Steve Gleason may always be remembered most for his blocked punt on the night the Louisiana Superdome reopened for the first time after Hurricane Katrina – a play that stirred an already emotional crowd into a deafening, drink-spilling frenzy.
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The retired New Orleans Saints folk hero only hopes he can continue to lift people’s spirits by the way he handles what until now has been a private struggle with ALS, a debilitating and ultimately fatal disease for which there currently is no cure.
On Sunday, five years to the day after his memorable play became a symbol of a devastated community’s will to carry on, Gleason, 34, went public with his diagnosis of amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.
”In a way, I see this as an opportunity to continue to be an inspiration, maybe even more so than I ever have been,” said Gleason, a 5-foot-11, former Washington State standout who forged an eight-year NFL career in New Orleans as a special teams leader and reserve safety.
Now the native of Spokane, Wash., who settled in New Orleans after retiring in 2008, is setting up an organization called Team Gleason. Its mission is to improve the lives of those who have ALS, the symptoms of which include gradual paralysis.
”You have to continue to do things you love,” Gleason said. ”There’s technology available that, if I’m proactive, I can continue to do some of those things. You have to engage in passionate, remarkable human relationships, which has always been important to me.”
Most people live three to five years with ALS after diagnosis, though some have lived longer and research on treatments continues.
When Gleason was diagnosed last January, he and his wife, Michel, had been seeing fertility specialists in hopes of conceiving their first child. He also was trying to finish a master’s program in business administration at Tulane University.
He briefly considered abandoning his school work, but returned to Tulane and got his MBA.
He and his wife also had to address whether they should keep trying to start a family.
”More than ever I wanted to have a child, but it really was my wife’s decision, because if things ran their course with me, potentially she’d have to be taking care of and supporting two people,” said Gleason, who walks with a limp, has limited use of his right arm, and who finds eating and drinking more challenging because of a weakening in his mouth and throat.
”Luckily for me, she didn’t hesitate,” Gleason said. Their first child is due Oct. 28.
When Gleason played, he was easily recognizable by the long curly locks of light brown hair dangling from his helmet, and was a favorite among fans and teammates for the flair with which he played and lived.
In 2006, his last season playing before spending 2007 on injured reserve, he was third on the Saints in special teams tackles with 14. His blocked punt in the victory over Atlanta on Sept. 25, 2006, was the fourth block of his career.
Saints coach Sean Payton said the crowd’s reaction was ”probably the loudest I’ve ever heard any stadium – ever.”
Cleveland linebacker Scott Fujita, who played in New Orleans from 2006-09, said the play was his ”most electric sports memory,” and drove home how important the Saints’ return to the city really was.
Gleason used the term, ”infinite joy,” to describe what he felt in that moment.
Fujita, who remains friends with Gleason, has been both saddened by Gleason’s condition and uplifted by his enduring sense of humor and zest for life.
”He even said to some of us on the phone that he views this as an exciting challenge and opportunity,” Fujita said. ”Steve’s one of the few people I think in this situation who could say something like that and actually mean it.”
Because scientific studies have shown increasing links between brain disease, such as dementia, and the frequency of concussions among football players, Gleason cannot help but wonder if his football career had something to do with his condition. Yet the question of whether he regrets playing football is a complicated one. He cannot be certain that he would have been spared from ALS had he never played football.
He also cherishes the friendships and experiences he gained from his NFL career.
”It was amazing. I got this incredible adventure,” Gleason said. ”I did all these things most boys grow up dreaming to do.”
The Saints invited Gleason to be their ceremonial captain for Sunday’s home game against the Houston Texans.
Dr. Steve Perrin, the chief scientific officer at the ALS Therapy Development Institute in Cambridge, Mass., said he is aware of 27 cases of NFL players being diagnosed with ALS, which is much higher than any other major American pro sport. However, he stressed that a conclusive link between concussions in sports and ALS has been tough to prove. He noted, for example, that there are no documented cases of NHL players with ALS, which remains a relatively rare disease in general.
At this point, Gleason said he is more concerned with how he’ll live with ALS than how he got it.
For now, he can still walk without a cane, however gingerly, and enjoy dinners out with family and friends, though he sometimes needs help pulling a shirt on, washing his hair or cutting a steak.
Talking is getting harder as well, so Gleason has been working on a video library in which he shares his most poignant memories and life lessons, both good and bad. He hopes the videos will allow his child to know him as he was before his symptoms made it more difficult for him to move or speak.
”Especially here in New Orleans, most of the people that my child will encounter, if I’m not here, will say, ‘You’re dad was amazing and he had this great football career, he was a hero for the city,’ and almost in a sense build kind of a mythical image of me,” Gleason said. ”So what I’ve tried to do is sit down and really explain some of the struggles I’ve gone through and the less desirable parts of myself. … I want them to know I went through a lot of the same things they went through. And I’ve had to go through one of the hardest things a person can go through, but hopefully shown the courage and grace and joy you can still have despite these circumstances.”