“I believe my future is bigger than my past.”
April 5th, 2013. A few minutes before 8 AM on an overcast Friday morning, I turned the lights on in my fourth floor Cambridge office. I had just started a new job and was usually one of the first ones in each day. Traffic was particularly light on Fridays, so I’d often find myself opening up my section of the floor. I’d then have some cherished quiet time to have a cup of coffee, read some news and fire off emails.
As I turned on my computer, I stumbled upon a message from my cousin in Charlotte, NC. Her mother (my aunt/dad’s sister), had passed away overnight from ALS or Amyotrophic Lateral Sclerosis – more commonly known as Lou Gehrig’s Disease – a terminal disease with an average lifespan of two to five years post-diagnosis.
I’ve cheered for the New Orleans Saints as my secondary team (the NY Giants being #1) since they acquired Drew Brees. I’ve always loved how he plays the game; he carries himself with such class and exudes a contagious, positive attitude that naturally uplifts those around him. He’s been an underdog who defied odds through hard work and determination. I’m always a sucker for those types of icons and Brees is on the top of my list in the world of sports. Through the acquisition of Brees, I became familiar with #37.
I recall sitting in my shoebox apartment on the upper east side of Manhattan, watching my blurry 20 inch TV that sat upon a milk crate as #37 (Steve Gleason) blocked a punt against the Atlanta Falcons during their first home game at the New Orleans Superdome since Hurricane Katrina. It’s one of the most famous and storied sports-related moments in the history of New Orleans. So much so, there is now a statue of Gleason outside the Superdome showcasing the same elongated, arms-out position he courageously launched into to block that punt.
Though the statue represents that amazing moment, it’s what Gleason has done off the field since then that makes him a hero to me.
In 2011, Gleason revealed he was battling ALS at the age of 34. Determined to experience his ultimate dream, Gleason learned his wife Michel was pregnant with their first child shortly after being diagnosed. It’s during this time he began making video journals that will ultimately be passed on to his now 4 year old son, Rivers. Looking back, Gleason is struck by how he ends his first video where he says via Sports Illustrated “I do not know where this is going, but I believe with patience and persistence and perseverance that the outcome of the story is going to be a pretty amazing thing and I do believe that in five years I’ll look back on this video and say, ‘Wow, that was the beginning of this journey that has turned out so much for the better in my life.’”
Gleason saw this obstacle that was thrown his way as an opportunity to make a difference. His foundation, Team Gleason, was also formed in 2011 and has since become one of the most acclaimed and productive nonprofit organizations benefiting ALS. Their three main initiatives are: to help provide individuals with neuromuscular diseases or injuries with leading-edge technology, equipment and services, to create a global conversation about ALS to ultimately find solutions and to raise awareness. I have been a proud supporter the past four years.
Music has always played a big role in Gleason’s life. It’s served as an outlet and companion that furthers his optimism. In 2003, Gleason met Mike McCready of Pearl Jam through a mutual friend. Gleason is from Spokane, WA and describes Pearl Jam’s music as the soundtrack to his life. It’s a tribute for which McCready takes much pride: “If our music can make him heal and feel better about his life and give him some sort of comfort, then that’s what doing music is about.” McCready told ESPN’s Chris Connolly.
Through his friendship with McCready, Gleason has formed a bond with all the members of Pearl Jam. In 2013, Gleason was selected by the group to be one of four individuals to interview the band in Seattle as they prepared for the release of their tenth studio album, Lightning Bolt. Showcasing his natural spirit, Gleason opened his line of questioning with some humor: “It’s been five years since Backspacer; that’s the longest stretch between records, what the f@ck?”. The questions that followed were filled with sincerity and passion, striking an emotional chord with the audience, the band and Gleason himself. “They were gaining as much from me as I have from them. It was this mutual respect, or even love.” Gleason told ESPN about the interview experience.
Shortly after the interview session took place, ESPN ran an incredible segment on how Pearl Jam’s music influences Gleason. Since then, Gleason has introduced Pearl Jam at the Voodoo Experience and Jazz Festival in New Orleans, was a guest of the band when they played his hometown of Spokane in 2013 and McCready has appeared at Gleason Gras – a festival Gleason holds each September in New Orleans. The band gave Gleason the honor of helping with their setlists at each show. The result (opening with Sirens, Pendulum and State of Love & Trust, etc.) was some of the most unique sets in the bands 25 year history.
A defining moment came during the Spokane show: Gleason asked frontman Eddie Vedder to perform a rendition of Tom Petty’s “Won’t Back Down.” Vedder obliged, making it the opening song of their first encore. How fitting and appropriate for such a song to be played in Gleason’s backyard by a musician who has provided so much beauty in his life.
“They are people who, in extraordinary circumstances, show how extraordinary humans can be.” Vedder said of Gleason and his family while introducing “Won’t Back Down.”
Staying in the Pacific Northwest, Gleason has also been working with Microsoft the past few years in an effort to improve the technology with which Gleason and other ALS patients communicate. Gleason uses Microsoft tablets that enable him to write and speak using his eyes.
“I type with my eyes. Not only that, I navigate my computer, create and play music, keep a calendar, conference call, lead WebEx meetings, text and, obviously, tweet with my eyes.” Gleason wrote as a guest columnist on Peter King’s MMQB, “I also have automation in my house that allows me to open doors, turn on lights, open blinds, change the thermostat and turn on TVs. I do my best to try to think of myself as super-abled, rather than disabled.”
Gleason was featured in Microsoft’s highly praised 2014 Super Bowl commercial and in August of 2014, was asked to lead a team of hackers at Microsoft. Per the request of Bill Gates, he traveled to Redmond, WA to the Microsoft campus to address several hack teams during their annual company meeting and first-ever hackathon. He worked with hack teams and the Microsoft Accessibilities group to address limitations in eye gaze technology and to help further development of options to driving power chairs. Within one day, Gleason was able to steer a robot and another power chair through his eye gaze and Surface Pro 3 tablet.
In 2015, Gleason pioneered one of the biggest breakthroughs for ALS patients when President Obama signed “The Steve Gleason Act” on July 15th, to assure the availability of life sustaining communication devices. The bill makes critical technology available to patients with ALS and other neurological disorders through Medicare and Medicaid. It includes innovative speech-generating devices like the one Gleason uses to type words through eye movements.
“People, like myself, who are literally voiceless, were heard. Loud and clear,” Gleason said in a statement upon the bill passing. “This legislation may have my name on it, but please know it is the ALS community and the diligent legislators who deserve our applause.”
Just did it!
— Steve Gleason (@TeamGleason) July 15, 2015
The mission statement of Team Gleason is No White Flags. It is one the entire organization embodies with Gleason leading by example. Since its inception, Team Gleason has worked tirelessly to lead efforts in both assisting ALS patients currently in need and spearheading efforts for a brighter future. Throughout the past five years, in addition to successfully launching the Gleason act, the organization has held summits where the world’s leading scientists agreed to actions plans, put on tons of fundraising events (such as Gleason Fest) and opened The Gleason House, which is a residence that allows ALS patients to control their environment – computers, TVs, lights, doors and elevators using just their eyes. This innovative concept allows patients to live independently without financial burden on their families. Additionally, it allows them to be productive and purposeful, to collaborate with peers and colleagues to continue whatever their passion may be.
Along the way, Gleason has continued to live life to the fullest. He’s completed his MBA at Tulane University, driven in a camper from New Orleans to Alaska and back, took a trip to Machu Picchu with good friend and former teammate Scott Fujita, went skydiving, was awarded a Super Bowl ring by the Saints, received a key to the city of New Orleans and has been inducted into the Washington State University Hall of Fame.
Throughout all his recent accomplishments, Gleason has stayed true to his biggest promise and priority: his family. To kickoff 2016, we saw the unveiling of Gleason’s documentary at the Sundace Film Festival; the film was picked up by Amazon and will debut on July 29th. Director Clay Tweel has gone through roughly four years of footage (mostly shot by Gleason himself) to portray an incredibly moving story that highlights Gleason’s courage. It’s a story Drew Brees says “will change lives” as it details Gleason’s incredible journey, truly showcases how inspirational he is and emphasizes his love for his family.
Gleason has already amassed over 400 video diary entries for his son Rivers. They include Gleason taping himself reading stories that he and Rivers watch together.
“That’s what Dad’s do. They pass the best of themselves to their kids.”
Watch the official Gleason trailer here:
In August of 2013, my cousin Chris created an ALS benefit concert in Charlotte, NC in honor of her mother (my Aunt). I was asked to come down and join a few bands on stage. It was one of the more rewarding nights of my life. A few months prior to the event, I contacted Team Gleason to let them know about the benefit show that has now run four years strong. It turns out my Aunt and Uncle had become familiar with Gleason’s story and Team Gleason through research and treatment efforts they partook in. They crossed paths with members of Gleason’s family along the way. For the inaugural event, Team Gleason graciously donated a football that Gleason signed, holding the sharpie in his teeth. My cousin Dan (Chris’ brother) ended up winning the football. He now carries it through every ALS walk he participates in.
No White Flags.
Thank you Steve.
To find a theater showing Gleason visit GleasonTickets.com
To join the movement that is Team Gleason visit TeamGleason.org
For Gleason Fest tickets visit GleasonFest.org
Follow Jeff Gorra on Twitter Here: