The spirit grows stronger
Faced with a devastating diagnosis, William White ’92 did not despair. He turned to his faith and his family, and he asked, “How can I help?” Though his body is growing weaker, White’s spirit is growing stronger, nourished by this chance to shine light on Ohio State’s medical research and the quest for a cure.
The hands of William White rest easily on your shoulder, not for support, but for a touch of emphasis as he makes an impassioned point. He may tap you lightly, widen his eyes, tilt back his head and cackle in delight.
Oh, it’s quite a laugh — deep and rich, a signature sound in a bustling crowd.
“People always say, ‘Have you seen William?’ and I say, ‘No, but I heard him over there.’ You hear that laugh,” says his wife, Nikol White ’96.
White ’92 is laughing, chattering, intensely listening — being, well, William — on this humid October afternoon. He buzzes through a crowd of about 100 gathered at the Ohio State College of Engineering’s tailgate party four hours prior to the Buckeyes’ Homecoming football game. He’s a furnace of goodwill.
“William conveys such a genuine caring and warmth,” says Chris Yates, the college’s chief advancement officer. “There’s just a generosity to his spirit that infuses everything he does when he interacts with people. I think he speaks to the very best of what this university is and what it offers.”
White, 52, softens small circles of conversation like everyone’s best friend. He jokes about the Band-Aid on his neck covering a shaving cut. He recounts tales from his football career with the Buckeyes (a four-year starter beginning in 1984) and as an NFL defensive back whose stellar career ended with a 1999 Super Bowl appearance. Like a coach, he talks up the benefits of his engineering degree to a teenager interested in Ohio State, where he’s director of corporate and community engagement for the College of Engineering and the alumni association.
“Everything starts with your attitude,” White says.
He’s holding a plastic cup of water in both hands. The ice is swaying.
Friends know why.
“William doesn’t seek a sympathy vote,” says David Williams, dean of the College of Engineering and a longtime friend. “He’s got a challenge, and he’s facing it. That’s what he’s always done.”
The challenge is profound. His subtle hand tremors are from amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. White was diagnosed in fall 2016 with the incurable neurological disease that the CDC estimates affected up to 15,000 people in the United States that year. ALS usually is fatal three to five years after the onset of symptoms, although about 10 percent of patients survive a decade or longer.
But White doesn’t concern himself with projections. He’s too busy living in the moment.
“Don’t focus on death,” White says. “Everybody’s going to die at some point. Just think of the positive things. Dying, to me, that’s my victory, because then I get to spend eternity with my heavenly Father. So while I’m on Earth, how can I be effective for others?”
In 2016, his family doctor noticed White’s arms were twitching and referred him to neurologist Dr. Kevin Weber at The Ohio State University Wexner Medical Center, where tests revealed ALS. “It’s difficult to give someone a diagnosis like that where there’s no cure,” Weber says. “I remember him being very stoic. He took it in stride.”
Seeing the whole patient
Learn about Ohio State’s ALS/Motor Neuron Disease Multidisciplinary Clinic and Translational Research Program, where William White and more than 250 ALS patients receive care.
Weber referred White to the university’s ALS/Motor Neuron Disease Multidisciplinary Clinic and Translational Research Program, where Drs. Stephen Kolb and Adam Quick confirmed the diagnosis.
“He was very calm, perceptive and curious, with a ‘How can I help?’ attitude,” Kolb says. “He initiated a very effortless, collaborative relationship with me right from the beginning. The best part of my job is interacting with people with ALS, because they are often so giving of themselves. I’m blessed to go to the clinic to work with and serve these people.”
More than 250 patients are treated at Ohio State’s ALS/Motor Neuron clinic, and White is among 84 who have chosen to participate in Answer ALS, a national collaborative research project. White also created the William White Family Fund for ALS, which has raised more than $182,000 since its launch a year ago. All proceeds support the Neurology Translational Program research that Kolb leads.
“It’s not about William White at all. It’s about the bigger cause,” White says. “Sometimes when you get diagnosed, that’s when life really begins. If I can be a voice for ALS, trust me, that’s a lot more important than playing Ohio State football and 11 years in the NFL.”
The voice rings out as a burst of life on this October afternoon while Homecoming tailgaters mingle in a scarlet-and-gray sea of smiles, food and drink.
“Heeeeeeeyyyyyyy! You owe me a Chipotle sandwich!” White yells to a fellow engineering graduate from Knoxville, Tennessee.
“How you doing?” asks Darrel Kohlhorst ’70.
“Oh,” White says, “I can’t complain.”
The hands of William White cramp, and once in a while they drop things. Mornings are the hardest part of his day. Taking a shower, putting on clothes and brushing his teeth are becoming more difficult. His shoulders are arthritic, and his arms — once the muscled pistons of a world-class athlete — are thin and growing weaker. Nikol is there to assist, and he’s forever grateful. Adaptation helps, too. He’ll put his belt through his pants’ loops before slipping them on. Problem solved. It’s the engineer in him coming out, William jokes.
“In my head I’m thinking, ‘Oh, I feel so pitiful,’ but it’s just for a second,” White says. “Unless they come up with something where they can get my motor neurons back active, then, hey, it is what it is. You just live with it.”
For White, living means not dwelling on his plight or the fact that scientists are still searching for the cause of ALS and treatments to halt its progress, 150 years after French neurologist Jean-Martin Charcot identified the disease. What we do know is that, as ALS advances, nerve cells responsible for controlling voluntary muscle movement progressively die, meaning muscles stop moving because they no longer receive signals from the brain. Most people with ALS eventually die from respiratory failure. The disease has taken the lives of actor David Niven, Hall of Fame pitcher Jim “Catfish” Hunter and, earlier this year, NFL star Dwight Clark and renowned theoretical physicist Stephen Hawking.
“ALS is particularly cruel because it’s not like suddenly you’ve lost function,” Kolb says. “It’s this drip, drip, drip of, ‘Well, at least I can do this,’ and then later that goes away. ‘Well, at least I can do this,’ and then that goes away. It’s also relentlessly progressive.”
White, in turn, is relentlessly positive. It has been his nature not to worry about anything he can’t control since growing up the youngest of seven children in a poor part of Lima, Ohio. Determination led him to finish his engineering degree while playing in the NFL, and that steady, strong mindset met his ALS diagnosis. Grounded by his strong belief in God, he immediately told Nikol and their two children, Brendon, a sophomore defensive back for Ohio State’s football team, and Brea, a high school senior, that they shouldn’t worry, because his health is in God’s hands. The family moves forward with faith as the sturdy foundation of their home in Powell, north of Columbus.
“All I have is my faith,” Nikol White says. “I have no fear. I have no worry. And I promise you, it’s only because of God. It’s not me and my own strength. I serve a great big God, and this is nothing to him.”
While his family closes ranks around that foundation, White spends his days as an open book for the benefit of ALS research. When asked, he doesn’t hesitate to tell his story, always painting with bright colors. Yet he views himself as one brick on the path of making a difference. Ask about him, and White quickly downplays his own trouble and broadens the focus to the greater ALS community, talking passionately about the research being done at Ohio State.
“I think one of the reasons I was diagnosed was to bring awareness to ALS,” White says. “And that awareness will probably bring more funds so that they can come up with a cure or some way to slow the disease down.”
Envisioning a better future for others dealing with ALS means it doesn’t matter to White that he’s struggling to brush his teeth. “Nothing is ever about you,” he says.
Instead, White thinks about the thousands of others with ALS, many of them unable to talk or walk, struggling to eat and even breathe. He thinks about Ohio State’s clinical therapists managing care for ALS patients, and how university researchers’ dogged pursuit of a cure deserves a bigger spotlight and more money.
White looks in the bathroom mirror, ponders how he can help, and thinks: “Let’s go get it done.”
A real inspiration
The hands of William White are palm-side up, his arms outstretched in mock indignation at a teammate who’s sitting on a downtown Columbus bench not long after the start of the Walk to Defeat ALS on a September Sunday.
“Just like the Browns! They won a game and they want to take a break!” says White, another laugh bellowing forth.
An hour earlier, children giggled at White as he hammed it up with a few sports mascots, including Brutus. His humor fits the good-natured vibe of a fall morning sparked by a bright sky, blaring music, and smiling families and friends.
“He is a very warm and kind person,” says Jan Deringer Daily ’80, a graduate of the College of Nursing.
These words have been typed in an email because Daily, diagnosed with ALS three years ago, has difficulty speaking. She’s also in a motorized wheelchair. At night, and sometimes during the day, she relies on an external ventilator to breathe. Coping with such struggles, Daily appreciates White’s participation in the Walk to Defeat ALS.
“As someone living with ALS, he understands how the disease affects our lives,” Daily says. “His recognition as a former Buckeye and NFL football player puts a personal face on ALS. That will help raise awareness across the vast Ohio State community and the nation.”
The Walk to Defeat ALS raised more than $250,000, but White’s natural competitiveness surfaced when asked for his impression about attendance. It was just over 1,100, compared to the 20,000 participants — and more than $1.8 million raised — at this year’s Susan G. Komen Race for the Cure in Columbus.
“I think it’s good, but it needs to be bigger,” White says. “ALS needs to be thought of the same as cancer, because it’s a serious disease. The issue needs to be out there.”
Getting the word out concerns him more than his own physical state. In examinations every three months, Quick has found White’s legs are strong and his ALS is progressing slower than average. Why? No one knows. The disease is brutal and endlessly mysterious.
“William is one of those people who keeps me up at night sometimes,” the neurologist says. “It’s a real inspiration to watch how he handles the disease. He’s been a very big advocate for ALS by promoting research and philanthropy. Being William’s doctor is a privilege.”
White appreciates the sentiment but doesn’t pause for praise. Nor does he wallow in why or woe. “I don’t have time to try to figure out everything,” he says. “I’m trying to live my life.”
Living means loving to White, and that means lending a hand in an endeavor bigger than himself.
“We’ve got Buckeye Nation out there, and there’s nothing that we as Buckeye Nation can’t overcome,” White says. “Look at all the alumni we have at Ohio State. If we can get a quarter of them to give $20 or $50 a year to ALS research, look at the money we could have for Dr. Kolb to do research. That would be a tremendous amount of impact.”
For White, it all starts with a simple question, one he asks himself each morning about how to view his diagnosis and approach the day ahead: “What are you choosing to do?”
ALS and football
William White’s passion for football is as strong now as it was during his four years starting at Ohio State (1984–87) and the 11 seasons he played in the NFL, though researchers are exploring links between the game and ALS, which seems to disproportionately afflict football players.
White, 52, doesn’t blame football for his diagnosis and says he has no regrets about playing a sport that he loves, in part, for teaching him life lessons such as teamwork and perseverance. “You choose to play,” says White, who competed for the Detroit Lions, Kansas City Chiefs and Atlanta Falcons from 1988 to 1999. “Nobody put a gun to your head and said, ‘You better play football.’”
Courtesy William White
In June, former San Francisco 49ers receiver Dwight Clark died of ALS at age 61. Clark said he suspected football was the cause. About 20 NFL players have gone public with their ALS diagnoses, including Steve Gleason, who created the foundation Team Gleason to help patients and further research. He is the subject of the 2016 documentary “Gleason.”
A report published by the Centers for Disease Control and Prevention in 2013 found that NFL players are four times more likely to have ALS than the rest of the U.S. population. Some studies suggest military veterans and soccer players also develop ALS at an above-average rate.
“It’s difficult to prove a cause-and-effect relationship without more investigation, but there’s definitely an association with playing football and ALS,” says Dr. Kevin Weber, a neurologist at The Ohio State University Wexner Medical Center. “There’s still a lot more research to be done that is under way currently. As of right now, we can’t say there’s a direct link.”
Sharing a purpose
William White and Chris Spielman formed a bond playing football together for four years at Ohio State and six seasons with the NFL’s Detroit Lions. Now they’re teammates again, raising money for ALS research, a response to a difficult situation Spielman knows well.
The Stefanie Spielman Fund for Breast Cancer Research, named for Spielman’s late wife, was established in 1998, when she was diagnosed. It has since raised more than $22 million for The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute.
Spielman recalls their candid conversation. “I remember saying to William, ‘You’re in a great position now to make a difference in somebody’s life. Nobody can make that choice for you. But with your personality and who you are and what you believe and what you stand for and your dynamic energy, you can do something great.’”