AI Summary
5 min readRemembering Brooke Eby
"I don't even feel emotions because it doesn't feel real. It feels like I'm playing a role in a movie and then someone's gonna finally yell cut and I'm gonna just pop up out of my chair and go be normal again." Brooke Eby said that about a year ago, describing what it felt like to watch her own TikTok videos from the beginning of her ALS journey — when she could still walk — and compare them to the present, when she could only move her head and her one "shaky thumb." She died last week at 37. This episode, recorded in early 2024, is the conversation she had with Endless Thread about how she turned a terminal diagnosis into an online community built on gallows humor and practical solidarity.
The diagnosis that upended everything
Brooke was 29 when she first noticed tightness in her calf. She assumed she had overdone it at Pilates. But the symptom followed her from San Francisco to New York, where she kept getting bulldozed on the sidewalk because she was walking slower than everyone else. Colleagues pointed out she was limping. Her sister, a doctor, thought it might be a pinched nerve. The diagnostic process took four years.
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What you'll learn
- 1 (00:00) **Introduction & Tribute to Brooke Eby** - Hosts Ben Brock Johnson and Amory Sievertson announce the death of Brooke Eby at age 37 and set up the episode as a tribute, replaying their original interview with her.
- 2 (03:31) **Brooke Introduces Herself** - Brooke Eby joins the podcast, establishes her background, and explains her living situation after moving in with her parents.
- 3 (05:56) **Brooke's Humor and Stand-Up Comedy** - The hosts play a clip of Brooke doing stand-up comedy from her wheelchair, demonstrating her signature dark humor about ALS.
- 4 (07:26) **Brooke's Pre-Diagnosis Life and First Symptoms** - Brooke describes her normal relationship with social media in her 20s and the onset of her first ALS symptoms at age 29.
- 5 (09:12) **The ALS Diagnosis** - Brooke explains the four-year diagnostic process and the moment she was officially diagnosed with ALS in 2022.
- 6 (11:01) **Correcting Misconceptions About ALS** - Brooke reveals what she learned about ALS after her diagnosis, including that 90% of cases are not genetic.
- 7 (11:47) **The Dark Period After Diagnosis** - Brooke describes the initial months after her diagnosis as a dark time spent in bed and eating M&Ms.
+ Full timestamped outline available in the app
Show Notes
"Should I be joking at a time like this?"
That's the question then 33-year-old Brooke Eby asked herself when she uploaded her first piece of TikTok comedy in 2022, about being diagnosed with a terminal illness. Brooke built an audience of hundreds of thousands of people who were rooting for, and laughing with, her. Sometimes it got weird.
Brooke died due to complications with ALS earlier this month. She was 37.
In 2025, she talked to Endless Thread hosts Ben Brock Johnson and Amory Sivertson about how facing death changed her relationship with social media and online community.
Show notes:
- Brooke Eby's TikTok, Instagram, and YouTube
- ALSTogether
- When Your Terminal Illness Makes You a TikTok Star (The New York Times)
More from this podcast
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