He’s the New Orleans Saints’ biggest fan, not to mention the perfect beacon for a city that knows a thing or two about emerging from darkness.
As the Big Easy goes for another NFL championship, Steve Gleason is along for the ride.
Sure, his body failed him, perhaps because of the game he loved so much.
But Gleason never lost his desire to live and love and make a difference. That’s really what’s keeping him alive, even though the debilitating condition known as ALS – Lou Gehrig’s disease –has reduced him to communicating with his eyes, some strained facial expressions and a computer-generated voice that he recorded before he lost his ability to speak.
His mind is as strong as it’s been.
So is his passion for the Saints.
He attends practices. He attends every home game. He’ll be there Sunday when they host the Los Angeles Rams in NFC championship game.
“There’s only maybe a handful of guys that played with Steve Gleason or knew Steve Gleason as a player directly,” said quarterback Drew Brees, one of that handful on the current roster. “Yet this team has embraced him. He is absolutely one of us. He inspires all of us every day. He inspires so many people in this community every day.”
Gleason, the former Washington State and Gonzaga Prep player, ensured folk-hero status in his adopted city for one particular play in 2006.
After the Saints spent an entire season playing on the road in the aftermath of Hurricane Katrina, the first game back at the Superdome will forever be remembered for Gleason’s blocked punt that sparked a 23-3 victory over the their biggest rival, the Atlanta Falcons. The game symbolized the rebirth of New Orleans after the devastating storm and a remarkable season that didn’t end until the Saints lost at Chicago in the NFC championship game.
Gleason spent the next season on injured reserve and then retired, so he wasn’t on the field when the Saints captured the city’s first major pro sports championship at the 2010 Super Bowl. The following year, he revealed the diagnosis for amyotrophic lateral sclerosis, a terrifying motor-neuron disease that robs a person of the ability to walk, use his hands, speak, swallow and breathe. The condition is terminal, usually taking its victims within two to four years.
Researchers have theorized that repeated head injuries, like the ones far too common in the NFL, increase the chances of being stricken with ALS. It was cited in the death of former fullback Kevin Turner, who lost his fight almost three years ago at age 46.
But Gleason has never blamed football for his predicament. He’d prefer to keep the focus on what he’s doing in his life, not how he got here.
Like a handful of those with ALS (most notably Stephen Hawking, who battled the disease for more than 50 years before dying last March at age 76), Gleason has defied the expected timeline from onset to death. A tracheostomy allows him to breathe with a ventilator. A feeding tube ensures he gets enough nutrition. His family and support team give him a chance to lead as full a life as possible.
But, most of all, Gleason’s survival is probably a result of his will to keep going, something that wilts away for most suffering with ALS. Now 41, he wants to be around to watch his two young children grow up. He wants to transform his devastating disease into a conduit for hope, to help others keep fighting while doing all he can to find a cure.
His efforts have not gone unnoticed. Most notably, Gleason is the first NFL player to be awarded the Congressional Gold Medal, the body’s highest civilian honor.
“ALS is a remorseless and humiliating disease,” Gleason wrote after learning of the award. But, he added, “Michel (his wife) and I have two spectacular kids, Rivers and Gray. I’m productive and purposeful. In many ways, I feel I’ve conquered ALS.”
The disease certainly didn’t rob Gleason of his sense of humor, which is most evident on a Twitter feed that he keeps humming with a special device allowing him to type out messages using only his eyes, always concluding with his initials “SG” so everyone knows it came straight from him.
Before Saints games, he’ll often park his wheelchair on the sideline near the area where the opposing team is warming up and deliver a good-natured tweet: “(hash)Intimidation.” On New Year’s Day, he wrote “Like most of you … I haven’t moved all day.” After the Saints pulled off a successful fake punt in their 20-14 victory over Philadelphia in last weekend’s NFC divisional round, Gleason wrote “(hash)NeverPunt. Ever” – a reference to the “Dear Atlanta, never punt” jab he sent out before the Saints faced the Falcons in 2014.
In an interesting twist, this year’s Super Bowl is in Atlanta.
Gleason is expected to be there, no matter if the Saints win or lose Sunday. He’s planning to host an event with other ALS victims as part of his Team Gleason foundation. He’s scheduled to pick up another award for his charitable efforts.
Of course, Gleason would really be thrilled if the trip ends with a second Saints championship.
His joy would be apparent to anyone who really looks.
It’s all in the eyes.
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