Refusing to be defined by his ALS, former NFL player Steve Gleason lives a life rich with purpose
In his eight-year NFL career as a safety and special teams standout for the New Orleans Saints, Steve Gleason never had the opportunity to play in a Super Bowl. Though Gleason’s not the type to live with regrets, watching his former team win it all in 2009 — just two years removed from his retirement — must have been bittersweet. But this year, during an otherwise lackluster game, Steve Gleason finally had his Super Bowl moment.
|Steve Gleason sees technology as a means to further his independence.|
|Steve and Michel Gleason with their son, Rivers, at Machu Picchu during a Team Gleason excursion in 2013.|
In the second half of Super Bowl XLVIII, Microsoft aired its first-ever Super Bowl commercial. The 60-second spot starts and ends with Gleason and shows vignettes of how the company’s hardware and software better the lives of those featured. Gleason’s role in the commercial has less to do with his NFL roots than his current battle with amyotrophic lateral sclerosis (ALS). Due to the disease, Gleason has lost much of his physical movement as well as his ability to speak, but, enabled by a Microsoft tablet equipped with eye-tracking technology, the digitized voice that narrates the ad is Gleason’s: “Technology has the power to unite us. It inspires us. … It gives hope to the hopeless, and it has given voice to the voiceless.”
These words — Gleason’s own — about the transformative power of technology when combined with the strength of the human spirit aren’t just literally true in his case; they also are in many ways the foundation of his life’s work since his ALS diagnosis in 2011.
From NFL to ALS
Gleason, 37, was born and raised in Spokane, Wash. A star high school athlete who excelled in the classroom as well, he accepted a scholarship to nearby Washington State University. While there, Gleason was a four-year starter for the baseball team, and in football, he helped lead the Cougars to a 1998 Rose Bowl appearance. After college, Gleason continued his football career on the professional level, signing with the New Orleans Saints as an undrafted free agent in 2000.
Gleason was a fixture on the Saints’ special teams during his playing days. Due to his inspired play — not to mention his long, flowing hair, which would creep out of the back of his helmet as he raced down the field on kickoffs — he also became a fan favorite.
Playing in the NFL for eight seasons took its toll on Gleason, both mentally and physically. But by his own admission, not even professional football could prepare him for life with ALS.
“I was diagnosed with ALS over three years ago,” Gleason writes in an email interview with Quest. “A terminal diagnosis can really mess with your head. Honestly, it makes you want to run away to the moon.”
Despite his very real and understandable fears upon receiving his diagnosis, Gleason quickly decided that he wasn’t willing to give in without a fight. “Many ALS patients end up fading away quietly and dying. I did not want to fade away quietly,” Gleason writes.
“After doing some research post-diagnosis, I found that there were handfuls of people who had been living with ALS for very long periods of time, despite the progression of the disease,” he continues. “I realized that these people had three crucial elements to help them: the right support, the right technology and, most importantly, a sense of purpose.”
While these “three crucial elements” do not necessarily translate into a longer survival time once diagnosed with ALS, Gleason believes they do offer a strong foundation toward that goal. With that in mind, Gleason, along with his support system — his wife, Michel, her father, Paul Varisco, and other family and friends — started Team Gleason, a foundation dedicated to fighting back against ALS.
A team player
Today, Gleason’s early epiphany about his disease continues to inform the three-fold mission of Team Gleason: to help individuals with ALS (as well as those with other neuromuscular diseases or traumatic injuries) by providing access to innovative technology; by empowering those with ALS through funding and documenting dream trips and other life experiences; and by fostering a global conversation about ALS in pursuit of its ultimate cure.
“In our two short years, [Team Gleason has] provided assistive technology and life-changing adventures to hundreds of people,” Gleason writes.
That technology covers everything from manual and power wheelchairs to sophisticated eye-tracking devices that can be used to enable audible speech and even open doors and windows. And Team Gleason’s adventure trips, some of which Steve and his family participate in directly, have taken place as far away as Italy, Peru and Israel, but many more have focused on simpler but equally life-affirming outings to, say, a NASCAR race or a canoeing trip in Montana.
“We have also created the Team Gleason House for Innovative Living, where 18 people living with ALS or other neuromuscular diseases will be able to live productively and purposefully through the use of the most advanced technology available,” Gleason adds.
Partnering with MDA
To help meet Team Gleason’s third and final goal — creating a global conversation around ALS — the foundation often has partnered with MDA and its dedicated community. “Without a unified effort among all stakeholders in ALS, I believe we create roadblocks for a treatment or cure. Having the support of MDA, people with ALS and their caregivers, and all interested in solving this disease is paramount to a faster solution,” Gleason writes.
That respect and understanding works both ways, too: For his efforts to raise awareness of and improve the lives of those with ALS, Gleason was a 2012 recipient of an MDA Champion of Spirit award from MDA’s Greater New Orleans Muscle Team.
Of course, Gleason’s work and that of his foundation can be even more succinctly summed up by Team Gleason’s rallying cry: “No White Flags.”
“Simply put, it’s indicative of how I choose to live and will continue to live. I do not intend to be defined by ALS,” Gleason writes. “My mission in life has always been to live with purpose, and ALS does not change that. It’s most important for me to focus on what I can do versus what I cannot.”
That’s the same can-do sentiment that Gleason summoned back in 2006 when he blocked a punt, resulting in a Saints touchdown, at a pivotal moment of the team’s first game back in the Superdome after Hurricane Katrina. That play and Gleason’s football legacy are today immortalized as a bronze statue, titled “Rebirth,” that sits outside the dome.
For a city still reeling from the devastation of that terrible storm and its aftermath, Gleason’s punt block seemed to change more than a game.
“Our Mayor Landrieu has said,” Gleason writes, “‘Steve’s heroics that night lifted the spirits of a city. … What Steve did is prove that no matter how bad things got, if we work hard and come together, we can turn it around.’
“I believe the same is true for the future of ALS. No White Flags!”
Evan Noetzel is a Quest editor.