At its best moments, Gleason provides a painfully intimate view into the lives of those living with ALS.

Disclaimer: this review was made possible thanks to a screener provided by the film’s UK distributor, Arrow Films.

About midway through Gleason, Steve Gleason utilises one of his journal entries to explain his discomfort with how his story might be perceived by other people.  Earlier, he openly resists the desire for others to take pity on him, to not be seen as a “sad story” because of how hard his life has now become, instead wishing to get them to focus on what he’s managed to do and adapt to since his ALS diagnosis.  Now, though, he’s concerned about whether he’s wearing himself out too much attempting to live up to the “hero” and “inspiration” monikers foisted upon him since going public about his illness, trying to find new ways to avoid disappointing those people whilst potentially making himself and more immediate people – such as his wife Michel and new born son Rivers – in his life worse as a result.

This kind of open self-reflection is not uncommon in Gleason, but it doesn’t make any instance of its appearance any less surprising or welcome.  Steve is ostensibly making these video journals so that his son, whom Michel became pregnant with three months after Steve’s diagnosis, will have a record of his father in somewhat healthy circumstances when he gets older and Steve likely passes away.  But rather than just being future advice to his son, or your standard fly-on-the-wall doc talking heads, the ones that we get to see end up more as Steve forcefully breaking the seeming simplicity of his struggle with ALS to remind us that there is a complex and often contradictory human underneath this “sad story.”  One stuck in the middle of a deeply awful situation with no happy resolution who ultimately has to find a way to reconcile its various aspects – his personal struggle vs. his nature as a beloved posterchild for a cause, his dependence on Michel vs. the massive psychological and physical toll that it is taking on her and which he is fully aware of and deeply guilty over, his devout Christian faith vs. this inexplicable turn of events in the face of everything.

When Gleason works best, the times when it burrows its way directly into the heart with an unrestrained power, are the scenes and moments that play off of that intimacy.  Director Clay Tweel and his team of filmmakers effectively become members of the Gleason family whilst filming, and that level of access leads to many of the film’s most affecting moments, since the family end up being so naturally open in the consistent presence of the cameras.  A sequence where Steve loses control of his bowels to such an extent that a nurse is called over has its four participants all trying to joke through it in good faith, but is later contrasted by a scene where an on-the-verge-of-tears Steve recounts the juxtaposition of going from a hometown celebration to defecating in his pants five minutes after.  But that intimacy also goes both ways: a brutally hard-to-watch sequence of Steve screaming about a desire to punch something is later followed by the joy of watching him pull young Rivers around with his wheelchair on a makeshift sled.  As desired by the man at its centre, it’s an often-sad film – with anyone not moved to the brink of tears at least once most likely being medically dead – but it’s not a miserable one.

It’s also not laser-focussed on Steve himself, either, as Gleason recognises just how much of a toll the disease takes on those around him.  Most prominently is his wife Michel, stuck having to raise Steve and her young son effectively by herself for most of the five-year span that the film covers – refusing much more than one additional helper, as she admits to camera, with a semi-resigned belief that this is just what she must do now.  The film never judges her for this, however, as everybody involved understands the immense undertaking that she is stuck with, especially Steve himself.  Nevertheless, the instances where we do see the two arguing with each other are legitimately painful to witness, the horrible weight that this disease is putting upon an otherwise loving couple, beating them down as the days and years drag on.  A late-film argument, if one could call it that, is especially uncomfortable, almost like we’re being made privy to something that we shouldn’t be.

Throughout, Steve and particularly his father try almost futilely to rationalise a seemingly irrational turn of events through their devout Christian faiths.  Maybe it came from Steve’s days as a Football player, maybe not; neither of them know, particularly since Steve subscribes more to the idea of God being a loving benevolent figure, and they struggle with trying to reconcile how striking Steve down with ALS fits into God’s plan, if it does at all.  More immediate is the conflict between Steve’s Christianity and his father’s more fundamentalist belief of – one of the film’s most heartbreaking scenes involves Steve’s father dragging him and Michel to a Faith Healer sermon that ends exactly as you’re expecting it to.  Yet, even in the face of all of this, Steve still manages to find comfort and even some hope in his faith in a way that’s quietly inspiring and, I must admit, far more palatable than most recent attempts at Christian-focussed entertainment.

You may have noticed in that previous paragraph that I offhandedly mentioned that Steve Gleason used to play American Football.  That wasn’t an accident, since Gleason is a film that recognises that its strengths lie in its intimate depiction of what the day-to-day life of somebody stricken with ALS is like rather than following the tenants of a traditional documentary about An Important Man.  Unfortunately, there are still times where the film does indulge in those elements and they’re ultimately what hold it back from excellence since they betray the intentional “everyman” low-key intimacy that otherwise makes the film so vital.  Occasional talking heads, rather than immediate confessionals, add a sheen to proceedings that jar more than a little, whilst the sequences of Steve running his charity Team Gleason, even if they’re arguably necessary, veer a mite too close towards infomercial for my liking.  As cool as it may have been for Steve, an extended scene of him interviewing Eddie Vedder from Pearl Jam (his favourite band) doesn’t fit the film as constructed.

(Relatedly: the film does sometimes stop and address the privilege that Steve has – the kind that makes sure that he can afford the kind of care that the vast majority of other ALS sufferers cannot, the kind that allows both him and his family to remain comfortable despite none of them working anymore – but your mileage may vary on whether it does so enough or whether you even care about that at all.  I just felt that I should mention it.)

Still, Gleason is a moving document of how difficult and debilitating living with an illness such as ALS is on both the person physically suffering from it and those around them.  It’s an often raw, complex, and, yes, painfully intimate film that is determined to never lose sight of the people at its centre rather than lapsing into becoming a sad story.  That, however, is what ultimately makes the film, in its own way, surprisingly and quietly uplifting.  The disease may be wearing everybody down, but Steve and Michel never succumb to its attempts to scrub out their personalities and replace them with just “ALS.”  They change and adapt, but they do so on their terms as much as possible and with a candidness, self-reflection, and brutal honesty that is honestly inspiring.  Even with its quibbles, this is a vital documentary and all the more so for that personal scope.

Gleason is in UK cinemas from today, and will be available on DVD and Digital Download from April 24th.

Callie Petch ran for hundreds of miles.

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