ONE OF LIFE’S great complexities is our ability to be more than one thing, despite outside perceptions of who we are. Your coworker may quietly be a great painter. Your favorite actor’s true passion may lie in the garden. Each life is a tapestry, appearing differently depending on the vantage point.
Bernie Williams is best known as an all-star centerfielder in baseball and four-time world champion. Less well-known is that he’s an award-winning jazz guitarist and composer whose performances have graced some of the world’s most renowned music venues. He is also a dedicated advocate whose work has been shaped by a deeply personal experience: a caregiver for his late father.
Williams’ father died of idiopathic pulmonary fibrosis (IPF)—a progressive form of interstitial lung disease (ILD)—in 2001. The loss turned the athlete and musician into a passionate advocate for ILD awareness. It was in the midst of his playing career that his father—the man he considers a “superhero” and taught him how to hit a ball and play guitar—began experiencing dry coughs and colds that wouldn’t go away.
Those health concerns lingered. “They were saying, ‘Well, maybe there’s bronchitis, or maybe there’s pneumonia. Maybe it’s… I don’t know,’” Williams said during the Men’s Health Lab panel Beyond the Scars: Navigating Life with Interstitial Lung Disease. “That process took us about five years before we were able to have the right diagnosis. Even then, I was like, ‘What’s idiopathic pulmonary fibrosis?’ We didn’t know anything about it.”
His IPF Awakening
WHILE HE DIDN’T realize it then, his family’s experience with IPF inspired Williams’ future advocacy. Today, he partners with Boehringer Ingelheim, a global leader in ILD research and treatment, on Beyond the Scars, a campaign developed to educate patients and caregivers about ILD. Through the campaign, Williams hopes to raise awareness of conditions like IPF and help reduce the risk of misdiagnosis—so fewer people are left asking the same question he did: “What’s idiopathic pulmonary fibrosis?”
ILD is a not a single disease, but an umbrella term for over 200 lung conditions—including IPF—that can cause inflammation and scarring, or fibrosis, in the lungs. It can be difficult to diagnose, and too often it’s caught years into the condition—which is problematic, as early detection is critical to receiving treatment that can extend life and slow the disease’s progressive nature.
Unfortunately, Williams’ father’s condition was not caught early.
Not knowing what his family was up against, Williams says they were ready to do whatever had to be done, especially since he thought of his dad as a fighter in all aspects of life. “We eventually found out that there was no cure for it,” he says. “It was devastating to feel that there was nothing that we could do for him, and he was just getting worse and worse and worse.”
“It was devastating to see this guy become a ghost of what he was.”
The sense of helplessness weighed on Williams. “I was at the height of my career,” he says. “We were in that great run that we had in the ‘90s, winning all these championships. But I still had this thing in the back of my mind.”
He was there in spirit, but not always physically. The brunt of his father’s care fell to Williams’ mother and brother. “It was devastating to see this guy become a ghost of what he was,” he says, “and just kind of slowly deteriorate to the point that he was bedridden at the end.”
A Legacy of Awareness
WILLIAMS DESCRIBES HIS father as “old school,” the kind of man who evokes a sort of western-film masculinity. He didn’t want to go to the doctor and get help. “His procrastinating,” Williams says, “exacerbated his condition, where, at the time that he was actually diagnosed, he couldn’t do much.”
He hopes sharing his family’s experience will encourage others to recognize persistent symptoms, seek answers early in the process, and give patients and their caregivers more time and more options.
Honoring his father’s memory remains central to that mission. “This is why I’m doing what I’m doing,” Williams says. “To pay tribute to his life, to thank him for everything that he did for us, and also because he wanted me to raise awareness and have all this information that we learned the hard way not to be so hard for people that are experiencing the same thing.”
“If you feel that something is off, go and check,” he continues. “Keep fighting, keep looking for the answers that you need to take care of yourself.”