Endless Thread - Terminally Online

Episode Date: March 7, 2025

"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's since built an audience of hundreds of thousands of people who are rooting for, and laughing with, her. Sometimes it gets weird. Brooke talks to Ben and Amory 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 episode was written and produced by Grace Tatter. It was co-hosted by Amory Sivertson and Ben Brock Johnson. Mix and sound design by Emily Jankowski.

Support for endless thread comes from MathWorks, creator of MATLAB and Simulink Software, to design and develop engineered systems, accelerating the pace of discovery in engineering and science. Learn more at Mathworks.com. Support for WBUR comes from Is Business Broken, a podcast from the Marotra Institute at Boston University that explores questions like, why is innovation in healthcare so hard? Is ESG just greenwashing? of course, is business broken? Listen, wherever you get your podcasts. 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. Go for it. And you're allowed to swear 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 feel like 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 winter. 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 Eadie 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 he 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 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 Skyangles 911.com. I've been on the exposing people faking diseases for attention side of TikTok lately. I've got to say I'm a little offended that no one has accused me yet. I'm Ben Brock Johnson. I'm Amory Siebertson, 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, 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 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. I, 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, like, 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, she's like the kindest, 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 just like barely fit me. 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 at all. Don't be suspicious. Don't be suspicious. Don't be suspicious. 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 Bruise 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 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 falling. 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, that. Oh, dent. Let's just do it. Let's just do it. It's no victim. I think after those two, that was when I started seeing like, okay, people are remembering that they've seen me before. and they were saying like Brooke 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 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? 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 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 it's a very weird space to be in.

So Brooke is definitely not a full-time influencer. She still works a 9-to-5 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 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 is 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, A let's is 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. Support for this podcast comes from Nature is the Solution, a podcast from the Nature Conservancy. When it comes to the environment, it's easy to focus on doom and gloom. But that's not the whole story, especially when there are so many projects working towards bringing people and nature together. In this moment, optimism isn't naive. It's necessary.

Follow nature is the solution wherever you listen to podcasts and discover stories of impact and possibility. 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. There is something powerful about the sound of the human voice. Beautifully produced audio has the unique power to connect and inspire.

Tell your organization's story with a custom podcast. podcast from City Space Productions, the Creative Studio from WBUR's business partnerships team. Become a thought leader. Recruit new talent. Reach new audiences. Whatever your goal, we can help. Discover how the magic is made at WBUR.org slash creative studio. 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 blowout. 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 hands, 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 ban 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 at 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 it comes with this disease. I made that video and I was thinking like this is not a relatable feeling at all. 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. 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 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 two, 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. it'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 flash back to when I first got diagnosed, they give you this like, God forsaken 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? Like, you just start thinking in terms of, like, 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 in 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 E.B. and her dog, Dr. Dremond Green.

This episode was written and produced by Grace Tatter. It was co-hosted by Amory Severson. And me, Ben Brock Johnson. Mix and sound design by Emily Jankowski. The rest of our team is Frannie Monaghan, Dean Russell, Caitlin Harrop, and Meg Kramer. Our managing producer is Samantajoshi, and our production manager is Paul Vykus. Endless Thread 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.