A pALS Take on “Gleason”

By Scott Thomas

A picture of Scott Thomas and Steve Gleason.
Steve Gleason (left) with Scott Thomas (right).

*pALS = Person with ALS.

At the end of July, I was fortunate enough to attend the Spokane, WA premiere of the film “Gleason”. The film centers around former NFL football star turned assistive technology guru, Steve Gleason. “Gleason” chronicles Steve and his families lives since he was diagnosed with ALS five years ago. If you weren’t lucky enough to view it in theaters, it is now available on DVD, at iTunes and at Amazon.

Following his upbringing in Spokane, Steve helped lead Washington State to a Rose Bowl and had an accomplished career for 8 years with the New Orleans Saints. His most celebrated on field achievement came in the reopening of the Super Dome ensuing Hurricane Katrina. Early in the game against the Atlanta Falcons (the Saints fierce rival,) Steve blocked a punt resulting in a touchdown. The play will forever signify the resurgence of the city of New Orleans after Katrina. Now, a 9-foot bronze statue of Steve blocking the punt stands outside the Super Dome, its title, “Rebirth.”

He had a storied football career, but as fate would have it, Steve has had an even greater impact on the world in his post-playing days. A short time after he was diagnosed with ALS, Steve and his incredibly inspiring wife Michel found out they were expecting a child. What follows is one of the more beautiful father-son stories ever told. The film evolved organically from video journals Steve began to make for his to be born son, Rivers. Dealing with the reality of the 2-5-year lifespan following an ALS diagnosis, Steve set out to share as much of himself as possible with his son.

Gleason is an emotional roller-coaster. You will cry, but after each emotional moment, and often during each of those moments, you will be struck with laugh-out-loud laughter and inspiration. Your takeaway will be a message of love and triumph.

“Gleason” documents the inception and successes of Steve and Michel’s organization, Team Gleason. I was diagnosed with ALS a year after Steve. Since then, I have reaped the benefits of their selfless work. They are adventurers, so it was natural that part of Team Gleason’s mission would be to send people affected with ALS on dream adventures around the world. Thanks to Team Gleason, we had our own dream adventure to New Orleans two years ago. While there, we were fortunate to spend a day at the Saints training facility with Steve and some of the awesome members of the team.

During this time, I got too see just how amazing the assistive technology Steve uses is. His eye operated computer, a Microsoft Surface Pro tablet with a PC Eye-Go attached, allows him independence unseen for someone living with ALS in years prior. I knew I had to get one for myself, but at that time Medicare stopped paying for the expensive computers, taking away pALS ability to live productive and purposeful lives. So what did Steve do? He forged a fight to reinstate Medicare paying for this crucial assistive technology. Last year both Houses of Congress passed the Steve Gleason Act into law, giving pALS and others their lives back. During this lapse or the many other times pALS’ insurances fail, Team Gleason was and is there to help provide assistive technologies or equipment for those living with ALS.

Steve was gracious enough to give us a tour of his smart home, which we in turn modeled our smart home after. He continues to develop assistive technology in conjunction with Microsoft and others, and Team Gleason has added ALS research as a focus. He advocates for, and inspires others to live a life filled with purpose and meaning. As an outsider looking in, Steve, Michel, and Team are clearly modest. Just about every day I come across a touching story of how they have reached out and improved someone’s life.

Although “Gleason” displays Steve’s use of assistive technologies and Team Gleason’s tireless efforts, it is much more a story about the human spirit, an insight into the lives of those affected by ALS, and relatable relationship struggles and successes. This is a film that simply put, has it all.  I’m no film critic, but professional critics unanimously agree that “Gleason” is a “must see”. Enjoy the film, and visit www.teamgleason.org to follow and help support the awesomeness that Team Gleason is doing.