We may all know the effects of ALS, or Lou Gehrig’s disease.
But few of us truly understand how brutal, humiliating and painful it is for sufferers and their families on a daily and nightly basis.
Steve Gleason, the former New Orleans Saints legend, was diagnosed with the neurodegenerative disease in 2011 at the age of 34.
And now, in an unflinching documentary released today, he lets viewers in on every moment of his life as his body went from peak fitness to freezing up until he could no longer walk, speak, breathe, or even poop independently.
Now aged 39, he has beaten to odds of survival, which is usually two years after diagnosis, though it can sometimes stretch to five years.
Amid his round-the-clock work to support other sufferers – both financially and emotionally – he continues to fight for survival to spend as much time as he can with his wife Michel and their five-year-old son Rivers.
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Steve Gleason, the former New Orleans Saints legend, was diagnosed with the neurodegenerative disease in 2011 at the age of 34. He is pictured (left) during his career, and (right) at the age of 39
The movie, ‘Gleason’, started as a series of home videos.
Gleason was diagnosed with ALS just weeks before his wife Michel found out she was pregnant.
As doctors explained that his body would likely freeze up within a couple of years, the 34-year-old decided to film their family life so that his son could see what he was like before ALS.
Five years later, the two-hour movie – edited down from 1,300 hours of footage – tells a heart-wrenching and awe-inspiring father-son tale.
It also captures the devastating horror that every ALS family endures as you watch the disease take hold, tensions erupt in their family relationships, and all other daily struggles of adapting to a life they never expected.
In the opening moments of the documentary ‘Gleason,’ the celebrated New Orleans Saints safety talks to the camera with a not-yet-occupied crib behind him.
He has just learned that he has ALS. Soon the symptoms will take over.
Preparing for what’s coming, Gleason tells his unborn son that he wants to give him ‘as much of myself as I possibly can while I still can.’
With overwhelming intimacy, ‘Gleason’ follows Steve and Michel into the maelstrom of ALS as the couple adjusts to their fluctuating reality and makes way for their son, Rivers.
‘Ultimately, if the audience walks away from this film with anything, my hope is they understand that in the midst of our adversity, we will find our greatest opportunities,’ Gleason, who now communicates through a machine he operates with his eyes, said.
‘Everyone faces tragedy and adversity, but most often, that is where we find our power and meaning.’
The two-hour movie – edited down from 1,300 hours – tells a heart-wrenching and awe-inspiring father-son tale
The film captures the devastating horror that every ALS family endures as you watch the disease take hold, tensions erupt in their family relationships, and all other struggles of adapting to a life they never expected
A journey: Steve is pictured with his wife Michel (center right), his caretaker and friend Blair Casey (back left) and other members of Team Gleason, his foundation, at a preview screening of the movie this year
WHAT IS ALS, OR MOTOR NEURONE DISEASE?
ALS is an acronym for amyotrophic lateral sclerosis.
It is also referred to as motor neurone disease, or Lou Gehrig’s Disease after the US baseball player when he was diagnosed in 1939 at just 36 years old.
The disease is a rare condition that progressively damages parts of the nervous system.
It occurs when specialist nerve cells in the brain and spinal cord called motor neurones stop working properly – known as neurodegeneration.
Life expectancy for about half of those with the condition is three years from the start of symptoms.
However, some people may live for up to 10 years, and in rarer circumstances even longer.
The condition can affect adults of all ages, including teenagers, although this is extremely rare.
It’s usually diagnosed in people over 40, but most people with the condition first develop symptoms in their 60s. It affects slightly more men than women.
There’s currently no cure for motor neurone disease.
Treatment aims to make the person feel comfortable and have the best quality of life possible
It also tries to compensate for the progressive loss of bodily functions such as mobility, communication, swallowing and breathing.
‘Gleason,’ which has already soaked all the Kleenex along the festival circuit, is a mixture of video journals and documentary footage.
His body disintegrates heartbreakingly fast, just as he, undaunted, embarks on a new mission to raise attention for ALS.
Edited together by director Clay Tweel, ‘Gleason’ is a family portrait that doesn’t shy away from the disease’s day-to-day hardships, their naked emotions or even Rivers’ birth.
‘This is purely just raw, real emotion,’ says Michel Varisco Gleason, speaking by phone. ‘It’s crazy that it’s out there, but it is.’
The film packs such a wallop partly because the Gleasons are themselves so unsentimental.
They’re free spirits and adventurers, more likely to use a new wheelchair to spin around a toddler than lament their unfair fate.
But both Steve and Michel acknowledge being nervous about releasing such an intimate film — ‘the inside of our life,’ Michel calls it.
‘Honestly, I am not sure I will ever be completely comfortable with some of these intimate and raw moments being public,’ says Gleason.
‘At the same time, I believe that our greatest strength as humans is to share our weakness and vulnerability with each other.’
Gleason played for seven years in the NFL, where he was most famous for a cathartic, city-rallying punt block in the early minutes of the Saints’ first Superdome game after Hurricane Katrina.
The team has supported Gleason. A statue of his play now sits outside the stadium, and Saints quarterback Drew Brees is a co-executive producer of the documentary. But there have been complications.
Gleason played for seven years in the NFL, first in his home state of Washington then in Louisiana
He was most famous for a cathartic, city-rallying punt block in the early minutes of the Saints’ first Superdome game after Hurricane Katrina. After he did it (circled) the crowds chanted ‘rebirth, rebirth, rebirth’
A statue of his play during the first game after Katrina now sits outside the stadium (pictured)
The film was initially directed by Sean Pamphilon, who during filming in the Saints locker room captured a coach urging players to injure the opponent’s star running back in the head.
Gleason opposed releasing the tape, but Pamphilon, feeling a responsibility, eventually went public with it, leading to the ‘Bountygate’ scandal.
The causes of ALS remain largely mysterious, though some studies have suggested repetitive head trauma may be connected.
Gleason, however, has not blamed football for his illness and he declined to further discuss any connection.
‘I was hoping that you didn’t walk away from the movie thinking it was a movie about ALS or football,’ says Tweel.
‘The testing of the boundaries of love and the father and son story is really what I tried to narrow the focus of the movie on.’
Gleason is instead absorbed with improving the lives of ALS patients and finding a cure. The slogan of his nonprofit foundation, Team Gleason , is ‘No White Flags.’
He’s raised money to send ALS patients on international adventures and last year successfully lobbied Congress to pass the Steve Gleason Act, making speech-generating technology for ALS patients covered through Medicare and Medicaid.
Painful and uplifting: The film brings with it its own pains and triumphs. Michel (center) estimated that she’s seen it 15 times but hearing her husband’s natural voice at the start of the film ‘always gets me’
Gleason’s motivation has always foremost been to be around for the now five-year-old Rivers
He’s raised money to send ALS patients on adventures and successfully lobbied Congress to pass the Steve Gleason Act, making speech-generating technology for ALS patients covered through Medicare and Medicaid
Gleason has already lived longer than doctors expected.
A crossroads came when Gleason opted for a tracheostomy, which allowed him to breathe with a ventilator. His motivation has always foremost been to be around for the now five-year-old Rivers.
‘I often feel inadequate as a father, and I’m relentlessly pursuing ways to be a better dad. Fortunately, because of this badass Technology and a supportive care crew, I’m able to be very involved in Rivers life,’ says Gleason.
‘I pick up Rivers every day from school, I’m at all of his practices. I get to help get him ready for bed at night.’
‘It’s a difficult situation and we still have to deal with the brutality of the disease every day,’ says Michel.
‘This is just the next chapter. We’re doing our best just to deal with life as it is now. There’s definitely lots of bad moments and great moments, just like everybody else’s life.’
The film brings with it its own pains and triumphs. Michel estimated that she’s seen it 15 times but hearing her husband’s natural voice at the start of the film ‘always gets me’.
Still, they’re looking forward to sharing their story.
‘We’re going on a new ride,’ says Michel. ‘We used to like to adventure travel. This is like emotional adventure. We’ll see where it takes us.’