.
"It helped so much in that people in our lives now have an idea of what a battle this is," he says. "It's amazing how much better things are when people in your life don't think you're a total loser."
He can't blame folks for not knowing. Many hadn't seen him since he graduated from high school.
Back then, he was a bull, a football player and wrestler who, along with his parents, made every effort to act as though he wasn't different. His body would swell and ache, but it always youthfully rebounded.
His parents never talked about the scar across his torso or the fact that his feet were just the tip of a medical iceberg. The family ran with the idea that if Gordon were treated as a normal child, he would be treated normally and grow into a normal adult.
How long that adulthood might last, or what it might feel like, seemed like unanswerable questions better left unasked.
The downside of this approach is that McGuire was ignorant of his own body, a body that doctors who saw him at birth were pretty sure would self-destruct by adulthood.
Gordon McGuire was born in Denver, Colorado, in 1960. Darrell McGuire didn't know what to think of his newborn son. Some people in the Baptist church still considered a child like this to be a curse from God. Had Darrell McGuire done something terribly wrong?
The baby's feet were badly misshapen. More startling at the time was the large mass protruding from his torso.
The baby lived, but at age 3, the gigantic lump on the child began bleeding internally. Doctors had no solution but to cut the thing off. The surgery took seven hours, and doctors told the parents that the toddler very likely would not survive.
In time, though, the boy returned to full health. Which left his parents with another painful decision: What should they do about those feet?
"Looking back now, it probably would have been best to have them amputated," says Darrell McGuire, who also lives in Paradise Valley. "But at the time, with the technology then, you just couldn't trust that everything would work out. It was a horrible decision. And like a lot of decisions we made about Gordon, we just decided to let things be."
It seemed like the right choice through Gordon's childhood. Up through adolescence, he functioned pretty much as a normal kid. When he played football and wrestled, what he lacked in mobility he made up for in strength.
"He has always been amazingly strong," his father says. "Once you were in his grasp, he was going to win."
At the time, kids called him either "Bigfoot" or "Ogre."
"I was taunted quite a bit at the time, but it just didn't matter that much," he says. "I was able to sort of fight it off. And in a weird way, it gave you some amount of distinction."
After the television series Kung Fu came out, Gordon took up karate. By his high school graduation, his classmates were calling him "Bruce Lee." He could break seven one-inch boards with his punch. His message was clear:
Don't mess with me.
Beneath the tough veneer was a deep faith. To family and friends, he became less the tough guy and more of a natural preacher with a sweet heart, a strong, soothing baritone voice and a deep knowledge of the Bible.
As the McGuire family moved around the country because of Darrell's job, they always quickly connected with the local Baptist church. When they arrived in Toledo, Ohio, when Gordon was 12, they began working with a local preacher to start a new congregation.
"Right from the start, Gordon was a leader in our youth program," says the McGuires' pastor at the time, Harold Whitlock, who now lives in Oklahoma. "He was very popular and had this great personality. He wasn't handicapped as far as anyone was concerned. If someone asked about his feet, he just joked it off."
After several years in Ohio, the McGuires moved again, to Detroit, then Louisiana, then finally ending up in Phoenix after high school. But the family remained in touch with Whitlock throughout their moves.
As Gordon finished high school and entered college, Whitlock says he and Gordon's parents became more concerned about the boy.
"Even then, his feet and his body were beginning to cause him more problems," Whitlock says. "He was beginning to feel more ostracized and beginning to feel more pain. He was pretty quickly moving into a state of rebellion."
As his family headed to Paradise Valley, Gordon began his freshman year at Wayland Baptist University in Texas. In his second semester there, McGuire and several other students were caught smoking pot. He was suspended from the school for six months.
At the end of the suspension, he decided not to return to the college. He no longer wanted anything to do with the church. He instead moved in with his family in Paradise Valley.
"I pretty much lost track of him at that point," Whitlock says. "We've only just begun speaking again. I just feel like he was lost for so many years."
While in Detroit, McGuire worked at a machine shop. He spent much of his free time his last two years of high school in his dad's wood shop. He liked working with his hands.
When he moved in with his parents in Arizona, he started carving wooden train whistles. After he had made enough, he hit the road selling the whistles door-to-door.
He worked as a night stocker at a nearby grocery store. He also worked as a traveling salesman.
He attended junior college at Glendale Community College, then, later, at Scottsdale Community College. He studied hypnotherapy.
He was a good worker and a good student, but nothing ever seemed to lead to much.
As he approached his 30th birthday, McGuire began working with the developmentally disabled at the Phoenix Valley of the Sun School. He began dating a fellow counselor and, soon, the couple decided they wanted to get married, settle down and have children.
They both had always wanted to live in California. McGuire found a job as a package meat manager for a grocery store in San Diego.
Soon after he took the job, he was transferred to a store 60 miles north in Lake Elsinore.
"At that time, Lake Elsinore was pretty much the armpit of the Earth," he says. "It was the murder and drug capital of California."
Soon after that, he was laid off. Digging through the want ads, he found a driving school looking for instructors. After passing an instructors' course, he was soon teaching driving in Orange County in Southern California.
At home, he and his new wife worked at having a baby. But no luck. In short time, the newlyweds were spending much of their time arguing.
But work was going well. The owner of the small driving school in Orange County wanted to pursue a career in music. He soon began grooming McGuire to take over the business.
McGuire finally saw his chance to make something of his life, to make it in business. He was relatively pain-free and feeling good about existence as he was driving home from work the afternoon of January 20, 1993.
Around a blind curve, a newspaper reporter was making an illegal U-turn in a rush to get to a plane crash.
McGuire hit the reporter's car going 35 miles an hour. The impact of the collision drove the side of his seat up into his chest and side.
In the days following the accident, the pain inside McGuire's torso escalated. He could feel fluid pooling inside him. After several days, he felt a whoosh of fluid drop from his chest to his lower back, creating two fist-size lumps on his lower back. The pain spread throughout his body. His feet began to throb, his chest began to spasm constantly.
"It felt like a perpetual heart attack," he says.
"That was the turning point for him," his father says. "He was never the same after that. The pain just took him over. After that, his life was all about trying to deal with the pain."
Doctors didn't know what to do. As they ran tests, they discovered a body that didn't work like other bodies.
Arteries and veins were tangled, sometimes pumping blood to dead ends. Surgery seemed impossible because doctors would be cutting into the unknown.
The doctors in California ordered all of McGuire's medical records from around the country. McGuire was standing with the doctor when he opened the file from Colorado, which McGuire had never seen.
"The doctor looks at this picture and goes `whoa' and hands it to me," McGuire says. "I look at it and just stared in disbelief. I was looking at a circus freak. Then I realized it was me."
It was the photo of McGuire as a toddler, right before the giant growth was removed from his side.
"All I had known was the scar and the fact that my feet were huge," he says. "I had no idea how big that thing was. All of a sudden, it was clear that my whole insides were messed up with something."
One doctor mentioned a condition called Proteus. Another mentioned Klippel-Trenaunay. After a few months, McGuire didn't care what doctors were saying. He was in too much pain.
"I just pretty much ended up laying on the couch at home wondering if I was going to live to the next day," he says.
It would be another decade before his head was clear enough, or that he cared enough, to try again to find out what was wrong with his body.
Prescription medications didn't help the pain. He began smoking pot. Through his drug contacts, he began trying different street drugs as well.
By far, the greatest relief he could find came from methamphetamines.
"It was like the stuff made my body rigid enough to get the fluids moving again," he says. "I'd smoke that, then smoke pot for the pain and that would get me through the day."
As he floundered, his wife became increasingly frank about her feelings about him and his body. She started calling him Mr. Hump and making fun of his labored walk and huge feet.
"That was the first time someone's comments really hurt," he says.
He couldn't work. He lived off money from his father and, later, money from social security and $60,000 from the accident settlement. He sold just enough drugs out of his house to pay for his own habit.
After his wife left him, McGuire's home became a pad for local drug addicts and prostitutes. And in time, he became a sort of father figure and sugar daddy in the Lake Elsinore underworld.
He was known as "Hippity-Hop." And it's a wonder Hippity-Hop managed to survive.
Sherry Latham's body was found July 4, 1991, near a campground outside Lake Elsinore. She had been bludgeoned and strangled. When she was found, her hand was clutching brush as though she had tried to crawl to a nearby road.
She was one of the 19 prostitutes killed by William Suff, who became known as the Riverside Killer.
In a true crime book about the case, Latham, a 37-year-old drug addict, was described as having "drifted into lower-class trampdom and ended up a strangled corpse."
Her daughter, also named Sherry, had also drifted into drugs and lower-class trampdom.
That's how she met Gordon McGuire.
The younger Sherry was living across the street from McGuire with her brother and sister. She began spending time with him, something her siblings didn't like at all.
"They thought he was weird, and they thought he was rude," Latham says. "He'd always call me `bitch.' I thought it was funny; they thought it was disrespectful.
"And they knew he was a drug guy."
But Latham came to love McGuire. He was sweet, empathetic, smart and had a wicked, offbeat sense of humor. He listened as she talked about her twisted childhood. She would get him groceries when he couldn't move.
And he always had a means of getting high.
But sometimes, she says, the crank would make him verbally abusive. When he was high, she says, McGuire could be one of the meanest people she's ever known.
"He'd get ruthless, really vicious, especially if he was doing shit and not getting his way," she says. "I guess I understood why he could be such an angry person sometimes. I could get angry at the world, too. Some people couldn't deal with him. But I guess I understood him."
While McGuire was still married, a neighbor had offered to let him move into a small place the neighbor owned up in the mountains outside Lake Elsinore. The rent was $450 a year.
Which still was too much, McGuire says, since it was a doorless hovel miles off any main road. After enough time in the Lake Elsinore drug world, though, he decided he'd be better off alone up on that mountain.
So he moved to the rickety 1950s travel trailer with a batch of Chocolate Thai pot plants and little else.
Then he met the neighbors.
"So these guys come over and we start talking and it comes out that I have these plants," he says. "And they ask if I'm going to grow. They tell me I should because the guy before me had 200 irrigated growing sites on the land. I asked what happened to the guy and they say, `Oh, he was arrested.' So that scares me enough that I just give them the plants and tell them to give me a little when they mature."
The neighbors were also cooking meth for sale down in Lake Elsinore. McGuire was set.
But there was something odd about this loose community of drug dealers up on the mountain. They were all vaguely religious, all knew each other, all had numerous children and all seemed romantically involved.
McGuire had stumbled into one of the vestiges of the Children of God/Family of Love cult.
Started by former evangelist David Berg in 1969, the Children of God considered themselves "end time soldiers for Christ," believing in a new Christianity based on Berg's "law of love." At its essence, this meant that actions and thoughts could only be judged good or bad based on the nature of the motivation behind them.
Which entailed free love.
The cult was most notorious for its tactic of evangelism through sex, termed "flirty fishing," in which women were supposed to bring men to God by seducing them.
Cult members couldn't figure out if McGuire was a good neighbor or a federal agent, which he definitely wasn't. Female cultists were dispatched to do some flirty fishing.
"Five or six times a beautiful young girl would show up at my door [and say] she could only survive if I helped her," McGuire says. "It was always the same story: She needed to get out of some situation and she was going to kill herself if she didn't get some help. By the last few, I was like, `Well, maybe the world would be a better place if you weren't in it.' It just got ridiculous."
Latham says, "He got in with some pretty weird people up there."
Finally, an older woman showed up at his door. McGuire took a liking to her and they began living together. Much of the time, though, she seemed to be interviewing him. He would give his thoughts on the Bible and theology. She would then disappear for long periods. McGuire assumed she was off passing along what he had said to other cult members.
One night, she returned with a revelation. She told McGuire that cult members had come to believe he was the reincarnation of Zillah, who they thought was, according to the Bible, the first weapons designer for the Assyrian army. Zillah was actually one of the wives of Lamech, one of the descendants of Cain in Genesis.
"They didn't know what the hell they were talking about," he says now. "But it was still nice to be assigned a character from the Bible."
Neighbors began visiting him. They would talk deep into the night. Recalling his years proselytizing as a teen, he became a sort of pastor to the group.
Things on the mountain turned sour, though, when the woman decided she wanted her three children to move in with her and McGuire in his house. That led to a fight. She threatened to burn down the house. McGuire pitched her a bottle of rubbing alcohol, challenging her to do it. She stormed out.
A few minutes later, McGuire smelled smoke.
He went outside and discovered the rear of the house on fire. His girlfriend, sitting on a doghouse out back, blithely commented, "Looks like you've got a fire."
By the time the local volunteer fire department got there, the house and much of McGuire's belongings were gone.
So he got in his truck and headed back to his parents' home in Arizona. Where he was no longer welcome.
After a few rocky weeks with Gordon's parents, who were in the process of separating, Darrell McGuire suggested that his son go to Lubbock, Texas, to help his grandmother.
"She didn't need much help," Gordon says. "My dad just wanted me out of there. He had a new woman. I don't think I was part of his plans."
He went to Lubbock, where much of his extended family lives. He was surprised by the warm welcome, especially from one cousin and her female friend, Sonya.
Sonya, still striking at 52 years old, immediately latched onto McGuire, and within weeks they were living together.
Later, McGuire found out that his cousins had told Sonya that he came from a rich family and had recently received a large accident settlement.
"I was a sugar daddy, I guess," he says. "At first I just thought it was love."
Or lust. The couple would have sex several times a day, often spending whole days in bed. McGuire's body felt better. He didn't need the meth during his time with Sonya.
He later found a scientific study on the Internet explaining what he might have been feeling. Ejaculations, the study said, help keep lymphatic fluid moving through the body.
"I'm assuming it just helped keep all those fluids from pooling," he says. "Whatever was happening, it made me feel pretty good."
But his new girlfriend was also going through his money quickly. And in time, he came to find out that his lover had a checkered past.
One day at a park, McGuire struck up a conversation with a man walking his dog. The man said he worked at a nearby state school for troubled kids. McGuire told the man that his girlfriend had worked at the state school, too.
The man asked McGuire jokingly if his girlfriend was one of the women fired for running a prostitution ring out of the school.
The man described the ringleader of the group. He said the madam, a voluptuous woman approaching 50, would make her students scrub the bathrooms with toothbrushes.
Sonya had told McGuire about making her students scrub bathrooms with toothbrushes.
McGuire brought up the issue later during an argument, and Sonya came clean about her days at the school. Later, she bragged to him about having a black book "with all the sexual proclivities of all the town's leaders in it."
McGuire could deal with his girlfriend's being a notorious madam. But her spending was draining him, cutting into the nest egg he planned to use to move back to California and buy a house. When his savings dropped to $20,000, he left Sonya and Texas and headed back to Lake Elsinore.
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."
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.
A network of people he had been speaking to worldwide stopped returning his e-mails.
And he was increasingly alienating friends and family.
"He had become amazingly cruel and sometimes just crazy," his father says. "He just wasn't himself. Something was seriously wrong."
One night, in late 2002, McGuire visited his father's house. They began arguing. Gordon, his father says, went "totally crazy."
"He was just screaming all kinds of hate and filth at me, and to be honest, I was scared," Darrell McGuire says. "He's extremely strong, he can hurt you in a second. And he was just totally out of his head that night."
Gordon ran from the house, tore off his shirt and began screaming at passing cars as he swung his shirt in the air. Darrell's new wife called 911. It took three police officers to wrestle Gordon into their cruiser.
"He just looked at me like, `Why are you doing this to me?'" Darrell says. "It just broke my heart. But in the end, that arrest and his time in jail probably was the best thing that could have happened."
Since returning to Arizona, McGuire had turned to multiple doses of prescription drugs to fight the pain in his body.
"But the narcotics didn't work like meth and pot," he says now. "The meth would actually alleviate the pain. The painkillers just sort of separated your head from the pain. And after a while, it just took more and more to try to find relief.
"And all that time, I'm just getting angrier and angrier and crazier and crazier," he says. "It was awful."
The dangerous mix of pharmaceutical drugs and pot seemed to be exacerbated by the addition of Ativan, which McGuire was given to help stop the spasms in his chest and to fight off his anxiety. It was after he began taking the Ativan that McGuire says he started having what essentially were psychotic episodes.
Both his father and mother obtained restraining orders against him.
McGuire spent 10 days in jail. After his release, he ended up at a casino, where owners called police on him again. He was out on Christmas Day, 2002, after 10 more days in the clink.
He went to a friend's house, where he borrowed money for bus fare out to his aunt's house in Texas. There, he received a call from the Ripley's producers. There was a doctor in Baltimore, they said, who might be able to perform surgery on his foot.
He took a bus to the East Coast and met the doctor. The physician said he couldn't do the surgery because he didn't accept McGuire's insurance. McGuire then took a bus back to Paradise Valley.
During the trip, he had run out of his medications. It was the best thing that could have happened.
"It was the first time I got the Ativan and the other stuff out of my system," he says. "I was in a lot of pain, but my head was clearing. I finally woke up and realized that, yeah, I had been going nuts. I had to get off the drugs. It was time to truly start over."
By the time McGuire's quest for shoes was filmed by Ripley's in August of last year, he was beginning to get his life back in order. And during that time, he finally found a local Valley surgeon who could perform the surgery and who would accept his insurance.
Dr. Stanley Graves performed the surgery on McGuire's foot at Scottsdale Healthcare Shea last September.
His mother invited him back home to recover.
His new physicians have changed his medication. He went on a much more effective mix of less toxic drugs.
By Christmas of last year, McGuire and his parents were beginning to see a new future for him.
"I just kept praying that God would turn it around, and He finally did," says his mother. "I'm just ecstatic. This person I love so much is here again."
McGuire sits in a lounge chair in the living room of his mother's house. A laptop computer is on a table beside him. His new foot rests on a stool.
He pokes at the bottom of the extremity. No pain. The tissue is still too spongy for long walks, but it is slowly firming up.
Doctors figure that in a year, the foot should function pretty normally.
He also has appointments in the next few months to meet with a geneticist and other specialists, with the goal of finally getting a definitive diagnosis of his condition. He still, for example, has no idea what those hundreds of white dots in his body are about.
But he has already begun walking again. His father helped pay off a DUI in California, so he is able to drive again.
He is attending church with his mother. He has developed considerably different ideas about Christianity than hers, but they agree to disagree.
In the last six months, McGuire has become increasingly active with several support groups around the country. He talks with dozens of people with similar diseases each week through Internet chat rooms. He receives moral support. He often offers advice.
He passes on information about doctors, about insurance, about drugs, about depression, about raising the money it takes to find help and answers.
And this, he says, seems to be his calling. The moral support now exists for people like him. But there's still no centralized national or international fund-raising effort to create the foundation needed to assist families with huge medical expenses associated with very rare deforming diseases like his.
Through numerous telephone calls, Internet letters and several trips to support group meetings around the country, McGuire has positioned himself as a de facto spokesman for people around the world with rare deformities who fall through the cracks of current medicine.
After the Ripley's spot brought him notice, McGuire also began a Web site, www.handycapped.com, which includes the Ripley's segment, video of his foot surgery and information and links to other sites where people can find information about similar diseases.
In a few weeks, McGuire and his mother will be traveling to a meeting of Klippel-Trenaunay experts in Minnesota.
The main goal, they say, is to learn more about fund raising and about establishing trust funds.
"Moral support is one thing, providing actual financial and medical support is another," he says. "That's my goal: to somehow help create something out there that can actually help people live better lives."
His mother says, "I think Gordon is someone who from a very early age felt that helping people was his calling. He's rediscovered that calling. And I believe that's why he's still alive. I think that's why he's so full of life again."
E-mail firstname.lastname@example.org, or call 602-744-6549.
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