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, Md., 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, once deleting Instagram from her phone entirely because she didn’t want the distraction. But since being diagnosed with A.L.S., 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 A.L.S., 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 humor despite her circumstances. In a reel about “five things that definitely did not cause my terminal illness, but” (one that Eby calls “a real banger”), she shared that she had gone to a party in college where “they filled the baby pool with chocolate pudding, and we all got in and wrestled in it.” (Scrunching her face, she added, “There’s got to be some class-action on that party.”) In another post showing how the disease had progressed to her arms and hands, she explained that she now had to crawl her fingers toward objects in order to grab them, comparing herself to Thing, the roaming hand in “The Addams Family.”
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, however, 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. In person, Eby is very much the same as she is in her videos — witty, charismatic and open. 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?
A Diagnosis and a Decision
The 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, and 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 said. But even though Sarah sometimes works with A.L.S. 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 A.L.S. In the United States, reports suggest that roughly 5,000 people are diagnosed with the disease each year, most of them ages 55 to 75. A.L.S. is also slightly more common in men than women. Eby was relatively young, and so her sister wondered if a pinched nerve in her back was to blame. She suggested that Eby get an M.R.I. The results were inconclusive.
For the next two years, Eby’s limp continued to worsen. One day at a SoulCycle class, her friend noticed she was struggling to stand on the bike. “My friend was looking over and he’s like, ‘You’re in terrible shape,’ and I’m like, ‘No, I just can’t.’ My left leg was not supporting me on the down push.”
Her calf began to atrophy, and for the first time, a neurologist raised concerns about A.L.S. 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. (A.L.S. 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 A.L.S., she and her family celebrated, not yet knowing that only 5 to 10 percent of cases are familial. Doctors still don’t know what causes A.L.S. for the other 90 to 95 percent.
In September 2021, Eby decided to move closer to her family. After packing up her West Village apartment, she drove down the East Coast with her rescue dog, Dray, a Chihuahua mix. At a pit stop in Charleston, S.C., Eby fell once, and 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, Fla., when he got the call that she had ALS. He had known something was wrong with Eby, 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 Eby was what doctors called a slow progressor. One in 10 people with A.L.S. live more than a decade post-diagnosis, according to the A.L.S. 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 humor, 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.” By then, Eby’s only social media presence was an Instagram account for Dray and a TikTok account she used to watch videos about dogs or outfit ideas. (Before deleting her personal Instagram, Eby mainly posted photos of herself and her friends and family, sometimes with bad movie quotes for captions.) But her longtime friend Chris Equale, who was one of the creators of a popular dog account with millions of followers on TikTok, Instagram and YouTube, encouraged her to share her story more widely.
“My biggest advice for her was, ‘Everyone wants to root for you, so don’t be shy about what you want to share,’” Equale said. “Brooke said to me, ‘Well, what’s the worst that can happen, I could get a terminal illness, right?’”
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 based on the funny moments she had added to her list. (One of her earliest videos was a clip of her dancing at a friend’s wedding, using the same walker as the bride’s grandma.) She made the accounts public, with the hope that they would circulate among people she knew outside of her closest circle, sparing her more teary conversations. She didn’t expect strangers to care.
A New Type of Influencer
Before the online influencer, only a select few became poster children for the diseases that defined their eras. A teenage Ryan White came to exemplify the AIDS crisis in the 1980s. Donald Anderson was a face of polio in the 1940s. Their stories were processed, packaged and distributed through a national media and nonprofit apparatus.
Now, people like Eby control their narrative and can use social media platforms to show the personal, day-to-day minutiae of living with a terminal illness. Eby’s first post to hit one million views on TikTok was a series of messages she received from men on a dating app, after telling them she used a cane. (A sampling: “If I bring my light saber, we can do battles,” “You’ll fall for me before we even get dinner,” “Order another cane because girl u got me trippin.”)
Much like Eby, many successful influencers with terminal illnesses are female and young, or young for their disease. Their relative youth only punctuates the loss when they’re gone. In May, Madison Baloy, who shared her life with Stage IV cancer with almost half a million followers across TikTok and Instagram, died at age 26. In October, Rachel Yaffe, a 27-year-old creator with liver cancer, passed away. Days later, Bella Bradford said goodbye to her followers in a video she had recorded before dying of a rare soft-tissue cancer. “Remember that you live every day, but you only die once,” she told them. She was 24.
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 humor. 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.”
Social media is an arena rife with trolling, and yet Eby has found herself on the receiving end of an onslaught of compliments and well wishes. “I tell my friends, my ego’s never been bigger,” she said. Eby estimates that 98 percent of the messages she receives are positive. The other 2 percent, “They’re not mean, they’re just weird.” Or tone deaf: She once received a message from a woman commiserating that being single similarly felt like a “death sentence.” “I sent it to one of my friends, and we were speechless,” Eby said. “My one friend who is Gen Z, she was like, ‘That girl is the manager of Delulu-lemon.’”
Increasingly, however, some seem to be watching out of a morbid curiosity. In October, Eby posted a video about how much her A.L.S. had progressed in the months prior, where she strained to lift her arms above her shoulders and zoomed in on her shaky hand. It resulted in a surge of new followers. “I’m like, ‘How would someone jump in now?’ It’s so crazy to me,” she said. “If I post, ‘I feel great today,’ I probably wouldn’t get any, but if I say, ‘This is worse,’ it seems like people are, like, brought in.” She doesn’t fully understand their curiosity — if the situation were flipped, “I’m not sure I’d watch,” she said — but welcomes it.
Haley Post says 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.”
In almost all of Eby’s videos, she looks directly into the camera when she talks, as though making eye contact with the viewer. Most influencers record in a similar fashion, and it’s part of the reason they are so effective at making their audience bond with them, said Gayle S. Stever, a professor of social and behavioral sciences at Empire State University of New York, who has studied parasocial relationships for more than three decades.
“The connections that we form parasocially have the same potential to have a real impact on us,” she said. “One question I get asked often is, ‘Why do people grieve for people who die that they’ve never met?’ And it’s because you’ve gotten to know this person, and you’ve developed familiarity with the hallmarks of human interaction, which are the face and the voice.”
Eby’s followers can get emotional when talking about her. They feel they really do know her, even as they recognize that the connection goes one way. “Knowing it’s a terminal illness makes me that much more dedicated and committed to wanting her to know that we’re here for her and that she’s not alone,” said Shruti Saini, one of Eby’s followers. Even though she anticipates that it will be difficult to see the disease progress, “It would be harder to not want to know, How is she doing? How is my friend doing?”
‘I Wish Someone Had Come Before Me’
Since 2022, Eby’s frankness and geniality have helped her become a celebrity in the A.L.S. 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 A.L.S. patients recognize 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 recognized Eby’s father, a lovable side character in some of her videos. (Cliff, a retired civil engineer, brings boomer-dad energy to her feed. In a recent video, he did a “fit check” and, upon realizing 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 maximize 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 A.L.S. organizations, and the other half helps pay for her caregiver, which is not covered by her insurance. She’s also deliberate about her partnerships. When the National Funeral Directors Association approached Eby about working together, she agreed to collaborate only if the video was about “the concept of getting your affairs in order, because nobody actually knows what that means.’”
None of this is Eby’s full-time 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 fall, she founded the nonprofit ALStogether, a community on Slack where hundreds of caregivers and people living with A.L.S. can connect and swap resources and information. Eby hopes it will help other people with A.L.S. receive the type of support she has gotten from her followers, some of whom message her with tips or 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, and so her caregiver helps her do her hair. Her mom 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 noninvasive 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. “I know people that I can ask, but I can’t be like: ‘Can you post a video of you going to the bathroom? I need to see how that physically works, how you get there.’ 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.”
In late November, after flying to Denver for a speaking engagement, Eby announced online that she was “soft launching” her decision to no longer travel. Some of her followers urged her not to give up that part of her life, but even in the few weeks since she left Potomac for Florida, where Eby is living with her parents for the winter, it had become too taxing.
“The leg weakness is one thing,” Eby told her followers. She had a wheelchair for that. “There’s really nothing to replace your arms.” Now, she finds herself battling with two separate thoughts: Part of her is still optimistic, “because otherwise I don’t know why I’d be getting up every day,” and the other is “very practical” and frustrated that there haven’t been more medical advancements since her diagnosis. In a calm but uncharacteristically resigned tone, she said on a recent Zoom call, “I’m not expecting a cure in my time.”
Instead, she’s hoping to plateau, a temporary cease-fire 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.
Earlier this December, on Giving Tuesday, when shoppers fresh off the commercialized frenzy of Black Friday are urged to donate to charitable causes, Eby linked to various A.L.S. organizations 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 recognizes 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.’”
The post When Your Terminal Illness Makes You a TikTok Star appeared first on New York Times.
