Eric Stevens is fighting for his life. But this is not a tale of tragedy. This is a love story.
BY STEVEN HAWLEY
Eric and Amanda Stevens look as settled into their coronavirus- induced self-quarantine as any young couple could be. On our FaceTime call, I see them sitting in their Costa Mesa, California home, couch surfing in shorts and sweatshirts, the physiques of two elite athletes making them look a little less frumpy than the standard pandemic homebody. But they also appear slightly haggard as so many of us these days do, while life has turned into a litany of dressed-down, work-from-home sick days.
Getting reacquainted with the couch, interspersed with long walks on the beach with the their chocolate lab, Duke, has provided solace in the face of the COVID-19 madness. Like most dogs, Duke is thrilled to pieces with California’s shelter-in-place order. The same can’t be said for Eric and Amanda.
“We feel like this has just been a momentum killer for us,” says Amanda, the frustration palpable in her voice. “Just before the shutdown, we felt like we were making real progress. But now we’re on hold, along with everything and everybody else.”
“And I can’t get the virus,” Eric says matter-of-factly. “ALS patients already have compromised lungs.”
If the Stevens couple seems familiar, it might be because Amanda was a speaker at last January’s TEDxBigSky event. As she told the Big Sky, Montana crowd then, a month after their fairly-tale wedding in July of 2019, Eric was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease. Amanda’s brave talk, outlining the couple’s campaign to gain access to promising stem cell treatment for ALS, has more than 35,000 views on YouTube. Stevens Nation, the team moniker for those who’ve climbed aboard the Stevens’ #axeALS campaign, is a growing social media phenomenon. Eric and Amanda have appeared on The Ellen DeGeneres Show—twice inside of three months.
But the line Amanda delivered inside the Warren Miller Performing Arts Center last January that didn’t leave a dry eye in the house—“My husband is dying”—is still true.
“Eric does what he’s going to do, but he does it for everyone else. Him being himself motivates me to be myself.”
ALS is a horrific disease. There is no cure. It takes everything its victims have, starting with the lion’s share of their money—and ending with their last breath. They die because they can no longer breathe or swallow on their own. A tendency among those chronicling the deterioration of ALS patients is to focus on the full and at times happy lives it’s possible to live, even in the midst of immense pain and suffering. ALS patients recently diagnosed, still walking, talking, breathing and swallowing know what’s coming. The fear and dread are yet another variety of punishment the disease dishes out. This is the stage of ALS that Eric and Amanda Stevens are dealing with. They, along with their family and friends, are never more than a few breaths away from shedding a few more tears.
In spite of all that, what follows here is not a tragedy. It’s a love story. Like all good and true love stories, happily ever after is no guarantee. And like all true love stories, the ending remains unwritten.
To understand why this is a love story, there are some people in Eric and Amanda’s near orbit you should meet. Eric has three brothers. All four of them are ridiculously handsome and athletic, yet plain spoken, well grounded in the art of practical living, and dedicated to serving others’ needs before their own. Three of them—Jeff, the oldest, along with middle brother Brett and Eric, the youngest, are Los Angeles City firefighters. The fourth brother, Craig, in 2016 gave up catching touchdown passes from the likes of Marcus Mariota, closing the door on an eight-year career as a tight end with the Tennesee Titans.
He could see the toll the game was taking on the health of his colleagues. Among myriad hazards, football players also risk twice the probability of an ALS diagnosis. Craig witnessed Titans teammate Tim Shaw as he was cut from the Titans in 2011 after then-mysteriously declining performance. In 2014, Shaw was diagnosed with ALS. Eric also played football in high school then at Cal-Berkley, and for a year in the NFL with the St. Louis Rams. Eric’s style of play reminds Craig of ex-teammate Shaw. “They were both reckless with their bodies, headhunters,” Craig recalls.
Eric and Amanda are also blessed with the kind of friends for which many of us can only wish. There are dozens of them, but three of Eric’s childhood buddies are practically family. Independently of one another they testified they are more like brothers than friends: Vince Tomich, Kevin Hawke and Mickey Mance have known Eric since they were all kids.
Stevens Nation, the name for followers of the Stevens’ #axeALS campaign, was actually invented when the Stevens and their friends were little. “My parents had four boys,” says Brett Stevens, of the family’s upbringing in nearby Palos Verdes. “But my dad has a brother who lived up the street from us who also had four boys. And there are two other brothers in my dad’s generation who had kids. So at any school or sports event, you might see eight, 10 or 12 Stevens kids running around. People started calling us ‘Stevens nation’ back then.”
Good families and the most loyal of friends are often reliable makers of true love stories. Another far less obvious connection lies in the ways love is like water. Its persistence belies its liquid lack of structure. It doesn’t talk much. Taking on the shape of whatever sized vessel it can fill, water presses on quietly, over, around, through anything, most often without anyone noticing what it’s doing, finding its way along the path of least resistance.
Eric Stevens has been a water baby his whole life. Palos Verdes is situated near some of southern California’s better surf breaks, and Eric and Brett grew up surfing from a young age. These days, Eric’s favorite thing to do is fly fish. “Just walking along any stream in the mountains, the quiet of it, the scenery,” he says. Kevin Hawke has seen it. “Eric likes to fish,” he says, “and anyone who knows him can totally see him living along some stream in Montana, just him and Amanda and their dog.”
It was the first thing Eric could think of doing after his diagnosis. He and Vince, Kevin and Mickey drove to Mammoth Mountain, high in the Sierra Nevada, to fish and watch the water roll by. “We all just agreed we had to fix this,” recalls Mickey Mance. “After we went to Mammoth, we all agreed to dig a little deeper, looking at websites, looking at blogs, online forums, whatever we could find.”
The determination to find and advocate for better treatment for ALS was never in doubt from the day Eric shared the news of his diagnosis. But there was another problem. “After he was diagnosed, Eric didn’t want to talk about it, didn’t want to tell anyone,” Vince Tomich says. “It wasn’t that he was in denial. It’s just that Eric has never asked anyone for help. Selfless is the word. The first thing he said about his diagnosis, and he said it repeatedly, was that he wanted to make sure Amanda would be OK. He’s always been about making other people’s lives easier.”
Eric is possessed of an elusive and uncanny quality: he leads quietly, seemingly without trying, by a kind of example that others want to emulate. “He was an insane athlete, good at whatever he tried,” Tomich says. But he was the last person you’d ever hear telling a story about himself. Eric does what he’s going to do, but he does it for everyone else. Him being himself motivates me to be myself.”
“It made us realize that Eric was going to have a platform … And we would have to use it.”
Eric was voted captain of the football team in his senior year at Cal. As the youngest of four boys, his quiet leadership qualities seem even more unusual. “None of my older brothers got to play football. My dad wouldn’t let them,” Eric says. “But I was the youngest of four and so I guess by the time I was old enough to play, my folks relaxed a bit.”
Craig, five years Eric’s senior, began flipping through the playbook of his little brother’s Pop Warner football team. In Craig’s junior year of high school, inspired by Eric’s success at the game, he decided to try on a helmet for himself. It worked out pretty well: a full ride to Cal and an NFL career.
When life changes quickly, assets that were once a tremendous help can sometimes prove a hindrance. Amanda saw her spouse’s initial reluctance to speak out, too. “It was a decision he had to make,” she says. “We knew that because of our connections as athletes, maybe we could get some attention on ALS, not just for Eric but for everybody. But Eric had to decide how much he could be out in front of people.”
The quietly fierce competitiveness, the do-it-yourself then show others how to do it ethos, would have to change. Eric’s dynamism would have to be less like a rock and more like water— finding a way to get where he wanted— to effective treatment by cutting down the path of least resistance. Walking beside peaceful waters with the hope that a fish will rise might help. Eric had always wanted to fish in Alaska. Craig had some connections from his years in the NFL. Miraculously, four spots were available at one of Alaska’s finest fishing lodges, just as the short window of summer was about to slam shut in the far north.
Bristol Bay Lodge sits in the heart of one of the world’s richest fishing grounds. For anyone who loves fly fishing, there’s no better place on earth. For the Stevens brothers, the juxtaposition of the world’s best fishing and the world’s worst diagnosis for Eric was disorienting. “The trip was kind of surreal at first,” says Brett. “We didn’t know what to talk about, or if we should talk about it, or if we should just fish and have fun.”
Over the course of a few days, the brothers remembered what being brothers should be. “For a long time, we didn’t say anything,” Craig recalls. “Then we just started doing goofy things brothers do. One of us ate the raw heart out of the salmon we caught, and then we ate some of the eggs. We just started being how we’ve always been, laughing, cracking jokes.”
The Bristol Bay Lodge experience includes a few nights at remote fishing haunts. Rainbo Camp is situated near the tidewater confluence of two rivers, an afternoon jaunt from the proper shore of the Bering Sea. Isolated as it is, accommodations remain on the posh side of any possible camping experience: two adults per spacious tent and a full- time camp chef, camp hosts and fishing guides. Opulence that week, however, took a back seat to brotherly love. “We just decided to all move into one tent,” Craig says. “No one really talked about it. We just grabbed some cots and made it happen. At nights we talked a lot. Not about anything serious. It was good for all of us. Then I think it was as we were leaving that Eric said ‘I want to make a difference. I want to leave a legacy, I want my name to mean something.’ So then we knew.”
What wasn’t known then was how quickly Eric’s willingness to speak out would spark a rush of support. In November of 2019, two months after Eric’s diagnosis, his brothers and friends decided to organize an oceanside cornhole tournament. “The idea was to invite friends and family, have a barbeque and drink some beers down by the beach,” Eric says. Vince Tomich, Mickey Mance and Kevin Hawke along with Eric’s brother Brett were up to the task, which proved more than just a backyard picnic.
“We presold 2,500 tickets for the event,” recalls Mance, “and 1,500 more were walk-ups.” What started as a modest affair became something much more ambitious. A merch station sold hundreds of Stevens Nation/#axeALS hats and T-shirts. Mance, whose family owns a deli in Hermosa Beach, procured food and beverages. “It was insane,” chuckles Eric. “Kobe Bryant was tweeting about it.”
“It made us realize that Eric was going to have a platform,” Amanda says. “And we would have to use it.”
In between appearances on Ellen, a TEDx talk and managing a mushrooming social media campaign, Stevens Nation has sought justice for Eric and thousands of ALS patients like him. As Amanda describes in her TEDx talk, a small Israeli pharmaceutical company called Brainstorm is in Phase 3 of an FDA approval process for its promising ALS treatment, Nurown. The Food and Drug Administration is the federal agency charged with approving new medicines, and ALS patients lucky enough to have gotten in on the FDA trial process are walking after being wheelchair bound, ditching respirators as the power of their own lungs returns, and talking easily after the disease compromised their ability to speak. But even those whose ALS symptoms seemed halted or reversed were cut off from the drug when the trial ended.
Drug approval is a complicated and expensive business. It often takes billions of dollars to bring a new drug into FDA-approved existence. It’s also necessary: less than a century ago, door- to-door salesmen peddled a concoction comprised of cocaine, morphine and alcohol door-to-door, a “tonic” that promised to cure whatever ailed. Yet in the case of ALS patients, the FDA has seemed more compassionate toward the scientific method than those diagnosed with a terminal illness. “This is how perverted our healthcare system is,” says Vince Tomich. “There are states where I can go, and with my stated intention to want to die I can get a prescription for a pill that will kill me. But Eric can’t have access to treatment that meets his stated intention to live. We have a system that will accommodate a wish to die, but not one to stay alive.”
ALS advocates point out the cruelty of subjecting an ALS patient—one admitted to the trial—to a placebo. “These trials are inhumane,” Craig says. “Animals get treated better. You find a drug that’s effective for some ALS patients and then just cut them off of it at the end of the trial? Or worse, you give a placebo to a terminally ill patient?” Craig is closest to Washington, D.C., where he’s spent a lot of time pushing for a fast track for Nurown. The White House has ears on the situation. So do many members of Congress. But so far, no action. “They’ve suspended every rule in the book to fast track a vaccine for COVID-19,” Craig says. “So we know it can be done. The rules can be bent if the situation demands it.”
There’s no doubt the situation demands it: in the time it will take to get Nurown approved and available for ALS patients, sometime in 2021, roughly 3,000 of them will die. One of them could be Eric. “There’s no sugar- coating it,” Tomich says. “Eric is dying. He’s going to die if what we’re doing doesn’t work.”
Stevens Nation is working as fast as it can to access Nurown. Yesterday would have been the best day to pull this off. But tomorrow will work. Eric is no longer reluctant in the least to be in the public eye. “He will not give up,” Craig asserts.“He will do or try anything to beat this.”
“I’ll do anything except a TEDx talk,” Eric says of his wife’s performance last January. “What Amanda did up there was just incredible, and it was definitely something I could not do.” Admitting there are things he can’t do has been part of the journey in learning to cope with ALS. “I always thought I’d be the one taking care of Amanda, and now here she is taking care of me.” Steadfast as Eric in her refusal to take credit for good works, Amanda corrects the record. “He isn’t taking care of me,” she says. “We’re taking care of each other.”
Which brings us to one more way Stevens Nation is a love story. On one of the first family vacations where Amanda was present, she and Eric were still in college and still working out daily. Amanda was a soccer standout at Cal, a defender with her own reputation as a badass on the pitch. “They’re doing wind sprints up a hill,” recalls brother Brett, “and Amanda’s beating him.” When I related Brett’s recollection to Eric and Amanda, Eric rolled his eyes, Amanda laughed, and Eric mildly and amusedly started disputing the account. But then he changed course. “No she probably beat me fair and square,” he concedes. “She was fast.”
The transition from athletes to activists has been a different kind of fast, as well as a reckoning with a new variety of frustration. “As an athlete, you’re always asking how can I get better? How can I improve? Do I need to run more or lift more, or do this drill? With ALS there’s no tool in the toolbox. There’s no pill to take. So we have each other,” Eric says.
True love stories have an unwritten ending. Which implies that anyone might contribute to the next chapter— even you. If you’re so moved, try watching Amanda’s TEDx talk. She reminds anyone who’s ever been married, anyone who’s ever been in love, of the exhilaration of catching one of life’s best waves with the one you chose, and the one who chose you. How two people together in love can be far greater than the sum of their parts. How infectious the love of family and friends can be. How it is that justice is borne out of love, how both compel us not merely to empathize, but to act. To show, not just tell. To hope, not out of fantasy, wild wish or hollow prayer, but with expectation: like casting a dry fly precisely to the spot you know a fish will rise.
At the end of Amanda’s talk she and Eric’s embrace on stage, as if they’d both been sprinting up a hill so hard they had to lean on each other at the top. They fall into one another, and lift each other up as they do. That bear-hug is why this is a love story.
Like water, true love stories sometimes don’t need words. Just the ocean of feelings in the heart of an embrace like that one.
A writer from Hood River, Oregon, Steven Hawley’s work has appeared in The Drake, Fly Fisherman, Outside, and High Country News. With Director Michael Peterson, Hawley produced the documentary film Dammed to Extinction. His book on rivers will be published by Patagonia Books in fall 2020.