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While fighting ALS, Steve Gleason continues to live life his way

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  • By Trent Cooper NFL.com
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"NFL 360" showrunner Trent Cooper shares how working to tell Steve Gleason's story for an upcoming special installment impacted him personally.

NEW ORLEANS -- It's shortly after 9 a.m. local time on Saturday, Dec. 22, and I'm riding in the back of a production van en route to my most important shoot of the year. Not gonna lie; my stomach is a little queasy. I've been producing and directing for 21 years, and I'm one of the most prepared dudes you'll ever meet, but I'm nervous today. I can't remember the last time I was nervous before a shoot.

Today, we are filming Steve Gleason.

It is the culmination of a season-long passion project for me and my posse at "NFL 360." If you haven't heard of "NFL 360," it is an Emmy-nominated series from NFL Network hosted by Melissa Stark showcasing some of the boldest feature and documentary filmmaking in the sports world. And if you don't know what I mean by "passion project," think of that time when you and your third-grade buddy tried to build the bestest, coolest tree fort in the whole entire world. Only this Gleason project took six months, not six hours, and we are getting paid to work on it. Although, trust me: Every one of us would have paid them to let us do it.

Steve Gleason is an inspiration to us all.

The aforementioned passion project tells the story of Steve Gleason, who went from being a no-name member of the New Orleans Saints whose ballsy blocked punt became a symbol of rebirth for a city, state and region still reeling from Katrina, to an ALS warrior whose ballsy response to a presumed death sentence inspired the entire disabled community and beyond. The visuals are some of the best I've seen in a sports doc (props to Ryan Travis, Dakota Deil and Matt Taylor). The editing will stop your heart and break it in equal measure (props to Stephanie Yang). I couldn't be more excited about this project.

But to be honest, Gleason's story has already been told multiple times. There was an extremely well-done two-hour episode of "A Football Life" on NFL Network. And then there's "Gleason," an amazing feature-length documentary that Amazon released two years ago, which was nominated for the Grand Jury Prize at the Sundance Film Festival in 2016. So when my boss, Dallas Hitchcock, gave me this assignment, my first response was, "Why are we doing it?" My second was, "If we are doing it, we need to tell this story through a different lens and make damn sure people feel things they've never felt as it relates to Gleason." Six months later, I can say without a doubt that we accomplished both.

This is the next chapter of the Gleason story.

It's revealed by people whose world he's rocked in the past eight years. Some are part of Steve's inner circle. Some are patients with amyotrophic lateral sclerosis (ALS) who, though they barely know him, have had their lives changed by him in profound ways. Included in this group is the recently diagnosed Jay Quinlan, who offers an inside look at the horrifying and lightning-fast progression of ALS, which, according to The ALS Association, is "a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord" and leads to the loss of muscle function, with an average life expectancy of two to five years after diagnosis. Quinlan also describes the emotional effect of "banking" his voice while he still has it, which is something Team Gleason -- a foundation formed by Gleason and his wife, Michel -- urged him to do immediately after his diagnosis. This was done so his voice can be used when he no longer has the ability to speak (which will likely happen a year from now) via a speech-generating device controlled by his eyes. Fascinating. Heartbreaking. Overwhelming.

Gleason believes that, until there is a medical cure for ALS, technology can act as that cure.

In 2015, Gleason spearheaded a crusade on Capitol Hill to pass legislation that makes speech-generating devices available and affordable to all who need them. Steve knows how important it will someday be for Jay Quinlan's future voice to sound as close to his original voice as possible, rather than some generic robotic voice. That little nuance is at the heart of what makes Steve Gleason a gamechanger for the ALS community. He champions the little things that make people living with this and other neuromuscular diseases and injuries feel alive and independent. He knows firsthand what it takes to maintain an authentic connection with the people he loves, and he is spending whatever time he has left on this Earth making sure he and others can do just that.

Apparently, people in high places took notice. And "NFL 360" had a front-row seat for the next chapter of the Gleason saga: The uphill battle fought by U.S. Sen. Bill Cassidy of Louisiana to get the votes required to award Gleason a Congressional Gold Medal. Bear in mind, past winners include Thomas Edison, Mother Teresa, Jackie Robinson and the Dalai Lama. These things are really hard to get.

Back to filming with Steve -- and my queasy stomach.

As I approach Gleason's house for the first time, I realize that I'm not in a great place, emotionally. I've been around a fair amount of sickness in my day, and some repressed feelings are rushing to the surface. My mom had multiple sclerosis from before the time I was born. Her case was chronic, progressive and ultimately as ugly as it gets. My brother and I were in charge of her care for a big chunk of our lives. Her last years played out in a nursing home, and let's just say those were not good memories. So as much as I want to feel the hope that Steve Gleason has been able to instill in so many, it's kinda too late for me.

Steve's wife, Michel, greets me at the door with a toothbrush in her mouth and a newborn baby in her arms. She's awesome -- and yes, the Gleasons have added to their family. It's yet another testament to Steve's ability to look ALS in the eye and say, "I am doing this my way -- deal with it!" Michel tells me that Steve will be out in a minute and wants me to know a few tips for communicating with him. He prefers people stand in front of him, in his eyeline. If his eyebrows raise up, it means "yes." If he blinks both eyes quickly, it means "no." And if he winks, it means, "That's cool." I nervously ask if I should touch him. As the words come out of my mouth, I feel like an idiot. She laughs and says, "Touch his hand when you say hello. He digs that." She leaves to go change the baby. I wait. My crew waits. No sign of Steve. And I can't help but notice something is missing in this house.

There is no sign of sickness.

Bitchin' artwork? Yes. A cool leather couch? Yes. A vinyl record collection that would make Dave Grohl proud? Yes. Sickness? Nope. The Grim Reaper? No way. What I do see are footballs and Wiffle balls and toy soldiers belonging to Rivers Gleason, who is quite possibly the happiest 7-year-old boy on Earth. I also see a trampoline through the window and a sprawling maple tree wrapped in twinkly lights. To clarify, I'm not seeing wealth. I'm seeing life and happiness; this is completely different from the environment I grew up in. Suddenly, I'm less queasy. This place has an incredible vibe, and I want to be part of whatever is going on here.

Ten minutes later, Steve rolls out in what feels like the Tesla of electric wheelchairs. My mom never had anything like this. The first thing I notice is that he is driving the chair with his eyes. There's a Microsoft tablet mounted in front of him, and he's controlling everything from the lights to the curtains to the music playing. And he's good at it. Really good. He parks and triggers a greeting. "Hello, Trent. Thank you for coming. I really appreciate it." I say hello, touching his hand, as Michel told me to do, and then I see it, the thing that makes Steve "Steve" and is at the heart of this story: his smile. You can't fake a smile like that. It is a reflection of his soul, a genuinely happy person who is perfectly content to share or give that happiness away to a complete stranger. Suddenly, it's not about my personal baggage or my ability to do a nice job on this project. It's about the gift I'm getting from him, and I can't help but receive it.

When Steve Gleason smiles at you, it touches every corner of your soul.

So, the shoot today is supposed to be in the style of cinema verite, which is a snobby way of saying we are going to use the camera to observe Steve living his life in the most natural and authentic way possible. But since he is confined to a wheelchair and able to move little more than his eyes, I assume I will have to goose the verite along. Documentary producers do that more than they care to admit. I try to tee up a few things that seem visual and easy to execute. "Let's show you guys having lunch together, or film Steve outside watching Rivers jump on the trampoline." Steve grins and says, "Rivers and I would like to take you guys to pick oranges. If that's OK?" Oranges? Uh ... sure. Sounds awesome, Steve. Then he tells me we will be traveling through the magic forest to get there. Magic forest? WTF?! Before I can get my arms around this scene or how to film it, Steve is leading my six-person crew across his acorn-filled backyard (yes, the wheelchair goes off-road) through acres of towering trees dripping with moss. Rivers weaves in and out of his dad's path like Lassie, and I'm blown away. Where are we going? And how is this dude so damn happy?

We make it through the magic forest.

Rivers scurries to a small tree tucked inside a garden area, picks out an orange for his dad and delivers it to the wheelchair. Rivers is perfectly happy to climb all over his dad's skeletal legs and lap. Steve is skin and bones. ALS has robbed him of every muscle he once had in his explosively athletic body. Rivers doesn't care. His connection with his father is like no other I've seen. Steve tells me he's been taking Rivers here since before he could walk. I do the math and realize the boy (born in November of 2011) has been alive almost as long as Steve has lived with his ALS diagnosis (which came in January of 2011).

Later, I observe Steve quietly busting Rivers' chops about eating a full lunch before he goes off and plays with his friends, and about thanking his mom for preparing the lunch in the first place. I smile to myself and realize this kid is not perfect, and his dad is not afraid to play the heavy when he has to.

And then Steve calls me over to his computer and shows me iPhone video of Rivers' first home run. It's "7 and under" baseball, but it's a dinger. The kid has a sweet lefty swing, and I hear his mom screaming off-camera the moment the ball leaves the bat. Steve shows me once. Rivers rushes over to look, as well. I make them show me two more times. Now it's me who is smiling ear to ear in a way that could light up every corner of someone else's soul. All I can think of is that this man, Steve Gleason, has lived long enough and free enough to see his son's first home run. Soon, he will see his newborn daughter take her first steps, and day in, day out, he will continue to experience his wife's humor, grace and beauty. He is giving ALS the finger, and it's giving me hope. Hope that Steve and others will have it better than my mom did. Hope that I will feel a connection with my own son that is as strong as the one between Steve and Rivers. And hope that somehow, this feeling has been captured on film and will make it to our piece.

To find out, tune in to "NFL 360" on Tuesday, Jan. 15, at 8 p.m. ET on NFL Network.

"NFL 360" is an Emmy-nominated series hosted by Melissa Stark. Be sure to catch Tuesday's special edition, airing at 8 p.m. ET on NFL Network, which will feature an in-depth look at the impact Gleason has had on the lives of ALS patients and their family members; Stark's sit-down interview with Gleason following the announcement that he will receive a Congressional Gold Medal; and a video essay by Mark Kriegel considering Gleason's legacy in light of sports icon Lou Gehrig.

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