By Ted Lewis
Written for the LSWA
When Steve Gleason received the devastating diagnosis in 2011 that he had contracted amyotrophic lateral sclerosis, or ALS, he could have, understandably, accepted his fate — that his condition was terminal, usually within a couple of years.
But as Gleason, then 34, later put it, “Most people who have severe disabilities are expected to fade away quietly and die.
“For me,” he said, “that was not OK.”
That wasn’t the Steve Gleason who had already beaten the odds to play eight NFL seasons, primarily on special teams, and gained Who Dat immortality in 2006 with his blocked punt in the opening minutes of the Saints’ return to the Superdome following Hurricane Katrina.
Or the one who had met and married New Orleanian Michel Varisco after his playing career had ended. They found out they had a child on the way shortly before the diagnosis.
Or the one who remained decidedly health conscious after his playing days were over, practicing yoga and obsessing about his diet.
There would be, as he later so pointedly put it, “No White Flags!”
“It’s easy to start questioning whether God has this plan and why this plan would include getting diagnosed with this disease,” Gleason said when he went public with his condition on the fifth anniversary of his blocked punt against the Atlanta Falcons. “And that’s when you can start why-ing yourself to death.
“More than that I’ve thought, what does this mean, how does this help me fulfill my purpose in life? If we have one beyond being a cog in the human machine, mine is to inspire people and that’s pretty cool. I would like to motivate the world.”
He’s certainly working on it.
The 2018 Dave Dixon Louisiana Sports Leadership Award winner, who will be enshrined in the Louisiana Sports Hall of Fame on Saturday, June 30 in Natchitoches, has become the world’s leading ALS activist.
His Gleason Initiative Foundation helps provide the latest mobility and communication technology for both those with ALS and other neuromuscular diseases, including securing permanent government funding for speech generating devices through what is called “The Steve Gleason Act.”
It also rewards grants for those who cannot afford what Medicare does not cover plus aiding those in other countries.
The foundation additionally provides “adventures,” for ALS patients, so that they can share Gleason’s passion for travel and immerse themselves in other cultures.
Through Gleason’s efforts, the Team Gleason House for Innovative Living, which provides housing for up to nine persons featuring the latest technology, opened in New Orleans in 2013.
That same year, Gleason also launched Answer ALS, a cooperative effort of all ALS research entities which to date has gathered an estimated 20 trillion data points in the search for a cure for a disease for which there is no known cause or prevention.
The largest-ever ALS research project has already furthered the realization that there are several forms of the disease, leading to better treatment and trials in the quest for a cure.
Showing his parental side, Gleason now sponsors life skills camps for youngsters.
There’s also the incalculable amount of awareness Gleason has created around the world concerning a disease which afflicts some 30,000 Americans with the numbers growing as the population ages. He’s directly raised millions as well.
With hundreds of thousands of Twitter, Instagram and Facebook followers, Gleason’s impact has certainly gone far beyond New Orleans and any level of recognition he received as a player, although his status as an ex-NFL player did initially open doors.
The Gleason’s have opened their lives personally as well.
A highly-acclaimed 2016 documentary, “Gleason,” showed in sometimes painful detail how he’s coped and then persevered even though ALS robbed him of his mobility, then ability to eat and finally to speak except through eye-movement recognition equipment.
The development of that equipment helped come about through his relationship with Bill Gates, a major benefactor of the foundation. Gleason even persuaded the world’s richest person to take part in the ALS Ice Bucket Challenge and has applied to go into space.
People have named their children after Gleason and engraved his image on their bodies. One man was inspired to lose 200 pounds and run a marathon and others have re-established relations with parents and siblings because of him.
Many more have reached out to Michel for being so open about the difficulty of being an ALS caretaker and loved one.
Gleason has hundreds of thousands of followers on Twitter and Instagram and maintains very active presences on both.
All of that Gleason has accomplished while remaining dedicated to living life to the fullest with Michel and their son, Rivers, plus a large circle of friends — many of them former Saints’ teammates and family members who have traveled to exotic locales despite his physical limitations.
On a recent day, Gleason met with representatives of a company which has developed a device which would cut the number of devices needed to help patients clear their lungs from five to one and that evening attended a Pelicans NBA playoff game with Michel and Rivers.
“Steve has his hand in everything,” Michel said. “He does more than almost anyone I know, and that’s without being able to move or communicate with ease.
“And Rivers thinks it’s just the norm that his dad comes to his school or his games even if he’s different from the other dads.”
Gleason has an explanation for it all.
“It’s always been my choice to live life with a purpose,” he said. “That did not change with ALS.
“I think adversity provides us with opportunity. I happen to have been dealt more adversity than most people. So the way I see it, I have a greater opportunity to impact others.”
Small wonder Gleason has been nominated for the Congressional Gold Medal by senators and congressmen from both Louisiana and his home state of Washington.
The nomination recently received the necessary two-thirds support from the Senate to move forward for a final vote from that body.
“Steve Gleason was a hero for Saints fans and now he is a hero for all Americans as he finds hope and meaning in overcoming disability and creating greater opportunity for others who are disabled,” Louisiana senator Bill Cassidy said in announcing his sponsorship of the legislation to attain the medal.
Others share those sentiments.
Ian Davis, an Australian oncologist, was diagnosed with ALS in 2011, the same year at Gleason, and, at 33, was even younger (ALS most often strikes men over 40).
Inspired by Gleason and with his planned career taken away, Davis started his own foundation dedicated to raising ALS awareness.
“I always thought I would make a difference and leave my mark within my chosen profession,” Davis said. “Steve showed me another path where I could use my knowledge and passion to make a difference.
“What Steve has done and what Team Gleason is doing and will continue to do is changing the ALS landscape completely.”
Added Saints quarterback Drew Brees, whose foundation has been a major donor to Gleason’s, “What Steve has done with a tragic situation is incredible.”
Prior to contracting ALS, Gleason was best known for his blocked punt and the ensuing touchdown which produced the most emotional, if not the loudest eruption of noise in Superdome history.
The Saints beat the Falcons 23-3 that evening and went on the franchise’s first NFC title game four months later.
Gleason, who started only one game during his career, said the play was a catharsis for the city and cemented forever the relationship between the Saints and their fans.
A statue of Gleason’s iconic block entitled “Rebirth,” is on the plaza of the Mercedes-Benz Superdome.
“The people had spent the previous 12 months being devastated, frustrated and angry,” he said. “This was their chance to release all of those emotions and to let the world know the City of New Orleans was back.
“To me, blocking that punt was a symbol of the people of the region to return and rebuild. We, the players, were a representation of them.”
Gleason added that the fight against ALS is similar to post-Katrina New Orleans.
“The ALS community has felt largely ignored over the decades,” he said. “Knowing we are helping push advancements in technology and equipment that aids in independence and quality of life is powerful.”
Gleason is the first to point out that he has hardly been able to accomplish what he has alone.
Blair Casey has gone from a personal assistant during the later years of Gleason’s playing career to head of the Gleason Initiative, and Clare Durette has gone from volunteer to coordinating the Answer Aids efforts.
There are others who act as either personal caregivers or volunteers for the foundation.
But the person Gleason credits most is Michel, who not only has remained as his side as wife and mother of Rivers through their trials and tribulations. She frequently is the leader of foundation efforts at the grassroots level.
“I don’t think people can understand the toll ALS can take on relationships,” Gleason said. “Michel and I have worked hard to understand each other’s pain and needs.
“She’s amazingly resilient and a champion. She absolutely 100 percent deserves to share any recognition that comes my way.”
For Michel’s part, while acknowledging that Steve and she having to go through life with ALS is not the path in life they or anyone would choose (a particularly poignant moment in “Gleason” shows her crying about how she didn’t want to have to deal with it), she has come to accept it.
“I never saw myself in the public eye, even though people knew Steve,” she said. “So sometimes it’s been very bizarre for me to be in this situation that has become the reality of our lives.
“But Steve was always going to make a difference in the world. And we have this incredible platform to help others.”
“Before I was diagnosed with ALS, I always tried to be a good steward of my time on earth,” he said. “And despite all that’s happened, I love my life.
“It hasn’t been easy. But it’s been awesome!”