NEW ORLEANS (WGNO) – When you go to see “Gleason” on or after July 29th – and I highly recommend it – be prepared for a rollercoaster of emotions.
At some points in the movie, you actually may be jealous of this man who is suffering from Amyotrophic Lateral Sclerosis (ALS). You read that right, I said you may find yourself wanting to be this man who needs a machine to talk, moves via wheelchair and can no longer control his bodily functions.
You might covet the fact that even though his body is betraying him, his inner spirit is so healthy that he can joke with the nurse who arrives to give him an enema. You may wish that you were the lucky one married to the courageous and incredibly steadfast Michel Varisco Gleason, who opened up her life to video cameras — even to the point of letting us watch her give birth to the child who was the catalyst for this magnificent documentary: Rivers Gleason, who turns five in October.
“Raw.” That’s the word used by Michel, Saints Quarterback Drew Brees, and Executive Producer Paul Varisco (who also happens to be Michel’s dad) to describe the just-under-two-hours-long documentary. But this isn’t a medical documentary about ALS. It’s also not a depressing tale of woe where the star athlete tackles a debilitating disease and we all feel sorry for him. As director Clay Tweel told me, it goes way beyond the reports you’ve seen about Steve Gleason on ESPN. It is a love story, plain and simple.
There’s parent-child love, love between spouses, love of self — and love for the city that loves the Gleasons right back. Their passion for New Orleans surfaces as an unintended theme, a matter of fact punctuated by Steve’s revolving collection of New Orleans T-shirts (My personal favorite reads: 504: Soul is Waterproof).
You will learn all kinds of things you didn’t know about ALS (Did you know that 95% of the patients with the disease opt not to have one of the tracheotomy procedures that Steve endured, due to the expense and 24-hour attention that is required?)
You also will bawl your eyes out during poignant moments when faith is momentarily lost, when the hero appears helpless, and when the star himself breaks down in one journal entry, telling his son, “I’m having a bad day, a really bad day.”
But there also is joy in its purest form, including that childbirth scene, when dad’s disease doesn’t stop him from helping to deliver his son. We hear Steve tell Rivers that he won’t be able to do “normal” dad stuff with him, but we also witness baby Rivers’ giant smile when he’s riding on dad’s lap, snuggled up with him, or getting pulled across a football field on a sled that flies across the grass, pulled by dad’s chair.
“It’s not gonna be easy, but it’s gonna be awesome,” says the man who wore the No. 37 Saints jersey.
I didn’t take an official count, but I’m nearly certain there are almost as many reasons to smile or laugh during the movie as there are reasons to pull out the Kleenex. Some of the jokes are R-rated. At one point, Steve’s gregarious caretaker with the cheerleader spirit (an enthusiastic guy who, ironically, Michel babysat earlier in life) is feeding Rivers, without much luck.
“Come on Rivers, it’s time to get on the (expletive) team and eat your (expletive) food!” he says.
The heart of the film remains Steve Gleason’s video messages to his son (Steve started recording his life to make sure his son would know him, after he was given a life expectancy of less than five years. Rivers was still in utero at the time.) He speaks to Rivers constantly during the film, offering advice, venting frustrations and simply being himself. After all, connecting with his son is the reason this story exists, and what a privilege it is for us to be allowed into the inner circle.
The father-son relationship is the central theme, and includes Steve’s relationship with his own father. But this is also about a man’s relationship with his own soul. It’s about what it takes to balance a life in which you can be honored as a hero during an afternoon statue dedication and come home to a reality where you need two people to help you take a dump (Steve’s words were slightly more graphic).
I’ve shared some highlights, but the emotional journey is one you need to take yourself.
On Tuesday night, Steve’s synthetic voice silenced an entire theater filled with people known to be loud: athletes, members of the media and New Orleans VIPs. We all waited for his eyes and modern technology to help him express his thoughts. He thanked the Orpheum Theater, and joked that he was ready for some tequila.
Toast him with the finest tequila you can find after you see this film, and send all your friends to the theater. We all need the perspective that this documentary / love story with a dose of comedy brings. If you need a reminder to live in the present, go see this film. You will leave with the determination to live your life to the fullest every single day.
As Steve says, “Better now than never.”
Watch Stephanie’s report from the Red (Blue!) Carpet where Drew Brees and others spoke out, by clicking here.