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Strength, Humor and Solidarity: The Story of Steve Gleason and Scott Fujita

Dec 28 2016

Steve Gleason
So before we really get into things here, I want to share a story. It’s about a hike Scott and I did together a few years back, in San Francisco.

Scott Fujita
Oh man, here we go. Really? You’re gonna start out with this?

Steve
Yep. I am … so the day after I was diagnosed, I went with Scott, our good friend Eric Johnson and Eric’s Zen guru on a dawn hike to the top of Twin Peaks in San Francisco. We combined the hike with a “tea cleansing,” which is basically chugging tea like a frat boy chugs beer. So—

Scott
Wait, I have to stop you there. It’s important to note that you and Eric were avid tea drinkers at the time. You were experts at this. I was kind of a tea-drinking virgin. That’s important. It’s not like we were all starting from the same place.

Steve
Right, O.K. So we got to the top of the hill, watched the sun rise and started drinking tea.…

Scott
Like one cup after another after another — just constantly refilling. This wasn’t just like having a serving of tea or whatever. We each had these gigantic thermoses full of the stuff. You guys were used to it, and could just down it. But it was just … so … much … tea.

Steve
Uh-huh. Right. So about five minutes later, Fuji had to pee. Ten minutes later … again. Again. Again. Again.

Scott
Yeah, I don’t know if I had, like, an overactive bladder or what, but it’s true. I’d ask to take a break, and I’d go and pee off the ledge at Twin Peaks. Then I’d come back, have a few more cups of tea, and have to pee again. It was crazy.

Steve
Of course, Eric and I commented on Scott’s regularity, but then our guru, whose name is Master Wang, quietly and serenely said, in broken English, “Oh, Scott in trouble. He have weak dick.” We all laughed so hard, we nearly peed our pants.

Scott
Man, it was messed up. He was like, “Scott has weak penis.” I remember you looking at me and being like, “Huh … weak dick. Interesting. You will now forever be known as weak dick.” It wasn’t ideal.

All kidding aside, though, that was a cool moment because it really marked the beginning of this journey with ALS. And we had a real connection up there. We laughed and had fun at a moment most people would perceive as very sad and dark. I’ll never forget the four of us kind of holding hands and looking off into the foggy sunrise and being like, Hey, I have no idea what this journey is going to be, but let’s just take it head-on.

That’s one key to thriving despite having ALS — Have friends you can laugh hysterically with.

Steve Gleason shares an important aspect of his friendship with Scott Fujita. (0:27)

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It was pretty special … but yeah, at the same time, that’s when I got the nickname “Weak Dick.” Michel will still call me that sometimes. I’ll walk into a room and she’ll be like, “Hey, how’s it goin’, Weak Dick?”

Steve
Yeah, while Master Wang’s “weak dick” comment was unforgettable, the most powerful moment of that adventure was, like you said, when we gathered in a circle and shared some thoughts and prayers — our intentions. You looked at me and said, “Steve, I’ll walk to the ends of the earth with you, wherever that may lead us.” Looking back, with a lot of ingenuity, support and downright obstinacy, it’s led us to an incredibly triumphant and wonderful place — here on the edge. I’m so grateful, and better for it. So, thank you.

Hey, should we talk about when you first showed up in NOLA?

In this Monday, Sept. 19, 2011 photo, former New Orleans Saints football player Steve Gleason and his wife Michel walk on the Magnolia Bridge over Bayou St. John, where they married in 2008. The retired New Orleans Saints folk hero only hopes he can continue to lift people's spirits by the way he handles what until now has been a private struggle with ALS, a debilitating and ultimately fatal disease for which there currently is no cure. (AP Photo/The Times Picayune, Eliot Kamenitz)ASSOCIATED PRESS

Scott
Yep, absolutely. That was a cool time. I was the first free agent to sign with the Saints after Hurricane Katrina. All my friends and family thought I was frickin’ nuts for even considering going there. But for whatever reason, my wife, Jaclyn, and I just felt pulled to New Orleans. I remember seeing you for the first time during our off-season workouts that year. I was in the weight room with all my fellow meatheads, and I looked into the indoor practice facility and saw this guy with long hair, all by himself, doing yoga with the lights dimmed. So I turned to the other meatheads and I was like, “Who’s Mr. Yoga Pants in there?” That was my intro to you, man.

Steve
It could’ve been worse. At that time, I never paid attention to the draft or free agency, so when I first met you, I had no idea who you were, or that you were a big acquisition for the team. But something that struck me when we first met was how interested you were in learning about the culture of New Orleans.

Scott
I remember I was staying at a hotel in the warehouse district back then. I made that my home base for exploring the city and finding our place. Every day we’d have workouts from, say, 7 a.m. to noon. Then I’d get back to my hotel, and I would just essentially walk the streets and go barhopping and check out houses and condos. When I talked with you about everything I was discovering at that time, your eyes kind of lit up.

Steve
Yeah, I loved that you and Jaclyn had no intention of living in the suburbs like 95% of the players and coaches had done up to that point. I was excited because one of my favorite parts of living here was living uptown. There’s the tourist version of New Orleans, and then there’s the local version. The latter is such a rich, unique underbelly that made me love New Orleans, and I was excited to try to share that with you.

Scott
Man, to have you and Michel adopt Jaclyn and I like you did — and show us some of the music scene, and some of the off-the-beaten-path restaurants, and that sense of hospitality New Orleans had to offer — it was just such a good fit. And it was exactly what I was looking for, because I wanted the total experience. I always treated my football career as something that went beyond just football. I saw my career as a unique window of time when I’d get to explore new cultures and new communities that I might otherwise never experience.

Former New Orleans Saints football player Steve Gleason raises his hand to the crowd before the first half of an NFL football game against the Houston Texans, Sunday, Sept. 25, 2011, in New Orleans. Saints quarterback Drew Brees (9) and defensive end Will Smith (91) look on. (AP Photo/Gerald Herbert)ASSOCIATED PRESS

Steve
That’s a perspective we have in common, I think. I feel like you and I have similar outlooks on life. While we both were students of the game of football, I don’t remember us talking about the X’s and O’s of football at all.

Scott
So true. We took our jobs as football players seriously, and we prepared diligently. But outside of football, I feel like we tried to take it not so seriously, and to make sure that football wasn’t the only thing that mattered. I didn’t want my job to define me or to define my life.

Steve
That’s definitely something that helped us connect. In life, and especially in football, there’s a layer of ego and pride that can separate people from each other. I think you’re unique in that you can give everything you have to a cause or purpose, but at the end of the day, you are able laugh at yourself.

And, I should say, we don’t always see eye to eye. We don’t have the exact same views spiritually, politically, philosophically and professionally, but I think we’re both open to being challenged and learning in those arenas. That’s a pretty good foundation for friendship.

Scott
Absolutely. The friendships I value most are those where you can have deep conversations and just … go there, and explore everything with no judgment. It’s a really safe place to be, and at the end of the day that’s what friendships should be about.

Steve Gleason's Ring Party at Mr. John's Steakhouse on St. Charles Ave in New Orleans. Private Party for Friends and Family to share a Special Night when Steve Gleason was awarded a Super Bowl Ring by Head Coach Sean Payton of the New Orleans Saints. All Images Copyright Michael C. HebertMichael C. Hebert

I remember not long after you were diagnosed, you and your brother stopped by our place in California on your way from New Orleans up to Alaska in your camper van — “the Iron Horse.” We sat up late into the night in the van talking about the afterlife and faith and spirituality.

Since it was early on after the diagnosis, it could’ve been awful — because if the experts at that point were to be believed, you were only going to live for two to five more years. So it could’ve been something where it was almost like gripping and preparing for an ensuing death. But that conversation was just amazing in every way. There was some really deep discussion about what we thought might be next — about what happens after someone dies — and I don’t think any of us agreed on what was next, but it felt good, and natural. It wasn’t as if we were each like, No, this is what’s going to happen when you die! It was a dialogue.

I don’t think I’ve had many conversations like that where I’ve really felt completely safe to share my beliefs. Things like faith and religion are so deeply personal, and it’s hard to be able to open up and not feel like you’re going to offend your friend — or, in this case, perhaps even make your friend afraid of what might be next. I mean, it’s very easy to say to someone who is dealing with this sort of terminal diagnosis: “Hey, I agree with whatever you say 100%. Totally. Yes. Whatever you say.”

You’re not that kind of friend, though. That’s not what you’re looking for. You don’t let people off the hook like that. You want people to be honest with you, and you aren’t looking for pity.

NEW ORLEANS, LA - JANUARY 31: Cleveland Browns linebacker Scott Fujita and former New Orleans Saint Steve Gleason attend the 2013 Legends For Charity Dinner Honoring Archie Manning at the Hyatt Regency New Orleans on January 31, 2013 in New Orleans, Louisiana. (Photo by Tyler Kaufman/Getty Images)Getty Images

Steve
Yeah, I think we both enjoy healthy, challenging debate, and I think we’re both pretty eager to learn and grow as people. People’s faith is a great arena to challenge and explore. By definition, faith cannot be rationalized, so there is an endless amount of exploring to do. Which is to say, the truly faithful will never find their faith. Those are the types of conversations I love, and they’re the backbone and foundation of my greatest friendships.

Scott
And, of course, being able to laugh and experience the joys in life is another thing that drew us together and that continues to shape our lives. Throughout the last five years, I’m really proud to say that we’ve been able to find humor in places where a lot of people might not think there’s any humor to be found. I think about that time when you were up in Cleveland getting the diaphragm pacemaker implanted. It was just me, you and two of our other good friends hanging out in the recovery room. It could’ve been really somber. But we found a way to basically take over the wing of the hospital and have a good time. Before long, guitars came out. And I remember sneaking beers in. So it became festive … and fun! We found joy in that situation, man.

Steve
That’s one key to living and thriving despite having ALS. Really it’s true for life in general. Have friends who you laugh — and laugh hysterically — with.

Scott
I know one thing, I have very few friends who would be like, “Hey, your house is beautiful and your guest room is perfect … but I’m gonna sleep out on the lawn tonight.”

That time at my place a few months after you were diagnosed is something I think about often. I remember us having drinks in the evening, and putting my kids to bed, and then it was just you, Michel, Jaclyn and I sitting around the table. At some point we were like, Alright it’s probably time to head up to bed. And, out of nowhere, you go, “Nah, I’m gonna sleep outside tonight.”

Steve
Well, your house is spectacular … just not as spectacular as the universe.

Scott
I remember Michel was like, “Um, alright, go for it … I’m gonna sleep in the guest room.” But it sounded like an awesome idea to me. So it ended up being the two of us out on the grass! We just dragged some sleeping bags and blankets out there and slept under the stars.

It was an awesome night — a moment to live for.

Steve Gleason

Steve
Yep, I love sleeping under the stars. I don’t know, man … it feels like where I belong. My brother and I started sleeping outside when we were kids. I guess it became a regular thing in some ways. So in high school or college, when it made sense — and sometimes when it didn’t make sense — I’d sleep outside. Michel and I traveled around the world in 2008 and we slept in my tent and camper vans for most of that six-month trip. I feel a profound connection to what I see and know about the cosmos. Additionally, I am overcome with wonder with what we have yet to learn.

Scott
I love having a friend who thinks like that, and who would decide to sleep outside on a whim, because that’s the kind of s*** that I would probably do, but I don’t have other friends to do it with. Or my wife isn’t going to be like, Yeah, honey, let’s go sleep outside tonight under the stars. So you’re that person for me. And the thing is, I know for a fact you’ve also been that person for so many others. There are 50 or 100 other people who could say the same thing. You have such a rich history with so many of your friends. And you bring those types of experiences into their lives.

Steve
It was an awesome night — a moment to live for.

Scott
It was just such an unforgettable moment, so simple, and peaceful, and cool. One thing I’ve struggled with over the past five years — and I’ve shared this with you on a few occasions — is that sometimes I feel like, you know, maybe there aren’t enough of those purely friend moments anymore. I have guilty feelings about that.

Our whole mission with Team Gleason … we do so much to try and move the needle. And it’s so worth it — I committed to being with you on that, and I see the value in it, and how much it’s changing people’s lives. But it’s so easy to get caught up in the schedule and the rat race and trying to do all we can to grow this movement. Sometimes it feels like, collectively, we’re all so focused on this mission that you and I don’t have as much time anymore to just enjoy each other’s company — like there’s not enough time to just hang around and b.s. and shoot the bull, and to have those friendship-type moments that we’d grown accustomed to. So I’m actually saddened by that, the fact that we haven’t had more of those times. I worry about stuff like that.

Steve
I can see that, but I think we’ve done pretty well, Fuji. From the memories we’re discussing here, to climbing to Machu Picchu, we’ve done some amazing s*** together. I feel we’re both really committed to being present fathers to our kids as well, so that is certainly a factor. I’ve definitely had relationships fade — especially those that were based primarily on outdoor adventure, because it’s harder for me to jump on a plane and fly to see people. But that hasn’t happened with us. Also, I had a year or two of transition, as I was getting my ventilator and trach. But the past two years have been a time of expansion. I’m able to be super active while staying productive. I think our summer in California this year [Steve and his family spent nearly all of July at Scott’s home in Carmel, Calif., while the two friends participated in various West Coast premiere activities surrounding the release of Gleason.] was evidence of that.

Scott
Yeah, this past summer was the best. We found a way to make it just like good old times. Almost every day, it was the kids in the pool together and us watching them swim. Or you and I watching Rivers teach our girls to play baseball out in the yard. Or putting the kids to bed together around the same time, and then just sitting around the table telling stories, laughing, joking around, playing Yahtzee, drinkin’ beers. I feel like there haven’t been enough of those times lately, so to get back to that was pretty special. And I really got to see, up close, your passion for being the best dad you can be to Rivers. To see you in action as a dad was awesome.

You told me that this footage will change and affect people to live more meaningful lives — you’ve been proven right.

Steve Gleason reflects on the encouragement Scott Fujita offered during the filming of his documentary. (0:31)

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Steve
My family is lucky to know you, Jaclyn and the girls. It really was an epic summer. Our kids are at a great age to really play well with each other. It was perfect to have the chaos and buzz of movie premieres each weekend in cities like L.A., New York and San Francisco, and then come back to your place and swim, play baseball, watch the moonrise and follow the planets, make s’mores and tell drunken stories — moments to live for.

NEW ORLEANS, LA - FEBRUARY 02: (L-R) Michel Gleason, Steve Gleason, Scott Fujita and Jaclyn Fujita attend The Giving Back Fund's 4th Annual Big Game Big Give Super Bowl Celebration on February 2, 2013 in New Orleans, Louisiana. (Photo by Cindy Ord/Getty Images for Giving Back Fund)NEW ORLEANS, LA - FEBRUARY 02: (L-R) Michel Gleason, Steve Gleason, Scott Fujita and Jaclyn Fujita attend The Giving Back Fund's 4th Annual Big Game Big Give Super Bowl Celebration on February 2, 2013 in New Orleans, Louisiana. (Photo by Cindy Ord/Getty Images for Giving Back Fund)Getty Images for Giving Back Fund

I think we’ve done pretty well, Fuji. We’ve done some amazing s*** together.

Steve Gleason

Scott
And it was fun to get a bit of downtime together in the midst of the film’s rollout. This has been such a monster of a project. And it’s so deeply personal, so it can be a tough grind. It’s pulling back the curtain in a really big way that takes a tremendous amount of courage.

Steve
I’m not going to lie, this has been a scary process of turning our family’s most vulnerable moments — which were initially intended for our son Rivers — into a public film. There were times that I was ready to push the eject button. But throughout this entire time, you’ve been a fortress of strength and solidarity for me. You told me multiple times that this footage will change and affect people to live better, more meaningful lives. As the film has been screened, premiered and now released nationwide, you’ve been proven right.

All along, you’ve been an amazing leader. That’s been true ever since I met you. But your leadership skills have transferred over as you’ve helped lead our production team throughout the process of making this film. We’ve met and dealt with some difficult and less-than-principled people over the past three years. Your ability to see the best in people, while still challenging the status quo, inspires me to be more understanding and empathetic.

Scott
That means a great deal to me, Steve. I am just so proud of you, and Michel, and Rivers for having the courage to see this thing through. It’s been inspiring to me in so many ways. You’ve always been that friend who isn’t afraid to challenge himself or to do things that might, in some cases, be really hard — but that are worth doing in the end. Your influence on me when it comes to that stuff, on living your life to the fullest, is something I cannot even put into words. One of my favorite examples of that, and a memory that brings me joy often, is the time a few months after your diagnosis when I sent you to that bridge over the Arroyo Seco River.

Steve
Oh, that was great!

Scott
You had asked for directions to my place from L.A., but wanted “the road less traveled,” so I sent you the back way, up through the mountains. I’m like, “You’re going to find this beautiful bridge, a rusted white bridge over the river.” I said, “Just go there.” And that’s all I said. Nothing else.

I spend all day, every day at rivers’ edge — Literally.

Steve Gleason discusses the origin of his son’s name. (0:15)

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Five or six hours later, Michel sends me a video of you two parking along the riverbank, right beneath that bridge. Then you hike down to the river with your cane. You get all the way down to the water’s edge, and it’s just the coolest thing. I mean most people wouldn’t even be willing to go find that spot, or be able to find it. But you guys found it.

Steve
Yeah, there’s almost no place that I feel more alive than at the edge of a cool, clear river. Our son’s name, Rivers, is a tribute to that phenomenon. So I spend all day, every day, at Rivers’ edge — literally.

Scott
It’s so fitting, man. I love that. And, you know, I’ll always remember what happens at the end of that video. Once you got to the water, you couldn’t resist making the most of the experience. You didn’t hesitate or hold back or waver. You just dove right into that river. Headfirst. With all you had.

And it was … beautiful.