-
Jeff PassanESPN
WHEN HE WAS told he was going to die, Bryan Wayne Galentine started to think about what he wanted to leave behind. Every day, for however long amyotrophic lateral sclerosis allowed him to live, the disease was going to steal from him. It would come for his legs, and then it would attack his lungs, and then it would rob his voice. His recourse, his way to fight the inevitable, was to make damn sure it didn’t take his legacy.
First, he recorded an album. When his diagnosis came on April 6, 2017 — ALS, no known cure, two to five years to live — Galentine was living in Nashville, Tennessee, where he had moved to become a country music star but found his niche as a songwriter, a down-home poet. Before ALS’ ravages took hold, Galentine would make sure Staci, his wife, and Grayson and Bennett, his two boys, never would forget what he sounded like. And he’d let the world hear words of hope and joy underpinned by defiance — that even if ALS would win the war, he’d take his share of battles.
There were plenty of those, big and small, and Galentine was too stubborn to back down from any. It wasn’t an annoying sort of stubbornness, either, off-putting and pigheaded. The charm of B-Wayne, as his friends called him, was that he could ask for something and you’d feel guilty for not having given it already. When Galentine attached himself to a project, it was bound to happen.
It’s what made the plan he hatched two years ago so audacious. Major League Baseball was a monolith. Galentine didn’t care; he always needed something to scale. He had given his family everything he could. What he wanted to leave behind now was for everyone already acquainted with the malevolence of ALS — and everyone else, who may not understand but would if Bryan Wayne Galentine had anything to say about it.
AMYOTROPHIC LATERAL SCLEROSIS is a wretched disease. It is a neurodegenerative disorder that slowly chokes the brain’s motor neurons, which control voluntary muscles. The progression is a slow march toward paralysis, leaving fully acute minds trapped inside of bodies that no longer function. There are different variants. Stephen Hawking lived for more than 50 years with it, though he’s an outlier. More than 5,000 Americans are diagnosed with it every year, and almost all die within a half-decade.
A little more than two years passed between Lou Gehrig’s diagnosis and death. More than 80 years later, the Hall of Fame first baseman for the New York Yankees remains the most famous ALS patient, with the condition colloquially called Lou Gehrig’s disease. It wedded baseball inextricably to ALS.
In 2008, Michael Goldsmith, a lawyer with the disease, asked in a Newsweek op-ed why MLB didn’t better honor Gehrig. The next year, on July 4, the date of the retirement speech in which he said famously, “Yet today I consider myself the luckiest man on the face of the earth,” MLB paid tribute to Gehrig in all 15 stadiums holding games. Goldsmith died four months later. The homage to Gehrig did not continue.
In 2014, a former Boston College baseball star named Pete Frates, who had been diagnosed with ALS, dumped a freezing-cold bucket of water on his head and started a phenomenon. The Ice Bucket Challenge helped raise more than $100 million for ALS research and strengthened Frates’ connection with the Boston Red Sox and all of baseball.
Still, before Galentine’s moonshot, there was no formal tie between the league and the ALS community. Galentine hoped he could be that bridge. He’d grown up playing baseball and adoring the Baltimore Orioles and loved to say if he didn’t get hurt playing in college, he’d have been a big leaguer. The first verse of a song Galentine wrote called “Priceless” recounts the story of a protagonist smashing a ball over the left-field fence, only for it to crash through the windshield of Mr. Winningham’s new minivan.
I spent the next two months cutting grass
Trying to pay for that dusty glass
Grand total, including tax, was 97 dollars and 45 cents
But being known as the Sultan of Swat
Getting to hit the famous shot
Landing in the parking lot
Was priceless
Baseball, like Galentine, was a romantic — something worthy of however much time he had left. It prompted him to tap out a text on June 24, 2019, to two friends in the ALS community: Adam Wilson, who has the disease, and Chuck Haberstroh, whose mother does. At 10:32 p.m., their phones pinged with the message from B-Wayne.
don’t have to comment tonight. been meaning to email you. but do you think it would possible and appropriate to approach mlb with doing something with Lou Gehrig like they’ve done Jackie Robinson? Not so much retire #4 but have everyone wear #4 one game a year? maybe the day he gave the speech?”
The idea didn’t seem too farfetched to Wilson and Haberstroh. Maybe instead of everyone wearing Gehrig’s jersey number they could sport patches that include the letters ALS for maximum awareness. And instead of July 4, when Independence Day festivities could overshadow it, perhaps June 2 — the day of the first start in Gehrig’s 2,130 consecutive-games-played streak and the day he died in 1941.
It seemed simple enough. The three amigos — that’s what Galentine called himself, Wilson and Haberstroh — reached out to Jon Sciambi, the longtime ESPN announcer and ALS advocate, and sought advice. As good as the idea was, he said, the easiest path to making it happen was to garner the support of all 30 teams. If the clubs were onboard, the league couldn’t say no. The cause was too good, the story too compelling. Decades after Gehrig died, ALS remains a scourge with hope found only in drug trials and experimental therapies. Gehrig’s words that July 4th day, the optimism he radiated — “I might have been given a bad break,” he said, “but I’ve got an awful lot to live for” — spoke to Galentine.
“Lou Gehrig,” Haberstroh said, “inspired him to basically live up to those things and really help others through baseball.”
WHEN HE WAS 14 years old, before bucket lists were a thing, Bryan Wayne Galentine was putting his dreams onto pieces of paper. His pubescent mind was a great big cliché. Fifteen years from then, he wrote, he’d be retired even though he never worked. (He’d win the lottery, naturally.) He’d have a car and a boat and golfed a lot.
It didn’t quite work out that way. After growing up in Vienna, Virginia, about a half-hour outside of Washington, D.C., Galentine played baseball at Winthrop University as a freshman, transferred to George Mason and then followed his wanderlust to Nashville. One day, while at the apartment of a sound engineer working on a song, Galentine met his roommate, a pretty girl who was homesick and dressed in “Cat in the Hat” pajamas. He was smitten nonetheless.
Staci was his perfect foil: sassy enough to tell him when he was being too emotional, charming enough to draw him out of his naturally bashful shell, fun enough to share in his ambitions, open-minded enough to grow accustomed to his idiosyncrasies.
Galentine would pull the car to the side of a road and take a picture of a billboard that might inspire a lyric. He’d hum and warble and workshop songs in the shower, where there were great acoustics. Sometimes at church he would grab a bulletin and scribble words. Galentine’s brain fired all hours of the day. He could talk sports, politics, love, the Bible. He would tear up at Hallmark commercials and hoard all things sentimental, like the Legos or baseball cards from his childhood. In 2014, he started a Facebook group called “Find the Good Stuff”. He had tired of all the negativity in the world. B-Wayne preferred to share positive stories — of thoughtfulness and care and big hearts and selflessness.
Finding the good stuff in his diagnosis wasn’t easy. It had started a year earlier, when he felt tingling in his hands as he strummed a guitar or typed lyrics on his computer. Numbness crept up his arms. Doctors thought it was carpal tunnel or the detritus of a rotator-cuff injury and tried to repair him surgically. The feeling didn’t dissipate, and after Galentine doubled over in pain one night in April 2017, he went to a neurologist who said it was ALS.
All Staci could hear was the number: 100%, the fatality rate. And when she came to terms with that, she grappled with what her life was about to become. ALS isn’t just a disease that paralyzes those cursed with it. It can cripple caregivers, too. They give, and they give more, and they give everything knowing that their efforts are not staving off anything, that their fight is Sisyphean, and all that sustains them is love, the purest and most unconditional variety.
Galentine rescued himself from the depths of what was to come and started to map out what could be. He had his album. One time, Staci came home and saw the shells of two dozen eggs on their kitchen countertop. She looked sideways at Galentine. What was he doing?
“I was going to perfect my omelet,” he said. “You know, I’ve always wanted to do that.”
He loved omelets. He never had learned to make one. So he decided to try until he got it right. This was how he was going to live his life, however long it lasted: by the Tao of the omelet. If you want to do something, what are you waiting for?
“What’s your omelet?” Galentine liked to ask people. He had omelet merch and a website and social channels and, with his voice still there, with his round face and bald head and buttery, twanged-out voice so inviting, he sold the idea well. Little did he know, in those earliest days of his diagnosis, he had another omelet, one that would take years to cook.
AT FIRST, GALENTINE’S optimism almost overwhelmed him. The three amigos had started pursuing support inside of baseball for Lou Gehrig Day. Colorado was the first team to say yes. The father of Rockies outfielder Sam Hilliard has ALS. Oakland was in as well. A’s outfielder Stephen Piscotty lost his mother, Gretchen, to ALS. Stars said they’d back the cause: Gerrit Cole, Nolan Arenado, Buster Posey. Hall of Famers supported it, too. Galentine wanted to celebrate every new name, every new team on social media. He never could keep a secret.
“He was the worst,” Staci said. “I couldn’t even tell him what I got the boys for Christmas sometimes. Because he would get so excited and have to share it with them.”
The Boston Red Sox joined the cause, then the Milwaukee Brewers, Minnesota Twins, Washington Nationals, San Francisco Giants and Arizona Diamondbacks. And then … nothing. The stagnation in progress frustration Galentine. That stubbornness showed up. He loved to start his thoughts with a polite apology, then pivot to what he really thought: “I’m sorry, guys, but … “
But ALS doesn’t afford you time. At first, Galentine needed a cane. Then his legs went altogether. Now his speech was slowing. The Lou Gehrig Day team, which had expanded beyond the three amigos to include others in the community, already was beginning to lose people. Frates died Dec. 9, 2019. A trip to the winter meetings by a representative of the group yielded nothing substantive. Months went by. Frustration mounted. They didn’t know how to reach the decision-makers, and even if they did, they weren’t sure this idea they believed so perfect would resonate.
By October 2020, the three amigos were desperate. While Galentine continued to check off his bucket-list items, he needed a ventilator to help breathe and was considering getting a tracheostomy, a surgical opening in the neck that would allow him to breathe through a tube. He planned on being around for a while, whether baseball wanted him or not.
Wilson took Galentine’s exhortations to heart. His latest plan was simple. He was going to guess the email addresses for team presidents around MLB and send a cold letter asking for help. The first team, alphabetically, was Arizona. He hit send and didn’t get a mailer-daemon. Then his inbox pinged with a reply from Derrick Hall, the Diamondbacks’ president.
Hall knew too much about ALS. When he was a junior in high school, he would go to visit his grandfather, who had been diagnosed with it. They would go to the pool, and Hall would lift him into the water, hold his arms and guide him to the deep end and back, for hours on end.
“I’ll never forget that,” Hall said. “And as much of a smile as you could see on his face, it was there.” He was in. And he was going to enlist help. At 3:03 p.m. ET on Oct. 19, Hall sent an email to all 30 teams asking for support for league-wide Lou Gehrig Day. Twins president Dave St. Peter and Red Sox president Sam Kennedy co-signed the effort. Within five minutes, the first reply came. It was from Randy Levine, the president of the New York Yankees. The group worried that because the Yankees honor Gehrig regularly, they might not join the effort.
“I support it,” Levine wrote.
Then came a note from Stan Kasten, president of the Los Angeles Dodgers: “The Dodgers and I are on board.”
And another from Derek Jeter, the former Yankees Hall of Famer and owner of the Miami Marlins: “You have my support and that of the Marlins.”
It was happening. Eight teams turned to 10 to 15 to 20 to 25. And the next day, Oct. 20, before Game 1 of the World Series, the Seattle Mariners were the final team to say yes. More than a year of disappointment and sadness melted away in 24 hours, thanks to a random email with a heaven-sent reply.
Galentine was in Tennessee, Wilson in Cincinnati and Haberstroh in Connecticut. They had never met one another, ALS making travel difficult and COVID putting a kibosh on any plans, but they looked at one another as more than just amigos. They were brothers, bonded by this disease that the world needed to understand better — and would.
“Guys,” Galentine texted them, “we did it.”
TO CELEBRATE, GALENTINE ate two plates of spaghetti, one of the last foods he could swallow easily, and washed them down with Oktoberfest beer. This was not the good stuff. It was the best stuff. He exuded energy. Staci felt it. All the feeling of defeat, of helplessness, dissipated. He scaled the monolith. He won. Before he and Staci went to bed, Galentine used the eye-gaze technology with which he communicates to say to her: “That right there … was a good day.”
Staci swooned. She loved all of Galentine’s songs, and “A Good Day” was among her favorites. It starts:
Eight-year-old stands at the plate
One base hit’ll win the game
Swings that bat with all his might
He’s still grinnin’ when mom and dad tuck him in that night
You only get so many in this life
When it feels like everything you do goes right
And years from now you can still look back and say
That right there … was a good day
The good day continued into Oct. 21. A few days earlier, Grayson and Bennett had an odd request for their father. They wanted to look at his old baseball cards with him. There were four of five big tubs and then a secret stash of the good ones. All the talk about Lou Gehrig, about baseball, had piqued their interest, and together they sat, rifling for hours, dad talking, boys listening, mom beaming.
“He talked about his boys all the time and he talked about Staci all the time,” Haberstroh said. “And I really want her to know that and want her boys to understand how much his father loved them. I can’t imagine going through what he was going through and still continuing that fight and still being a dad and a husband. He’s an inspiration to me as a father.”
That was going to be the beginning, too. He’d finally cooked his omelet. He could take a break. Even though MLB hadn’t technically given the go-ahead, he understood it was a formality. He told Staci and the boys: “We’re going to go to Baltimore.” And as much as it meant to him, meant to them, they understood that unlike the album, this wasn’t theirs.
“We could have just kind of huddled down and stayed in our little house and lived this out,” Staci said. “And quite honestly, there were days when I would be frustrated because we’re at the dinner table and he’s on an ALS call talking about Lou Gehrig Day. And I remember saying this so vividly to my mom, but this wasn’t about Grayson and Bennett and me.
“This is about thousands of other people that don’t get to see tomorrow. This is a disease that’s underfunded, it’s undereducated and it’s underadvocated. And Bryan wanted to see that change.”
The next morning, Staci drove 30 miles from their sleepy suburb to Nashville for a business meeting. When she sat down, she received a call from Galentine’s caregiver. He wasn’t breathing.
Staci sped home. When she pulled into the driveway, she recognized the cars of Galentine’s closest friends. She had just brought Bryan to the beach, and Lou Gehrig Day finally was a reality, and there weren’t a major doctor’s visits or hospital trips or any clear signs that his breathing was changing, that his heart was weakening, that his body this disease put through so much already was finally saying enough. Those drugs trials and experimental therapies are giving hope, and maybe she knew deep down that it was too late for him, but she never would think it or say it or believe it.
Now he was gone. Bryan Wayne Galentine was 53. His heart, so big, gave out.
Word spread in the ALS community, where Galentine was beloved. The Lou Gehrig Day committee jumped on a call. They weren’t sure what to say. Then they remembered something Galentine brought up in the week. Now that all 30 teams were onboard, they could finally tell the world what they’d spent so long trying to accomplish. Only they weren’t quite sure how to do it.
“We said we need a story. What’s our story?” Haberstroh said. “And it became B-Wayne. B-Wayne has become the story.”
SOMETIMES STACI LOOKS at her husband’s bucket lists. He wrote one after his diagnosis. He wanted to see a Notre Dame football game. They did that a couple years ago. He wanted to see a moose. They saw a moose. They didn’t get to all of the items. They got to enough.
“This was written in 2002,” Staci says. “So this was right after we met. And before we got married. And I was in Branson, Missouri, on a project, a job. So part of his bucket list was to ‘get me out of Branson … and to grow old with Staci.'”
Her voice doesn’t break when she says it. She has shed enough tears for a lifetime. This is her life, and she prefers to be thankful for the time she spent with Galentine than lament what ALS stole from her. No, this is time to be optimistic for the next generation of patients — for Brian Wallach, who is the focus of a 30-second commercial that will roll out Wednesday as the first Lou Gehrig Day happens. She wants to believe that Chris Snow, who was told two years ago that he has between six and 18 months to live, represents something new in the fight against ALS.
Hope.
That’s what Lou Gehrig Day is about. It’s honoring the memory of Gehrig, yes, and all that he meant to the game, to the cause, to the world, but recognizing that someone as selfless and sanguine as him would want this to be more about tomorrow than yesterday. When MLB finally announced in March that Lou Gehrig Day was happening June 2, it meant an entire day of visibility every year — a date on the calendar toward which fundraising can build, around which events can be planned, on which thanks can be given.
In Cincinnati, Adam Wilson will be joined by his daughter, Avery, who will throw out the first pitch of the day that wouldn’t exist without her father.
At Yankee Stadium, Chuck Haberstroh will join his brothers, Steve and Tom, and they’ll hear stories told in the Bronx about the man who in the 1920s played alongside Babe Ruth and owned a sport and a city.
Staci, Grayson and Bennett Galentine landed in Baltimore late Tuesday night. They’ll head to Camden Yards and hear the Orioles recount the story of Bryan Wayne Galentine, whose little seed of an idea June 24, 2019 blossomed into this beautiful thing June 2, 2021. They’ll watch the Orioles honor him as their Birdland Hero and donate $5,000 in his honor to I AM ALS, the patient-led foundation seen as a beacon in the ALS community. Then, like Avery Wilson, they’ll throw out the first pitch.
“To me,” Grayson says, “it’s like seeing everything that my dad ever did just basically pay off.”
When it’s all over, they’ll head back home, and at some point, Staci will take out the big board with a map of the United States she’s got stored away. Listed on it is every Major League Baseball stadium. The thought is to put a pin in all the ones you’ve visited. It was supposed to be for Galentine. He dreamed of seeing every big league ballpark.
“That was his Christmas gift this last year,” Staci says. “So the boys and I just said, ‘We’re gonna see it through.’ And we’ll finish that and make sure that we can cross those off his bucket list.”