‘Gleason’ Documentary: Ex-NFL Saint Talks to Newborn Son Before ALS Takes His Voice

Last updated on: July 27, 2016 at 2:38 pm by Kate O'Hare

‘Gleason’ Documentary: Ex-NFL Saint Talks to Newborn Son Before ALS Takes His Voice 2016-07-27T14:38:53-08:00 Kate O'Hare

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News came through today that researchers have identified a new gene linked to the devastating neurodegenerative disease ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease.

This is credited at least in part to the Ice Bucket Challenge, a viral phenomenon and fundraising effort from 2014, in which people doused themselves in ice water and donated funds to ALS research — raising nearly $220M worldwide.

From Reuters:

Celebrities including Taylor Swift, Kim Kardashian, Ellen DeGeneres, Benedict Cumberbatch and former U.S. President George W. Bush were among millions of people who took part in 2014, attracting more than 400 million views on social media.

…

“Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” said John Landers of the University of Massachusetts Medical School. Landers and Jan Veldink of University Medical Center Utrecht led the study involving researchers in 11 countries.

“It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS,” Landers said in a statement.

One of the participants was ALS patient and former New Orleans Saints player Steve Gleason — whose Team Gleason works to help those with ALS — who upped the ante by going naked (nothing is shown in the video). He can no longer speak, so the narration is his prerecorded voice, rendered electronically via a computer system activated by eye movements:

From a story today in Sports Illustrated:

On Jan. 5, 2011—three years after I retired from the NFL—I was diagnosed with ALS, a terminal disease that causes your muscles to atrophy and die. There is no cure. I learned that when I was diagnosed, which was right about the time I started recording videos sharing my thoughts about what was happening to my body. Nearly 1,500 hours of footage later we’re releasing a film, Gleason, about how my wife, Michel, and I have lived our lives over the last 5 1/2 years.

When doctors first diagnosed me, their basic sentiment was, We’ve got nothing. Hang in there. Thanks a lot, dude.

A few weeks after that diagnosis, Michel and I found out she was pregnant. Immediately I switched my focus; instead of introspective journals, I started recording videos that would help our yet-to-be-born son, Rivers, know who I was. I still record my memories, beliefs, shortcomings, advice and loves.

“Gleason” is released to select theaters on Friday, July 29. It’s a raw, heartrending, but also often funny, look at a vital young man facing the gradual and inevitable loss of his bodily functions and independence. It’s also the story of his tough, salty wife — who says she is “no saint” while doing the very self-sacrificial things that saints do — and his little son, Rivers, who’s blissfully unaware that not every daddy is in a wheelchair.

Gleason’s mind remains unaffected, so in a sense, he is trapped inside his own body. Knowing what was to come, he recorded videos for his son, hoping to give him the fathering he wish he’d had.

Along the way, he strengthens his relationship with his own father, and navigates difficult waters with his wife — click here for an ABC interview that features her — who’s utterly consumed by the struggle of raising a baby and caring for her husband, but still finds reasons for humor.

It’s not an easy movie to watch, and I was struck by the thought that Gleason is well-loved and cared-for, and just how many people in the same situation may not have that level of support.

Gleason also opts for difficult surgery that will prolong his life, but which is expensive and requires even more intensive care. While the on-screen text says that 95 percent of ALS patients refuse the surgery, Gleason refuses to let himself die before he has to.

While we can never truly know the ultimate meaning of suffering, today’s news announcement may be a hint.

As Gleason says to Sports Illustrated, “Life is messy.” Suffering can never be escaped, it can only be endured and offered up.

While the movie only touches upon faith briefly, Gleason is a Catholic. In the video below, he talks about his personal beliefs. They’re not perfectly orthodox, but at the end, he does receive the Anointing of the Sick from his bishop, so while he may have many thoughts about “religion,” as he calls it, he does turn to a Sacrament for healing.

Images: Courtesy AP Photo/Jonathan Bachman; Wikimedia Commons

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