Brooke Eby pictured in Jupiter, Florida on December 20, 2024. After being diagnosed with ALS in 2022, Eby has found a fan base online. Photo / Gesi Schilling / The New York Times
Since being diagnosed with ALS, Brooke Eby has chronicled her journey online, inspiring followers with humour and resilience.
Brooke Eby did not intend to be back here at 36, living with her parents in the suburban home where she grew up – a traditional-style house in Potomac, Maryland, with ceramic plates on the wall and the family cat yowling from the kitchen. But by last summer, it became clear that living alone was no longer safe. Getting in and out of bed had become challenging. One day, after a fall, she was stuck on the bathroom floor until her dog walker arrived. Eby’s arms had a new heaviness to them, too – the same sensation she’d felt in her legs before losing the ability to walk.
On TikTok and Instagram, she asked her more than 350,000 followers if any of them had moved back in with their parents, and for a pep talk. “I need reinforcement,” she said, and then, in a higher, playful pitch, “Help me.”
For most of her life, Eby kept a low profile online. But since being diagnosed with ALS, or amyotrophic lateral sclerosis, in 2022, Eby has joined a niche group of content creators with terminal illnesses documenting the progression of their diseases on social media.
She considers herself more video diarist than influencer: Rather than Eby hawking vitamins or skin creams, most of her posts take viewers along as she shares health updates and otherwise shows the reality of living in a body that no longer functions as it used to.
On the rare occasions she has posted paid content, it has been for companies such as a clothing brand that makes styles for people with disabilities and the National Funeral Directors Association. In one video, she joked about mainstream influencers receiving a new line of Louis Vuitton bags, and her receiving a new line of Depends.
“It’s bleak,” she said from her wheelchair in her parents’ living room, sipping warm water from a Stanley cup and laughing.
Her followers often laugh along with her – not because there’s anything funny about ALS, a neuromuscular disease with a typical survival time of three to five years after symptoms emerge, but because she has managed to keep a sense of humour despite her circumstances.
In August, Eby recorded as movers packed up her apartment (“my last solo apartment ...til we find a cure,” she wrote). The post drew a line between her more independent life and this next chapter, where she requires help from her parents, both in their 70s, and a part-time caregiver.
“What a tough reality to face. Thank you for sharing your journey,” one commenter wrote.
The heaviness of that moment had dissipated by late October, when Eby appeared to have settled into the next phase of her life – as well as a makeshift, accessible bedroom off the kitchen in her parents’ house. She said that in retrospect, her followers – almost all of them strangers to her – made the transition easier. When one of them commented, “Girl, I moved home for a lot less,” Eby laughed and was grateful for the dose of perspective. “I forget sometimes how serious this is.”
The relationship between Eby and her followers can seem symbiotic, but it’s also not without complications: The hundreds of thousands of people who have become invested in Eby’s story have signed on to watch her fight a disease with no cure, some of them deriving inspiration from her feed while participating in the magical thinking that her health will improve. Eby has noticed that when she shares videos that break that spell, like a post showing her decreased lung capacity, some people comment that it’s becoming difficult to watch. “I can’t fault them for that,” she said. “I put myself on their screen, made them come into my life, and now I’m like, ‘Hey, bad news. I’m getting worse, as we knew I would, but no one wanted to believe it.’”
Without a medical breakthrough, Eby will eventually lose all physical function, including the ability to talk. If she continues to post to the end of her life, as she plans to, her followers will watch her die. And yet, they still follow along. A question even she can’t answer is, why?
Eby’s first signs of trouble were subtle: It was 2018, and Eby, then 29, was about to move to New York City from San Francisco when she felt a tightness in her left calf. Within months, she developed a weakness in her foot, then enough of a limp that her work colleagues noticed while rushing to and from meetings in Manhattan.
Eby consulted her sister, Sarah Eby, a physical medicine and rehabilitation doctor, who asked her to walk on her heels. While Eby’s right foot cooperated, her left foot dropped to the floor.
“It was worrisome,” Sarah Eby said, but even though she sometimes works with ALS patients, it didn’t cross her mind that her sister might have the disease. “I thought it was going to be something common and fixable,” she said.
Statistically, there was little reason to suspect ALS. In the US, reports suggest that roughly 5000 people are diagnosed with the disease each year, most of them aged 55 to 75. ALS is also slightly more common in men than women.
But then her calf began to atrophy, and for the first time, a neurologist raised concerns about ALS.
Eby knew of the disease from the Ice Bucket Challenge, a social media campaign started in 2014 to raise awareness and funds, but she perceived it to be a disease that afflicts older men. (ALS is also called Lou Gehrig’s disease, named for the baseball player who died of the condition in 1941 at age 37.) When a test came back showing that she didn’t have a genetic predisposition to ALS, she and her family celebrated, not yet knowing that only 5% to 10% of cases are familial. Doctors still don’t know what causes ALS for the other 90% to 95%.
In September 2021, Eby decided to move closer to her family. After packing up her Manhattan apartment, she drove down the East Coast with her rescue dog, Dray, a Chihuahua mix. At a pit stop in Charleston, South Carolina, Eby fell once, then again, which concerned her enough to visit another neurologist back in Maryland. He ran more tests and told her he didn’t like what he was seeing. “That was the beginning of the end,” Eby said.
Eby’s father, Cliff, was playing golf in Naples, Florida, when he got the call that she had ALS. He had known something was wrong with her, of course, but maintained hope for a less severe outcome. “And so when the diagnosis finally came, it wasn’t easy,” he said.
The family took some comfort in learning that Brooke Eby was what doctors called a slow progressor. One in 10 people with ALS live more than a decade postdiagnosis, according to the ALS Therapy Development Institute. There was a chance she would be one of them.
Eventually, Eby told a small group of her closest friends, after texting them with the dreaded “Can we talk?” They cried, and she cried, but the conversations made Eby uncomfortable. Never had she considered herself the comforting type. “I’m more the person you come to when you want to laugh.”
She found relief in humour, and later in keeping a list of moments that had made her laugh since her diagnosis, including when a doctor told her she couldn’t afford to lose weight with ALS, and her sister joked, “You’re so lucky, you get to eat whatever you want.”
Eby started TikTok and Instagram accounts with the handle limpbroozkit – part of her name, sandwiched between the ’90s nu-metal band Limp Bizkit – and posted a few reels. She made the accounts public, with the hope that they would circulate among people she knew outside her closest circle. She didn’t expect strangers to care.
But saccharine though it may seem, and perhaps paradoxically, accounts like Eby’s can offer something in short supply on the modern internet: genuine inspiration.
Nora-Lee Rodriguez, the mother of a teenager with scleroderma, an incurable autoimmune disease, sees Eby in her feed and feels hopeful. “I think maybe my brain understands that Brooke’s situation is different, in the sense that it’s not the same diagnosis, but my brain enjoys the positivity, because I know that my daughter is 16, and I worry, What’s going to happen when she’s 30 or 32? For me to see Brooke putting a positive spin on things, it tells me that even though you are living with challenges, you can still try to be positive.”
Jenna Ohrn, who has a congenital heart defect and lung disease, followed Eby because she found commonalities in their experiences and got hooked on Eby’s humour. In an email, Ohrn wrote, “I always try and tell myself that I need to view life more as a sitcom rather than a drama, and it seems like Brooke has the same philosophy.”
Haley Post said she and her friends, mostly women in their 30s, have been following Eby on Instagram since shortly after she started posting. The fact that Eby is roughly the same age drew them in.
“For the most part, I feel pretty darn healthy and invincible, but that’s almost the thing with Brooke that’s so vexing. She was a Peloton girlie and a Pilates girlie. She was living in New York and setting the world on fire,” Post said. “It doesn’t really compute, and that’s what’s so confusing and fascinating about the whole thing. It’s like, oh, my gosh, this could be me, or this could be my friend or my sibling or a young mom or a young wife – or, you know, anyone.”
Since 2022, Eby’s frankness and geniality have helped her become a celebrity in the ALS world, and to some extent beyond it. In 2023, she appeared on the Today show and now has an agent to manage her speaking engagements. Her longtime employer, Salesforce, has flown her to its conferences on the company’s private jet. At hospital appointments, other ALS patients recognise her. “They’re like, ‘Hey, you’re that girl whose face I can’t get off my phone,’” she said.
People approach her on the street: Once, at the airport, a woman even recognised Eby’s father, a lovable side character in some of her videos. (Cliff Eby, a retired civil engineer, brings boomer-dad energy to her feed. In a recent video, he did a “fit check” and, upon realising his tie was Burberry, said it was “fancy like Applebee’s.”) She has appeared on Christina Applegate’s and Jamie-Lynn Sigler’s podcast. Lindsay Lohan follows her.
Eby is not out to maximise her online earnings, and the money she earns through social media is “not enough to fund a life”, she said. Roughly half of what she earns from TikTok, Instagram and partnerships goes to ALS organisations, and the other half helps pay for her caregiver, which is not covered by her insurance.
None of this is Eby’s fulltime job; she still works remotely for Salesforce, where she has been employed since 2016 and currently serves as a business development manager. But as Eby’s platform grows, so has her advocacy.
This autumn, she founded the non-profit ALStogether, a community on Slack where hundreds of caregivers and people living with ALS can connect and swap resources and information. Eby hopes it will help other people with ALS receive the type of support she has got from her followers, some of whom message her with tips, information or offers for free medical equipment (she accepts only items her insurance doesn’t cover).
Recently, her posts are leaning even further into the practical adjustments she has made as her condition worsens. She can no longer lift her arms above her head, so her caregiver helps her do her hair. Her mum recently purchased foam handles so she can better grip silverware, and they’ve installed a bidet “to get ahead of when my hands get super weak”. Her core is getting weaker, as is her voice. Sometimes, she uses a non-invasive ventilator to help her breathe better.
“I’m glad that I’m sharing my journey. I wish someone had come before me and shared, start to finish, because I still don’t know what it looks like two years from now when I can’t do anything, including talk. I’m like, how does that work?” Eby said. “So I’m just going to post all this, because maybe it’ll help someone who’s, like, a year behind me in their progression.”
She is hoping to plateau, a temporary ceasefire with ALS, which for some people can last years. Her followers want that for her, too. Some pray for her in the comments. Others type in all caps, “PLATEAU, PLATEAU, PLATEAU.”
“I feel like everybody kind of has the same skin in the game, where they are like, ‘Oh, my God, we can’t just let this girl die,’” Post said.
In December, on Giving Tuesday, when US shoppers fresh off the commercialised frenzy of Black Friday are urged to donate to charitable causes, Eby linked to various ALS organisations in her bio. “Thank you for all the thoughts and prayers,” she said, cruising along in her wheelchair. Then, flatly, “Now have you considered money?”
Eby recognises she’s in a unique position; she still has a voice, and she’s a natural on camera. For now, she’s focused on using her platform to have as much impact as possible. But at least part of it is still personal: “Sometimes when I’m posting, I’m like, I just want my friends and family to watch it after I die and be like, ‘Oh, look, I remember that day.’”
This article originally appeared in The New York Times.
Written by: Caitlin Moscatello
Photographs by: Gesi Schilling
©2024 THE NEW YORK TIMES
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