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By Brett Martin
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An elongated object sails through the air over New Orleans. Along with many others, Steve Gleason watches him for a long moment hanging from the top of his bow, then begins to fall, falling in what appears to be slow motion. With a suppressed sense of delirium, the crowd piled up in a condition to explode.
You could probably think of a Monday night football game in 2006. That night, the first New Orleans Saints to return to the Superdome after Hurricane Katrina, Atlanta Falcons punter Michael Koenen was preparing to finish the ball inside the box just as Gleason, the small-sized, non-special group Saints player, broke through. Almost horizontally, with his hair floating under his helmet, hands clasped as if in praise, he sent the ball across the turf, making a landing and marking the end of the match. The team’s long exile. It was such an explosive, cathartic and terrifying moment that it was immortalized in a statue in front of the doors of the Dome.
But it’s not that Monday. It was a warm spring afternoon last week, right in the middle of the New Orleans Jazz.
Above all, Gleason is no longer the same user he was on that remarkable September night. It’s been 16 years since he retired from football; thirteen years after being diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease); 12 years since he started using a wheelchair and ate his last counterfeit meal; 10 because he had to go through a tracheostomy to keep breathing. They’re missing, he likes to say, “ten years past my expiration date. “And yet, here it is, as it has been for more than twenty years. Watermelon sacrifice, beaming with the rest of the crowd as the cantaloupe, tossed skyward this year by Rivers, Gleason’s own 12-year-old son, falls back to earth and erupts into a red-and-green flesh mess that is immediately attacked by the enthusiastic crowd.
What you have to take note of Gleason is that his equally devastating and inspiring new memoir, An Impossible Life: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence, devotes as many words to the sacrifice of the watermelon as it does to the blocked Punt.
“Punting can be synonymous with success on the football field,” he told me, through an exchange in which I emailed him questions and painstakingly typed the answers into a pill that he controls with the movements of his eyes. “The sacrifice of the watermelon represents a triumph of a different kind. It’s a symbol of everything I love about New Orleans and its people, my family. It’s a birthday party of the imperfect appearance of life and the enduring spirit of a city that has captured my center. It is also the occasion where he meets his wife, Michel Varisco Gleason, initiating a wonderful and complicated love story that is the emotional center of An Impossible Life.
Gleason’s insistence on remaining connected to the blood of New Orleans culture made him a folk hero in Crescent City, just as his most prominent football game continued. Its unique chair is a common sight in the city. In recent weeks, he unveiled an art collection he created using AI prompts; participated in the Zurich Classic golf tournament; And, of course, he was at the watermelon sacrifice. Last year, in the middle of Mardi Gras, he marched down the five-mile Krewe of Orpheus parade route. Meanwhile, his organization, Team Gleason, has raised tens of millions of dollars for ALS patients; he was a driving force behind the emergence of the generation that allows him to continue communicating; And he has been one of the nation’s leading visual advocates of medical studies of disease. It’s all part of a tireless commitment not only to stay alive (a monumental act of will and fortune in itself) but also to live.
But let’s get to it: if there’s one thing An Impossible Life continually highlights, it’s that while Steve Gleason is tireless, he’s not. He’s tired. And depressed. And frustrated. And even worse. Gleason makes no secret of the suffering necessary to reach, however fragmentary, moments of wisdom and acceptance. His eBook not only alludes to the wilderness in which Gleason spent his time, but also makes you feel each and every one of its thorns. As he says, “Wild nature is tattooed everywhere. “
Gleason at Jazz Fest’s Watermelon Sacrifice in 2019.
There’s a Team Gleason pickup truck parked in the driveway when I get to stop at Gleason’s home in a suburb of town. (We’d never met before, but I’m friends with his co-writer, Jeff Duncan, and I read some of An Impossible Life in early drafts. ) The Gleasons have two sons, Rivers, 12, and Gray, 5. The children’s motorcycles are tilted in front of the garage and the living room is in a state of familiar disorder on Friday mornings.
Gleason invited me to watch what he calls his “morning workout,” a reminder of his days as an athlete that he now references, along with what I’ll soon realize as an arched eyebrow, the routines needed to free up the day.
I locate him in the room, with two of his three full-time caregivers, Jenni Doiron and Beau Baker. Gleason is lying on the bed, his thin legs bent to the side, wearing a blue T-shirt emblazoned with one of his mottos: NO WHITE FLAG. A towel covers the lower part of his body. His nails are painted with various patterns of blue and white; Doing manicures is one of his daughter’s favorite hobbies. Away from pilling him during training, Gleason communicates using a low-tech solution called a letter board, also known as a gaze board, in which the alphabet is divided into six sections. Gleason spells words by moving his eyes around the imaginary board suspended between him and his assistants. One eye movement indicates the correct square and the next, the correct letter. (Your quotes from him here come from this method, from our emails, or from the electronic voice produced through his pill. ) There is a copy on the wall next to Gleason’s bed, everyone here has memorized the painting; Baker has worked with Gleason for 4 years and with Doiron since 2011.
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Every step of Gleason’s remedies is choreographed and rehearsed down to the smallest detail. Much of the morning is devoted to the daily effort of defecation, a fundamental need that becomes infinitely more confusing due to the loss of muscle strength in the body. He arrived, put an enema on him, and now Baker is leaning over him on the bed, pumping his fists deep into Gleason’s abdomen. When they began this regimen together, Gleason had to continually ask Baker to press harder, until his fist almost touched Gleason’s column; Baker is afraid to kill his client.
When Gleason indicates that the time may be near, Baker turns off his ventilator, setting off the machine’s alarm. “It’s smart for a smart time,” Doiron says, which is rarely as reassuring as it might be for a newcomer. In fact, Gleason has trained to hold his breath, with proper preparation, for 3 1/2 minutes and would like to take it even further, a point of contention between him and his caregivers. Baker lifts Gleason out of bed, his body dangling briefly like a coat on a hanger. Baker places him on a plastic seat designed to serve as a toilet and shower chair, and reconnects his breathing tube to what’s called a handheld cough device, which helps him empty his lungs. Baker leaves to prepare the day’s shakes that will be administered through a feeding tube in Gleason’s chest. Gleason’s sense of taste is intact and his servants will put anything in his mouth (beer, soy sauce) to give it a little flavor before sucking it. However, dinner isn’t the most sensible on the list of things she misses about his life beyond. “I don’t know why,” he said. There is one exception: “I want sushi. “
Now, Doiron takes over the gut program. Planting his feet and tiptoeing forward, he sinks his fists into Gleason’s stomach. Moaning and straining, Gleason guides his hands with his eyes. A white foam flower appears at the tip of his mouth and a trickle of mucus drips from his nose. The mouthguard that holds his tongue in position falls off, and Doiron puts it back in position. In his sight box, across the room, is a photograph of Gray and Rivers. If you could turn to your left, you would see a Buddha statue instead. the courtyard; to his right is a small figure of Yoda on the dresser, sitting in more or less the same position. The procedure takes about ten minutes before a series of unmistakable noises and smells indicate that the task is done.
Gleason rests. He has yet to crack a half-smile and now he’s throwing one at me. He looks at it and says he’s going to start spelling out anything Doiron has to say to me. His eyes blink as he deciphers each letter.
“CHAPTER. ” A pause. “ONE. “
Gleason and his former Saints teammate will become fo-a-fo in 2023.
In fact, An Impossible Life begins in pretty much the same place: with a visceral depiction of Gleason’s morning. If what Gleason decided to show me about his life seemed strangely intimate and awkward, the e-book scene is made even more so by the presence of Gray, then 3 years old, sitting on the floor, crying inconsolably as Gleason self-immolates in frustration at not being able to help him. That’s when you realize they won’t be the inspirational memoirs of an ordinary former athlete. , An Impossible Life is about Gleason’s search for peace through philosophy and spirituality, but it also demands that the reader witness the harsh realities of his daily life. Nowhere is this more true than in the chapters detailing the burdens that Gleason’s disease places on him. Making extensive use of text message exchanges between the two, the eBook gives you the nauseating feeling of listening to a couple’s most personal moments.
“Michel and I consciously chose to unabashedly communicate about our journey, knowing the dangers involved. These difficult, heartfelt, and compassionate conversations have been our redemption and healing,” says Gleason. “Writing this e-book is an exercise in vulnerability and imperfection, with the goal of providing kinship with those navigating the unknown fog. “
At this point, Doiron brushed Gleason’s teeth, gave him a shower, and vigorously brushed his beard and mohawk. When he finished, Doiron placed his forehead in front of Gleason’s, pressing their heads together and maintaining eye contact for several long seconds. This is known in Gleason World as “Fo to Fo, Mofo,” short for “face to face, motherfucker. ” It is an all-purpose connection gesture that Gleason evolved to upgrade all other contact bureaucracies that are no longer possible. Baker lifts Gleason into his wheelchair, even though it all reconnects him to the little independence he still enjoys. Gleason worked with Microsoft and a company called Tolt Technologies to develop software and an eye sensor that allows you to use the Internet, move your chair, speak with an electronic voice and control elements of your environment such as lighting and television. With no medical cure for ALS, Gleason considers this generation to be his closest equivalent. “Technology can give back the most of what ALS takes from us,” he says. “Without that, instead of being a productive member of society and a pretty badass dad, I’d be dead. I would call it a cure.
We gathered around the kitchen table. There’s a covered basketball hoop nearby and sports equipment scattered everywhere. Gray is an avid gymnast, but Rivers loves ball sports, which raises the inevitable question of whether the Gleasons will allow him to play football. The link between traumatic brain injury and ALS remains an open question, but several studies suggest it may possibly carry an increased risk. For now, Michel Varisco Gleason says, Rivers has shown more interest in other sports. “We’re not a huge football house,” he says. “Steve is someone who didn’t even know the Saints had hired Reggie Bush, even though he played for the Saints. “
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In his book, Gleason anticipates the factor, writing that he would like to advocate for flag football to be an official top-tier school sport. But, he says now, about the option of Rivers going for the most violent edition of the game, “it’s not a resounding no. “
Difficult topics are not only taboo here, but they’re also strangely welcome. “Steve-O loves to talk about mortality,” says Varisco Gleason, as we gather around the kitchen table. the alarm that would imply that his fan has gone down, may simply kill Gleason. But it’s also very likely that your schedule will end when you make a decision and it’s no longer bearable to continue. Gleason drafted a document called The Impermanence Project, a kind of expanded living will, and especially demanded his remains.
“He needs his ashes to be scattered in seven other places,” says Varisco Gleason. “A few years ago, she had a bout of sepsis and everything seemed wrong. My first thought was, “No, that can’t happen! I don’t know. “the seven places!”
Recently, the issue has become more pressing as Gleason’s eyes, which are his primary communication tool, are beginning to fade. Doiron regularly applies special eye drops, made from Gleason’s own blood, in an effort to keep his eyes lubricated. The first step would be neural implants, of the kind developed at the University of California, San Francisco and through the personal company Neuralink, that can also connect the brain directly to a computer. However, the fear is that Gleason will possibly be located. “locked up” before that is even imaginable.
For now, the increased difficulty leaves him more frustrated and, on his worst days, more susceptible to communicating about the option to give up.
“It clears the chest and makes everyone worry for a while, and then it’s fine,” says Varisco Gleason. “I think knowing that he has the ability to say, ‘Eff, that. ‘I’m leaving here,” it’s useful. It gives you a sense of control. And also being surrounded by other people who say, “Okay, you can say that, but it’s not going to go down right now. “
Gleason’s eyes turned to his tablet. I’m so sorry I said those things to you,” he said. “Drop bombs. “
“Steve, that’s really good of you, but it’s part of how you handle it. Please, let’s make a joke about it and not feel bad,” Varisco Gleason said. “I have to say, you might feel a little bad. “
I’m not saying anything about feeling embarrassed about the things I throw tantrums about with my own family. “Life is not about comparisons,” says Varisco Gleason, with the authority of someone who happens to know. “Don’t compare yourself to Steve because he never wins. “
The laughter around the table is loose and unrestrained, and hardly resembles that of the gallows. It is, it seems, a eulogy to the Gleasons’ radical honesty – in An Impossible Life, with Me and Others – in the face of the demanding. situations of what happened to them.
“I understood that true peace comes from being attentive and accepting our cases in every moment, without resistance,” Gleason says. It’s an absurd request from anyone, let alone himself, but spending time with him and his family is just beginning. That’s what makes the difference.
Somehow, the subject of Gleason’s first full season with the Saints comes up. That was in 2001 and had been cut after only 3 games the year before, the moderate maximum result for a player of his length and potential. Then, at the last second, the call came: A player he refused to call for fear of embarrassing him had shot himself in the knee while cleaning his gun. Gleason was at the bottom of the list.
“I mean,” Gleason exclaims, with the slightest irony. “Who’s luckier than that!”
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