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Songwriter stricken with ALS gives voice to new Lou Gehrig Day in baseball

by | Mar 7, 2021 | Comment, Detroit Free Press | 1 comment

Eighty-two years ago, Lou Gehrig gave his famous retirement speech at Yankee Stadium, telling fans about a neurological disease with which he’d been diagnosed.

“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 Quinnboth 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’m going to make a difference.”

No need to wait

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.

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.

Contact Mitch Albom: malbom@freepress.com. Check out the latest updates with his charities, books and events at MitchAlbom.com. Download “The Sports Reporters” podcast each Monday and Thursday on-demand through Apple Podcasts, Google Play, Spotify and more. Follow him on Twitter @mitchalbom.

1 Comment

  1. Mark Liston

    What a powerful article. I’m so glad I saw this article just two days from the 2nd. Very close friends will be at the Cubs game that day. I can’t wait to tell him all about what will happen.

    I remember doing the Bucket Challenge and throwing $100 into the pot to help the cause. Little did I know how important it would someday be.
    He
    A couple years ago my wife got a call from her brother informing her that he had ALS. They are just a year apart which reminded MK (my wife) of her mortality. We knew something was wrong – just didn’t know what. He knew something was wrong and didn’t want to go to the doctor in case he was given X amount of time to live. He told MK that he would have 2 – 3 years from the day he was diagnosed. That is how he would cheat death.

    ALS is horrible. Slowly he lost strength in his arms and his legs. He couldn’t even shift the gear on his 4 wheeler – something we got for him so he could get around his property. Next it was his voice. As time went on he couldn’t hold up his head anymore.

    MK retired so she could spend more time with him. We read and watched all we could to try and learn all we could. As you wrote, his mind was a sharp as it ever way. Everything else, however, was slowly failing.

    Near the end of February, about the same time you were writing your story, he was taken to the hospital because he couldn’t breath. Because he was a Veteran the VA was so helpful with a special wheelchair and was even helping outfit the house for it. They also contributed to a van that could transport him.

    When MK got the call he was headed to the hospital she made immediate plans to fly to the hospital. So did another sister. Their sister in law, Pat, had been part of the family for 48 years and the fam wanted to support her . . . just in case.

    As life dwindled down the sisters hoped he could make it to April 1st. He was born on All-Saints day 67 years ago and he was anything but a saint. Making it to April 1st, for obvious reasons, would be appropos. He made it until 2:30 a.m. For hours they played rock and roll in the background knowing he would just love it. At 2:29 an Elvis song came on. He hated Elvis!

    I iinvite you to read the following blog that I wrote shortly after he died.
    https://markliston.wixsite.com/website/post/how-long-do-i-have

    Yea for Brian Galentine and the other ALS victims you wrote about. They were all heroes because of facing the horrid disease. Now, baseball can celebrate Gehrig like he should have be celebrated these past 82 years.

    Reply

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Mitch Albom writes about running an orphanage in impoverished Port-au-Prince, Haiti, his kids, their hardships, laughs and challenges, and the life lessons he’s learned there every day.

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