It all started with calf tightness. When Brooke Eby started walking funny in 2018, she thought it was a muscle issue. A business development manager then in her early twenties, Brooke was healthy, exercised, and had a pretty average work-life balance. But when her limp became pronounced enough that friends started pointing it out, Eby thought it might be a good time to go to the doctor. What followed was years of doctors visits, tests, and absolutely no concrete answers. “They were throwing things at the wall,” Eby tells Rolling Stone. “One doctor mentioned polio. It was like I was on an episode of House. My whole family and I were like, ‘There’s no way it’s something serious. I probably just have a weird foot.’ In hindsight, we were kind of idiots about it.”
Four years later, when Eby’s other foot started acting the same way, she and her family finally got their answer. She had ALS. Also commonly referred to as Lou Gehrig’s disease, ALS is a degenerative disease that impacts the motor neurons of the brain and spinal cords, with a life expectancy of two to five years after symptoms first begin. The disease is rare, fatal, and according to Mayo Clinic, typically occurs in people aged 60 and older. Eby was 29.
“I went home in a fugue state. I don’t really remember, but it involved eating a lot of M&Ms,” she says. “I was like that for almost two months until my friend’s wedding. I had to show up in front of all my college friends with the same walker as the bride’s grandma — same tennis balls on the bottom and everything. All my friends rallied around me, and we were laughing about it the whole time. That was when I was like, ‘I can still joke about this.’”
In the three years since, Eby has combined her dark humor with posts about ALS awareness, building an audience a quarter-million strong on TikTok, where she shares the nitty gritty of life with ALS. For some people, activism looks like funding drives, serious speeches, and heartfelt appeals to people’s sensibilities. And while that’s certainly an aspect of Eby’s work, the creator likes to focus on a more frank approach to teaching people about the disease. Eby posts almost every day, with her videos spanning from medical tests charting her muscle and breathing decline to describing what it’s like to have your elderly parents become your full-time caretakers. But the through line in all of her content is using her personality to get people to think more about ALS.
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“You could read an infographic about how one in 400 people will get this disease, and you have two to five years to live, but that’s not something that tugs at the heart,” Eby says. “So I was like, ‘I’m just gonna do the ‘show don’t tell’ method.’ I remember at the beginning people being like, ‘You seem so happy,’ and I was like, ‘Just wait.’ This disease is not gonna stop just because I’m young and bubbly.”
ALS has a long and storied history with celebrity spokespeople and internet awareness. In 2014, the ALS Ice Bucket Challenge went mega-viral online, giving the disease one of its first pushes into the global consciousness since baseball legend Lou Gehrig was diagnosed with the disease in 1939. Stephen Hawking is one of the names most associated with the degenerative illness, but he lived an incredibly rare 55 years after getting diagnosed. Eby’s goal is making sure people know what ALS actually does, and why an increase in funding and research could actually change people’s lives for the better.
Because there is no one specific test for ALS — and the initial symptoms vary so wildly — much of the time where experimental treatments could be helpful is spent confirming people have ALS in the first place. These treatments can range from new medication to clinical trials aimed at ALS early symptoms. Eby doesn’t like using the word parasocial, but she does note that her content works because it makes people feel like they know her. When she posts a humorous anecdote about accidentally taking a weed gummy too soon and getting stuck in her lift chair, or a more serious update about her paralyzation progressions, she knows it gets people to stop and listen. And for her, that’s the point.
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“I think people could glean insights from what I’m saying. But I’m certainly not like ‘Today I’m going to preach about gratitude.’ Because I’m not feeling grateful for shit right now,” Eby says. “I would rather people see and connect with me and that way they have a dog in this fight. I want people to say, ‘Oh this girl I know has ALS,’ even though it’s through a screen. I could be your friend, your sister, your daughter. And so that way as people are tracking my progression, they’ll be pissed at ALS and the lack of [clinical] progress.”
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It’s been three years since Eby started posting about her diagnosis on TikTok, but the changes have happened swiftly. She is almost fully paralyzed, and calls her thumbs “the only useful things” on her body that can still do part of their original job. Most of her editing and TikTok magic happens through voice commands, and she’s able to use other devices such as laptops with eye tracking software. Her voice has gotten raspier and quieter as the months have gone on, but she hasn’t made any plans about a potential future where it goes entirely. “The fact that my breathing is decreasing at the rate that it is, it’s more likely that the breathing will be what kills me before my voice even goes all the way,” Eby says. “It’s very strange that I’m still talking. All the doctors, they’re like, ‘That’s very unique.’ Okay, thank you, exactly what a patient wants to be told.” But even while she’s joking, Eby says she’s very aware that there’s a day in the future where her TikTok followers will be given an update they don’t want to hear — that she’s gone. Eby describes days where a depression over her future takes hold in a “dark cloud.” But she says when she thinks about her TikTok, she still hasn’t figured out what the account will look like after she passes. She’s too busy having fun on it now.
“People are always talking about legacy and whatever. I don’t really care,” Eby says, laughing.” All I really care that people remember is someone like me could get this disease, and that it took me as quickly as it did. As long as when they hear the word ALs, they can picture a face, whether it’s mine or someone else’s. I can’t be embarrassed once I’m dead.”
