Veteran Stephen White fights for independence as debilitating Lou Gehrig's disease takes hold
By Greg Barnes | The Fayetteville Observer | Published: December 3, 2012
They met on a Christian Internet dating site in September 2009, the hospice nurse and the Air Force veteran.
The veteran, Stephen White of Fayetteville, had been divorced the year before. His wife, he said, was a good, loving person; she just didn't want to be a caregiver anymore.
The nurse, Cindy Troxler of Lexington, didn't have any such concerns.
She didn't mind that White cannot bathe himself or dress himself or get himself out of bed in the morning.
She didn't mind that he will likely be in a wheelchair for the rest of his life, or that he had long ago defied the odds of being alive.
She didn't mind that White suffers from amyotrophic lateral sclerosis - also known as ALS or Lou Gehrig's disease.
On average, people with ALS die within two to five years. White has lived with it for a dozen. He's among the lucky 10 percent who live 10 or more years with the disease. If he's really lucky - among the 5 percent of people with ALS - he'll live at least eight more.
But that hasn't stopped White - hasn't even slowed him down - from living life to the fullest he can.
In October, he jumped out of an airplane at 13,500 feet, an American flag bandana draped around his neck.
In September, he went on a family getaway to Pigeon Forge, Tenn. Last year, he took a Caribbean cruise.
And, oh yeah, in 2010, he got married.
The Internet courtship started cautiously, as they almost always do. But soon, Cindy Troxler and Stephen White found themselves emailing each other for a couple of hours every night.
As the relationship progressed, Troxler and her daughter came to Fayetteville to meet White, to go to church with him, to get a sense of what everyone was getting themselves into.
In time, Troxler began to spend her weekends taking care of White. And within a few months, with her parents' blessing, she accepted his wedding proposal.
"They knew Steve was a good man and he was a man of God, and they knew where his heart was," Cindy White said. "Nothing was taken lightly. I know the courtship went pretty fast, but I knew what I was getting into."
The nurse and the invalid became husband and wife in January 2010.
"I don't regret that decision at all," said Cindy White, 49. "I'm not crazy; I love the man. He's my sweetie. He's a good guy; he really is."
After she disconnects her husband from the ventilator, gets him out of bed and into his wheelchair, cleans out his tracheae, feeds him through a tube and does all the rest of the morning rituals, Cindy White wheels him to his desk in the kitchen.
This is largely Stephen White's world now.
The view of the patio through the glass doors. Pepper, the adorable little dachshund that barks from the couch and has to wear a diaper because he suffers serious health problems of his own.
Chiquita Joseph's, White's caregiver four days a week through the U.S. Department of Veterans Affairs.
His doting wife. His parents. Her parents. His sons. Her daughters.
The Air Force veteran and the nurse.
For better or worse - till death do they part.
Stephen White loved the Air Force. He joined it shortly after graduating from Reid Ross High School in 1981. He says it became his life, the best thing that ever happened to him for the next 21 years.
"I'd become a small part of something so much bigger than I and loved the sense of giving back, doing something for my country," White wrote on an ALS website in 2009. "I'd seen much of the world, loved my work and had no intention of slowing down, fully intending to match Dad's Army E-8 before retiring."
But in 2002, White started feeling poorly. After a weeklong battery of tests at Walter Reed Army Medical Center, doctors told him there was a 75 percent chance he suffered from ALS. He said he was told to "get my affairs in order."
From there, the disease began its insidious march, attacking nerve cells and pathways in the brain and spinal cord. Gradually, it has taken over White's muscle control and robbed him of his independence.
Last summer, his diaphragm became so weakened that doctors were left little choice - White was given a tracheotomy that allows him to breath on his own, unless he's lying down. Then, he uses a ventilator.
His voice is difficult to understand now, except for those closest to him.
He used to go to the movies every week with his best friend. Now, they go about once a month.
But he's got his wife, his family and his friends. And he's got his computers - his biggest windows to the outside world.
White's caregiver, Joseph's, thinks he's a nerd.
"I love him to death, but he's a geek," she said, calling his ability to use a computer nothing short of brilliant. "You need to know something, he'll get it for you."
White spends much of his time on the computer, the one in the kitchen that he controls with a shaky hand, or the one next to his bed that he controls with his eyes. He loves to play solitaire or Concentration.
His bedroom resembles a hospital room, with a lift attached to the ceiling that his wife occasionally uses to get him in or out of bed. She sleeps right next to him, in a twin bed of her own, but she admits she doesn't get much sleep.
After the morning rituals, when Stephen White can finally slip into his cockpit behind the computer, he indulges himself with a simple pleasure: coffee.
Eight O'Clock Colombian, to be precise. He sips it all day, from a plastic Washington Redskins cup in a drink stand that he fashioned himself. That's another of his talents. White is a bit of an inventor.
"His thing is to be as independent as he can be," his wife said. "I think Steve's thing is, you live every day and be thankful for it."
The last thing he wants is for people to feel sorry for him. What he does want - the purpose behind revealing so much about his life - is for people to better understand his disease and to help him find a cure.
White says he is one of the lucky ones. It can cost hundreds of thousands of dollars a year to treat and care for an ALS victim. White is on full disability benefits through the VA, which pays for his caregiver, medication and equipment. He can't imagine how some people in his condition get by.
Studies have found that people who served in the military are nearly twice as likely to get ALS as those who didn't serve. It doesn't matter what branch of service or what war - Persian Gulf, Vietnam, Korea, World War II - the incidence is about twice as high, according to the national ALS Association.
It could have something to do with head trauma. In September, the National Institute for Occupational Safety and Health released a study that found that former professional football players are four times more likely to die from ALS as people in the general population.
The research gives White continued hope that a cure will be found in his lifetime, that someday he can stop watching the disease kill his friends one by one.
"All the time, Steve is fighting so hard to stay alive, to find a cure," his wife said.
He has set a goal for himself to live as long as renowned physicist Stephen Hawking. The 70-year-old Hawking has lived with a slowly advancing form of ALS for nearly half a century.
For a small number of others, ALS has stopped progressing, and a few have seen their symptoms reversed.
As White searches for a cure, his wife searches for spiritual guidance. She believes God put her and Stephen together for a reason, the answer to be revealed in full someday.
Stephen's parents, Doug and Margie White, believe the same.
"God worked it out," Margie White said. "There is no doubt."