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"For the past two weeks you have been reading about a bad break. Yet today I consider myself the luckiest man on the face of the earth."
I quoted that speech once to Morrie Schwartz, my beloved college professor and the namesake of the book "Tuesdays With Morrie." He, like Gehrig, was dying from amyotrophic lateral sclerosis, or ALS, which is what everyone called it before it became Lou Gehrig's Disease.
By that point Morrie couldn't walk, dress, wash or turn his head. He lay in his long chair, covered by a blanket, trapped in his withering body.
"Do you remember that speech?" I asked him, mimicking it. "Today … I consider myself … the luckiest man … on the face of the earth?"
Morrie closed his eyes and nodded. "Yeah. Well. I didn't say that." Most people don't. Most people with ALS get scared. They worry. They suffer. The disease remains an elusive foe, striking young and old with no apparent reason or discernment. Most who get it don't live beyond a few years.
Morrie was diagnosed in his mid 70s. He was shocked. Depressed. But at some point, he made a profound decision. He was going to fight back, to teach — because he was a teacher — to his dying day, on what we learn about life once we know we're going to die.
He rose to that challenge. He became a marvel, an inspiration.
ALS has that effect on its inflicted sometimes. It invigorates, even as it enervates. It lights you up, even as it shuts you down.
'I'M GOING TO MAKE A DIFFERENCE'
In April 2017, a songwriter named Bryan Wayne Galentine was also diagnosed with ALS. He was only 49.
"Growing up, Bryan's dream was to play baseball," his wife, Staci, recalls. "He played in college, but then he got injured. Still, he always dreamed of being part of the major leagues."
Realizing he was now stricken by — and likely to die of — a disease named after a baseball player, Bryan got the idea of a single day where all the major league teams would honor Lou Gehrig and call attention to ALS. After all, they had special dates, honoring Jackie Robinson and Roberto Clemente. Maybe they could add one for Gehrig?
So Bryan texted friends he'd made in the ALS community — other patients, their families — and they organized a group called LG4Day to begin the arduous process of lobbying Major League Baseball.
It wasn't easy. The league doesn't just create such days. The LG4Day folks were told the best approach was to contact individual teams and get them on board. Letters were written. Emails. Requests for presentations.
"It was morning until night for Bryan," Staci recalls. "They had meetings, and then with COVID they turned to virtual meetings. But he looked at it as his job. This is what he said: I'm going to finish this."
Bryan had become one of those invigorated ALS patients; the more he lost of his body, the sharper his mind focused. In that way, he was like Augie Nieto, who founded Life Fitness, and then, following an ALS diagnosis in his 40s, dedicated his efforts to create Augie's Quest, which has raised millions for ALS research. Or Pete Frates and Pat Quinn, both ALS victims, who started the Ice Bucket Challenge that raised $100 million to fight the disease.
"(Bryan) always said, ‘We all have a terminal disease. It's called life,'" Staci recalls. "It's what you're going to do with that life that matters. From Day 1, he decided, I
NO NEED TO WAIT
'm going to make a difference." ALS is a slow burning candle. It melts you gradually — robbing your balance, your extremities, eventually your voice. Bryan knew his vocal cords were on the clock. As a long-time songwriter for other people (he'd written country hits for Tommy Shane Steiner and Big and Rich), he decided to record an album singing his own songs before his voice was gone, in part so his wife and two sons would always be able to hear him.
Create Account The name of that album became "While You Wait." The lyrics of the title song include these lines:
"You can stand there at the station
With your ticket for the train
While the seconds turn and the years then fade away
You can change the world
or leave it just the same
While you wait.
Galentine chose not to wait. And because of that, his persistence — and the persistence of the LG4Day group — paid off.
Last week, Major League Baseball announced that starting this year, June 2 would officially become Lou Gehrig Day in every major league ballpark. Players will wear patches with Gehrig's No. 4, while money and awareness are raised across the country.
"We look forward to honoring all the individuals and families, in baseball and beyond, who have been affected by ALS," commissioner Rob Manfred said in a statement, "and hope Lou Gehrig Day advances efforts to end this disease."
It was a happy day. And a sad one. Because Galentine was no longer here to witness it.
He died last October.
A TRUE IRON MAN
I asked Staci what her husband would have done were he alive to hear the news.
"Oh, my gosh, first of all, tears would just be streaming," she says. "I mean, happy, happy tears. But then, you know, he would say that this is just the start. … What do we need to do to end ALS? Because we're losing friends every single day."
June 2 was chosen because that was the date, in 1925, that Gehrig started in place of Wally Pipp and began his iron man streak of 14 straight years without missing a game.
This June 2, Staci and her two sons hope to be at the Baltimore Orioles game, their favorite team. "We already checked the schedule," she admits. "It's a home game."
They'll be missing their own iron man that day, of course. But they'll be thinking of him, maybe shed a tear for him, and for the others who have passed, and the 5,000 new people in the U.S. who are diagnosed with ALS every year.
Galentine, like so many with this awful diagnosis, was a warrior. He once wrote, in an essay about fighting ALS, "I guess I only found my voice once I started to lose it."
His voice will go on now, every June 2, when they yell "Play ball!" And when they sing "Take Me Out to the Ball Game," don't be surprised if you hear his echo.
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