“One of the saddest, most emotionally effecting films I’ve ever seen”

by Steve Pulaski

I’ve seen nearly 3,000 films in my day, so with that in mind, I’ve obviously sat through sad and painful ones as well. That’s why I do not say lightly that Gleason, the new documentary about New Orleans Saints defensive back Steve Gleason who is living with ALS, is one of the saddest, most emotionally painful films I’ve ever sat through. Despite that, it might just be the most important film you see all year, if you make the right choice.

This is one of the best, most compelling films of the year on many levels, but mostly for being the first of its kind in the realm of a real-time, unflinching look at the endless horrors and trials that Amyotrophic lateral sclerosis (ALS, “Lou Gehrig’s disease) has on a person. It’s a neurological disorder that causes gradual deterioration of the brain’s ability to communicate with the body’s muscles, to the point where, over a period of just a couple of years, a person’s ability to speak, swallow, move, and even breathe are taken away. ALS victims often remain confined to a scooter-chair to remain mobile, and communicate by spelling words out on a computer via eye movements if they’re so fortunate.

Gleason found out he had ALS three years after he retired from professional football. Now living with his wife Michel, Gleason also discovered his wife was pregnant with their first child shortly after his diagnosis. From that moment, Gleason promised both his wife and his unborn child – through a prolific series of intimate video logs that Gleason directed himself – that he would not give up his fight to live and overcome ALS. He wouldn’t raise a white flag in defeat even when there were more bad days than good. Rather than the usual, “quality of life” argument that comes into play with these situations, Gleason never wanted to give up, so long as his wife and child were by his side.

Gleason
Directed by
Clay Tweel
Cast
Steve Gleason, Mike Gleason, Scott Fujita
Release Date
29 July 2016
Steve’s Grade: A+

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In practically real-time chronology, we watch as Gleason’s physical state deteriorates. The first to go is his ability to run, then walk, then even get up or get out of bed by himself. Eventually, his speech becomes more burdened with a lisp and general difficulties in pronunciation, which is where a thousand-dollar computer machine Gleason can operate with eye movements comes in. But finally, the inevitable happens – Gleason can’t even walk or talk, and eventually his ability to cough and go to the bathroom is hindered immensely.

Through all of this pain and heartbreak is Michel, who becomes responsible for taking care of both her husband and their son Rivers once he is born. Gleason’s own physical handicaps aren’t the only ones we witness during the course of this documentary. In addition, Michel loses some weight, spends long days and nights feeding both Steve and Rivers. She calls on a few friends for assistance, but mostly, especially when things become very ugly, she’s the one taking care of and attending to the needs of Steve. One heartbreaking scene has them laying in their separate beds, with Michel struggling to stay awake and Steve using his computer to tell his wife that he notices that she’s recently lacked compassion and that he wants to know what he can do to help.

The sad thing, that both Steve and Michel know, is that there is really nothing Steve can do to ease the pressure off of his wife. In the meantime, Steve works on establishing “Team Gleason,” a fundraiser to help those with ALS with two very specific goals. Rather than continuing to funnel money into research with little to questionable results, Gleason puts his money towards equipping those with ALS with text-to-speech computers that Medicare initially refused to cover, as well as getting ALS victims to enjoy life despite their condition by funding trips all over the world.

This little element helps us ignore the undeniable privilege Steve and Michel have throughout the entire time with this disease. While Steve’s condition is tragic, the access to care he has – coupled with his ability to afford great doctors, equipment, and top-of-the-line treatment, inevitably makes this an atypical story of suffering from such a debilitating disease. At least with Team Gleason, Gleason and his wife have recognized that, especially in a country with such a crazy and complex healthcare system, and attempt to do something about it.

Gleason is truly remarkable in how much access director Clay Tweel is allowed in the life of Gleason from day one. Where we would assume Tweel’s camera would turn away – during Gleason’s crying fits, difficulties going to the bathroom, and moments of anger between him and his father regarding the way his father judges his son on his faith – Tweel lingers on those moments to paint the truly horrifying and saddening picture. This is where all the emotion and heartbreak in the film resides; in these tender and unbelievably heart-wrenching moments that we would normally not see or would normally be colored brightly in order for us to avoid getting too emotional.

Another devastating scene comes during one of the video diaries Gleason makes for Rivers, during the final days where he could actually speak. Gleason tells his son that his dad is having a real bad day and can feel his speaking abilities begin to slip away. He finally begins to break down, saying that he can’t talk and he can’t even punch something out of anger; the only thing he can do is scream, and soon enough, he won’t even be able to do that ever again either.

These, and many, many more, are why I dub Gleason one of the saddest, most emotionally effecting films I’ve ever seen. It’s a documentary for the ages in the way it shows an ugly, unfair disease simply eat away at a once thriving, able body, and juxtaposes the life of a newborn baby to the life of its father in the way that both are essentially treated and cared for in the same way due to personal inabilities. There are scenes and moments in this documentary that are raw and personal that effectively make the entire documentary unforgettable.