Keep Exploring: The Inspiration of Steve Gleason

Featuring: Mike McCready, Pete Frates, Melissa Stark, Frenchy, Tony Thompson, Roman Harper and Marc Broussard

April 4, 2013: It’s 7:45am, and I sit down in my office. Each morning I would typically turn the floor lights on before taking my seat, reading the news and sipping a coffee. But for some reason on this day, I subconsciously kept the room dark. Suddenly, my phone starts buzzing repeatedly. My Aunt had passed away. She fought ALS with everything she had for almost two years and did so each day with a smile. She was a heartbeat of the family, and someone who lived with such spirt even in the darkest of times. Somewhere along the way of her courageous journey in dealing with something as heavy as ALS, she crossed paths with #37.

#NeverPunt

I remember it being an overly humid New York evening on Monday, September 25, 2006. One that warranted the rare occasion of me having the windows open in my shoebox, fourth-floor apartment on the Upper East Side. I’m bouncing around my room when suddenly my wire-stand that supports a 19-inch TV with a built in VCR is erupting. Steve Gleason, a safety for the New Orleans Saints had just blocked Michael Koenen’s punt. Curtis Deloatch recovers the ball in the endzone, and just like that, one minute and thirty seconds into the game, the Saints took the lead in their first home game back in the Superdome following Hurricane Katrina. On the sideline, Drew Brees pumps his fist and you can see his smile radiating through his helmet. Though such an electric play is a rare occurrence, Gleasons’s teammate and good friend, Scott Fujita stated, to Gleason, the play was “just business as usual.” The announcers allow the sweet roar of the crowd to take over the airwaves. Brees told NFL Films that he “has never heard a sound more meaningful than the ball hitting Gleason’s hands that night.”

I stood there mesmerized. A book drops from my hands and the thud of it hitting the wood floor was inaudible due to the transmitted exhilaration coming from New Orleans. I sit at the edge of my bed overcome with emotion and I fixate on #37. There was something so powerful coming from his demeanor during one of the most chilling moments in the city and NFL’s history. His Rockstar hair mixed with a Rocky Balboa eye-of-the-tiger look had just injected so much exhilaration into an entire community. It’s inexplicable, but somehow, Steve Gleason, a Washington State Grad from Spokane, who was an undrafted free agent signing, just seemed like the perfect person to do this.

In 2011, Gleason would be diagnosed with ALS. Over the past eight years, it seems the generosity and optimism spurred from that blocked punt was somehow just the starting point for Gleason in making a massive difference globally. To snapshot some of these accomplishments Gleason has:

Established Team Gleason – a 501c non-profit that provides for and finds solutions for those living with ALS
Been awarded a congressional gold medal – a bill was unanimously passed honoring Gleason’s work in ALS research
Pioneered the Steve Gleason Act, Enduring Voices- securing funding for speech-generating devices for ALS patients
Had a neuroscience center named The Steve Gleason Institute opened in his honor at Washington State University
A statue commemorating the blocked punt next to the Superdome
Created / curated Gleason Gras
Been a keynote speaker for Microsoft and at United Nations sponsored Social Innovation Summits
Worked with Microsoft to help create technology that helps patients navigate power wheelchairs with their eyes. Such technology is now part of all Windows 10 products
Held the largest collaborative ALS research summit in the world
Created and starred in a documentary entitled Gleason, which chronicles five years in his life battling ALS
Hiked Machu Picchu
Along with his wife Michel, became the father of two children

I’m typing this article with one hand because I have two fractures in my right (dominant hand). Gleason writes with his eyes because “life comes from within your heart and desire.”

At an ALS benefit concert held in Charlotte, NC shortly after my aunts passing, my cousin won a raffle where the prize was a football that Gleason signed by holding a sharpie with his teeth. To this day, my cousin carries the football on every ALS walk he participates in.

When I think of the simple purpose of Artist Waves, it’s to properly capture the ripple effect of the most inspiring artists and efforts. To practice what I preach, I must acknowledge that one of the most inspiring human beings on the planet to me, is Steve Gleason. I believe Gleason is an artist of life.

Today is Gleason’s 42nd birthday, and it’s with much pride and gratitude that I was able to collaborate here with seven extraordinary people who join me in celebrating his immeasurable impact.

artwork by: Frenchy

Mike McCready – Pearl Jam:

Steve Gleason has inspired me in many ways – to keep going no matter what, having a clear vision on what to do in life and make people feel better by helping in any way you can.

Gleason Gras in 2012, was a beautiful experience in that I got to feel like my family was part of Steve’s. Michel’s Dad and Mom made my family so welcome and I’ll always appreciate that. I also got to see Trombone Shorty rock the house.

I will always carry Steve’s, smile, humor and caring about others. He is the most impressive guy I’ve ever met. One of my favorite experiences was going to Frenchman Street on Halloween with Steve. He was dressed as Hannibal Lector!!! I was Alice Cooper and our families had a blast. Love you Steve, Michel, Rivers and Gray.

Pete Frates:

Steve has inspired me in every way imaginable for not just a fellow ALS patient, but also as a man; a father, a husband, a brother, a son, and a teammate. He encouraged me to not take the diagnosis laying down, to leverage my network for a change, and to become a mentor for other ALS patients, like he is for me.

Everyone knows that Steve is a former professional football player, but did you know Steve played college football AND baseball?! He made it VERY well known when I first met him. The first time we met was when he hosted me, my wife Julie and brother Andrew down in New Orleans in 2013 for Voodoo Fest, and he pulls up his laptop and says, “Hey Pete you played Division 1 baseball, right? Yeah, so did I along with D1 Football!” He then pulls up his YouTube highlights of him hitting a homerun in a Washington State game! I love that type of ball-busting and competitive attitude about Steve.

Steve doesn’t just think outside the box, he is on a different level. So, when the #ALSIceBucketChallenge came around, I knew Steve would have some fun with it and, boy did he ever. He was naked!

Steve paved the way for ALS patients to attack this disease through challenging the status quo of all aspects of the disease. Not just advocacy, but research, fundraising, care and family support. He truly encompasses what it means to be a great leader and I am a better man for knowing Steve.

Melissa Stark – NFL Network:

Everything about Steve Gleason is inspiring – starting with the way he played football and made those around him better players. Then there’s his honest, and gut-wrenching documentary that detailed his diagnosis with ALS and the daily struggles he endures. To show people what he deals with and overcomes daily is the definition of courage. His relationship with his wife and children is inspiring because of the deep belief they have in each other and the fact they are his reason for continuing this battle. The way he is fighting to change what it’s like to live with ALS is beyond inspirational. No one would have blamed him if he had just focused on his own fight and his own family….his selflessness is above and beyond.

And simply the fact that he can find a reason to smile every day despite it all, should be an inspiration to any one dealing with any struggle.

What impressed me most about Steve was his sense of humor. And his wit. And his depth. The list goes on-and-on. He’s quick, funny and emotional, and not afraid to show it. He wears his emotions on his sleeve and he’s not ashamed of it! Despite everything going on, he’s able to find humor and put whoever he is talking to at ease. It’s an amazing quality in any human being.

Meeting Steve and spending time with him was one of the most meaningful interviews I’ve ever done in my 25-year career. He’s a game changer in every sense of the word. He didn’t choose this, of course, but now that he has ALS, he’s facing it head on, literally changing the world and saving lives. Talk about an impact! We always talk about making a difference, in whatever small ways we can – Steve Gleason is doing that in such a major way, making his mark on this world and giving people a voice, a life and hope. What could be more meaningful?

Frenchy – Renowned New Orleans artist:

Steve inspires me to never give up, to be the best father and husband you possibly can be, take what you got and make the best of it as you help inspire the world to be a better place, and of course, dat sweet smile!

Back in 2001, during my first painting as the “official live action sidelines artist of the New Orleans Saints”, Steve stood out on the field. His energy was bar none – never mind the hair. It wasn’t long after dat, Steve would show up at Papa Grow Funk on Monday nights at the Maple Leaf. A fellow lover of the “funk” he would dance and work out all the sore muscles from getting and receiving hits playing his ass off during the game. He would dance and I would paint my ass off at the Maple Leaf.

Steve and I have done several fundraisers together – with Steve watching as I paint. No words can describe dat, but my most memorable was painting with the Gleason family in my gallery as ESPN filmed a special about Steve to air on Monday Night Football.

When I think of what Steve means to this community it’s one word, “hope”.

Let’s fast forward to the reopening of the Superdome many hours before kickoff. I arrived early, with a heavy heart not having stepped foot on the turf since our scrimmage game against the Ravens, which was moved up to Friday because of the impending hurricane in the gulf. As I walked on the turf, I instantly began to cry with all my gear by my side. It was early, I thought I was alone on dat end zone just when I heard a warm voice say, “It’s OK French I cried too.” Surprised, I turned around to find Steve stretching out in his workout clothes. With a big smile on his face he jumped up and we began to talk about the energy and emotion coursing through the city and the dome that would be permeating through our bodies and souls. Eventually, he went to locker room and I go to my painting position on the sidelines.

Just before game time, the team is being introduced. I see Steve and the guys run to the far end zone to take a knee and pray. Once he finished and began running back, I ran beside him and screamed “Gleason”, he turned, we made eye contact, (till this day I’ve never seen such intensity in anyone’s eyes). I extended my hand and Steve gave me the hardest low five of my life…. I knew dat day was going to be over the top, and sure enough BAM … blocked punt, followed by the loudest most loved-filled crowd in the history of humankind. We ended up kicking Atlanta’s ass.

I finally get back to my studio on Oak Street across from the Maple Leaf and before I could get out of my van, a few friends ran out of the Leaf to let me know Steve was inside keeping it real and dancing to the funk. I dropped my gear, running into the bar and gave our brother a big hug. The rest is history. Even as I am writing this, tears of joy stream down my face onto my writing tablet. Thank you, Steve. Thank you, New Orleans.

We DAT!!!!

artwork by: Frenchy

Tony Thompson – Washington State University:

Steve’s been inspiring WSU since he came to this campus as a freshman. His style of play and leadership shown on and off the field made him a WSU icon long before his fight against ALS. Now that he’s in the national spotlight, it’s just showcasing what the Cougar Nation has always known about Steve: he’s a fighter with an indomitable spirit.

I can go on about his playing days at WSU, but one of the most special moments was having him come back to WSU for a football game in November of 2011. That whole weekend was amazing. He raised the Coug flag before kickoff, was honored at several different points during the game, and the Cougs (heavy underdogs) ended up beating ASU. Lots of emotions that weekend, but it was unforgettable.

Steve is the perfect choice for the distinction – of having our new Neuroscience Center named after him. He’s a native Spokanite, a WSU graduate, the face of the fight against ALS, and a Congressional Gold Medal recipient. Having Steve’s name forever tied to this will help our new center immensely. Mark my words.

Roman Harper – New Orleans Saints teammate:

Steve has inspired me with his mental toughness and his ability to never give up. It amazes me how funny he remains in the face of the ultimate adversity. He continues to the best father he can be. He has great friends and people that love and care for him. Most people DO NOT have that in life. He does. To me that’s inspirational. Not only that, but he is constantly reaching back and pulling forward. Like – on Capitol Hill fighting for the rights of others that have been stricken by this awful disease and helping make sure they “ability” to live and communicate.

As a teammate, my favorite memory was just learning from him what it took to be a professional. He knew exactly who he was. It was my first impression – a guy in the NFL that has a specific skill set, knows their role through-and-through and was willing to do everything it took for his team. He was what they called a “special teams ace.” In college, I didn’t know that existed.

Steve was also the first person I had ever heard of that was wanting or using alternate forms of waste and grease to make as fuel for his truck. I was like WTF is up with this guy? He’s waaaay out there. Haha! He didn’t seem like the typical football player. His life and lifestyle were always so much more. He read a lot, and he had long hair before every team had a long-haired white guy on its defense. Haha! He was strong, and all his teammates loved and respected him and his work ethic. Steve left it all on the field every Sunday and that is what made him the player/person he is.

Off the field, we had a great time watching the World Cup a few years back at his place. Rivers and my oldest daughter Londyn, rocked out together as we watched. Rivers was on the drums and Londyn sang. It was hilarious, and we had a blast watching USA lose. It was a very special day for me and my family because we actually got to see Steve in his element of daily struggles and happy moments. Michel showed us all her “new weapons” she was buying and getting into at the time. I even used her blow dart in the front yard!

I’d like to take this opportunity to reiterate what Steve means to so many. #NOWHITEFLAGS is legit – the option of giving up is not an option. I’ve seen Steve grow as a movement and as a father. The city of New Orleans loves him, everything he has accomplished and represents. The statue at the Superdome is a memento to him and that block on Monday night to reopen the dome. I was blessed enough to be there. Now, he continues to have an impact through his foundation.

I was in West Virginia at training camp and I saw a man with earlier stages of ALS. All he wanted was a “No White Flags” flag to be put on his wheelchair because Steve Gleason inspired him to never give up. That let me know that people see you, Steve. People that you do not know are always watching.

Steve really has started a movement. His actions speak louder than he could have ever said with words and he is carrying this movement. He is the voice for so many people that do not have his platform. “No White Flags” today is bigger than when we used it as our mantra with the Saints. I’m just proud to say I know Steve. I love the guy and I think he loves me, too. I’ve seen this disease take his body from him but not his humor, his heart, or his mind – and definitely not his will to compete and be the best for not only himself, but for his family and so many others who look up to him for his leadership.

Marc Broussard:

It’s what Steve has done post-football that has amazed me the most. The joy Steve continues to exude is overwhelmingly inspiring. He’s got such an amazing sense of humor and such a beautiful disposition that hanging out with him is always incredible.

As a lifelong Who Dat, just being asked to participate in his Gleason Gras festival was a huge deal for me. It wasn’t until I arrived on site that I fully realized the power Steve has. His tireless passion for advocacy puts all of us on notice. I no longer have an excuse for anything because of Steve.

Steve’s grace in dealing with folks who may not know how to interact with someone in his position, his sense of humor, and most importantly, his heart is what will be with me forever. I’ll never forget the blocked punt, but my favorite memory of hanging with Steve is every moment I’ve ever had the privilege of hanging with Steve. He’s a seriously inspiring human and every second with him is cherished.