Steve Gleason: The Unbreakable Saint

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His wife Michelle became his guardian angel, helping him to eat and perform daily activities Steve was finding more and more difficult to do. He had difficulty walking, but could get around with a cane before being confined to an electronic wheelchair.

Steve began experiencing a change in his attitude towards life. A glutton for experiences already, he vowed to, in his own words “Smile, laugh, cry, and love for every breath that remains in my body.” In many ways, this would be his most daunting adventure yet. He began to look at the world for all its opportunity, even when many would say his window to live life was about to be slammed shut. Gleason would not stop traveling, nor exploring and testing his boundaries. One year after he was diagnosed, Steve found himself suspended in mid-air, free-falling to the earth as he sky-dived for the first time.

His new challenges not only involved taking care of himself, but also the mountains of Machu Picchu, and even the United States Congress.

Steve has used his fame and foundation to help people diagnosed with ALS lead better lives. In a fantastic documentary you can watch here, Gleason takes other people with ALS to Machu Picchu, risking life and limb to do something not many people will ever accomplish, despite being confined to a wheelchair.

Beyond these experiences and excursions, Gleason has left his mark on Capitol Hill.

In 2015, President Obama signed the Steve Gleason Act. The legislation makes it much easier for people with ALS to acquire better electronic wheelchairs as well as eye tracking technology like the kind Steve uses to speak, similar to the device Stephen Hawking has used.

But perhaps his greatest mountain to climb was yet to come. Soon after his diagnosis, he received some news just as good as his diagnosis was bad.

Steve Gleason was going to be a father.

Gleason began filming himself soon after he became stricken with ALS. At all times of the day, he wanted to document his life for his unborn son Rivers. He filmed himself performing daily activities with help from Michelle, as well as video diaries where Gleason would tell the camera about who he was. He had accepted that by the time Rivers was old enough to ask about his father, Steve would unfortunately be gone. The doctors had given Steve about a five-year window to live.

Steve hoped to leave little snippets of his personality for his son to discover when he was older, so he could know what type of man he was and how much he loved his son in his own words.

To this day, there are over 1,300 hours of video Steve has left and counting. The video he has left behind is the crux of the movie coming out at the end of July about his incredible life. The self-titled ‘Gleason’ is a documentary inside the life of one of the most extraordinary people of the 21st century.

At the Sundance film festival, it was one of 200 of about 9,000 submissions selected to be screened. The review has left audiences feeling captivated and simultaneously wrecked emotionally.

Next: The Legacy