After his football career ended, Eric Stevens became a firefighter.
Eric Stevens and his wife, Amanda, were married a month when he was diagnosed with ALS, colloquially known as Lou Gehrig’s disease, in August 2019.
Stevens is a former professional football player, the second such person to be featured in this space. After going undrafted in 2013 out of the University of California at Berkeley—affectionately known as “Cal” to lifelong Bay Area denizens like me—Stevens, who played fullback, signed with the then-St. Louis Rams. A member of the team’s practice squad, he was released in early October of that year. After his athletic career ended, he became a firefighter in Los Angeles.
In the years since receiving his diagnosis, Amanda has dedicated her life to caring for her husband and their daughter. A Bay Area native, Stevens’ experiences with ALS as a family member mirrors much of what former Bachelor contestant Sarah Trott shared with me about her own life last fall. In an interview with me by phone last month, Stevens shared a similar sentiment to Trott: prior to the news of her husband’s condition, she admitted she “didn’t know much” about ALS. Eric started exhibiting signs like twitching, weakness in his arms, and slurred speech.
A Google search gave the couple a good sense of what was wrong.
“As I started to learn more [about ALS], it was just so crazy to me that this healthy 29-year-old… he was in the best shape of his life when he got diagnosed,” Stevens said of researching ALS. “[I didn’t understand] how this could be happening.”
Eric’s slow yet inevitable decline has been “extremely hard” for Stevens. Before being diagnosed, she told me they were “this amazing team… we would work together on everything” in terms of household chores like laundry, walking their dogs, and caring for their toddler daughter. The reality is Amanda is the primary caregiver for Eric, but she told me they’re “fortunate” to live in a home with his family nearby. Eric’s parents and brothers all pitch in to help the family, ranging from everyday tasks like grocery shopping to small home renovation projects.
Stevens is eternally grateful for the support system surrounding her. “We’ve had to lean on the help,” she said. “We’re so fortunate we’re in a community and a family that was able to do this for us. I don’t know how I would do it without them because a lot has been put on my plate, and I want to make sure that I can be the best wife and the best mom. I can only do that if we have the help that we’ve had.”
Stevens’ sentiments bring to light a point I made in my initial interview with Trott. While Eric may be the one with the condition that has clearly disabled him, it’s also true that the amount of things put on Amanda’s plate is just as disabling in its own right. The physical and emotional tolls on caretakers is not trivial. For Amanda, she told me she has found coping mechanisms in physical activity. A former soccer player, she enjoys “getting out in the fresh air” to run and walk the family’s dog. She works out as well, and said therapy is “on my list” for the future.
Make no mistake, caring for someone—family member or not—is a full-time job.
During our conversation, Stevens told me about the family’s philanthropic endeavor in the axeALS Foundation. On its website, the organization states its goal is to “raise money for trials and treatments that would expand access for ALS patients.” The foundation began from a position of privilege, insofar as Eric’s relative celebrity as a former NFL player and fireman helped buoy the cause. The platform grew quickly, with Stevens telling me the hashtag #axeALS went viral on social media and Eric’s story getting profiled in publications like People and the LA Times. Like Trott’s Facebook group, modern technology vis-a-vis social media has enabled the Stevens family raise awareness about ALS faster and with exponentially greater reach than ever before. That, too, is accessibility.
The axeALS Foundation is one of several in the ALS community. Where axeALS is focused more on the medical aspects of the disease, other organizations like the Team Gleason Foundation and the I Am ALS Foundation is focused on amplifying awareness and assistive technologies for ALS patients, respectively. (Incidentally, Team Gleason is named for former New Orleans Saints safety Steve Gleason.)
While there is no known cure for ALS, Stevens said most ALS patients (and their families) obviously want to prolong the duration of their terminal illness for as long as possible. To that end, she explained people really want options; they want “something to try,” she said. Eric has been able to participate in clinical trials of experimental therapies that can slow down the disease’s progression. Stevens explained this is one of the foundation’s three main goals: encouraging more medical research into the condition. Eric, and all ALS patients, want to live as normally, and as freely, as they possibly can. New discoveries into treating the disease will help them do so. The Stevens family wants to make Eric’s experience with the clinical trials accessible to everyone, regardless of their station in life.
Moving forward, the fact Eric has only a finite amount of time left is inescapable. That said, the terminal nature of ALS is the driving force behind the work the Stevens family is doing. They want to see ALS become a disease that is incurable to a disease more akin to chronic conditions that require routine maintenance. Finding a cure is the holy grail of course, but short of one, the goal is finding new treatments to effectively manage the devastating effects of the disease.
For an ALS patient, Amanda said Eric is doing “fairly well.” Thanks to his participation in the experimental therapies, he’s still moving around, breathing, speaking, and eating on his own. To reiterate an earlier point, the Stevens family wants to democratize access to the tools Eric’s had to every other person with ALS.
“If we’re giving patients more opportunities to access these drugs [by] going through the clinical trials,” Stevens said, “hopefully, more ALS patients can manage this disease and can continue to live their lives as full as possible.”
