Before all the television appearances and fundraisers, before a statue rose at the south end of the building he helped revive, before he threw his influence into fighting the disease that threatens his life, before his blocked punt lifted a franchise and a city, Steve Gleason found himself in a battle.
From the moment he was born, he had to fight his own body.
He did it as a newborn in Spokane, Wash., overcoming a disorder that turned the bottoms of his feet toward each other, requiring care and corrective measures from his parents.
He did it in high school, shaking off a concussion he suffered after a desperate dive in the outfield grass.
He did it while he earned two degrees and played two sports at Washington State, where he captained a team to the Rose Bowl, then later gritted his teeth through knee surgery that kept him off the football field for a mere six days.
He did it during eight years as a giving, fearless and affable special-teams ace with the New Orleans Saints, embracing the city before the city truly knew who he was.
He did it as he dived out of an airplane, post-retirement, happy enough to celebrate the one-year anniversary of his diagnosis.
He did it as amyotrophic lateral sclerosis — commonly known as ALS or Lou Gehrig’s disease — began to strip away almost every basic human function: his ability to talk, to chew, to move his legs, to carry his 21-month-old son, Rivers.
He has done it every day since.
From the moment he was born, one thing was a constant: Steve Gleason enjoyed life.
He met the challenge. And he moved on.
Man of many moments
Seven years have passed since that emotional night inside the Superdome, when Gleason provided the signature moment of the Saints’ post-Katrina return.
Everyone seems to remember where he or she was for that moment when, only 13 months after the hurricane flooded New Orleans with water and despair, Gleason charged through a giant gap in the Atlanta Falcons’ punt protection, dived forward and deflected the ball off Michael Koenen’s foot, leading to the first touchdown of a 23-3 rout.
Two years have passed since doctors at three institutions diagnosed Gleason with ALS, the vicious, fatal disease that affects communication from the brain to the muscles. It ultimately robs the patient of virtually all of his strength. It places an incredible burden on loved ones like Gleason’s family, including his New Orleans-born wife, Michel.
The blocked punt and diagnosis are landmark moments in Gleason’s life. But they are only two snippets of a far-reaching, complex, inspiring life.
Those moments are big parts of the picture, but not the only parts.
Revisiting the narrative
In the years since that blocked punt, a well-meaning but slightly inaccurate description of Gleason has emerged: that he was an undersized, undervalued football player who got by on his grit, not his athletic skills.
Undersized? OK, maybe that one is true. He was listed at 5-foot-11 and 212 pounds — numbers that were probably generous. Outside of his uniform, he could’ve passed for a random Pearl Jam fan at Jazz Fest.
But undervalued? Gleason? Not a chance. Not to his teammates. The eight-year veteran, almost always on the fringe, was universally loved. And he loved them back.
“He didn’t have a selfish bone in him. He was always about the team first and his stats, his success later,” said safety Roman Harper, a rookie on that inspirational ’06 team. “I learned a lot under Steve ... when he was first here with me, and just the way he competed, the way he took his job seriously. ... He was all about everything, a sweet guy who was always about team first.”
And that part about him having limited athletic skills? Completely false.
“The idea or the story that he was just an average athlete — that’s total (expletive),” younger brother Kyle Gleason said. “He was always exceptional.”
It certainly seemed that way.
The son of Gail Gleason, a lifelong educator, and Mike Gleason, a real-estate broker, Steve had the athlete’s gene. He was adventurous, but in a studious sort of way.
As a kid, he spent time watching the older boys in the neighborhood ride their bikes, snowboard or ski. Only after he studied the boys and figured it out, Gail said, did he want to try his hand.
Both parents had athletic backgrounds, and Gleason’s maternal grandmother was an accomplished swimmer. Whenever they visited her house in Redwood City, Calif., his grandmother put him in the pool — even as early as four months old. They had a whole workout routine.
When Kyle, four years younger, was born, Gleason stood by his crib. He couldn’t wait for him to grow up so the two could play together. He took Kyle everywhere.
Naturally muscular, Gleason tried almost everything. Spokane was a great place for outdoor living, and he made the most of it, exploring mountains and rivers and virtually anything green.
He loved sports, too.
He easily picked them up. Easily dropped them, too.
“He would try something and master it. Then, if it didn’t hold his interest, he’d put it down,” Gail said. “The gymnastics teacher thought he could go to the Olympics, but he wasn’t interested.”
That Gleason became such an accomplished athlete was a stroke of good fortune. He was born with metatarsus adductus, a foot deformity that’s believed to result from a baby’s positioning inside the mother’s womb.
In Gleason’s case, the tendons on the outsides of his feet were longer than those on the insides. The soles of his feet pointed toward each other instead of down.
So, every time Gail changed his diaper, she stretched the tendons. Steve’s baby shoes had to be tight (most babies wear loose shoes, to allow for growth) and, for a time, he wore them on the opposite feet — left shoe on the right foot, right shoe on the left foot — to help correct the problem.
Years later, Gleason’s feet grew three sizes one summer. It happened just before he hit eighth grade, and it forced him to choose baseball over his favorite sport, soccer. At 13, he was one of the best players in Washington.
The time off led him toward a new sport. At the urging of his friends, he first tried football at 14. In football, he constantly found new challenges.
He was a superstar linebacker at Gonzaga Prep and one of the best athletes in Spokane, a picturesque city that produced basketball Hall of Famer John Stockton, baseball Hall of Famer Ryne Sandberg and former Super Bowl MVP Mark Rypien.
Despite his small frame, Gleason had an incredible knack for shutting off his fear switch.
“I can still remember my first practice in eighth grade, when we started the hitting drills,” Gleason said in 2002. “I was like, man, this is the best thing ever. The hitting was one of my main motivations to start playing.”
People noticed him. Well, a few people. Though Gleason had the grades to play at a school like Stanford, then-coach Tyrone Willingham declined to offer a scholarship, saying he thought Gleason lacked the necessary intensity. In this case, he could not have been more wrong.
Bill Doba, then defensive coordinator at Washington State, made it a point to judge athletes on whether they made plays, not whether they looked the part.
Gleason just kept making plays.
“When he made a hit,” Doba said, “it looked like the running back stepped on a landmine.”
A three-year starter, Gleason finished with 188 solo tackles, ranking seventh all-time at WSU.
As a sophomore in 1997, with the help of quarterback Ryan Leaf and future Saints tackle Scott Sanderson, Gleason led the Cougars to their first Rose Bowl in 67 years; they lost to Michigan.
The next year was not as easy — for WSU or for Gleason. Late in the ’98 season, he learned he needed arthroscopic knee surgery — a common procedure for football players, but one that usually requires at least a few weeks of recovery time. It’s the same type of surgery that kept Saints linebacker Jonathan Vilma out of action this entire preseason.
Gleason had the surgery on a Sunday. He was on the field six days later.
“That was on a team that was 2-6 at the time,” Doba said. “Let me put it this way: He’s the toughest kid I’ve ever coached — bar none.”
One other thing: In the springtime, Gleason played center field for the baseball team. He remains second on the school’s all-time list in career triples.
He was off to the pros. Barely. Before he latched on with the Saints, he signed as a rookie free agent with Indianapolis.
But as he blossomed into a team captain and special-teams stalwart, Gleason continued to find other pursuits.
In 2004, after Gleason’s fourth season with the Saints, a buddy from Seattle came down for Jazz Fest. He asked that Steve meet a mutual friend, Michel Varisco.
Neither was very excited to meet the other.
He had prejudged her to be a Deep South debutante. She had prejudged him to be a hulking half-wit jock.
They were both very wrong.
When they met, Michel looked at this short-haired, smallish guy with a mischievous grin, and she backpedaled.
“Because I have no verbal filter, I said, ‘Wait, you’re Steve? You’re a lot cuter than I thought you’d be,’ ” Michel recalled.
Steve’s reply: “Um, thanks?”
“We spent the day together and, after the fest, he jumped in the dark, mysterious waters of Bayou St. John with my brothers and friends at the annual Jazz Fest Triathlon,” Michel said. “I liked him.”
From that day, they were good friends — until he asked her to take a road trip back home to Spokane with him in January, after the season.
“Then I pleaded with him that we should try kissing,” she said. “We’ve been together ever since.”
They were a good match, in large part because Steve was just so different from anyone she’d ever met.
When Michel first visited his place in New Orleans, she was more than a little surprised. Gleason, by then an NFL veteran, was living in a one-bedroom Uptown apartment. It had no TV. It was packed with books, guitars, yoga mats and, as she put it, “weird healthy foods I’ve never heard of.”
At the time, he was reading about windmills. So, no, he did not fit the stereotype of the modern athlete.
Then again, he never did.
Gleason never wanted to be known as just an athlete. He never was.
Charity begins at home
Long before his famous punt block, long before his ALS diagnosis, long before he and Michel dreamed up a foundation called Team Gleason, he had a way of drawing people into his life, befriending them, inspiring them.
His parents divorced in high school — an undeniably painful event for him and Kyle. Shortly thereafter, Gleason befriended a kid named Jim Salters — another child of divorce, a Gonzaga Prep teammate from Pullman who was living some 75 miles away from home.
Gleason asked his mother if Salters could move in. He did. Salters now serves on the Team Gleason board of directors.
Gleason was an honor student in high school, a member of the physics club. He wrote poetry. He submerged himself in rock music.
He was a three-time member of the Pac-10 all-academic team. He double-majored in management information systems and entrepreneurship. He later earned his MBA from Tulane.
Sure, he devoted plenty of time and effort to his job with the Saints, but he occupied himself with other stuff. Lots of it.
He grew his hair long, then had it cut and donated to Locks of Love, the nonprofit that creates hairpieces for kids who have lost their own.
In 2003, he created One Sweet World, a foundation that focused on literacy and environmentalism.
In Katrina’s aftermath, as he toiled with the nomadic Saints and the city tried to recover, One Sweet World launched “Backpacks for Hope,” a drive that sent backpacks, school supplies and stuffed animals to youngsters.
The final tally: More than 7,000 backpacks delivered.
Then there were the adventures.
Oh, the adventures.
In 2001 — after the Saints signed Gleason, played him and cut him — coach Jim Haslett called back, essentially saying the team made a mistake and, hey, could he get on a plane and rejoin the team?
Gleason’s response went like this: “I’m supposed to meet my brother to go surfing in Indonesia. Can I come back after that?”
Gleason’s thrillseeker gene is legendary. In 2002, he told the Houma Courier that, after his career, he wanted to sail around the world.
He has indeed been to so many exotic spots. He just didn’t get there on a boat.
He was largely egged on by Kyle who, at 19, moved to South America and learned how to surf.
“I came back and told him how awesome it was,” Kyle said. “So after his rookie year, he went to the Galapagos Islands.”
The party had begun.
Steve got a break of sorts in ’01 when the Saints sent him to NFL Europe. There, he and his brother found new territory, new adventures.
In later years, his well-chronicled trips included Ecuador, Chile, Argentina, Easter Island, New Zealand, Alaska, Turkey and Indonesia, among other spots. Some travels were with Kyle, some were with Michel, many were with both.
Later, when they formed Team Gleason, they sent (and accompanied) ALS patients on faraway trips, with a whole entourage in tow.
That’s where ex-teammate Scott Fujita was — amid the rugged peaks at Machu Picchu, with Team Gleason and other ALS patients — when he announced his retirement as a Saint this spring.
Fujita called the trip the hardest thing he’s ever done.
“What separates this adventure from the rest is that you literally held someone else’s life in your hands,” Fujita said. “Any minor slip-up, and there could have been a disaster. My wife thinks we were (bleeping) nuts. She’s probably right. Well, at least she’s right about Steve.”
As for Kyle, his favorite experience was getting to hug Mata “Amma” Amritanandamayi, who has personally embraced more than 32 million people worldwide. Her nickname is “The Hugging Saint.”
In 2008, after Steve and Michel got married on the Magnolia Bridge, they went on a six-month honeymoon to Greece, Nepal, Thailand and Australia, never taking much more than a small backpack.
Steve retired from pro football that year and moved on to the next phase.
It looked easy. It wasn’t.
Gleason landed a job as an executive with the Shaw Group in Baton Rouge — a primo gig with a Fortune 500 company, one that seemed to fit his entrepreneurship studies at WSU.
As a fringe NFL player, he knew football wouldn’t last forever, and he prepared for it.
“He did well for having literally no experience in the ‘real job’ world,” Michel said.
Still, he struggled.
He told his brother he had never been more stressed. He woke up in the middle of the night with anxiety attacks.
This was a toughie: Steve Gleason, adrenaline junkie, had to go to the office, day after day, 50 weeks per year.
There was no rush from the sound of 75,000 fans in the Superdome. He had fed off that, been defined by it. None other than Drew Brees called his blocked punt the most significant play in Saints history.
“There was definitely a moment, after Steve retired and before he got sick, where he really struggled with his identity,” Kyle said.
Two years later, for better or worse, he found it. Knee deep into yet another new hobby — cycling — he noticed that one of his feet started to drag.
Slowly, other ALS symptoms started to emerge. He couldn’t do a pull-up. His shoulders twitched. He couldn’t lift some fingers or toes. He staggered a little.
As he visited doctors, one by one, a parade of tests eliminated all the other possibilities.
On Jan. 4, 2011, on the night before his diagnosis in San Francisco, he broke down in tears.
On diagnosis day, his mom and wife did the same. Still, in typical Gleason fashion, he rebounded.
The Gleasons watched as a doctor drew a bell curve. One end represented those who die quickly, in less than two years. The middle represented the typical patients who have 2½ to five years.
The other end represented those who live longest.
Steve pointed to that end and said: “What did these people do? I want to know what they did.”
The Gleasons soon learned that as many as 30,000 Americans have the disease at any given time, according to a report from the ALS Association.
They soon learned that ALS is most often diagnosed in white men between ages 40 and 70. Gleason was 34; Gehrig was 35.
They soon learned that the disease affects communication between the brain and muscles, which gradually weaken. The most common cause of death is suffocation because the chest muscles no longer function properly.
They soon learned that most Americans don’t know the most basic facts of the disease. Since it’s so much rarer than, say, cancer, research funding pales in comparison. So, too, does development of pharmaceuticals, treatment and technology that can increase patients’ quality of life.
Gail, who now works as a tutor in the Washington State athletic department, sees scores of athletes who know about Steve’s story, that he has Lou Gehrig’s disease and that it killed Lou Gehrig.
Yet many of them still ask: How’s Steve? Is he getting better?
“You have to tell them that, no, he’s not going to get better,” she said. “That reality is shocking to people.”
In 2010, a Boston University study asserted a link between ALS and athletes’ repetitive head trauma. Critics contended that the study is inconclusive, if only because it sampled just three athletes — two ex-football players and an ex-boxer.
At any rate, virtually everyone has started to agree on one thing: Repetitive trauma isn’t good for the brain — particularly in kids.
“It’s a complex problem with complex solutions. We aren’t really sure what works,” said Chris Nowinski, founding executive director of the Sports Legacy Institute at BU. “But we have to rethink at what age we subject kids to repetitive brain trauma. ... (Sports) are terrific, and children should be involved. But the negative consequences shouldn’t change your life.”
Gleason’s first concussion came in high school, when he dived for a deep fly ball in center field. He had two concussions in the NFL, plus hundreds of other collisions in practice and games.
For his part, Gleason said he isn’t sure whether football caused his ALS. He also noted that if he had never played football, he would’ve never moved to New Orleans, never met Michel, never had their son, Rivers.
The Gleasons learned that some patients digest the gravity of their ALS diagnosis, hear the word “terminal” and understand the incredible toll it takes on a family. And they give up.
Gail heard about a doctor who was diagnosed and, because of his background, knew what it meant. He chose to spare his family as much pain as possible. He was gone within a year.
What, then, about Gleason?
Give up? Are you kidding?
In a small, weird way, ALS has been something of a blessing for Steve.
At Shaw, he was always stressed. Post-football and pre-Rivers, he was lost. Once he came to terms with his diagnosis, things snapped into focus.
He told his brother: “Now I know what I’m supposed to do.”
About a month after he went public with his diagnosis, Michel gave birth to their son. Rivers’ name is a nod to Steve’s love for the outdoors. Michel conceived via in vitro fertilization.
Between fighting the disease and living for Rivers, Steve has a purpose now.
Virtually everyone in Louisiana has heard of Team Gleason, the foundation that, as Steve puts it, “is deeply committed to helping people with ALS live productive, inspired lives by providing access to life-affirming events and assistive technology until a cure is found.”
(You can read more about Team Gleason on Page 20.)
They work with companies to reduce costs for technological devices. In Mid-City, they will soon open the Team Gleason House for Innovative Living, a residential facility designed to help ALS patients live more independently.
They donate items and emails for fundraisers. They communicate with other patients and their loved ones, every single day.
A personal favorite email of Michel’s came after they gave an eye-technology communication device to a man who is no longer able to speak — much like the device Steve uses now.
The email, written by the man’s sister, reads:
Dear Team Gleason,
Simply put: the availability of this state of the art technology has given my 44 year old big brother matthew back his will to live.
For this, my family cannot thank you enough.
“His gift to the city subsequent to his football career has dwarfed his contribution on the field, as spectacular as that was,” Mayor Mitch Landrieu said. “Steve’s life is the most important contribution he’s made, the way he’s handled his illness, his grace and courage. To use it to find a cure. That guy is magical.”
The spirit of Steve
Make no mistake: ALS is no fun. It is flat-out mean. “I hate it,” Gail said, emotion rising in her voice. “I hate it.”
In late 2011, when the Saints honored Gleason at a game in the Superdome, he walked to midfield with a little help from Brees and Will Smith.
Less than a year later, when he appeared for a game against the Chargers, he was confined to a motorized wheelchair.
He has lost the ability to speak, an experience that left Michel heartbroken.
When Steve announced the Saints’ third-round draft pick in New York in April, fans got a good look at how he gets around now. He has a tablet computer attached to his wheelchair. Tiny cameras track his eye movement, which he uses to command everything — how to move, what to type, how to manage his apps, how to “speak” with his electronic voice.
(Yes, after he announced Terron Armstead as the Saints’ pick, two Atlanta radio hosts put on a tasteless skit, mocking Gleason’s speech and limitations. His response was vintage Gleason: “We have all made mistakes in this life. How we learn from our mistakes is the measure of who we are.”)
Yes, the disease is incredibly mean. The changes in Gleason have been quick, drastic and heartbreaking.
Once, he went to the doctor’s office for muscle stimulation. After he took off his shirt, Steve’s mother saw the muscles on his back. They looked like long waves of grass, swaying in the breeze.
About a year after the diagnosis, Doba visited the Gleasons in Coeur d’Alene, Idaho, where they live during the summer.
“I couldn’t believe how far down he’d gotten in such a short time,” Doba said.
His former player — once a fearless linebacker who got every ounce of production out of his smallish body — was in a wheelchair, a feeding tube running into his nostrils.
If Doba wasn’t scared for his guy, he was surely upset. Then Gleason opened his mouth.
“Hey, coach,” he said. “How’s your daughter?”
“The guy’s in a wheelchair, fighting for his life, and he’s asking about my family,” Doba said. “I couldn’t believe it.”
After a game in 2011, Smith reflected on the journey of his former teammate and captain.
“You wonder, ‘Why that guy?’ ” he said. “Out of all the people, why that guy?’’
On the other hand, his friends and family sometimes wonder: If anyone has to get stuck with this thing, maybe he’s the right guy for the job.
He draws people in, inspires them, makes them want to achieve things — for Team Gleason, for him and for themselves.
In that way, maybe he’s a little like Amma, the Hugging Saint.
“Steve and Michel took us in and really introduced us to New Orleans, which is and always will be our adopted home,” Fujita said. “They helped make our time in New Orleans much bigger than just football, and I’ll always be grateful for that. You ask why I want to fight for Steve now? Because I love him. And because he’d do the same for me.”
It’s ironic and cruel, but true: Just as he did 36 years ago, when he overcame a disorder that kept him from walking, Gleason now needs someone to bathe him, feed him, carry him, understand his communication.
Again, he can’t walk.
Again, he’s fighting his own body. This time, the stakes are so much higher.
Somehow, he finds ways to keep fighting.
“His body has been completely stripped away,” Kyle Gleason said. “Suddenly, what’s left of my brother is the spirit of Steve Gleason. It’s the spirit of Steve Gleason that everyone loves.”
And with that spirit, Steve Gleason keeps moving.