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.
About 2,000 veterans are living with ALS, according to Dr. Richard Bedlack, neurology service chief at the Durham VA Medical Center in North Carolina, who tells New Times he has treated more than 100 veterans. The Centers for Disease Control say there's no precise count but estimate 20,000 to 30,000 Americans are living with the disease. It's one of the most common degenerative motor neuron diseases. According to the ALS Association, a small fraction — 5 percent to 10 percent — of ALS cases are hereditary.
But there's still no known cause for the vast majority of cases, including the higher rate of ALS cases among veterans.
In 2008, the Department of Veterans Affairs designated ALS a "presumptive service connection" disease based on these studies. It's a fancy way of saying if you are a vet and you get ALS, military service might be to blame.
"What they're saying is that your military service may have put you at an increased risk for getting ALS," Bedlack says.
White doesn't think about why he got the disease, and he doesn't ask "Why me?"
"That question will never be answered," White says, "so I figured why butcher myself by asking that."
Mike White wears his life on his skin.
Scars across his left temple and left jaw are remnants of a serious 1988 car accident on the Autobahn while he served in the Air Force in Germany. He attributes a footlong, half-inch-wide jagged line running from the top of his right knee to the middle of his lower leg to three knee surgeries necessitated by catastrophic sports injuries. Just above his right ankle is a tattoo of the 7-Up red dot mascot standing in front of a basketball hoop twirling a ball with each hand.
White grew up in Canton, Michigan, a middle-class suburb about 25 miles west of Detroit. His mother worked in the warehouse of a hospital equipment supplier and his father was a recruiter for the military and later owned a trucking company. White was a good athlete; basketball was his main sport, and his mother, Laura White, was his biggest fan. Sometimes she screamed so loud she thought she would pass out.
White earned a scholarship to play basketball at Schoolcraft Community College, close to home in Michigan. But he wasn't ready for college, failing to focus on school and losing his scholarship after just a year, he says.
And so, following in his father's footsteps, he turned to the military. White enlisted in the Air Force in August 1986, becoming an aircraft fuel systems mechanic responsible for troubleshooting fuel system problems and doing "in-tank maintenance," which he says involved crawling inside fuel tanks.
Sports still ruled his life. White traveled around Europe, playing with the Sembach Air Force Base basketball team. He played guard, and his friends said he was the best on the court many nights.
After being discharged from the Air Force in 1992, White spent the next several years moving between Colorado, where his wife lived, and Michigan, where his parents and childhood friends lived. He bounced from job to job, working in healthcare, as a bank teller, car salesman, and mortgage originator.
He's bounced around in love, too. White fathered five children with four different women, two of whom he married. The oldest child, Mike Jr., was born in 1990. Chelsea was born to a different mother five months later. White says he married Mike Jr.'s mom, Nicole, in September 1992, two months before White left the military. In October, his second son, Christian Hamilton, was born to another woman. Nicole and White were married until 1997, though they had separated two years before, White says. He married his second wife, Melissa, in September 2001. The couple had two children, Mekhi, now 10, and Miah, now 7, and divorced in 2012 — though they remain friendly today. The two kids split their time between their mother and White.
It's hard to deny that he has had an unstable life. But for almost two decades, there's been a constant in his adopted home state of Arizona.
White landed in Phoenix in October 1996 after helping his mother move here from Detroit. It was 80 degrees at 10 on his first night in Phoenix. White decided then he was never going to leave.
"I remember I walked outside," he says. "I looked toward the stars and I thought, 'I have shoveled my last bit of snow.'"
Like Lou Gehrig, whose name forever will be linked to ALS, Mike White once lived to compete. And also like Gehrig, ALS forced White out of an athletic life, too.
Along with his basketball skill, he held a single-digit golf handicap, bowled a perfect game, and was a high school track state champion.
But at 46, his hands are swollen and fingers elongated from the disease. Inaction has robbed him of his athletic physique. He can stand only when a caretaker pulls him up from the chair, and from there, shuffling a few feet is a laborious task. His shoes are always without wear and are out-of-the-box clean.
He can't move his arms, and barely can move his hands.
He still talks, but his voice is soft.
He swallows, but needs to be fed.
He likely will be mentally cognizant as the disease progresses to the point that he will not be able to breathe, eat, or move on his own.
The Department of Veteran Affair's "presumptive service connection" means that the government pays for the devices that help him live with ALS. The VA gave White a motorized wheelchair, a retrofitted van, and a digital speaking device that he doesn't use often now but likely will in the future. The VA also paid for adjustments to White's home — widened doorways, lowered countertops, installed special showers and toilets, removed all carpet, and flattened slopes.
Like White, most with ALS eventually require constant assistance. Family members or paid aides must help with bathing, toileting, dressing, and eating.
Most people living with ALS eventually require a feeding tube and respirator to survive and must be hoisted out of bed with a crane-like device and placed into their chairs.
Some lose their ability to blink.
Death usually comes from respiratory failure.
Mike White's 1988 neck injury inadvertently led, two decades later, to his ALS diagnosis. In January 2011, a Phoenix surgeon was preparing to do major surgery on White's neck and sent him to a neurologist for a final check.
The neurologist, Dr. Kumaraswamy Sivakumar, first determined White was healthy enough to withstand neck surgery. But then Sivakumar noticed White dragged his legs in a particular way.
"How long have you been walking like that?" Sivakumar asked.
"I just had knee surgery, and I've been rehabbing for about a year and a half," White said.
"Would you mind sitting back down on the table?" Sivakumar asked.
Sivakumar tested the muscles and nerves in White's legs through painful electric shocks and diagnosed the ALS. That was February 24, 2011. White, his mother and his sister met with Sivakumar a month later to confirm the diagnosis and get details on the disease.
As the disease progressed, White lost his independence. In the fall, he was living with his parents, waiting for his own home to be modified so he could move in. He saw himself as a burden on the family. They worked hard to keep him going, yet they sometimes forgot his appointments and failed to do necessary chores around the house, he would later recall.
He saw, his sister Crystal Houston would later say, that his disease had caused chaos within the family. Rene Glenn, White's girlfriend, knew he had become overwhelmed and had fallen into a dark place.
As a precaution, Laura White took the gun out of her son's room, even though he couldn't lift it by that time.
His depression was a wake-up call for the family. They began working harder to convey that helping Mike was a pleasure and something they wanted to do.
Eventually, White moved into his new, VA-customized home, his doctors adjusted his depression and anxiety medication, and he pulled himself out of his slump.
A month or so later, he told his family they weren't prepared for the progression of ALS. If they were unprepared as caregivers, they could kill him, he said.
Houston laughed.
"Last month," she told her brother, "you didn't want to live. This month you're mad at us because you think we're trying to kill you."
White sits alone in his living room in Buckeye about 11 a.m. one day last October. His single-story house is designed perfectly for him, with wide doorways, low granite countertops, and hardwood and stone floors throughout. There is a ground-level button at the back door to hit with his chair in order to go outside. There isn't an incline in the house. He can move his chair anywhere but often needs help with whatever he's going to do when he gets there.
Sunlight streams through a glass door and windows. His unlaced Nike sneakers match his white Nike shirt and blue shorts. He cares very much about how he looks and almost never mixes clothing colors or brands. The flat-screen TV is tuned to ESPN.
The people who love White are caring for him. Laura and Cecil White, his parents, live less than a mile away and often are at their son's house. Laura is at his house almost every day for most of the day. She is her son's primary caregiver, acting, as Cecil says, "just as she would or as she did when Mike was a baby."
Cecil, on the other hand, says his legal and real estate background better position him to help with financial aspects of his son's life.
Cecil also helps supervise White's son, 21-year-old Christian Hamilton, and Amir Handy, White's 15-year-old second cousin, who also live with him.
Members of White's family — including his parents, Hamilton, Handy, his aunt and his sister, Crystal Houston — each devote days during the week to caregiving.
Rene Glenn, his girlfriend, helps during the weekends. Glenn and White became friends in 1997. After the diagnosis and after White's divorce, they transitioned to a more serious relationship.
Glenn helps White get ready — including showering, brushing teeth, and dressing — in the morning. She says she finds it "very natural" to care for him in this way, because she loves him.
On this particular morning, White calls for Hamilton. Today is his son's turn to be the caregiver.
White needs to take his morning dose of pills. (He takes more than 30 pills each day to combat everything from relentless pain to vitamin deficiencies).
Hamilton is listening to hip-hop music and doesn't hear his father's calls. White scolds him for not being more attentive.
Hamilton doesn't react to his dad's comment.
The young man is tall, with short black hair and an athletic build. On his right wrist, Hamilton wears the same red "Fighting Lou Gehrig's Disease" bracelet his father wears. When he moved to Phoenix from Ypsilanti, Michigan, in 2013 to help care for his dad, he didn't realize how much work that actually would entail, he says. But caring for White has helped him grow up, he says.
In the kitchen, Hamilton grabs a blue pill container. The meds are divided into morning, afternoon, and evening doses. Hamilton grabs a one-gallon bottle of orange punch, a blue plastic cup, a white plastic bottle of powdered laxative, and a yellow straw. He mixes the powder and punch in the plastic cup and dumps the 14 morning pills into his hand.
White is back to watching ESPN's SportsCenter. Without so much as a look to Hamilton, he opens his mouth and tilts back his head. Hamilton pours all the pills into White's mouth at once.
He lifts the straw to his father's lips.
"Psst."
Laura White doesn't turn her head. She's watching the University of Connecticut woman's basketball team dismantle the Stanford Cardinal on the large flat-screen TV in her son's home on a Monday night.
Mike White stares at his mom. It's obvious he's annoyed. A plate of yellow chicken curry and rice sits on the high table between them, one fork resting on its side.
It's dinnertime at White's house. Laura and her son sit on the side of the table directly facing the TV. White's youngest children — Miah and Mekhi — sit near their grandfather.
"Psst," White says again.
"Oh! Sorry," Laura says. She prepares a small bite of food and puts it into her son's mouth.
White chews slowly and deliberately. Just weeks earlier, he knows, a fellow ALS patient died from choking.
When he's finished swallowing, Laura lifts a Bud Light can with a pink child's straw to her son's lips.
The conversation turns to Mekhi's recent youth football game. White's son had sat out some of the game because he got hurt, so White gives him fatherly advice: His teammates need him to help win the game.
Mekhi nods. He turns back to watching the television.
Laura remembers to give Mike another bite.
"It's pretty good, right?" Laura asks after he swallows.
"Oh, yeah, love it," Mike says.
In Mike White's world, war stories are more often about sports than the military. On the last Saturday night in October, dozens of White's friends gather in his living room to tell these stories. They are in town because they all went with Mike to an ALS awareness walk that morning in Scottsdale. The guest of honor smiles broadly. Occasionally someone lifts a blue plastic cup to his mouth and he sips his mixed drink through an orange straw.
Anthony Robinson's got one about golf.
A long, deep couch shaped in a semicircle creates a kind of stage for Robinson. Bottles of rum, wine, and vodka clutter a granite countertop in the kitchen. Half-empty baking tins of sausage, fried chicken, and ribs pack another counter. Behind Robinson, a college football game plays on a muted television.
About a decade ago, Robinson, White, and another friend, Decarus Bennett, lived together in an apartment about 300 yards from a golf course in Phoenix. They golfed often, and, Robinson says, White forgot his golf shoes one day and instead wore flip-flops on the course.
"So me and D, we look at each other and we like, 'We got this, boy!' Robinson recalls.
"We won that first hole; it might have been the last hole we won. Mike beat us like we stole something," he says.
Bennett runs to the front of the room to join Robinson.
"He didn't have no grip, though!" Bennett continues. "He'd hit the ball and go slipping."
Bennett pretends his feet slip out from underneath him.
"Straight down the damn fairway," he says over the laughter.
Robinson shakes his head. White shot an 82.
Bennett kisses White on his bald head and pats him on the shoulder.
This is the last story of the night. The party breaks up into small groups, and gradually the friends leave.
Ever since studies showed a link between military service and ALS, scientists have been scrambling to find an explanation for the mysterious connection. The VA set up a registry for veterans with ALS in 2003, then closed it in 2009 after Congress mandated that the CDC set up a national ALS registry for all Americans. Tissue banks have been opened — there's one in Tucson that stores about 120 frozen brains of Gulf War veterans who died of ALS, according to the VA. The frozen tissues are distributed to qualified researchers for ongoing studies.
Despite both public and privately funded studies examining the connection between ALS and veterans, scientists have not been able to explain the reasons for the high incidence among veterans.
"There isn't a real clear understanding of what the reason is. These are healthy young individuals . . . it remains actually quite unclear," says Dr. Lucie Bruijn, chief scientist for the ALS Association, a national nonprofit headquartered in Washington.
Bruijn said the disease impacts someone the same whether or not he served in the military.
A study conducted in the Netherlands in 2013 concluded that a lifestyle of physical fitness increases susceptibility to ALS. Based on answers from ALS patients and the general population to a questionnaire, the study found that partaking in vigorous physical activity did not increase the risk, but being active leisurely did.
Another study of Italian soccer players in 2005 found that they had a much higher likelihood of getting ALS as the average population, perhaps because of their physical fitness. Military personnel also tend to be in good shape.
A number of studies have looked into environmental factors as possible causes — lead, jet fuel, paint strippers, formaldehyde, and pesticides. Studies have shown that environmental factors have some impact on someone's propensity to get ALS, but no one factor has shown itself to be the more likely cause for the disease.
Bruijn, the ALS Association chief scientist, says genetic factors may come into play. It's also possible that a combination of factors, such as genetic predisposition combined with environmental factors, leads to ALS.
"I can't really say that any one theory or another is the correct theory. At this time, it's still really speculative," she says.
Some current research, Bruijn adds, focuses on finding the genes responsible for creating mutant proteins that kill the nerve cells in the brain and spinal cord. Clinical studies and experiments focus on shutting down these genes. Stem cell therapy also is an area of study that has members of the ALS community excited, because of the many potential uses that stem cells have.
It's difficult to say when those studies will help ALS patients, but it likely will be years off, Bruijn says. To date, there is only one FDA-approved medication, Riluzole, proven to lengthen life in ALS patients — and it does so only by three to six months.
It's December now and time for another visit to the doctor. Time to talk more about the future. White, physical therapist Deborah Taylor, his parents, and his girlfriend sit in a small examination room in Dr. Sivakumar's office in North Phoenix.
Taylor asks the group how well White gets out of his chair. Laura says caregivers still pull White up by his wrists and hold them for balance so White can shuffle sideways toward his destination. He occasionally loses his balance.
"And as soon as I start tipping, it's like, 'Down goes Frazier!'" White jokes in his best boxing announcer's voice. Everyone laughs.
Taylor suggests the caregivers buy a belt that wraps around White's waist. The belt should ease lifting and stabilization, she says.
Taylor exits, and Sivakumar enters the room.
Laura and Cecil say they like Sivakumar because he answers truthfully. There isn't much more they can ask for.
Sivakumar says White's breathing is more restricted than it was two months ago, but he seems better emotionally.
"That was a rough time for him," Glenn agrees. "See, he looks like himself now, doesn't he?"
"Well, who the hell else would I look like?" White responds.
Sometime in the future, Sivakumar continues, White is going to have more trouble breathing. He won't be able to breathe on his own and will have to use a BiPAP (bilevel positive airway pressure) to artificially push air into his lungs.
But after that, White must decide whether to receive a tracheotomy and be put on a ventilator. Without a ventilator, he will die sooner. But White isn't sure he wants to live with a ventilator.
Once the device is in place, Sivakumar says, doctors cannot ethically remove it or turn it off because doing so would "expedite death."
"Whatever you want to do, I'm on your side," Sivakumar says.
White doesn't say anything. Glenn dabs her eye with a tissue.
"How much time does he have?" Laura White asks.
"I think it's irrelevant," Sivakumar says. "I don't want to know, you don't want to know."
"You're right," Laura says after a pause.
White glances at his parents and looks around the room. Then his shoulders drop a little, his eyes glaze over and he looks at the floor.
He seems to only half-listen when a nutritionist discusses the possibility of a feeding tube in the future. He doesn't ask any questions.
The nutritionist leaves, and the room is still.
White sighs and closes his eyes. Glenn places her hand on his head.
Two months have passed since that doctor's appointment. White's voice is softer now, his hands and wrists more swollen. And he fatigues more easily. He still wakes up about 8:30 a.m., but his morning routine now takes so much out of him that he often naps off and on from 11 a.m. to 3 p.m.
Today is the first time White's caregivers will receive professional training for first aid and CPR — the same course emergency medical personnel, doctors, and nurses take. Up to this point, everything the caregivers have learned about assisting White has come from experience or research.
Mike Silvia, a trainer from a company called Cross Lifeline, is big and loud with short gray hair and a heavy Boston accent. Silvia sets up in the foyer of White's house, a large room with hardwood and stone flooring and tan walls. Cecil, Laura, and several other family members sit in a semicircle watching Silvia demonstrate proper CPR.
Silvia starts the training by teaching everyone how to locate a patient's pulse on the neck. The caregivers all find their own pulses, except for Cecil. He has his hand on the top inside of his collarbone, saying that he feels it there and can't find it at his neck.
The room starts laughing as Silvia walks over to try and help him.
"Hey! Hey, listen. This ain't no joke," White says as loudly as he can from the back of the room.
The room falls quiet.
"This is my life," White says softly. He slowly shakes his head.
Silvia starts talking about the "C-A-B" steps to CPR. C stands for compressions, A for airway, B for breathing. But Silvia warns that taking too much time trying to remember the exact process could be even worse than remembering the letters incorrectly.
"He's D — dead," Laura cracks.
"Yeah, he's dead," Silvia says smiling over the laughter, giving a thumbs-down sign.
White stares ahead, grim-faced.
Silvia says the goal is to get five sets of 30 compressions at a rate of 100 compressions per minute.
"Don't stop compressions unless the guy sits up and tells you to stop pushing on his chest," Silvia instructs.
The caregivers laugh again.
White doesn't react.
The caregivers practice on dummies. Hamilton pushes much faster and harder than anyone else; White watches his son from across the room.
"It doesn't work all the time," Silvia says after an hour of CPR practice. "But anything you do is better than watching him turn blue."
Laura can tell her son is upset about his family not being serious during the training.
"It makes me nervous," White tells her.
"We still learned it," Laura responds.
White pauses, looks at mother.
"I really hope so," he says.
