03:50 PM CST on Saturday, February 21, 2004
By BRYAN WOOLLEY / The Dallas Morning News

MULLIN, Texas – People talking about Charlie Smith always use the same words. Tough. Strong. Dependable. Loyal. Proud. Stubborn. "Charlie's a mountain of a man," says his stepfather-in-law, Marshall Pyburn. "There's nothing he couldn't do or accomplish. Two years ago, he could whip a grizzly bear."

Charlie is 6-foot-4 and good-looking. His dark eyes are keen and bright. They engage the attention of anyone in his company. Two years ago, he weighed about 240 pounds. He was 25 years old then.

At Mullin High School, where he graduated in 1996, Charlie was Mr. Everything: quarterback of the school's district champion six-man football team, most valuable player, homecoming king three years running, Christmas prince, basketball and track star. He has boxes full of medals and ribbons and certificates and newspaper clippings. He made pretty good grades.

"He was a smart kid," says Marlene Shelton, the Mullin school superintendent in those days. "But like a lot of other boys, he probably could have done more if he'd wanted to."

As its motto, Charlie's class chose: "Living life to the fullest." Everybody says that's what Charlie always did. It required ingenuity.

Leader of the pack

In Mills County about 30 miles south of Comanche, Mullin is one of those dried-up little railroad towns that dot the Texas landscape. It peaked around 1910, when its population was 750. Cotton used to be the cash crop. Now it's livestock. Trains still scream through several times a day, but no longer stop. Most of the 175 people still living in Mullin are natives whose families have been in the town and the hilly country around it for many generations. A lot of them are kin.

"We rode 600 and 700 miles a night sometimes, raising Cain and never touching pavement. We'd chase down a coon and skin it. We'd build a fire. We'd go fishing in the bayou. Sometimes we'd drink a little beer. We had a lot of fun."

Charlie, Travis says, was the leader of the group.

"He's natural-born to it. You could bring people in from nine different states and put them in a bunch, and Charlie would get in the middle of them and he would listen to them and he would make stuff work. He's just like that," Travis says.

For Charlie and Travis, living the full life also meant working. Hard manual labor was expected in Mullin. It was part of being a man.

"Our dads and our uncles, they would come get us," Travis says. "One day we'd be building fence. The next morning we'd be out here gathering cows and penning bulls. The next day after that, somebody else would gather us up and take us to a job somewhere. Charlie and me, we was always working. If we wasn't riding tractors, we was hauling hay or picking up rocks. We chased down an emu that got out of a man's pasture. If somebody wasn't getting hurt or bleeding, we wasn't having no fun."

Charlie's parents, Jim and Jennetta, traveled the rodeo circuit. She was a champion barrel racer. He was a pick-up man for the bronc riders. They divorced about the time Charlie graduated. Jennetta remarried and moved away from Mullin. Jim drives a "bull wagon," hauling cattle, and is on the road nearly all the time.

Once when Charlie was a little boy, Jim tied his spurs together with baling wire under the belly of a calf. "You're going to stay on him until you break him!" he said. Later, when Charlie was a football star, his father roamed the sidelines at the games. "You damn pansies!" he would shout. "You look like cheerleaders out there!"

"The older men, they made us tough," Travis says. "They'd say, 'Don't baby them boys around. If they're hurt, get them fixed up and make them go on.' That's the way it was. If you was really hurt, you was hurt. But if you was just banged up a little bit, you'd better get up and go on. The worst thing in the world was disappointing your old man."

Tears are in Travis' eyes now. "Charlie's a good man," he says. "He's stubborn. He'll fight it out. He ain't scared of it."

What was happening?

One day in the spring of 2002, Charlie stepped out of the tractor-trailer rig he was driving for Mills County Stone Co. and slipped and fell on his back. Those who saw him laughed about it. But during the following weeks, Randy Moore, a driver who worked with Charlie, began to notice something strange.

"Whenever Charlie would go to turn around, he would fall," Randy says. "I just thought it was a little clumsiness. Well, it got to where when he set down, his leg would jump up and down, just quiver and move."

Charlie's cousin Travis saw differences, too. "There was something eerie about him when he would get out of his truck," he says. "He was kind of stumbling." He once saw Charlie fall, too.

"I never did say nothing. Used to, when Charlie and me would see each other, we would lock horns, you know, kind of fighting. He would throw me around like a rag doll. He got to where he wouldn't do that anymore. He would just kind of back away. He wasn't as stout as he used to be. But if he wanted me to know, he would tell me.

"And then he did. He told me something was wrong with him and he didn't know what it was."

In his 25 years, Charlie had been to a doctor twice: once when he cut his lip on an old trash can, and when he blew out his knee in a football game and rode to a hospital in an ambulance.

Now he was married to Rémy, a girl from Comanche whom he had dated since he was 18 and she was 15. They lived in the small frame house in Mullin where Charlie grew up, a few blocks from the school where he was a hero. They had an infant daughter, Kyra. Rémy was pregnant again. She was worried about Charlie.

"My back pain really started progressing, almost like a kidney hurt," Charlie says. "Rémy made me go. I went first to a chiropractor. I thought it might be a pinched nerve. He took some X-rays and said he couldn't do nothing for me. He told me to go see a neurologist in Abilene. I said, 'I ain't going to do that. Ain't nothing wrong.' But slowly and surely the pain progressed, and we did go.

"We went there two or three months. They ran every kind of test in the world. Drawed blood until I thought I'd go dry. They told me it could be tick fever because we was always down by the river, always out in the woods. Then the doctor said he was going to recommend me to Dallas."

Too young to be true

In October 2002, doctors at the University of Texas Southwestern Medical Center in Dallas told Charlie right off that they thought he had amyotrophic lateral sclerosis (ALS), a disease that weakens the body's muscles, then paralyzes them, then eventually kills the victim. In this country it's commonly known as Lou Gehrig's disease. Among the bad things that can happen to people, not many are worse.

The disease usually strikes people in their 50s or older. Victims often die within three to five years. Those who go on a respirator sometimes live much longer, but are paralyzed and often bedridden. Cases among young people are rare. The younger the victim is, the faster the disease progresses. Charlie was 25.

"They said I was the youngest person they'd diagnosed with ALS in Dallas," Charlie says. "They said I might have three to six months, maybe a year. They told me I was going to have to have a respirator and a hospital bed.

"My stomach just dropped. I was in awe that they would say something like that in front of my wife and kid. It made me ball up inside. I wanted to ask: 'Where did you come from, to tell me how long I'm going to last?' I wanted to say: 'I ain't going nowhere. I'll be back here in 10 years to kick your ass.' "

Soon he had to climb down for good from the truck he had driven to Houston and San Antonio and Dallas, delivering landscaping stone. He went on Social Security, receiving a monthly $700 disability check, and Medicaid.

Bills were piling up. "I couldn't see going up there and spending 200-and-something dollars a pop for a hotel room and then setting in that office for 6 ½ hours just so a doctor and a bunch of medical students could parade in and test my reflexes," Charlie says.

"That was all they was doing. They run us through like cattle. And every time I went there, they took money out of what we've got each month to live on. They was taking nearly half of that."

A fund-raiser fish fry in Comanche brought in about $5,000. Charlie and Rémy caught up on their bills. When Charlie Jr. was born last May, they had stem cells saved from his umbilical cord and spent $2,500 of the fish fry money to have them frozen and stored in a facility in California. They had heard of stem cell research that someday might help victims of ALS and other diseases. They hoped the baby's cells might provide hope for his father.

"The doctors in Dallas told us they didn't know nothing about that research," Charlie says. "They said all the Internet stuff on it was from over in Europe, that it's illegal here because they were taking cells from aborted babies. But we took them from little Charlie's umbilical cord. And we thought they might be a possible solution. They might give me another three years, four or five years. You never know."

After four or five trips to Dallas, Charlie and Rémy quit going.

"They couldn't understand why I was so hardheaded," Charlie says. "But I'd rather sit right here and watch my babies go and laugh and have fun and go outside and watch the dog run around," he says. "The way I was raised up, you don't give up, no matter what. And if you don't let something get you, it won't get you."

Memories never fade

Travis Wilson and another high school football buddy, Marshall Craker, have stopped by Charlie's house. They're talking about the old days, the games, the nights roaming the dirt roads, the huge catfish they used to catch out of Pecan Bayou.

His speech is slow and slurred. His fingers are curled in toward his palms and stiff. He has trouble fishing a cigarette out of the pack on the table beside him. Travis flicks the lighter for him.

Charlie is telling a couple of visiting strangers about the football team. "We played together from the fourth grade until we was seniors," he says. "It was like playground football with your brothers. Everybody knew what everybody was going to do. Everybody flowed smooth."

Most of his buddies moved away from Mullin after high school. But Travis lives in Zephyr, and Marshall in Santa Anna, nearby towns. They and a few others drop in from time to time, to chew the fat.

"Every other month, we have a houseful two weekends running," Charlie says. "Everybody piles in." Randy Holland, Charlie's older truck driver friend, lives only about a block away. He's usually available when Charlie and Rémy need help.

Rémy's stepfather, Marshall Pyburn, and her mother, Laquitta, who is a nurse, are pillars of the beleaguered young family, even though they live in Comanche. They drive to Mullin, do whatever they can. Charlie trusts them and likes them.

But Rémy, a pretty brunette with shoulder-length hair and a nice smile, bears nearly all the load. She's 23 years old. Kyra is 2 years old. Charlie Jr. is only 9 months, still in diapers. "I'm all right," Rémy says. "I don't have it that bad."

Travis introduced Charlie and Rémy long ago, it seems now, at a basketball game. They fell for each other even though both were dating others at the time. "Rémy's a good girl," Travis says. "She hangs in there. She takes care of the house and her kids. She's always been like one of the guys, too."

But weariness tugs at the corners of her eyes and mouth. Her parents worry about her.

"Charlie has disintegrated to the point where it takes him 10 minutes to walk from his chair to the bedroom," Marshall Pyburn says. "He may fall once a week; he may fall every day. He's bullheaded. He won't give up. If it means falling, he'll fall. He laid on the floor once for two hours. He wouldn't let Rémy help him up. He told her he would get up on his own. He's careful of the children. He still weighs about 180. If he was to fall on one of them, it would be terrible.

"I take my hat off to Rémy. She's my hero. She has stood by Charlie and loved him heart and soul. She and Charlie have been through more than 10 people should have to go through in a lifetime. I keep telling her, 'God's in your pocket. You'll come out of this a better person.' I really believe that."

A matter of pride

The doctors prescribed Rilutek for Charlie. It's the only drug that's supposed to somehow help ALS victims. The cost of the prescription was $2,000 a month, and Charlie says it "messed with my heart and gave me kidney cramps." He never finished the first bottle.

The doctors gave him prescriptions for painkillers, which Charlie doesn't take. "I'd rather feel some pain and deal with it and be myself than be all doped up," he says. "My old man always said, 'If you ain't feeling some pain, you ain't living.' "

The doctors gave Charlie a walker, which he doesn't use. And he turned away a physical therapist because, his friends say, he didn't want a stranger to see him having trouble getting around.

"There are lots of people out there who have it twice as bad as I do," he says. "I'm not going to mope around and feel sorry for myself. Don't ever think you're at the end of the world. That's the way I was raised."

But to his cousin Travis, it's all a cruel puzzle. Talking about Charlie is too hard. He shoves his hat away from his forehead.

"Charlie's illness is the kind of thing that ain't supposed to happen here," he says. "You're supposed to grow old here in Mullin, you know. Most people do."