Former NFL player Steve Gleason gets candid about ALS journey: "This body may be a prison but my mind is free"
Steve Gleason helped lift the spirit of New Orleans with his iconic punt block during the Saints' first home game after Hurricane Katrina in 2006 – two years before he retired from the NFL.
In 2011, the former New Orleans Saints safety was diagnosed with ALS. He believes that block, which he has called one of his proudest moments, saved his life.
"In 2006, when I blocked that punt on Monday night football, it was undoubtedly a phenomenon that was much more important than winning a football game," Gleason said in an interview that aired Monday on "CBS Mornings."
Creating "Team Gleason"
Shortly after his diagnosis, Gleason and his wife Michel made it their mission to help empower others with ALS and raise awareness for the disease, creating the Team Gleason Foundation. The foundation has provided over $40 million in technology, equipment and care services to people with ALS.
"So many people have told us that our foundation's efforts and support have saved their lives. But if I didn't block that punt, I'm just another has-been football player. It's probably that I'd just fade away and die anonymously. I don't see any of this happening," Gleason said.
In a recent text conversation with his friend Brian Jeansonne, a former pastor from New Orleans who was diagnosed with ALS in 2020, Gleason was asked if he believes he'd have the same range and impact on ALS without that legendary 2006 block.
"My answer was, 'If I don't block the punt, I'm probably not alive," Gleason said.
He added, "But here we are. I did block the punt…and this community, my family and friends and their love continue to uplift me throughout this crazy wonderful journey with ALS."
Because of his heart and strength, Gleason was honored with the Arthur Ashe Award for Courage at the 2024 ESPYS.
"Steve Gleason has always been determined to write his own story and live to be 109. Through it all, he has never given in, never stopped fighting, No white flags. And never stopped finding ways to inspire, impact, and write his own story," former Saints quarterback Drew Brees said at the 2024 ESPYs when introducing Gleason.
Living with ALS
When Gleason was diagnosed with ALS, he admits he had to tackle a wide range of emotions – going from frustrated to fearful, to angry. Gleason and Michel shared candid details about their journey with ALS in a new memoir, "A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence," co-written with Jeff Duncan.
"The readers will see that 13 years of living with this gnarly disease and I'm over a decade past my expiration date, so I have the wilderness of fear tattooed all over me," Gleason said.
Through the process of losing muscle control, Gleason said he held on to the one thing he has control over: his mindset.
"This body may be a prison but my mind is free," Gleason said.
Michel admits she's still tackling feelings of anger and frustration.
"I have not transcended it all like Steve has. But also [I'm] able to move and talk and feel. I'm proud of him for where he is because I really can't imagine…having to do what he does every day," she said.
Gleason uses a special computer equipped with eye-tracking software to communicate daily. But the technology isn't always perfect.
"His technology doesn't always work. His eyes get tired and some days I just want to be like I just wish today we could have like a regular conversation to figure out the next week," Michel said.
Sometimes, Michel said, it's hard for Gleason to communicate with his 5-year-old daughter Gray and 12-year-old son Rivers.
"It's painful to watch, because I know how much he wants to be communicating with them," she said.
"We all have a timeline"
Gleason believes "we all have a timeline," and he finds that concept "absolutely beautiful."
His advice to others: live like today is the last day you'll be able to move, talk and breathe on your own.
If you start to shift your mindset, Gleason said, your perspective will change.
"Will you be more appreciative and less concerned about achievement or material success knowing this is your last day of moving?" he asked. "When you hug your child or run your hand through their hair, knowing this is the last time, how much will you appreciate the preciousness of that moment?"
"Mic drop," agreed Michel before giving him a "forehead to forehead" hug.
Watch David Begnaud's full interview with Steve Gleason here.
David Begnaud loves uncovering the heart of every story and will continue to do so, highlighting everyday heroes and proving that there is good news in the news with his exclusive "CBS Mornings" series "Beg-Knows America." Every Monday, get ready for moments that will make you smile or even shed a tear. Do you have a story about an ordinary person doing something extraordinary for someone else? Email David and his team at DearDavid@cbsnews.com