Steve Gleason details the making of his powerful documentary

The former eight-year NFL veteran explains the story behind his new film, which details Gleason’s struggle with ALS and how it's affected him, his wife and young son.

I have no intention to “hang in there” or “survive.” I intend to keep living a purposeful, productive life, and do what I love.
 – @TeamGleason

I tweeted that a couple weeks ago because I get that a lot: Hang in there, Steve. It’s often preceded by something like, You’re a true hero!

But do heroes “hang in there”? Look, I get it. It’s a figure of speech, a crutch phrase for when you aren’t exactly sure what to say. It’s usually well-intentioned, but I think it’s worth exploring. Personally, I think “hang in there” is for cheesy kitty-cat greeting cards. Nothing against kitty cats, but hanging in there isn’t for me.

On Jan. 5, 2011—three years after I retired from the NFL—I was diagnosed with ALS, a terminal disease that causes your muscles to atrophy and die. There is no cure. I learned that when I was diagnosed, which was right about the time I started recording videos sharing my thoughts about what was happening to my body. Nearly 1,500 hours of footage later we’re releasing a film, Gleason, about how my wife, Michel, and I have lived our lives over the last 5 1/2 years. 

When doctors first diagnosed me, their basic sentiment was, We’ve got nothing. Hang in there. Thanks a lot, dude.

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A few weeks after that diagnosis, Michel and I found out she was pregnant. Immediately I switched my focus; instead of introspective journals, I started recording videos that would help our yet-to-be-born son, Rivers, know who I was. I still record my memories, beliefs, shortcomings, advice and loves.

Fortunately for someone in my position, ALS rarely affects the mind or the eyes. As a result there is a non-medical “treatment” for ALS. I would even call it a cure. That treatment is technology. I cannot move or talk or breathe on my own, but because of evolving eye-tracking technology, which I use in conjunction with a tablet, I can do anything an ordinary person can do: text, talk, play music, watch movies, conduct online meetings ... write a column in Sports Illustrated. I’ve partnered with Microsoft to develop a program where people like me can drive with our eyes, and next I’ll be working with them and Johns Hopkins to explore ways we can play musical instruments. I can control everything in our house: TVs, doors, lights, the thermostat ... I even tweet while I’m pooping. Just. Like. You.

It ain’t easy, but I love the life that Michel and I share. I played eight years in the NFL, and yet I don’t really remember ever thinking, I need to hang in there. ... Maybe while I was mid-air, blocking punts. Hang in there!

When you watch our film, you’ll see elements of football—but it’s not about football. I think sports movies, in general, tend to abide by an almost clichéd storybook narrative. The journey. The struggle. The resolution. The sunset. But from my experience, real life doesn’t work like that. Real life is messy. 

• Photos from the New York premiere of Gleason, hosted by SI

When I started recording journals for Rivers, who’s now four, I wanted to be sure he didn’t get the “storybook sports dad” version of me. I wanted him to see the raw, imperfect, flailing person that I am. I wanted him to see my vulnerabilities, because I wanted him to know that sharing our weaknesses is how we find our strengths. And because my goal was to share my most real self with our son, that intimacy and rawness is translated in the film for the audience. I’d like to say that I’m completely comfortable with this but, truthfully, it’s downright scary. One of the themes I try to convey to Rivers as I continue to shoot video journals is acknowledge your fear, but proceed anyway. I had to take my own advice as this film was being made. Acknowledge and proceed.

Really, my movie isn’t even about ALS. It’s about being a human rather than a kitty cat. Michel and I chose to turn my footage into a feature film because we thought viewers would see themselves in our humanity. We’re two imperfect people striving to find strength, solidarity and love under extraordinary circumstances. I believe the desire to live with purpose, despite the circumstances in one’s life, is universal. If our movie inspires anyone to live life more triumphantly, rather than hanging in there, we’ve succeeded.

Gleason opens in select theaters Friday.