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.