By Ray Stern
By Ray Stern
By New Times
By Amy Silverman
By Stephen Lemons
By Stephen Lemons
By Monica Alonzo
By Chris Parker
Mike White's eyelids are half-shut. His breathing is slow, heavy. Two days ago, he was hospitalized with pneumonia. He's still taking drugs to combat the illness and he blames the medicine for sapping his energy.
Despite his weariness, White rolls up in his $45,000 motorized wheelchair to Pilgrim Rest Baptist Church, a Central Phoenix megachurch. It's 7:30 a.m. in mid-October 2013. He's wearing a black Air Jordan jacket with red lining, matching pants, and black unlaced Air Jordan shoes. He's 46 years old, and 6 feet tall when standing, which he does only with help, and rarely. White is bald with a neatly trimmed goatee and dark brown eyes.
On his left wrist is a red wristband that reads, "Fighting Lou Gehrig's Disease."
A Gulf War veteran, Mike White is battling amyotrophic lateral sclerosis, a fatal motor-neuron disease. No one knows exactly why you get it, but if you do, the disease kills nerve cells in the brain and spinal cord, removing your ability to control your muscles. Some veterans can be up to twice as likely to develop ALS compared to average Americans, studies have shown. But the mysterious connection between ALS and vets has yet to be explained. For White, the answers are less important than surviving.
Today, he sits in his wheelchair at the end of a pew in the back of the church. A church worker reaches out to shake White's hand. He looks at the woman's hand, up to her face, and back to her hand. The woman realizes he can't move his hand and reaches for White's shoulder instead.
White turns his attention to the front of the church where the boisterous Bishop Alexis A. Thomas, also 46, starts his sermon, trying to waken the morning crowd. He wears a sharp gray suit and has a rag for wiping sweat off his brow and a glass of water nearby.
His topic today: struggle.
Everyone's life has been tough, Thomas says, and everyone has gotten through it one way or another. He says God doesn't throw things at people that they can't handle, and everyone in the church that morning has survived.
"Look to your neighbor and tell them: 'You are sitting next to a survivor,'" Thomas shouts.
White says softly to the person beside him: "You are sitting next to a survivor."
As White sits almost motionless, other churchgoers dance, clap, and sing. Thomas leans into the podium, jumps back, stomps his foot, and points at the crowd.
"Stretch your hands out," Thomas shouts from the podium. "Feel like God is enlarging your territory."
Almost every hand in the church reaches toward the ceiling.
White lifts the fingers on his left hand as high as he can — about two inches.
Eleven years ago, when Mike White was healthy, two studies in the journal Neurology found an increased incidence of ALS among Gulf War veterans. Two years later, the Harvard School of Public Health found that male veterans who served in World Wars I and II, Korea or Vietnam had an increased risk for ALS compared to similar men who were not veterans. Other studies followed, confirming the statistical connection.
Also known as Lou Gehrig's disease, the malady shuts down nerve cells in the brain and spinal cord responsible for muscle movement, impacting a person's movement by destroying the brain's ability to communicate with the muscles, as if a telephone wire were cut. This leads, ultimately, to total paralysis. In the end, patients have to rely on machines and devices to move, eat, talk, and breathe.
This disease is cruel. Throughout its progression, patients' minds are left unaffected. They are fully aware of what the disease is doing to them. It is a miserable way to die. Most die within five years of diagnosis, but up to 5 percent of patients live for decades.
ALS was identified in 1869 by the French neurologist Jean-Martin Charcot. All these years later, there still is not a clear picture of what causes the debilitating disease.
Lou Gehrig, one of baseball's greatest players, was stricken with ALS in the late 1930s. He played in 2,130 consecutive baseball games for the New York Yankees before weakness from ALS forced him out of the sport in 1939. No one knew why he got it — even less was known about the disease at the time as is known now. He died in 1941 at age 37.
Another notable person with the disease is theoretical physicist Stephen Hawking — who was diagnosed at age 21 and still is alive at 72. Since 1985, he has talked through a computer, giving countless speeches as his mind continues to function at a high level. Steve Gleason, a former football player for the New Orleans Saints, announced in 2011 that he had ALS. In November 2013, a documentary about his life was released. Like Hawking, Gleason is confined to a wheelchair and needs a computer system to speak for him, which he controls with his eyes.
There are 15 new cases of ALS diagnosed in the United States each day, with men being 1.5 times more likely than women to get the disease. The average age of diagnosis is 55.
Mike White was diagnosed at 43.