By Ted Lewis
Written for the LSWA
When in 2011 Steve Gleason received the devastating diagnosis 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, that was not OK.”
That wasn’t the Steve Gleason who had already beaten the odds to last in the NFL for eight years primarily on special teams, gaining Who Dat immortality 2006 with his blocked punt in the opening minutes of in 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 to 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 project, the largest-ever ALS research project, has already furthered the realization that there are several forms of ALS, resulting leading to better treatment and trials in the quest for a cure.
Showing his parental side, Gleason now sponsors life stills camps for youngsters.
And there’s 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.
“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.”
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, 28-3 and went on the franchise’s first NFC title game.
Gleason, who would start 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.”