Steve Gleason battling ALS
New Orleans Saints cult hero Steve Gleason battling ALS
Jeff Duncan, The Times-Picayune
Posted: 09/25/2011 8:08 AM
Today is the five-year anniversary of the highlight of Steve Gleason’s football career — his epic blocked punt against the Atlanta Falcons in the official reopening of the post-Katrina Superdome. It was a seminal moment in his life, the exclamation point to an inspirational eight-year career that saw him rise from relative obscurity to cult hero status in the city he would eventually call home.
The New Orleans Saints invited him to serve as a ceremonial team captain for today’s game against the Houston Texans at the Superdome. He’ll handle the coin toss and initiate the ceremonial Who Dat chant before kickoff.
He’ll undoubtedly receive a thunderous ovation from the sellout crowd of 73,000 but many fans won’t understand why Gleason is moving so slowly on the field.
Gleason has been diagnosed with amyotrophic lateral sclerosis, or ALS, a rare terminal disease that damages the nerves that control voluntary muscle movement.
ALS, commonly known as Lou Gehrig’s disease, is a devastatingly cruel disease. Gradually, motor neurons shut down. As they do, muscles atrophy. Although Gleason’s brain remains sharp, he is steadily losing his ability to walk, talk and swallow. The powerful legs he once used to race downfield on kickoffs are now withering and unstable. The arms he famously extended to block Michael Koenen’s punt are weak and frail.
Although he disclosed his condition to friends and family after his diagnosis in January, he decided for personal reasons not to go public until now. He believes that through his newly formed Team Gleason organization he’ll be able to inspire just as many, if not more, people than he did on the football field. He sees his condition not as a death sentence but as yet another adventure in life.
“It’s easy to start questioning whether God has this plan and why the plan would include me getting diagnosed with this disease,” Gleason said. “And that’s when you can start why-ing yourself to death. More than that, I’ve thought, what does this mean, how does this help me fulfill my purpose in life? If we have a purpose in life beyond being a cog in the human machine, mine is to help inspire people and that’s pretty cool. I would like to motivate the world.”
No one who knows Gleason doubts his ability to do just that.
Guts and grace
Undersized and relatively slow of foot, Gleason excelled on guts and guile in a sport of goliaths and gazelles.
Football earned him a four-year scholarship to Washington State and a lucrative living in the NFL.
Sean Gardner/The Times-Picayune archiveHairstylist William Edge cuts Steve Gleason’s hair in 2003 so the Saints special teams member could donate it to Locks of Love. Gleason had grown his locks long for the sake of the charity.
Gleason started only one game for the Saints, but he made his mark on special teams. He blocked four punts and annually ranked among the team leaders in tackles on punts and kickoffs. Just as he had in high school and college, he became a team captain.
“From the very first minute I got to know him, he had that kind of aura around him,” said Jim Salters, a former teammate of Gleason’s.
His fearless play and free-spirited personality captured the fancy of the team’s eclectic and loyal fans. He became the ultimate counterculture hero in a counterculture town.
He grew his hair long to support the Locks of Love charity.
He bought a diesel pickup truck and launched a recycling program at the Saints’ practice facility.
His fashion sense tended toward T-shirts and flip-flops, except on chartered team flights when he leaned toward bow ties and seersucker.
He wrote poetry, played the guitar and studied Eastern philosophy.
While his teammates lived in suburban enclaves, he rented a one-bedroom apartment in the heart of Uptown.
While they lifted weights in the offseason conditioning program, he would retreat to the indoor practice facility for a solo yoga routine.
“Steve always marched to the beat of his own drum,” former Saints linebacker Scott Fujita said.
Yet, Gleason quickly figured out that football would never satisfy his intellectual curiosity. What it did do was provide an outlet to channel his adrenaline addiction and a lifestyle to explore the world. Every offseason was a different adventure, often with his younger brother, Kyle, at his side. He surfed in Nicaragua, hiked the Andes and free-dived in the Galapagos Islands.
Eliot Kamenitz/The Times-PicayuneSteve Gleason and his wife, Michel Varisco, walk Monday on the Magnolia Bridge near their Faubourg St. John home. The couple’s first post-diagnosis decision was a major one: Michel became pregnant in February. ‘There was no hesitation â none,’ she said.
“Football was something he did; it’s not who he was,” said Tulane Athletic Director Rick Dickson, whose relationship with Gleason dates to his tenure as athletic director at Washington State from 1994 to 2000. “There are just so many levels to Steve Gleason. He always had that indomitable spirit to him that said, ‘You know what, world, I haven’t seen all of you yet, but I will.’ ”
Gleason was eager for more adventure when he retired from the NFL in 2008. He married local girl Michel Varisco in May of that year and the couple chose to make New Orleans their home after an epic six-month honeymoon to Greece, Nepal, Indonesia, Thailand and Australia.
The couple immersed themselves in the local culture. Gleason embraced the city’s thriving arts scene and famed joie de vivre. He landed an executive job with the Shaw Group in Baton Rouge, moonlighted as a weekend Saints analyst for local TV and was two-thirds of the way toward his degree in Tulane’s executive MBA program. He and Michel had plans to start a family.
This is where Gleason was in life late last summer when he started to notice an odd twitching in the muscles of his upper arm and chest.
Another puzzling sign reared its head during a Labor Day weekend vacation to Point Clear, Ala. While clowning around with brothers-in-law Paul and Vinnie, he struggled to complete three pull-ups on a low-hanging tree branch.
He chalked up the weakness to a 35-mile charity bike ride he’d taken that morning and went on with life. But as the twitches increased, he sought medical help. He took a leave of absence from Shaw, withdrew from classes at Tulane and crisscrossed the country to take a battery of medical tests.
“My doctor told me it could be a wide spectrum of things, with the worst-case scenario being ALS,” Gleason said.
Tests gradually eliminated molecular and mechanical causes. One by one, dozens of pathological conditions were dismissed.
By this time, Gleason was starting to have trouble lifting his fingers and toes, one of the most common early symptoms of ALS.
In early January, he traveled to San Francisco for a diagnosis by Dr. Robert Miller, the medical director of the Forbes Norris ALS/MDA Research Center, at California Pacific Medical Center.
On the eve of his appointment, the gravity of the situation finally confronted him. In their room at the Panama Hotel, he curled up in Michel’s lap and wept.
“I don’t want to have this,” he said. “I don’t want this to be that. I don’t want to have a death sentence. I don’t want to die yet.”
Cause, cure elusive
ALS attacks the nerves in the brain and spinal cord. The motor neurons that transmit impulses between the brain and muscles slowly wither and die. No one knows the cause. There is no cure.
Ninety percent of people stricken with ALS have no family history of the disease. It strikes one to three people out of every 100,000. Approximately 14 new cases are diagnosed daily.
According to the ALS Association, as many as 30,000 people in the United States currently have ALS, which primarily strikes 40- to 70-year-old men. Gleason is 34. New York Yankees slugger Lou Gehrig was its first prominent victim, dying at age 37 just two years after his 1939 diagnosis.
ALS eventually shuts down the muscles of the chest wall and diaphragm. Suffocation and pneumonia are the most common causes of death.
Survival can also be extended, in some cases indefinitely, if a patient chooses mechanical ventilation intervention. Notably, British physicist Stephen Hawking has lived for decades with a motor neuron disease related to ALS, but he is an outlier. Most patients live only two to five years after diagnosis.
Eventually most people with ALS are not able to stand or walk, use their hands or arms, or communicate. In later stages of the disease, individuals struggle to breathe, as the muscles of the respiratory system weaken.
“It is unbelievable how devastating this disease can be to patients and their families,” said Steve Perrin, the CEO and chief scientific officer of ALS Therapy Development Institute. “This is one of the nastiest diseases there is.”
ALS affects each person differently. The rate of progression and areas of the body affected vary from case to case. In Gleason’s case, the disease has attacked the muscles on his right side first.
The disease doesn’t affect the parts of the brain that control thought or memory. Eye and bladder muscles, along with sexual function and drive, are rarely affected. It does not affect the function of any organs, including the heart, or impair the nerves that carry sensation. Gleason can still feel the pain of a good yoga stretch or the cold water when he swims in his in-laws’ pool.
Athletics, ALS are linked
Six months before Gleason’s diagnosis a team of researchers from Boston University reported a link between an ALS-type disease and the repetitive head trauma suffered by some athletes.
Some peers say the study’s sample size — two former football players and a former boxer — is insufficient to draw accurate conclusions, but evidence shows ALS strikes athletes in far greater numbers than the general population.
Scott Threlkeld/The Times-Picayune archiveSteve Gleason, center, and Colby Bockwoldt and chase down the Dallas Cowboys Skylar Green on a second-quarter punt return in August 2006. The powerful legs Gleason once used to race downfield on kickoffs have now become withering and unstable with the ALS.
A 2005 paper found that Italian professional soccer players had developed the disease at rates about six times higher than normal.
The disease strikes about two in 100,000 people, which means only two or three NFL players since 1970 should have been afflicted. BU researchers identified 14 former NFL players since 1960 as having been diagnosed with ALS, a total about eight times more than what would be expected among U.S. men of similar ages. Perrin said his research shows Gleason would be the 27th former NFL player identified with the disease.
Most experts believe brain trauma is not solely responsible for diseases like ALS or chronic traumatic encephalopathy, commonly known as CTE. Those afflicted probably have genetic factors leading to susceptibility, with concussions serving as a catalyst.
“You have people in both camps,” Gleason said. “But it’s getting harder and harder to say that there are no repercussions from head trauma in the NFL or in football. You can’t say that anymore.”
Last October, the NFL added ALS to the “88 Plan,” a medical plan named for Hall of Famer John Mackey that sets aside $50,000 to $88,000 for medical expenses for former players suffering from dementia or Alzheimer’s disease. Players with ALS and other traumatic brain injuries are also eligible for full disability benefits under new provisions in the league’s collective-bargaining agreement, which was ratified in August.
“We still have so far to go,” said Fujita, who along with Sean Morey led the NFL players union’s push for improved disability benefits for current and former players in the new CBA. “But the fact that the conversation is being had is a huge step in the right direction.”
Gleason made his living as a kamikaze hitter. His special teams role put him at risk to the game’s most violent collisions, including one in 2004 that bruised his left lung and caused him to cough up several mouthfuls of blood on the sideline.
He said he suffered two concussions in his NFL career. In both cases, he was temporarily knocked out and did not return to the game. He doesn’t recall any concussions in college or high school but said the number of times he was “dinged” or had his “bell rung” in his playing career was countless.
“I have questioned sometimes, man, was this caused by the NFL?” Gleason said. “And the thing is, we just don’t know. Nobody knows.
“In the end for me, it doesn’t matter. What does matter is that we learn from this. We learn about ourselves. We learn to live the life that we love, no matter what your circumstances are, no matter what hand that you’ve been dealt. It’s important that we learn to share our love with one another. And it’s important to learn how to cure this disease.”
Life doesn’t stop
Dr. Miller delivered the bad news to Gleason on Jan. 5.
Gleason suspected the diagnosis was coming. Still he was incredulous.
Gleason familyDuring a 2011 trip that stretched from Alaska to Argentina, Steven Gleason catches a sockeye salmon in the Kenai River outside Hope, Alaska. The salmon is so big he need help from fishing guide Jason Skaaren to hold it. ‘I’m not going to say it was a miracle, but his (casting) range was 8 feet and he somehow caught this giant salmon,’ said his brother, Kyle Gleason. ‘It was a gift from Alaska.’
How could he have ALS? He seemingly had done everything right in life. He religiously practiced yoga and obsessed over his diet. He’d lived his life as a prayer, helping and inspiring as many people as he could along the way. Now this?
“I thought maybe you’re so addicted to overcoming fear (in life) that you popped this on yourself — the ultimate fear joke,” Gleason said.
In an email to his inner circle a day later, he admitted his emotions were running the gamut from depression and fear to anger and frustration. Yet, he promised “to fight and believe and expect the extraordinary and smile and laugh and cry and love our lives for every breath that remains in my body.”
Gleason returned to New Orleans and set about fulfilling that promise.
His first post-diagnosis decision was a major one. After two years of trying, Steve and Michel elected to try in-vitro fertilization. To their delight, Michel became pregnant in February.
“There was no hesitation — none,” Michel said. “I know that I wanted him to be the father of my kids, no matter what would happen. And if, God forbid, I leave Steve, it will be something selfishly that he created that I will always have.”
More motivated than ever to beat the odds, Gleason began exploring alternative healing methods. He visited a Chinese Wu Tang monk, a Russian massage therapist, a Christian faith healer and a Native American medicine man, who treated Gleason to a ceremonial sauna in his backyard sweat lodge. He even talked to Dr. Daniel Amen of “Oprah Winfrey Show” fame.
During the course of his exploration, a comment from the child of an ALS victim resonated with him.
“My father spent four years chasing his tail trying to find a cure,” Gleason recalled the child saying. “But he didn’t wake up and watch the sunrise.”
Gleason re-enrolled at Tulane and completed his MBA coursework.
“I knew he would; there was no reason not to,” said Kyle Brechtel, 30, one of the Tulane classmates who have become some of Gleason’s closest friends. “He’s a brilliant, incredibly smart guy.”
Gleason began compiling a library of first-person video journals for his child. He and filmmaker Sean Pamphilon, who produced the ESPN documentary “Run, Ricky, Run,” started recording a chronicle of his life. And he and Michel hatched a plan to take a cross-country trip to the West Coast, Alaska and Canada.
The trip was classic Gleason. The odyssey would be similar to their honeymoon to the Far East except this time, instead of yurts and hostels, they’d be traveling and sleeping in a customized 4-wheel-drive van dubbed “The Iron Horse” in a nod to Lou Gehrig. It was the ultimate off-road camping machine, equipped with a sink, microwave, refrigerator, exterior shower and ventilated pop-up top. “The perfect vehicle,” Gleason gushed.
As they did in 2008, they chronicled every stop in an online blog called “The Shunpike Experiment,” in honor of Harry Potter wizard Stanley Shunpike.
Ted Jackson/The Times-Picayune archiveSteve Gleason watches Topher Mira cook up a batch of biodiesel in 2007 at New Orleans Biodiesel Initiative, a backyard refinery that turns restaurant cooking oil into fuel.
The three-month sojourn wasn’t easy for either Steve or Michel, but the couple knew this would be their final chance at adventure before the baby arrived.
Even by Gleason’s standards of high adventure, the trip was a rousing success. Backstage passes to a Foo Fighters show at the Sasquatch Music Festival. A helicopter ride to the peak of Mount McKinley, where the clouds cleared miraculously just as they reached the summit. Grizzly bears clawing salmon out of the Katmai River. A two-week sidetrack to Argentina, Uruguay and Costa Rica to complete Gleason’s Tulane MBA program. And the highlight: Steve pulling a keeper rainbow trout and 17-pound sockeye salmon from the Kenai River in Alaska.
“I’m not going to say it was a miracle, but his (casting) range was 8 feet and he somehow caught this giant salmon,” said Kyle Gleason, who organized the excursion. “It was a gift from Alaska.”
The 14,000-mile trek ended in equally epic fashion at Pearl Jam’s 20th anniversary show in East Troy, Wis., where Mike McCready invited him on stage to play tambourine during the encore.
The trip taxed the Gleasons physically and mentally. But both deemed it an overwhelming success.
“It doesn’t surprise me,” Salters said. “The alternative is somehow to pull back or retreat or play it safe or give up. If anything they’ve done the opposite. They’re saying, we’re going to live this life the best way we know how as long as we’ve got it. None of us knows what’s going to happen tomorrow or the next day. We’re just going to go for it, take risks and not worry about what people think. That’s Steve and Michel.”
‘I want to be the hero’
Before Gleason embarked on his trip in May, his declining physical condition was largely unnoticeable to outsiders. But each day he could feel it closing in.
He’d long ago abandoned running and yoga. But on the trip, he started to struggle with basic physical movements. He ceded driving duties to family and friends. Hikes became difficult without a walking stick.
His condition has worsened since his return to town two weeks ago. Physical activities he once accomplished with ease are now difficult or impossible.
He walks with a staggered limp and needs help to eat, dress and bathe. The muscles of the soft palate have weakened, making his speech thick and swallowing difficult.
He and his family have gone from lamenting the things he can no longer do to cherishing the things he can. And they have learned to adapt: large spoons for meals; straws for drinks; an electric toothbrush for dental hygiene.
His biggest fear is he won’t have the upper body strength to hold his newborn baby next month.
“Every day, every moment I have to re-assess what has been lost, acknowledge that I’m afraid to lose more and keep on going,” Gleason said.
Michel has left her job as a manager at Juan’s Flying Burrito to focus on the myriad tasks at hand. She fills her days applying for a handicapped license tag, filing disability paperwork, researching medical equipment and technology, studying handicapped building design or potential activities for paralyzed athletes. Her due date is Oct. 28.
“It’s important for me to spend all my time with Steve,” she said. “It could be that it would feel like a burden, but it’s not. It’s so cool that I love him, and it’s like this is what we do. We have to make some changes, but I’m happy doing it.”
Faithfully by his side every step of the way, Michel seamlessly switches hats from wise-cracker and cheerleader to caretaker and confidante.
And throughout, both she and Steve have maintained their trademark wit and irony. They laughed hysterically the other night when Steve tangled himself while trying to remove his T-shirt. Jokes about Michel having to soon “clean two butts” are common.
“They really, truly are meant to be with each other,” mother-in-law Jill Varisco said. “It’s beautiful.”
Gleason is doing everything he can to slow the process. He takes Rilutek, the only FDA-approved drug available to prolong some patients’ lives. He’s also enrolled in a clinical trial for Dexpramipexole at the Forbes Norris MDA/ALS Research Institute in San Francisco. He regularly dips in the his neighbor’s or in-laws’ pool to work his muscles and revitalize his nerves.
While he continues to try to heal, the pragmatic side of him understands he could be in a wheelchair and on a ventilator in the future. He realizes he might never have a normal conversation with his child.
“It’s hard to see your older brother, who’s kind of been a rock in your life, a super hero to you, it’s hard to see him vulnerable,” Kyle Gleason said. “ALS makes you more than vulnerable. It makes you pathetic.”
Learning to accept pity and sympathy is one of the most difficult challenges for ALS patients, experts say. It’s even harder for someone wired like Gleason. Not long ago he was on the other side, visiting terminal patients at Children’s Hospital for the Saints.
Now he’s learning to live with the awkward looks he gets in public, the uncomfortable reactions he receives from friends and the helping hands wherever he goes. It’s not easy, as a poem he recently penned expresses:
I want to be the hero,
I’m not used to being saved.
I want to throw the life boat at you,
You struggle with the wave.
“People ask all of the time, ‘How does it feel?’ ” Gleason said. “I think about Pearl Jam. I know Mike (McCready). We kind of go back a little bit, but if I wasn’t diagnosed with this, he probably wouldn’t say, ‘Hey come on stage.’ Part of me was like, ‘This is sweet.’ And then another part of me is like, ‘Well, that kind of sucked.’ ”
Facing the fear
Gleason’s down moments are fleeting. His plate is too full to waste time in reflection.
He recently launched Team Gleason, a broad group of family, friends, colleagues and former teammates dedicated to helping further his three-pronged mission: heal, provide for his family and continue to live the life he loves.
Team Gleason hopes to recruit supporters, raise funds and increase awareness of ALS. The goal is to help Gleason maintain a quality lifestyle and continue to participate in adventurous activities.
The diverse background of the members of Team Gleason reflects Gleason’s varied interests. Their reach extends from Washington and California to Ohio and Louisiana.
Among the members are Fujita, Jefferson Parish Assessor Tom Capella and Stephen Rehage, founder of the VooDoo Experience.
In its initial stages, the project already has a website, a Facebook page and Twitter account. Local shirt-maker Dirty Coast has created a T-shirt — “Better Now Than Never” — to kick-start the fundraising.
He hopes the website will cultivate an online community of like-minded individuals. As it evolves, he wants to use the site to communicate directly to fellow members and provide an outlet for his art, music, poetry and journals.
“We all need to thrash about to express ourselves,” Gleason said. “I thrashed about physically. Now I have to find a new way to thrash about.”
Eventually he wants to organize large fundraising projects and activities for others with similar life-challenging conditions. Most of all, he wants to do what he considers his purpose in life: to encourage and inspire others.
In a short period of time, he’s already managed to do that.
“If anybody can beat this it’s Steve,” said Vinnie Varisco, 38, who, like his brother, is a partner at investment firm Johnson Rice & Co. “From the beginning, he’s said I’m not going to let this disease define my life, I’m going to define what my life is going to be with this disease. Not once has he complained.”
“He’s so strong,” said mother-in-law Jill Varisco. “We’re amazed at the courage.”
“There might be a point down the road where we have to push him, but so far we haven’t,” Paul Varisco Sr. said. “He pushes himself.”
In many ways, Gleason sees comparisons between his football career and his new challenge. The inner strength he tapped to forge an NFL career against long odds are now being mined daily, sometimes hourly. The aggressiveness of the disease and its withering effects test his resolve. The fears he felt of being beaten or de-cleated on the football field are being confronted again. If you’re Steve Gleason, this is where things get exciting.
“And am I afraid now? Yeah, I’m afraid,” he said. “I’m afraid to walk in public, because people look at me. But I’m not going to stop. I’m afraid because if I want to commune with my friend Shad (Meier), I have to ask him to cut my chicken for me. But I did it. And I’m afraid to go back and see my teammates and coaches because I know that I’ll feel envy. But I’m going to do it anyway. Because fear is just a feeling, and if you can acknowledge that fear, digest that fear and overcome it, the rewards are incredible.”
Jeff Duncan can be reached at firstname.lastname@example.org or 504.826.3404.