'Gleason' documentary reveals far more than ex-Saint's battle with ALS

NEW YORK — Michel Rae Varisco remembers printing shirts with the number. After all, her husband, Steve Gleason, was going to be No. 4.

It was summer of 2011. Doctors had just diagnosed Gleason, the former New Orleans Saints special teams standout best known for blocking a punt that helped ignite the city's post-Katrina rebirth, with amyotrophic lateral sclerosis (ALS).

Speaking with one of his doctors, Gleason and Varisco asked how many people had overcome the aggressive progression of the disease, which gradually paralyzes the body. The answer was three.

Five years later, it's sadly obvious that Gleason, now 39, won't be the fourth. But there are other ways he and his family are ensuring his battle against ALS continues with purpose. Gleason, a documentary that chronicles his fight, is just the most recent attempt.

“Ultimately, if the audience walks away from this film with anything, my hope is they understand that in the midst of our adversity, we will find our greatest opportunities,” Gleason wrote in a message to Paste BN Sports, using eye-tracking technology to communicate through a spokesperson. “Everyone faces tragedy and adversity, but most often, that is where we find our power and meaning.”

Gleason, which will be released in select theaters Friday, is raw and intimate. It documents how he navigates the harsh reality of ALS while adhering to a vow to add meaning to his life in spite of the disease's unyielding challenges. The film recounts how he and Varisco created Team Gleason, a non-profit charity seeking to raise awareness and funds for ALS patients in hopes of finding a cure while providing technological equipment and services in the meantime.

But above all else, Gleason is a glimpse into how ALS affects lives.

“I looked to see what ALS does, but I didn’t pay attention to what was going to happen next,” Varisco told Paste BN Sports, admitting she was in denial at times. “We had to live each day as it went, because who the hell knew what he would lose the next day?"

Director Clay Tweel combed through thousands of hours of Gleason's personal footage to capture the journey. What began as video journals created for Gleason's then-unborn son — Michel learned she was pregnant shortly after her husband's diagnosis — became the backbone of the documentary. Viewers see Gleason’s transformation — his gradual loss of movement, speech and how he copes with the deterioration of his physical functions.

“I am so proud of him for that,” producer and former Saints teammate Scott Fujita told Paste BN Sports.

“As a parent myself, I think that we sometimes take these things for granted — how to skip a rock, how to shave, how to overcome adversity — and I think that message is going to resonate with people, especially parents.”

But Gleason is more than just the story of an athlete afflicted.

In one of the most powerful scenes, Gleason, his speech slurred and his movements limited, wills himself to express his faith.

“You don't get to decide the relationship between my heart and God,” Gleason, shaking, tells his father Mike, who pleads with him not to be upset even as they work through their religious differences. “My soul will be saved.”

“Knowing that I'm going to lose you, Stephen, you know how much that is killing me?” Mike replies.

The two eventually embrace and weep as they reconcile.

The life of caregivers is also examined, and Varisco is the embodiment of that narrative. Gleason is as much her story as it is her husband's.

Viewers see the growth of Team Gleason, and how she must balance her time between tending to Gleason and running the day-to-day operations of the charity. One striking image shows Varisco feeding their then-infant son, Rivers, while also scooping food into her husband's mouth.

“One thing I value so much in this process is that when we show this film to people, we get a standing ovation,” Fujita said.

“But it’s the caretakers and spouses who come up and thank Michel for sharing her story.”

(For more information on Team Gleason, visit teamgleason.org.)

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Follow Lorenzo Reyes on Twitter @LorenzoGReyes