Bout with pneumonia brings grim reality into view
April 23, 2011 at 10:04 p.m.
Updated May 7, 2011 at 12:07 a.m.
Steam curls from Craig Fox's face in a mist that smells of rotten eggs.
Orange lamp light forms a halo around his king-sized wheelchair, making him look like some kind of a disabled patron saint.
Fox's girlfriend, Alisa Villarreal, perched nearby, leans her head back so Fox's teenage daughter can twiddle her hair.
Villarreal coos and whispers while Fox breathes a treatment with his jaw dropped. A plastic mask covering his nose and lips keep the two from talking. A thin tube runs from his chin to a growling metal machine a doctor ordered to keep him breathing.
Villarreal strokes his arm, her fingers tip-toeing up to his paralyzed bicep.
"Flex," she says, pressing her cheek to the skin. She giggles like a school girl, and Fox's 315-pound body jiggles out a chuckle in his wheelchair.
It is a laughter that embraces the impossible, chasing away the reality of Fox's genetics.
April marks Fox's third anniversary with amyotrophic lateral sclerosis. When diagnosed, ALS patients are generally told they have three to five years to live. Fox's recent bout with pneumonia could signal the beginning of the end.
With no cure on the drug market, those with the disease are left to defend themselves with one enduring medicine: hope.
NO TREATMENT, NO CURE
ALS is a cruel genetic mutation that slowly steals away neurons controlling muscle movement. It strikes about 5,600 people every year and generally goes undiagnosed for the first year of onset. It baffles scientists who have been studying it for decades.
At least six people have it in the Crossroads and about 30,000 nationwide.
Patients face the reality of limited treatment and no cure.
Before the disease, Fox, now 42, did everything spontaneously and big. He owned a Texas-sized Ford truck and took outdoor trips with his kids, Bailey, 12, and Tanner, 16. He worked in the engineering industry, went to church and watched his life unfold with his wife, Nancy, whom he met in high school.
A heart attack in 2005 was the first thing that changed that. It was the middle of a November night, but it wasn't Fox's heart that failed, it was Nancy's.
FIVE YEARS TO LIVE
Three years after his wife's death, in a cut-and-dried conversation with a Houston doctor, Fox learned he had about five years to live. He lost all his arm strength, retired from his job and moved himself and his kids in with his parents.
ALS usually starts in the arms or the legs and progresses through the rest of the body. Cheek and throat muscles will wear out, too, as the brain's neurons - which send signals to make the body move - slowly die. Fox's muscles soon followed. What's left hangs loosely on his body as if his skin is trying to let it go.
The disease attacks only voluntary muscles - the ones we use to move ourselves - and makes a final stop on a person's diaphragm, which regulates breathing. People with ALS eventually die because their breathing muscles are too weak to draw air.
Fox's first ALS-related hospital stay started with a basket of chili cheese fries.
"That must have been some tough chili," said Dr. Vanessa Holland, a pulmonologist with the Methodist Neurological Institute who treated Fox.
Fox, his children and Villarreal were in Houston for a Rockets game when his body rejected the meal. Fox vomited, choked, coughed but his throat muscles - strangled by the disease - were too weak to push the fluid out, so it moved into his lungs and became pneumonia.
A week later, he is still bedridden when his children, who care for most of his needs, come to see him for the first time.
Bailey sees her father first.
"You look tiny," she says.
"That's because it's a big bed," he says, covered by a speckled hospital gown and tubes running off his face.
"I love you," he says, straining from his bed for a kiss.
"I love you, too," she says.
Even from his hospital bed, Fox focuses on his role as a father. He tells his mother, Peggy Fox, to divide the kids' lunch money, then talks grades.
"Why'd you make a low grade to begin with?" Fox asks Tanner.
"Research says you need studying and that you need four hours of sleep," Tanner answers. "Me no get that."
The room, dark and gloomy, smells like moist-skin. Tanner and Bailey watch open-mouthed at the new breathing treatment that will keep Fox alive.
"That's just what I need," Tanner says. "New routine. New routine. Every three months."
Fox's legs hardly bent when he walked from his wheelchair to the kitchen. His head hung chin to his chest, his paralyzed arms bobbled as his body swayed. After a few strolls from the kitchen and back, his hair started to stick to his forehead with sweat.
Coming home marked a different pattern to his life: three-times-a-day breathing treatments, spoon feeding, potty breaks and more expenses.
The bills keep mounting: an 11-day hospital stay, a mechanical lift and an extra-large vest used to pummel Fox's chest to help him breathe.
"It's like setting up a hospital room," said W.J. Fox, Craig Fox's 72-year-old father. He brooded, eyes fixed on the television, during a steamy breathing treatment.
Parenting looks different for the two men as Fox's daily needs become like a newborn's.
"You never stop being a mom, but you can't help but notice that he needs more and more care," Peggy Fox said. "I don't feel real young, but a lot of the care that I give him is probably the care you give when you are a young mother of young children."
Fox's growing physical needs supplant his ability to act as a father. Tanner - the tallest and strongest of the family - bears the brunt of it.
"Look at you," Tanner said, fitting Craig's breathing mask. "We can't even get you to stop coughing."
There's only one drug for ALS treatment - a $1,000-a-month pill. Fox takes it to slow down the spread of the disease. The cost is covered by a national program for people with rare diseases. He and his family keep ears tuned for the latest on a set of drugs heading into clinical trials, but their strongest antidotes remain family, hope and humor.
Fox spends most of his days intimately involved with his 55-inch TV screen tuned to "Tyler Perry's House of Payne," "Everybody Loves Raymond," and his DVD collection, which alternates between humor and drama.
At Fox's last visit to an ALS clinic, he and Villarreal vowed to brand themselves with matching anti-ALS tattoos that would say, "ALS Sucks."
"You don't have time for the negative," Fox said, watching his TV from his wheelchair throne. "It's a waste of energy."
The mantra that gets ALS patients and caregivers through life is simple: ALS doesn't have you. You have it. It's the blanket of control that covers an otherwise wretched illness. It's the prayer each patient repeats a million times to bring comfort to a powerless situation.
While Fox doesn't know when he'll take his last steps, draw his last breaths or speak using his own voice, he focuses on the details of his favorite TV shows, his son's grades, Bailey's church activities and his love affair with Villarreal.
"I could sit here and mope until I'm in such a deep depression," he said. "Or I could sit here and think about the stuff I can do, laugh about the stuff I can't and not waste any time on the negative. Don't sweat the small stuff."
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