The world we live in now is such a deliberately curated and presented advertisement (by all facets of media) of how to live and think. We are effectively bombarded with highly subjective and orchestrated propaganda from not only our first moments of cognitive recognition, but no doubt our subconscious in our infant years too. We are told by our environment, our family, our peers, our leaders what and how things are. But they are being told the very same things, maybe for generations, propagating a generational echo chamber of myopic ideologies, that quite often work against our interests.
We are also told who our heroes are, or at least who should be according to said media, using these so called noble bastions of excellence to dictate our moral barometers and aspirations. But now and again this control is swept away in the winds of reality, which can blow gently, or storm strong.
Steve Gleason has all the apparent attributes of the classic all American Hero. Bestowed with a talent for American football from an early age that won him a scholarship to follow his dreams and be part of the culture he profoundly believed in and admirably represented. Stature wise he wasn’t the biggest guy on the field, but that never daunted him, and if anything spurred him on even more so, he had the determination and drive to succeed. He also worked, trained and fought hard for his success in the NFL with the New Orleans Saints, but that was just boot camp for what was to come next.
As he reached the end of his playing career he rightly looked forward to continuing to be part of and developing the game in other ways, plus spending time with his wife Michel and starting a family. He had put in the years of graft and was now planning to grow from that.
Used to may injuries throughout his sporting years, and constant medical consultancy as part of his job, he didn’t have any real initial major concerns with certain new sensations he was experiencing throughout his body. They were possible trauma effects from the brutality of the game. However this was to evolve extremely quickly and brutally into a diagnosis of ALS (amyotrophic lateral sclerosis), a swiftly acting degenerative and often fatal disease that causes the death of neurons which control motor functions. The most famous example of this would possibly be professor Stephen Hawkins. Steven was just 34.
The doctors projected a life span of 2-5 years from the moment of confirmation. The young couple also discovered that they were going to have a baby.
Given all the press Steven had done over the years and the modern availability/accessibility of video equipment, he was well versed in speaking to camera. They had travelled wide and far, sharing life enhancing experiences that added depth and understanding to both them and the their surrounding families, to be ‘present now’. Realising these very same moments and opportunities would now never be on the cards for sharing with their unborn child, Steve embarked on documenting a series of video diaries that his child to turn to long after the point of his ability to speak, or indeed mortality.
‘Gleason’ (2016) directed by Clay Tweel is the documentation of not only the diagnosis of the illness, the diaries and the physically deterioration of his body. Steve had no choice in the illness (which currently has no cure) taking his body, but he flat out refused to allow it to take his life.
There’s no doubt at all that the documentary is at times an upsetting watch, but it is also beautifully/brutally honest (warts, enemas and all), inspiring and far more often than not incredibly funny. Clearly a heavy toll is taken on Steve, but the film shows the effects it has on Michel (who is stunningly strong throughout), extended family, on a community and country as a whole as he takes his experiences and begins to campaign and raise awareness/money for other individuals and families going through the same turmoil when they set up Team Gleason, a charity focused on ALS.
Because the familiarity of cameras in their vicinity for such a long and constant period, there is striking honesty and frankness by all concerned as their presence isn’t registered. This brings a no holds barred approach that admirably validates the inherent truth that permeates the entire work. No one is prepared for such events, and it really is a fight or flight, human vulnerabilities at it’s most raw. Steve chooses to fight, and it is incredible to watch. With each physical loss it seems to only bolster his determination. There’s no naivety though, there are low moments too, again this only supports the truth of the film.
Despite the severity of the subject it is very far from being a bleak experience. It’s surface and core are hope. There is a reality that the family now has to deal with, but as with one of the greatest traits of humankind, adaptability, it is simply incredible what they all achieve.
Irrespective of so called patriotic and militarist jingoism that suffuses a lot of societies, declaring soldiers to be heroes, true heroes don’t take lives, they live them. Steve Gleason is a true hero, and so is his wife Michel.
9/10 ‘Gleason’ is in cinemas now.