Brooke Eby did not intend to return to live with her parents, at the age of 36, in the suburban house where she grew up – a traditional-style house in Maryland, in the United States, with ceramic tiles on the wall and the family cat howling from the kitchen. But last summer, It became clear that living alone was no longer safe. Getting in and out of bed has become a challenge. One day, after a fall, she was stuck on the bathroom floor until her dog walker arrived. Eby’s arms had a new weight – the same feeling she felt in her legs before she lost 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 more pep talk, she added, “I need backup,” she said in a sharper, more playful tone. “help me”.
For most of his life, Eby kept a low profile online. But since being diagnosed with ALS, or amyotrophic lateral sclerosis, in 2022, Eby joined a niche group of terminally ill content creators documenting the progression of their illnesses on social media.
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She considers herself more of a video diary than an influencer: Most of her posts take viewers along as she shares health updates and shows the realities of living in a body that no longer works like 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.
“ I wish someone had come before me and shared it, from start to finish, because I still don’t know what it will be like in two years when I can’t do anything, including talking. ”
In one video, she joked about mainstream influencers receiving a new line of Louis Vuitton bags and her receiving a new line from Depends (a brand of absorbent and disposable underwear).
“It’s dark,” she said from her wheelchair in her parents’ living room, laughing.
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Her followers often laugh along with her – not because there is anything funny about ALS, a neuromuscular disease with a typical survival time of three to five years after symptoms appear, but because she managed to maintain a sense of humor despite her circumstances.
In August, Eby recorded as movers emptied her apartment (“my last solo apartment… until we find a cure,” she wrote). The post drew a line between her more independent life and this next chapter, where she needs help from her parents, both in their 70s, and a part-time caregiver.
The weight of that moment lifted in late October, when Eby appeared to have settled into the next phase of his life — as well as a makeshift, accessible room off the kitchen of his parents’ house. She said that, in retrospect, her followers — almost all of whom were strangers to her — made the transition easier. When one of them commented, “Girl, I came home for a lot less,” Eby laughed and was grateful for the dose of perspective. “Sometimes I forget how serious this is.”
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Without a medical breakthrough, Eby will eventually lose all physical functions, including the ability to speak. If she continues to post until the end of her life, as she plans, her followers will see her die. And yet, they still keep up. One 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 from San Francisco to New York when he felt tightness in his left calf. Within months, she developed weakness in her foot, limping enough for her coworkers to notice as they rushed to meetings in Manhattan.
Statistically, there was little reason to suspect ALS. In the United States, reports suggest that around 5,000 people are diagnosed with the disease each year, most of them between the ages of 55 and 75. ALS is also slightly more common in men than women.
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But then his calf began to atrophy, and for the first time, a neurologist raised concerns about the disease.
In September 2021, Eby decided to get closer to his family. After packing up her Manhattan apartment, she drove down the East Coast with her rescue dog, Dray, a Chihuahua mix.
Eby started TikTok and Instagram accounts with the handle limpbroozkit — part of his name, sandwiched between ’90s nu-metal band Limp Bizkit — and posted a few reels. She made the reports public, hoping they would circulate among people she knew outside her closest circle. She didn’t expect strangers to care.
But as saccharine as 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, 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 likes the positivity because I know my daughter is 16 and I worry: what will happen when she Are you 30 or 32 years old? For me, seeing Brooke putting a positive spin on things tells me that even if you’re living with challenges, you can still try to be positive.“
Since 2022, Eby’s outspokenness and genius have helped her become a celebrity in the ALS world and, to some extent, beyond. In 2023, she appeared on the “Today” show and now has an agent to manage her speaking engagements. Her longtime employer, Salesforce, flew her to its conferences on the company’s private jet. At hospital appointments, other ALS patients recognize her.
Eby doesn’t want to maximize his online earnings, and the money she makes on social media is “not enough to finance a life,” she said. About half of what she earns from TikTok, Instagram and partnerships goes to ALS organizations, and the other half helps pay for her caregiver, who isn’t covered by her insurance.
None of this is Eby’s full-time job; she still works remotely for Salesforce, where she has been since 2016 and currently serves as business development manager.
But as Eby’s platform grows, so does his advocacy. This fall, she founded the nonprofit ALStogether, a Slack community where hundreds of caregivers and people living with ALS can connect and exchange resources and information. Eby hopes this will help others with ALS receive the kind of support she has received from her followers.
“Sometimes when I’m posting, I just want my friends and family to watch it after I die and be like, ‘Oh, look, I remember that day.”
Recently, her posts have been leaning even more into the practical adjustments she’s made as her condition worsens. She can no longer lift her arms above her head, so her caregiver helps her fix her hair. Your mom recently bought foam handles so she can hold her cutlery better. Your heart is getting weaker, as is your voice. Sometimes she uses a non-invasive ventilator to help her breathe better.
“I’m happy to be sharing my journey. I wish someone had come before me and shared it, from start to finish, because I still don’t know what it will be like in two years when I can’t do anything, including talking. I’m like, how does this work?” Eby said. “So I’m going to post all of this because maybe it will help someone who is, like, a year behind me in their progression.”
She hopes to stabilize, a temporary ceasefire with ALS, which for some people could last years. Her followers want that for her too.
For now, Eby is focused on using her platform to have as much impact as possible. But some of it is still personal: “Sometimes when I’m posting, I just want my friends and family to watch it after I die and be like, ‘Oh, look, I remember that day.’”
Originally published no The New York Times.
