Endless Thread - Remembering Brooke Eby

Episode Date: October 9, 2026

"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) This episoded was written and produced by Grace Tatter. It was co-hosted by Ben Brock Johnson and Amory Sivertson. Mix and sound design by Emily Jankowski.

that brought you Wanda Vision. I was an Avenger, but I'm not a hero anymore. On October 14th, the Vision returns for the final chapter of the groundbreaking trilogy. That family wasn't real. You sure about that? I had a father called Vision.

How is this possible? Don't miss the two-episode premiere of Marvel Television's Vision Quest. Nothing bonds a family together quite like Mortal Jeopardy. Streaming October 14th, only on Disney Plus. Morning hockey with a cup of coffee to Timbits and road trips.

Tim's and Canadian tire have always gone together. Now it's official. You can now earn Canadian tire money at Tim's. Link your Triangle Rewards and Tims Rewards accounts to earn twice with every Tim's run. Terms and conditions apply. Visit timhordens.com slash triangle for details. Early last year, we spoke to someone on the show whom I haven't stopped thinking about. Brooke Eby.

Brooke was diagnosed with ALS in 2022. when she was 33 years old. She educated people on the disease by documenting her experience with it on social media. And remarkably, she did it with humor. When we talked to Brooke, she was already in a wheelchair and she was losing mobility in her arms and hands.

Since that episode came out, we watched, along with her hundreds of thousands of online followers, as she lost her remaining mobility. I still have one shaky thumb that works. As she transitioned to life on a feeding tube and a bi-pat breathing machine. Okay, physically I feel like I'm talking corpse. And as her voice became weaker and weaker.

Am I not ready to give up talking? All well seemingly never losing that sense of humor, even on some very hard days. I don't think people realize that I'm afraid of the death penalty at this point. Brooke E.B. died last week at the age of 37. The ALS community and her online community have been sharing their grief and their gratitude for her in the days since.

People who felt like they knew Brooke just from following her story online. She was the first person I ever connected with the head ALS. She actually encouraged me to start sharing my own journey. Brooke was way too funny to die. She was. Rest in peace, Brooke, you would have loved your comic section and all the jokes that people are telling. As our own tribute to Brooke Eby, we're listening back to our episode with her and sharing her humor and her story again.

Give it a listen and then go hug your peace. people. Here's the show. WBUR Podcasts, Boston. Brooke, thank you so much for hanging out with us. Thanks for having me. This is all pre-recorded, so you may hear us stumble over things, questions that we want to ask you, in which case we'll just do them again. Feel free to do the same if you start an answer and you want to say it differently. Sounds good.

And you're allowed to swear it because it's a podcast. Noted. If that's your jam. It's actually like my New Year's resolution is to do it less, so I'm trying not to. But like I think that's such a cliche New Year's resolution that never really sticks, you know? No, I don't know anyone who's trying to swear less. I think in these times people are swearing more. Yeah, it's the inverse, perhaps.

I'm Brooke Eby. I'm currently in Florida. I'm here for the winters. So right now it's like 80 degrees, which sorry if that's, if you guys are Northeast. I'm in Maryland for the summer. So I used to be Maryland year-round, and now that I live with my parents, I get to just mooch off of their snowbird lifestyle. Brooke Eby is 36 years old. Until recently, she was living alone with her dog, Dr. Dreymond Green, named for the basketball player.

Last fall, Brooke and Dre moved in with Brooke's parents, who mostly live in Maryland, but make like geese in the winter, and head south. Brooke did not take the decision to, to use her word mooch off her parents lightly. First, she consulted her nearly 200,000 followers on TikTok. I need advice, people. In this TikTok video from last summer, Brooke is outside. She's talking into her phone, which is positioned below her face. It has that look of an impromptu FaceTime call from a friend. I just need reassurance.

Maybe I just need someone like cheering me on that this is the right thing to do. or like stories and pep talks of moving back in with your parents at the age of 35 is okay. The big like regression feeling. So I don't know. I need reinforcement. Help me. Brooke sent this message out to her nearly 200,000 followers. More than 1,700 people commented.

There was nary a negative response in the bunch. They were all like, it's a reconfiguration, not regression, and save money. Brooke has a lot of followers, thanks in no small part to her humor, which can be pretty edgy. Here's her doing a stand-up set for a crowd. She's joking about people who have Lou Gehrig's disease, also known as ALS. I want to be clear, Stephen Hawking is an absolute legend. But did we make ALS cool? Brooks' stand-up was a sit-down affair, because Brooks in a wheelchair.

For the past three years, Brooke has been living with a term. terminal diagnosis. And through almost all of it, she's been posting on TikTok. What if I could like walk and move again? And I just became like an insufferable dance talker. My top is old navy. My pants are Amazon. My headband is Lily. And my life alert necklace is Skyangels 911.com. I've been on the exposing people faking diseases for attention side of TikTok lately. I'm going to say I'm a little offended that no one has accused me yet. I'm Ben Brock Johnson. I'm Amory Severson, and you're listening to Endless Thread, coming to you from WBUR, Boston's NPR.

And today, we talked to Brooke about making jokes through hard times. Brooke was not a naturally inclined social media star. What was your relationship with social media during your 20s? At the beginning of my 20s, Instagram was much more like, Do you remember those extra filtered pictures that we were all putting up? Of course. Do I? With like the borders.

Like, that's what Instagram was. It was no one had stories. It wasn't very oversharing. And then I think it got, you know, more and more advanced later in my 20s. But I was normal on it. I just, I was private just to my family and friends. After graduating from Lehigh University, Brooke then worked in tech. She spent most of a decade bopping between coasts.

And then when I turned 29, I was moving back to New York from San Francisco. And when I was in San Francisco, I started feeling like tightness in my calf. But I thought it was like, you know, when you're 29, you're like so oblivious and naive. I was like, oh, I just like did too much Pilates. I'm that in shape that my calf hurts. That symptom became harder to ignore on the streets of Manhattan. Like, you know pretty quickly that you're walking slower in New York City. because people are just bulldozing you, and I'm like, this feels funny.

But again, I just didn't pay attention to it. I ignored it, really until some of my colleagues started pointing out that I was limping. At first, Brooke talked to her sister, who's a doctor, to see if she had any idea of what was going on. Her sister thought maybe Brooke had a pinched nerve. Doctors outside of the family were just as flummoxed. We were all sort of delusional that I was perfectly healthy at 29, but that kind of kicked off like the whirlwind of the four-year diagnosis process. In 2022, Brooke started losing her balance more often.

So she went back to the doctor. The weakness that had started in her left leg had moved to her right. That was enough to confirm a diagnosis, ALS, a neurodegenerative disease commonly known as Lou Gehrig's disease, after the Yankees' first baseman, who was diagnosed with ALS at the peak of his sports career in 1939. A fatal disease attacked baseball's Iron Man. That I might have been given a bad break, but I've got an awful lot to lift for.

As ALS progresses, you lose the ability to make most voluntary movements, like walking, chewing, swallowing food, and eventually breathing. Patients are usually given a life expectancy of two to five. five years, although younger patients often live for longer. What was your knowledge of ALS before this, or what was your exposure to it? What did you know about it? I clearly knew nothing about it because I thought, in my mind, it was a genetic, mostly genetic disease that affected older men and was super rare.

Like, those were the three things that I was pretty sure of going into it. And then I also was told it moved so fast that, you know, in a matter of months, you're, like, paralyzed if not dead. And I'm like, well, I've been dealing with this for four years. So I just don't get. And I'm like a young woman with no genetic markers. Like they even tested my genes and they came back clear. So I just was so wrong about everything. It turns out like 90% of cases are not genetic. So didn't rule anything out there. It's not nearly as rare as I thought it was, and it affects anyone at any age. Like, it truly does not discriminate. So everything I thought I knew about it was wrong. Like, I remember the ice bucket challenge, but mostly because I didn't get nominated and I felt really unpopular. Remember the ice bucket challenge of 2014, Ben?

I remember the viral dump a bucket of ice water on yourself after someone nominates you part, but I completely forgot that this was about raising money to cure ALS. maybe because nobody tagged me. Well, nobody tagged Brooke either. I'm like, man, I'm in no one's top three. Like, give me a break. The initial few months after the diagnosis were rough. All I had been doing was lying in bed and eating M&Ms every day.

It was just, it was like, it was a dark time. Reading a lot of books. I think I was reading like a book a day to escape. I know my good reads was fire that year, and it will never be that high again. In between tearing through books, Brooke had to tell everyone she knew that she was dying, which made people uncomfortable. Because no one knows what to say. Like, I remember we were at the doctor, like at the neurologist,

and they were like, well, with ALS, you really need to focus on gaining weight. So like, eat whatever you want, eat as much as you want. And my sister goes, you're so lucky. And like, I just remember, like, immediately pulling out my phone and being like, we're going to remember that one. My poor sister, I use it all the time. And she's like the kindest, the kindest one of our family. And I'm always throwing her under the bus with that story.

Brooke started keeping a little note on her phone with some of the funny moments related to her diagnosis. But she wasn't sure anyone else would see the humor in a situation that was also pretty bleak. So she kept the note private until a wedding where she was supposed to be a bridesmaid. I was like, you've got to be kidding me. The bridesmaid's dress like barely fit me because I, again, the M&M's. And then I showed up with a walker. And as soon as I walked in, the bride's grandma showed up with the exact same walker. Like I looked down and I was like, oh, she has tennis balls too.

So we were like kind of like, hey. But I turned to my friend and I was like, we're out of here. Like there's no way I'm going to walk down the aisle with his walker as a bridesmaid. Like, no chance. And my friend, not the bride, I told that to my friend in secret. And she was like, it could be really embarrassing or we could just try to make it really fun. Like, you're going to get a good story out of it. Just go for it.

You know, we made it through the ceremony. And then by the reception, I think, I don't know if like my embarrassment had worn off or if I just kind of forgot about it. But we had like the best time on the dance floor. Like the bride was doing the limbo under my walker. People were hopping on for walker rides. And I was like, okay, everyone's laughing. I'm way more comfortable because the prior two months, I had just been having, like, tearful conversations telling people about my diagnosis

and being like, all right, go, I ruined your day, like, go enjoy. And so this was the first time I'm like, all right, people aren't even asking me what's going on. They're just, like, trying to have fun. When Brooke got home, she started going through the note on her phone, detailing all the funny moments since her diagnosis. The next day, she had brunch with the same friend who cheered her up, at the wedding. Jackie. Brooke showed Jackie the note on her phone. And she was like, Brooke,

you need to do something with this. Like, what are you, this can't just live here. I forced her to be in my first video because I'm like, if we are going to be embarrassed, you're going down with me. The very first video is a Brooke and Jackie on a couch pantomiming the conversation where Brooke discloses that she has a rare terminal illness. Brooke's head is in her hands. She's pretending to cry. But Jackie is smiling wide with deep dimples, the bullion. Maybe they'll name it after you, she says, in the caption. The videos that follow are very vintage 2022 TikToks, heavy on popular sounds like this one, with the footage from the wedding that started it all.

That's played after a caption of Brooke saying she doesn't want to draw attention to her diagnosis. while you see Brooke and her walker absolutely being the main characters on the dance floor. Brooke's terminal illness and her willingness to laugh about it were immediately the cornerstone of her schick. She uploaded the videos under the handle, Limp Bruze Kit. Fred Derriss, anyone? Limp Biscuit? No? Amory? No?

I get it. Brooke had no idea if anyone would find her videos funny. Maybe they would just find them sad. So that's why my first couple of videos, I was always kind of nervous because I'm like, should I be joking at a time like this? I don't know. That'll make total sense to me. And I also think humor has always been this way of like dealing with darkness, right? I agree. I think like, especially with COVID and like during and post-COVID life, like the whole concept of meme culture, like we can make a joke out of absolutely anything.

Like we're quick now. Like people just need humor, I think, to process things. Can you talk a little bit about when you started to realize that you were really gaining traction with the stuff that you were putting on the internet? When I first started seeing like my follower account go up and all of that, it was probably like my dating videos early days when I was using a cane. These videos feature screenshots of the texts she got from potential suitors. Things like, can I borrow your cane? I feel myself fallen.

Or, okay, I see you Abraham Limpin. Next, Brooke started making videos about this medicine she was taking as part of a trial. Medicine that tasted really bad. So I did like a taste testing series so people could suggest like how to chase it or how to deal with it. Pickle juice. Chop, guys. Oh, stench. Let's just do it.

Let's just do it. It's no big time. I think after those two, that was when I started seeing like, okay, people are remembering that they've seen me before and they're saying like, Brooke, blah, blah, blah, blah. Like, they remembered who I was as opposed to it just being another like swipe away video. But it is hard, I think, still to understand any sort of impact you make if it's just on the internet. Because it's, I don't know, sometimes it feels like I'm playing the Sims. Like I see the number of people watching and I see all the comments. But it's strange because, like, ultimately, I'm talking to my phone and then I'm clicking a button, and then I'm seeing little internet sims pop up as commenting.

Like, I'm like, how is any of this real? It's just, it's strange because everyone's like, you're so brave. I'm like, I'm actually just talking to myself in my room. Do you identify as an influencer? Do you think of yourself as an influencer? No. What's your relationship to that term? I don't. I don't really have one. Like, the stuff that I, like, influence on is much. more niche. It's like if you need adaptive clothing, I've got a recommendation. But it's not like everyone's going to go out and sell that out because it's not a need for most people. That's what I was going to ask. What are the products that you would influence on?

Yeah. You should see the partnerships that reach out to me. I always crack up picturing like my manager versus like a normal person's manager because like she gets calls from like the National Funeral Directors Association. And I'm like, Sure, sure, sure. That's a perfect fit. Like, it's just a very weird space to be in. So Brooke is definitely not a full-time influencer. She still works a nine to five job in tech, with only the occasional funeral spawncon. Funeral directors help with every step of end-of-life planning.

You can document your wishes and understand the logistics. So if I want to play Keshe's die young, noted. Unlike other viral creators, Brooke doesn't get a lot of hate online, but she does get comments that are pretty, weird. Someone wrote me a message this poor person because I don't even know who it was. It was some stranger.

But she was like, sometimes I feel like I have a death sentence because I've been single for so long. Oh. Wow. And it's just like, in her heart, she's not trying to be mean to me. Right. There's also

this layer of like pity or sort of like people. being like, oh, you're, I'm so like, you make me feel more, yeah, you make me feel thankful for every day because your life is so terrible. Right. Yeah. Like what is, what does that feel like for you to receive? Because you seem like very open and non-judgmental in some ways, but also you can see the humor in the ridiculousness of the way people act towards you. So I, that's what I was trying to ask about, if that makes sense. Yeah, I actually had not even thought about that. And then someone messaged me

once and they're like, do you ever get sick of like being the reason people want to be a better person? And I'm like, I didn't, I'd never really thought about it. But once you said it now, I'm like, I do, it kind of is in the back of my head sometimes when I get comments like that. But they have to be phrased in a very specific way for it to be a little obnoxious. You know, like most of the time, if someone's like, I want to appreciate every day, like to me, that's a great comment. I'm like, good. If someone were to say like, you know, I should feel lucky because like my life isn't as shitty as yours, then I'd be like, okay, like that phrasing I don't think I would like. But I don't know that people phrase it like that. I don't remember seeing it at least. I would say the feedback. Feedback is a gift. The feedback that I get is especially at the beginning was you're making light of this or like you seem too happy. and I think honestly most of the people who are making those comments are probably ones who had like a first-row seat to someone living with this and are still feeling like angry at the disease.

At least that's the backstory I've given them because otherwise like what do they care? But I think in my mind I'm like I'm not reframing it. I just wasn't that progressed like it wasn't that hard at that point. And now that it's gotten worse, like there's not going to. be as many videos of me being like, hey, that's no big deal. Like, it's just the nature of progression. So I'm like, just stay along for the ride. And if you want to see things get worse, like, you will with this disease.

So stick around. I am a bona fide boomer. We just hit it at the right time. The right time to accumulate power, voter influence, and wealth. Boomers were born into a time where there was greater economic prosperity and a greater chance of upward mobility. It's an odd feeling that my grandkids are not going to have that situation for them. I'm Megna Chakra-Bardi, host of On Point from WBUR.

Look out for our special series. It's called Senior Class, Gerontocracy in America. So be sure to follow On Point wherever you get your podcasts. At Radio Lab, we love nothing more than nerding out about science, neuroscience, chemistry. But we do also like to get into other kinds of stories. Stories about policing or politics, country music, hockey, sex, of bugs. Regardless of whether we're looking at science or not science, we bring a rigorous curiosity to get you the answers. And hopefully make you see the world anew.

Radio Lab, adventures on the edge of what we think we know. Wherever you get your podcast. Every episode of Planet Money begins with a question. Can we help people rise out of poverty by improving the neighborhood where they live? What would you build on a piece of land? when all the normal rules go out the window. What do robot chefs mean for the restaurant industry? Planet Money helps you find answers by going to places,

watching people, and sometimes robots at work, and asking questions. Listen to Planet Money on the NPR app or wherever you get your podcasts. Watching all of Brooke's videos in one day is kind of like reading a flip book of how ALS progresses. In the early videos, Brooke doesn't look that far off from, say, one of the famous beauty influencers, like Alex Earle. She does her makeup and get ready with me videos. Her shampoo commercial hair always looks like she's just had a blow out. She lives alone in a cool apartment.

Now she needs around the clock care. Thus, the difficult decision to move home. How would you describe your mobility right now? Like a rag doll. Like nothing really works. I mean, this, like I can raise my hand. but like their claws now. I'm really not into the way they look.

I can still type, especially on my phone, I can still type keyboard. A lot more typos these days. And I can like move my head and talk. But below the screen, it's like, it's a mess. Before the TikTok band briefly went into effect in January, Brooke made a video about how it felt to go back and watch her own content from the beginning.

It's so surreal. The amount that we've had to adapt, three years ago I was walking. And now I can't do anything. 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 going to finally yell cut. And I'm going to just pop up out of my chair and go be normal again. Day to day, I think it's easy for me to,

just rely on like humor and staying busy to cope. But then like in that video, I just look back in all these videos from a year before, two years before, five years before. And I was like, oh my God, I did not realize.

I knew how much had changed, but I don't know, seeing myself just a year ago versus today was startling. I don't think our brains are meant to compute the speed of change that comes with this disease. Like, I made that video, and I was thinking, like, this is not a relatable feeling at all. Like, I mean, I just feel like I'm an actress playing a role right now. Like, this doesn't feel real.

And people are like, no, that's called dissociation. Like, that's very much a psychological term that most people go through. And I was like, oh, okay, you can tell I'm, like, not actively in therapy all the time. In your videos, you've been documenting all along the way, the progression of the disease. and how it's changing your life day by day, implement by implement that you're adding into your routine. But there will come a time when you can't verbalize anymore, when you can't use your voice and use your humor in the way that you use it now.

Do you think you'll still be making videos? Have you thought about what the content creation process might be then? Yeah, I mean, there are some people who go the full progression while still having a voice, and I'm still delusional enough to think I'm going to be one of them, even though my voice is clearly getting weaker. I'm still not slurring, which makes me happy because I'm like, people can still understand me. But that said, like, I have voice banked. I do have my voice saved so I can use it in some sort of like text to talk thing. That's a big thing in the ALS community.

as soon as you get diagnosed, they're like, start saving your voice. But I think my intention is like to keep going really as far as I can't. Like I think the way that looks might be a little different. Like rather than, you know, me talking a ton, it might be like my parents helping talk or like filming stuff. Or maybe it's just, you know, not talking and I'm just like putting music over something I'm doing. Like I think there's options. My goal is really to show everything just because that's what I wish someone had done. I would love to see someone who's more progressed than I am get into bed or stay asleep.

Like how the hell do you stay asleep when you can't move and you get uncomfortable or something falls asleep? Like those are the things that I'm like, I don't want to watch a whole sad documentary just to sort of like try to glean insights of how to do things when like I could just make a. two-minute video of this is what we're doing now. It might not work next week, but it's working right now. So that's the goal. I mean, man plans, God laughs, I think people say, but that's the plan for now. Brooke doesn't know exactly how much time she has. Maybe she has five years. Maybe she has 10 years. What she does know is that curing ALS is going to take more resources. Social media, whether it's the ice bucket challenge, or a TikToker raising awareness can build community around ALS.

But it's not going to cure the disease. That takes research, which has a price tag. Thank you for all of the thoughts and prayers. Have you considered money? Right now, ALS researchers are facing proposed funding cuts by the Trump administration that could drastically slow down their efforts. So if you're a billionaire, says Brooke, Maybe forget about rockets and Mars and take up funding ALS research as your cause.

I feel like the other planets have already made it here. And we just haven't been told about it. So I'm like, why don't we just ask them what it's like before we go waste all our money going there, you know? On TikTok, Brooke is a one-woman ice bucket challenge, raising awareness of ALS and what it's like to live with it. But going viral prompted her to start another online community. one that's more specific. So if you think about my last two and a half years after being diagnosed, I put myself in front of an audience.

And because of that, I have access to so many more resources because I have 200,000 people willing to answer a question I have. If I were to post like, you know, I could really, I really need advice on the best toothbrush for weekends. I can get a thousand messages back, whereas someone who's like not a psycho putting her life online, like a normal person living with this disease, they could go to their support group. I don't know how fast they'll get a response. Like there's just not as immediate of answers as I've been able to get.

So I kept thinking about that. Like how do I make it so everyone has this level of access and this level of immediacy. And then I flashed back to when I first got diagnosed, they give you this, like, Godforsaken packet. It's like an encyclopedia size. And it's just pamphlet after pamphlet of resources. And like, you've just gotten diagnosed. They tell you you have two to five years. It could be less than that. And you're going to lose every ability until that point. So like, you go home and your brain is just scrambled. And you're also like, am I going to be paralyzed tomorrow? you just start thinking in terms of speed.

Like everything moves so fast. And yet the resources they give you are in a folder with paper that none of us has used since elementary school. Like I'm like, if this disease moves fast, like why are we still treating it like we're in the 90s? Like we've got to do better than this. Brooke's day job is at the tech company's Salesforce. She worked with some of her colleagues there

to create a channel on the professional group messaging app Slack. It is specifically for ALS patients and their caregivers. And it's called ALS together. And Brooke says it's really special to her because it's a rare space where people are going through similar challenges. Even when I'm talking to my best friends in the world who I've known since we were four years old, I could tell her anything. But like right now, she's about to have her second baby at the same time where I'm learning how to use a ceiling lift to get me into the shower. Like we lead two very different lives. I think it's probably the same way that like moms feel after they have a baby where they're like, I could complain to my friends, but unless they

have a newborn too, they don't get it. Like that's probably how everyone feels about something in their life. It's just, it's good to see other people whether they live near you or look like you going through the same thing because you're like, okay, I'm normal and this group, you know. Brooke, it was so fun to talk to you. Yeah, thank you. You too. This is a fun little Friday.

Thanks for having me. Yeah, thank you for doing this. And, you know, give that dog a hug for us. Oh my God. Yeah. You, like, now you have to go look at my Instagram and see what he looks like. I will. Same.

Because he's the warmiest little thing. Like, you never expect such a loud bark. Thank you to Brooke Eadie. her dog, Dr. Dremond Green. This episode was written and produced by Grace Tatter. It was co-hosted by Amory Sebertson and me, Ben Brock Johnson. Mix and sound design by Emily Jankowski. The rest of our team is Franny Monaghan, Dean Russell, Caitlin Harrop, and Meg Kramer.

Our managing producer, Samantajoshi, and our production manager is Paul Vykes. Endless Threat is a show about the blurred lines between online communities and humor to get through the hard times. If you have an untold history and unsolved mystery or other wild story from the internet that you want us to tell, hit us up. Endless thread at wbUR.org.