'Awesome isn't easy': Ex-Saint Steve Gleason inspires as he battles ALS
We don't know much about ALS, but I can tell you this: The disease picked the wrong guy when it invaded the brain and spinal cord of ex-New Orleans Saint player Steve Gleason.
|Friends Scott Fujita and Gleason are fighting this thing together. (Getty Images)|
NEW ORLEANS -- Sitting in his mechanical wheelchair and trying to talk, struggling to make people understand, New Orleans Saints folk hero Steve Gleason brought his press conference on ALS to a standstill.
This was my fault.
What had I said? Nothing problematic, I thought. For several minutes Gleason's shaky, computerized voice had filled this room at the New Orleans Convention Center on Wednesday, and now that it was time to ask questions I wanted to know how he had done it.
This press conference was all about Gleason's determination to fight amyotrophic lateral sclerosis (ALS), to make the hell-on-earth death sentence a little less hellish by fighting it with advanced technology -- technology like operating a computer, even speaking through it, with your eyeballs. And so when Gleason's close friend and former teammate with the New Orleans Saints, Scott Fujita, asked if there were questions, I had one:
"How was Steve speaking to us? Was that recorded or was he doing it with his eyes or what?"
Fujita was answering -- "That was his synthetic voice. He logged hours of his voice, putting it on the computer, and he [summons the words] with his eyes" -- as Gleason started to fidget. Before Fujita had finished talking, Gleason was mumbling something. People were walking up to him, listening, trying to understand. Finally, a woman to Gleason's right got it.
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She said, "Can you turn Steve on? In the back? He wants to talk."
She was referring to his computerized voice. His speech earlier had been taped, but now he wanted to talk live and had discovered his computer's microphone wasn't turned on. A few seconds later his shaky, computerized voice was coming through the speakers:
"I can answer questions," he said. "Just be patient as I type."
Nobody talks for Steve Gleason. ALS has taken much from him, but it hasn't taken his ability to be heard.
• • •
We don't know where ALS comes from. It affects roughly one in 20,000 people worldwide. Of those, roughly 10 percent got ALS because of a genetic defect. The other 90 percent? We don't know why they got it, or where it came from, or what the risk factors may be.
We don't know much about ALS, but I can tell you this: The disease picked the wrong guy when it invaded the brain and spinal cord of Steve Gleason.
Gleason was diagnosed in January 2011 with ALS -- a patient's life expectancy is roughly 3-5 years after diagnosis -- and just about the first thing he and his wife did was decide to have a baby. ALS wasn't going to stop Steve Gleason from living his life, and sure enough, Rivers Gleason was born a little more than nine months later, on Oct. 19, 2011.
By then Steve Gleason had already founded Team Gleason, with "a mission to show that people with neuro-muscular diseases can not only live, but thrive." Gleason put together a team of friends and New Orleans business leaders and attacked a disease that for years had driven its victims to silence, and then to death.
"A terminal diagnosis can really mess with your head," Gleason said Wednesday in that computer voice of his. (Here's a sample. Hear it for yourself.) "Honestly, it makes you want to run away to the moon. Many ALS patients want to fade away quietly. This was not for me.
"Because ALS is underfunded, patients have had no option but to fade away and die. That is not OK."
Gleason has shined a light on this disease. He has gone to Washington, D.C. to speak about it. He has attracted corporate sponsors like Chase. He has raised hundreds of thousands of dollars. And he has attracted powerful allies for his fight, NFL coaches and stars who got together to tape a statement that explains how devastating ALS is and how steadfast the NFL is in its support of Gleason's fight. That tape was unveiled Wednesday, with famous NFL speaker after speaker detailing the fast, way too fast, progression of ALS.
Saints linebacker Jon Vilma: "ALS doesn't just kill you. It shuts you down. Little by little, bit by bit ..."
Saints quarterback Drew Brees: "It starts small. Maybe it's holding a pencil that gets difficult."
Ravens linebacker Ray Lewis: "Your mind keeps working, but your body doesn't respond."
Ravens linebacker Brendan Ayanbadejo: "You can't tie your shoes."
Hall of Fame safety Ronnie Lott: "You don't need to tie your shoes because now you can't walk."
As the tape played, Fujita leaned over and wiped saliva from Gleason's chin with a handkerchief. He did it several times, because they're good friends. They have been almost since the day Fujita first laid eyes on Gleason before the 2006 season, Fujita's first with the Saints. First day of training camp, Fujita spots something strange. He asks a teammate, "Who's that long-haired guy in the crazy, freakish yoga position?"
Came the answer: "That's Steve Gleason."
Said Fujita: "I knew we were going to get along."
Gleason was listening to the story and trying to shake his head, no, at the description of the long-haired guy in the crazy, freakish yoga position. His head moves about an inch left, then an inch right.
Gleason is smiling.
• • •
Fujita is another guy ALS didn't account for when it chose Steve Gleason. Friends like this, they don't come along too often. As New Orleans mayor Mitch Landrieu was saying Wednesday, most friends in Fujita's position would have been long gone. By the time Gleason was diagnosed with ALS in 2011, Fujita was with the Cleveland Browns. He had a wife. Two kids. Steve Gleason? That's a tragedy, man, but it's not my problem. That would have been the easy thing for Scott Fujita, trying to stay in the NFL at age 32, to say in 2011.
Instead he joined Gleason in Washington, D.C. He helps him make speeches and raise money and attract NFL friends and coaches for the fight. And Fujita was there Wednesday, sitting next to Gleason, resting his left hand on the right armrest of Gleason's wheelchair, occasionally wiping saliva from his chin, and then delivering a stirring speech that had me in goose bumps.
"This disease is underfunded and largely ignored, and that is not acceptable," Fujita thundered from the podium. "That is not acceptable."
When he's making a point, Fujita slows down and repeats himself.
"No one knows where this disease comes from, and that is not OK," Fujita said. "That. Is. Not. OK."
Then he looked at the media. This was a news conference, after all, not a pep rally. He looked at us and he gave us an order.
"Get this on people's radar," Fujita thundered at us. "That's the challenge to you. That's the challenge. To. You."
Credit to Scott Fujita. But credit also to Steve Gleason, who has an innate ability to attract friends, to inspire, to lead, even as ALS has put him in a wheelchair, unable to move much more than his eyes. The press conference Wednesday was attended by the likes of Louisiana Lt. Governor Jay Dardenne and political power brokers Mary Matalin and James Carville. All spoke. All were moved. Matalin started to cry and then chased herself away from the microphone after calling Gleason "inspiring."
Mayor Landrieu spoke after Gleason, who was no easy act to follow -- which Landrieu acknowledged with one word and a smile after he reached the microphone:
The crowd laughed. What most of them hadn't seen, I would imagine, is what Landrieu had done a few seconds earlier as he approached the podium: He put his right hand on Gleason's cheek, softly, as he walked by.
• • •
There is a metaphor here, if you're inclined to see one. Mayor Landrieu is so inclined. He sees the story of New Orleans in the story of Steve Gleason, a story about a devastating storm that ravaged everything in sight but didn't finish the job. Hurricane Katrina flooded New Orleans in August 2005.
"We lost everything," Landrieu said. "It wasn't some people who lost some things. Everybody lost everything. People here would've been forgiven for saying, 'It's too hard.'
"They said we weren't coming back from Katrina. Well, that wasn't going to be OK."
Landrieu can pinpoint the day New Orleans stood up and said, "We are back." It was Sept. 25, 2006. The Saints were playing at home for the first time in nearly two years, after spending the previous season on the road while the Superdome was repaired. In the first quarter of that first game back, the Saints blocked a punt by the Falcons and recovered it in the end zone for a touchdown. They won that game 23-3. The blocked punt is seen as one of the biggest plays in franchise history.
Steve Gleason blocked the punt.
"On that beautiful day when Steve found whatever it was he found on that football field and blocked that punt," Mayor Landrieu said, "at that moment we transformed ourselves from losers to winners.
"They said we'd never be back. Well, you should venture out and see how New Orleans has come back. And Steve Gleason is a manifestation of that. Steve does it personally, by showing, 'If I can do what I'm doing, you can do it ... It can't possibly be harder than this."
• • •
The Team Gleason House for Innovative Living will open soon in New Orleans, but more are planned. Gleason wasn't going to build one house for people with neuro-muscular disorders and be done with it. He wants a whole bunch of them, all over the country. It's a crazy idea, but then, that's Steve Gleason's specialty.
"We talk about the crazy things Steve wants to do," Fujita said, "and then we do them."
And then Gleason's computerized voice started talking, answering a question from a few minutes ago. That was how this press conference wound down, with the media asking questions and Fujita or the mayor answering them right away as Gleason used his eyes to type his own answer. When he was finished, his eyes would find the key that carried his voice into the speakers.
At one point Gleason and Fujita were asked about President Obama's declaration that he wouldn't let his son, if he had one, play football. It seemed a silly question to ask here, at this press conference, but Fujita answered it with grace and the press conference moved on. And then it stopped, interrupted by Gleason's voice:
"I think for now we will stick to answering questions about ALS," he said.
In the meantime Fujita had been asked about the ravages of ALS, and what seemed to be the most humbling effect the disease has had on Gleason to date. Fujita said he didn't want to speak for Gleason, so instead he used one of his friend's favorite lines:
"Like Steve says, 'It's going to be awesome but it's not going to be easy,'" Fujita said. "Awesome isn't easy."
And then Gleason's voice came through the speakers:
"What is most humbling, you ask? To be honest," Gleason said, "having someone else wash my [privates]."
The room broke into laughter and applause.
Here came Gleason's voice again.
More applause. No, Steve, nothing else. This thing is over.
And it has just begun.
It's OK, you can laugh
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