Since he was diagnosed with ALS, Steve Gleason has taken other patients on adventures, directed a documentary, spoke at the United Nations and landed money to pay for technology for other patients.
By David Meeks , originally posted in USA Today Sports
NEW ORLEANS, Louisiana, January 29, 2013 — Steve Gleason is leading a movement with his eyes.
In the two years since Gleason, who has amyotrophic lateral sclerosis, was diagnosed with ALS, he has lost the ability to walk. Two months ago, he began using a “synthetic voice” that speaks what he types onto a screen via eye-tracking software.
“If I gaze at a letter for 2/10th of a second, it clicks,” says Gleason, a long-haired, quirky fan favorite in his eight-year career with the New Orleans Saints.
The changes in Gleason’s daily life have not stopped him. In fact, his network keeps growing.
From his home in New Orleans, the prolific Gleason uses his eyes to do all he can. He tweets frequently to his 21,000 followers. (Sunday afternoon’s advice: “Quick! Go watch the sunset! Its better than TV. Go!”) He offers comments on his Facebook page, which lists almost 41,000 likes.
He helps drive his organization, Team Gleason, a non-profit he launched to raise awareness about ALS and to take patients on “epic adventures” around the world — not as a dying wish, but as a way to live. In July, he took former Tulane football player Jay Rink, who was diagnosed in 2010, and his two sons on a canoe trip on the Missouri River, a “Team Gleason Experiment” captured in a 30-minute documentary. Gleason co-directed the film, which is now being submitted to film festivals.
It’s Super Bowl week in New Orleans, which for Gleason means another opportunity to shine a light on ALS, particularly with researchers examining whether some cases — about 90% of ALS cases are classified as random — may be linked to repeated head trauma, as is chronic traumatic encephalopathy (CTE).
Mention the big game around the Gleason house, however, and the talk is not about the showdown between the Baltimore Ravens and San Francisco 49ers. It’s about one of his mentors, former Ravens linebacker O.J. Brigance, 43, who was diagnosed with ALS in 2007, continues to work for the team and will meet with Gleason this week.
Both Brigance and Gleason have seen technology improve their lives, and Gleason has not been shy about calling for more ALS patients to get similar help. Last May, he traveled to the United Nations to speak at the Social Innovation Summit, telling business and political leaders that while no cure for ALS currently exists, technology is the key to improving the lives of patients.
While ALS erodes a person’s ability to move and talk, the eyes are typically less affected. Patients can use eye-tracking software, as Gleason now does, to open doors, operate TVs and stereos, turn on lights.
In the UN audience that day was Lois Backon, chief operating officer of global philanthropy for JPMorgan Chase. “My reaction was, this man is amazing,” Backon says. “He’s turning the problem upside down. He gave a powerful speech, and he was telling us that technology can help.”
Backon got involved. Two weeks ago in New Orleans, Chase presented a check for $350,000 for technology at the Team Gleason House for Innovative Living, a resident facility for ALS patients — the second of its kind in the U.S. — that is part of a new $25 million skilled nursing facility to open this spring.
With player safety a focal point of the NFL’s initiatives, the Gleason House has been named a legacy project by the Super Bowl Host Committee, and he’s scheduled to appear at a press event on Wednesday. Gleason says Brignance wants to build another facility in Baltimore.
“I have an incredible group that tolerates my crazy ideas,” Gleason, 35, tells USA TODAY Sports. “Amazingly, some of those ideas are coming to fruition.”
Others say it’s Gleason who amazes them. As his neighbor and part-time caregiver Rick Crozier says: “He gets more done with two eyes than most people get done with two hands.”
Vinnie Varisco, Gleason’s brother-in-law, says Gleason’s message of “No White Flags” has resonated around the world. “I really don’t think there is anybody comparable to Steve in terms of being the face of ALS, since Lou Gehrig,” Varisco says.
On Monday, Team Gleason released a dramatic public service announcement that features 18 NFL players and coaches — including Drew Brees, Ray Lewis, Scott Fujita, Aaron Rodgers, Stephen Jackson, Mike McCarthy and others — speaking on the ravages of ALS and calling for more research to find a cure. Gleason also appears in the video.
Gleason, who retired in 2008, turned to Fujita, his close friend and former Saints teammate, to help him ask players if they would participate. Starting just before Christmas, Gleason wanted the spot ready for Super Bowl week.
“To be honest, I didn’t know in the early stages if we’d be able to pull it off,” Fujita says. “To say I was floored with the amount of support we received would be an understatement.”
‘Awesome ain’t easy’
As researchers continue to study the long-term damage to the brain from repeated hits to the head, Gleason ponders whether his football career contributed to him developing ALS. A special-teams demon, Gleason is best remembered for blocking a punt that was recovered for a touchdown against the Atlanta Falcons in the Saints’ first post-Katrina game in the restored Superdome in 2006, a play many New Orleanians felt symbolized the city’s comeback.
As for the game’s impact on his health, Gleason will go as far as saying “current research shows that NFL players are more likely to have certain brain diseases.”
But he adds, “There have been 27 players diagnosed with ALS in the past 60 years. More ALS patients than that, who never played football, will die in the next two days. For me, this disease is global.”
Life expectancy for ALS patients averages two to five years from diagnosis, though there is some evidence patients are now living longer, according to the ALS Association. Gleason knows other ALS patients who were diagnosed before him who retain more ability to move and speak, because the disease varies by individual.
To which he says, “The changes in my physical body are remarkable. I am born new every day.”
Not that this should interfere with his travel plans. While in Cleveland in December to have a diaphragm pacing system surgically implanted to regulate his breathing, Gleason visited Fujita, who played for the Browns this season before suffering what could be a career-ending neck injury, and proposed the next Team Gleason Experiment.
“He said he wanted to go to Machu Picchu in April and he wanted me to come along,” Fujita says. “I said, ‘Machu Picchu? As in Peru? That’s 8,000 feet isn’t it?'”
Fujita did not hesitate.
“I said, ‘All right, let’s do it.’ That’s how Steve is. He always says, ‘Awesome ain’t easy.’ It’s not easy for him to put a shirt on. Nothing’s easy. He comes up with this stuff and I don’t know how we pull it off, but we do, and Steve is the catalyst.”
To Gleason, it’s the natural continuation of what he’s always done — travel the world. His message is not that people should live their lives to the fullest in case something happens, but to keep doing it even if something happens.
In the two years since his diagnosis, Steve and Michel Gleason have welcomed a baby boy, Rivers, now age 15 months, and purchased a new home near Lake Pontchartrain. Of his wife, Gleason says, “Michel is as strong as ever. She amazes me every day.”
As Rivers bounds into Gleason’s in-home electronics “lab,” he sees his father and erupts, “Daddy!”
Gleason’s face lights up and, best he can, he answers his son.
It’s all part of the attitude he projects constantly about life. While the the public may see Gleason as a former football player, to those who know him, he is more of a modern-day philosopher who used to play football.
“I believe happiness is a choice. Some days it is a very difficult choice,” he says. “This is true for everyone. I look at the human life like an experiment. Every new moment, every new experience, tragic or otherwise, is an opportunity to gain a more accurate perspective and helps lead me to clarity.”
Helping others live
Despite the daily struggles Gleason endures, he continues to get things done, and to influence those around him.
Says Crozier, 45, his neighbor who helps Gleason get ready for bed every night: “He’s one of my mentors. … I have enjoyed being around him.”
Varisco, his brother-in-law, says “every problem we have in life becomes laughable when you look at what he goes through.”
Jeff Duncan, a columnist for The Times-Picayune who has known Gleason since 2000 and written frequently about him, has become such a good friend that the two are planning to co-author a book on Gleason’s experiences.
“He’s got some kind of quality, there’s like a magnetism to him,” Duncan says. “You know he’s genuine. He’s one of the few players I’ve ever known who never acts like he was in the NFL. He does not care if people know. He’s adventurous, and he’s curious about life.”
As much as Gleason needs a support network, he’s also become one.On Sunday night at Rock ‘n’ Bowl, a popular New Orleans music venue, Gleason was there to see a performance by his father-in-law’s band, Paul Varisco and the Milestones.
Two other ALS patients were on hand, including Mark Manchester, 51, an electrical engineer who was diagnosed six months after Gleason. Manchester was devastated by the news, and viewed it as a death sentence.
Manchester says he changed his will to instruct doctors not to take extraordinary measures to keep him alive.
“I investigated ALS, and I did not want to be kept alive,” Manchester says. “The idea of living and only being able to move my eyes, I didn’t want it.”
Over time, Manchester became friends with Gleason and Rink, the father who went on the Missouri canoe trip. The two men went to work on Manchester’s attitude.
“Steve said, ‘As long as you can take a breath, you’re living. Your family can still be around you. You can still be productive,'” Manchester recalls. “The young man is 35. To have the wisdom that he has at his age. … I think of him like my son. I truly love him.”
One day as the three men went to ride in race cars — as passengers — they asked Manchester if he still had “that stupid will.”
Manchester says he realized his two friends were right — life still had much to offer. He changed his will back.
“Best decision I ever made,” Manchester says. “I’m enjoying life.”
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