Director: Clay Tweel
MPAA Rating: (for language)
Running Time: 1:50
Release Date: 7/29/16 (limited); 8/5/16 (wider)
Review by Mark Dujsik | August 5, 2016
Steve Gleason is an example of how multiple layers of courage can exist in one individual. In a way, the mere existence of Gleason reveals a significant layer.
The documentary follows the former professional football player after he was diagnosed with Amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig's disease. The effects of the disease are terrifying: As it progresses, voluntary motor functions shut down, inhibiting and eventually stopping one's ability to move and speak. Through a series of video journals and footage of Gleason's home life, director Clay Tweel assembles a portrait of a man—a husband, a father, a son, a celebrity, a philanthropist—that does not intentionally hide or inadvertently obfuscate a single detail of Gleason's life.
He's a hero to many for a couple of reasons: on the field, for a play that symbolized the rebirth of a city after disaster and, after his diagnosis, for starting a charitable organization that enabled people with ALS to retain their voice. In public, he presents himself with strength and grace. While he was still able to walk with the aid of crutches, he returned to the Superdome to serve as the honorary captain of his New Orleans NFL team. He returned later in a wheelchair to witness himself becoming immortalized in statue form.
In private, though, there was—and continues—a struggle that he didn't allow people to see. After one visit to the stadium, we see him experiencing the "dichotomy"—the "juxtaposition"—of his life. He knows people see him as hero, but here he is, at home, needing to be cleaned by his wife Michel Varisco-Gleason and his caretaker, because he no longer possesses control of his bodily functions.
This is what we either conveniently forget or entirely ignore when we look at people like Gleason. We see the public face of disease. We see what people who are comfortable enough to put themselves in the spotlight want us to see. There's a need—completely understandable—to retain one's dignity in such circumstances. What we don't see and what the film shows us, by way of Gleason's extraordinary bravery to put himself in such a position, is the private side.
Strength and grace are still present in these moments, of course, but the displays are of a different tenor than the public appearances. The impetus for Gleason to record his thoughts is the news that Michel is pregnant—a revelation that comes shortly after the ALS diagnosis.
Doctors estimate that a person with ALS will live for two to five years after being diagnosed. Gleason realizes that, while he will meet his son, it is possible that he will never have an actual conversation with him. Even if he lives long enough to see his son talk, the disease will have taken his own voice by then.
The question, then, is obvious but seemingly impossible to answer with any confidence: What does a father need to pass on to his child? This is an especially difficult question for Gleason, whose relationship with his own father was and, through most of the film, is contentious.
His father and mother—now divorced—routinely and loudly fought. His dad, who pushed Gleason to succeed without any real emotional support, has since turned to religion to correct his demons. Ironically, Gleason's father ends up with a few new ones to go along with his continued emotional distance from his son. Now, the father is judgmental of the son's faith, suggests that the disease is some kind of Biblical curse, and, during the early stages of his son's ALS, convinces Gleason to go to a faith healer. Gleason, partly as a way to connect with his father and partly out of desperation, tries to go along with it in a devastating scene of how blind a certain brand of religion can make people to the reality of suffering.
Because of this relationship, though, Gleason is in the right position to answer that central question. The video journals are a way to pass lessons to his son, although he quickly realizes that he will need to communicate the person he is to his son, too. We see that in the way he begins a non-profit organization that, at first, helps people with ALS live out their dreams while they are still able and, later, almost becomes insolvent while fulfilling the technological needs of patients when the federal government fails to do so.
The journals themselves, though, are where the film is at its most intimate. Gleason doesn't hold back on expressing his doubts and fears. He wants his son to know him—all of him. This includes him breaking down in tears after he watches some of his old entries and comes to the realization that he sounds "ill." On the other end of the spectrum, this openness also includes Gleason and Michel allowing a camera to witness the birth of their son. In a moment of indescribable beauty and pure joy, Gleason, with the aid of medical staff supporting his arm, helps to deliver his son.
Perhaps most surprising is the way Gleason maintains a sense of humor. He's in good company, too. When a nurse arrives to show Michel and Gleason's caretaker Blair how to perform an enema (Eventually, Gleason loses the ability to use his bowels), Blair is quick to ask if the lubricant is scented (Blair, whom Michel babysat when he was kid, also tells the story of how he was convinced to come on full-time with the family: Harkening back to their childhood, Michel threatened to kick him in a place no man wants to be kicked if he didn't).
Gleason and Michel, we instantly see, have an easy rapport and a deep friendship. They talk to each other without filters. They're both open and honest with each other about everything.
One of the film's most significant tragedies is how even a foundation that solid starts to erode. At one point, a camera in the couple's bedroom captures an argument between them. The gap between their beds is a physical manifestation of other gaps between them. He worries that he has become a burden. She is exhausted from the daily work that comes with caring for him and their son. Gleason can no longer speak without using a computer, which communicates what he types using eye movement. The pauses in between their exchanges are wrenching. We can sense the frustration in both of them—in him, to communicate with ease and, in her, to say what she might want to say without damaging her husband's dwindling spirit.
Gleason knows all of this is tragic, but even though there are times when it's impossible, he doesn't want to focus on that. Gleason doesn't sugarcoat any of this. There's nothing noble about illness, but there is nobility in how these people approach the reality of it. In showing us that reality, the film is inspiring in a way that few films are.
Copyright © 2016 by Mark Dujsik. All rights reserved.
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