After he is diagnosed with ALS, former professional football player Steve Gleason begins making a video diary for his unborn son, as he, his wife, and their friends and family work to raise money for ALS patients as his disease progresses.
At the age of 34, Steve Gleason was diagnosed with ALS. Doctors gave the former NFL defensive back and New Orleans hero two to five years to live. So that is what Steve chose to do - LIVE: with purpose, for his newborn son, for his wife, and to help others with his disease.
I have never wanted to be a saint. I've never been a saint before Steve. I'm never going to be a saint. I don't want to be, like, a devil or a dick face, but I don't want to be a saint, either. I just want to be a real person.
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Greetings again from the darkness. Heroes come in many shapes and forms. Steve Gleason became a cult hero when he blocked a punt for his New Orleans Saints team in their first home game after Hurricane Katrina. For this, the team erected a life-sized statue outside the Superdome. In his time since that game, he has suffered more than any person should, and he has provided hope and assistance to more unfortunate folks than just about anyone. By now, just about everyone would consider him a hero.
Director Clay Tweel takes a very direct approach to telling Steve's story. He guides us through the life of the undersized Washington State linebacker who, against all odds, carved out a 9 year career in the NFL; married a remarkable woman who was his equal as a free-spirit; was diagnosed with Amyotrophic Lateral Sclerosis (Lou Gehrig's disease); learned to live with the debilitating disease; established a foundation to provide assistance to others with ALS.
Tweel pulls no punches in showing the progression of the devastating disease, and equally as importantly, in the toll such a disease takes on the loving caregiver after so many years. Gleason retired in 2008, and was diagnosed in 2011. Six weeks later, he and his wife Michel found out she was pregnant with their first child. Staring down the disease and the impending birth of their child, the couple took a 2 month expedition to the Alaska wilderness. This could be interpreted as their way of leaving their "old life" behind, but this couple is so full of life and spirit, that it was in fact, merely a next step.
The diagnosis and the baby announcement motivated Gleason to begin filming video blogs/journals for his unborn child. His stated goal was to "share with you who I am", since the odds weren't good that father and son would ever be able to hold a conversation or play catch. Clips of these video entries are shown throughout and capture Gleason's charm, humor, sincerity and spirit of life.
Son Rivers arrives in October 2011 just as the disease is creating severe challenges for Steve's physical and verbal capacities. We watch as Michel transitions from free-spirited newlywed to full-time care-giver and first time mother. Her coping methods are on display, as are the effects on her energy and outlook over the next few years.
With the help of friends and family, Team Gleason is created as a foundation to provide assistance to ALS sufferers. The foundation finds its newest mission when Medicare announces that vocal/speech technology will no longer be covered for ALS. "No White Flags" becomes the calling card for the foundation, and these activities are blended with Gleason's medical and family hurdles including his religious father who drags him to a 'faith healer'.
Moments with Eddie Vedder and Drew Brees, among others, lead us to the global phenomenon known as "the ice bucket challenge" for ALS and finally the Microsoft Super Bowl commercial featuring Gleason and new speech technology. The film and story are simultaneously gut-wrenching and inspirational, and provide a rare behind-the-scenes look at the emotional and physical impact of disease on both patient and caregiver.
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