Terminally Online

"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 https://www.tiktok.com/@limpbroozkit?lang=en, Instagram https://www.instagram.com/limpbroozkit/?hl=en, and YouTube https://www.youtube.com/@limpbroozkit ALSTogether https://www.alstogether.org/?utm_source=hoobe&utm_medium=social When Your Terminal Illness Makes You a TikTok Star https://www.nytimes.com/2025/01/02/well/brooke-eby-als-tiktok-instagram.html (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.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Speaker 00

  Support for this podcast comes from Is Business Broken?, a podcast from the Marotra Institute at BU Questrom School of Business. A recent episode explores how AI is reshaping our schools. Stick around until the end of this podcast to preview the episode.

• 0:17Speaker 01

  Life is all about making decisions. Sometimes you make questionable ones, like buying a new TV that's too big for the wall because the electronics store employee was a little too good at their job. Then sometimes you make great ones, like protecting your home and auto with Progressive. You get customized coverage options so you can be sure you have the right coverage. Get your quote today at progressive.com. Progressive Casualty Insurance Company affiliates and other insurers. Not available in all states.

• 0:47Speaker 02

  Your sausage McMuffin with egg didn't change, your receipt did. The sausage McMuffin with egg extra value meal includes a hash brown and a small coffee for just $5. Only at McDonald's for a limited time.

• 0:59Speaker 03

  Price and participation may vary. Promotion pricing may be lower than meal pricing.

• 1:02Speaker 04

  WBUR Podcasts, Boston.

• 1:13Ben Brock Johnson?

  Brooke, thank you so much for hanging out with us.

• 1:16Speaker 06

  Thanks for having me.

• 1:18Amory Sivertson?

  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, go for it.

• 1:32Ben Brock Johnson?

  And you're allowed to swear because it's a podcast.

• 1:35Speaker 06

  Noted.

• 1:35Amory Sivertson?

  If that's your jam.

• 1:37Speaker 06

  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?

• 1:46Amory Sivertson?

  No, I don't know anyone who's trying to swear less. I think in these times, people are swearing more.

• 1:51Speaker 06

  Yeah, it's the inverse, perhaps.

• 1:56Speaker 06

  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'm, 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.

• 2:15Amory Sivertson?

  Brooke Eby is 36 years old. Until recently, she was living alone with her dog, Dr. Draymond Green, named for the basketball player.

• 2:24Ben Brock Johnson?

  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.

• 2:44Speaker 06

  I need advice, people.

• 2:46Ben Brock Johnson?

  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.

• 2:57Speaker 06

  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.

• 3:16Ben Brock Johnson?

  Brooke sent this message out to her nearly 200,000 followers. More than 1,700 people commented.

• 3:22Amory Sivertson?

  There was nary a negative response in the bunch. They were all like, it's a reconfiguration, not regression, and save money.

• 3:31Ben Brock Johnson?

  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.

• 3:46Speaker 06

  I want to be clear. Stephen Hawking is an absolute legend. But did he make ALS cool?

• 3:54Ben Brock Johnson?

  Brooke's stand-up was a sit-down affair, because Brooke's 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.

• 4:12Speaker 06

  What if I could like walk and move again? And I just became like an insufferable dance talker?

• 4:21Speaker 01

  My top is Old Navy, my pants are Amazon. My headband is Lily and my Life Alert necklace is SkyAngels911.com.

• 4:29Speaker 06

  I've been on the exposing people faking diseases for attention side of TikTok lately. Got to say, I'm a little offended that no one has accused me yet.

• 4:43Ben Brock Johnson?

  I'm Ben Brock Johnson.

• 4:45Amory Sivertson?

  I'm Amory Sivertson, and you're listening to Endless Thread, coming to you from WBUR, Boston's NPR.

• 4:51Ben Brock Johnson?

  And today, we talk to Brooke about making jokes through hard times.

• 5:09Ben Brock Johnson?

  Brooke was not a naturally inclined social media star. What was your relationship with social media during your 20s?

• 5:17Speaker 06

  At the beginning of my 20s, Instagram was much more like, do you remember the, those extra filtered pictures that we were all putting up?

• 5:24Amory Sivertson?

  Of course.

• 5:25Ben Brock Johnson?

  Do I?

• 5:25Speaker 06

  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.

• 5:41Ben Brock Johnson?

  After graduating from Lehigh University, Brooke then worked in tech. She spent most of a decade bopping between coasts.

• 5:49Speaker 06

  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.

• 6:11Ben Brock Johnson?

  That symptom became harder to ignore on the streets of Manhattan.

• 6:15Speaker 06

  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.

• 6:32Ben Brock Johnson?

  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.

• 6:44Speaker 06

  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.

• 6:54Ben Brock Johnson?

  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.

• 7:06Ben Brock Johnson?

  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.

• 7:22Speaker 02

  A fatal disease attacked baseball's iron man. That I might have been given a bad break,

• 7:30Ben Brock Johnson?

  but I've got an awful lot to live 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.

• 7:55Amory Sivertson?

  What was your knowledge of ALS before this? Or what was your exposure to it? What did you know about it?

• 8:03Speaker 06

  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.

• 8:41Speaker 06

  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.

• 9:03Amory Sivertson?

  Remember the ice bucket challenge of 2014, Ben?

• 9:07Ben Brock Johnson?

  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.

• 9:19Amory Sivertson?

  Well, nobody tagged Brooke either.

• 9:21Speaker 06

  I'm like, man, I'm not, I'm in no one's top three. Like, give me a break.

• 9:29Ben Brock Johnson?

  The initial few months after the diagnosis were rough.

• 9:33Speaker 06

  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 Goodreads was fire that year and it will never be that high again.

• 9:49Ben Brock Johnson?

  In between tearing through books, Brooke had to tell everyone she knew that she was dying, which made people uncomfortable.

• 9:58Speaker 06

  Cause 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 gonna remember that one.

• 10:20Speaker 06

  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.

• 10:36Amory Sivertson?

  Brooke started keeping a little note on her phone with some of the funny moments related to her diagnosis.

• 10:42Ben Brock Johnson?

  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.

• 10:54Speaker 06

  I was like, you've got to be kidding me. The bridesmaid's dress like barely fit me because I, again, the M&Ms. 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.

• 11:09Speaker 06

  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 this 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.

• 11:40Speaker 06

  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.

• 12:18Ben Brock Johnson?

  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.

• 12:33Speaker 06

  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.

• 12:45Ben Brock Johnson?

  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.

• 13:15Amory Sivertson?

  Don't be suspicious, don't be suspicious, don't be suspicious, don't be suspicious.

• 13:21Ben Brock Johnson?

  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.

• 13:32Amory Sivertson?

  Brooke's terminal illness and her willingness to laugh about it were immediately the cornerstone of her shtick. She uploaded the videos under the handle Limp Bruise Kit.

• 13:42Ben Brock Johnson?

  Fred Durst, anyone? Limp Bizkit? No? Amory? No?

• 13:48Amory Sivertson?

  I get it. Brooke had no idea if anyone would find her videos funny. Maybe they would just find them sad.

• 13:55Speaker 06

  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.

• 14:02Ben Brock Johnson?

  That all makes total sense to me. And I also think humor has always been this way of like dealing with darkness, right?

• 14:08Speaker 06

  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.

• 14:27Ben Brock Johnson?

  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?

• 14:36Speaker 06

  When I first started seeing like my follower count go up and all of that, it was probably like my dating videos, early days when I was using a cane.

• 14:46Ben Brock Johnson?

  These videos feature screenshots of the texts she got from potential suitors.

• 14:50Amory Sivertson?

  Things like, "Can I borrow your cane? I feel myself fallen."

• 14:55Ben Brock Johnson?

  Or, "Okay, I see you, Abraham limping."

• 15:03Amory Sivertson?

  Next, Brooke started making videos about this medicine she was taking as part of a trial.

• 15:08Ben Brock Johnson?

  Medicine that tasted really bad.

• 15:11Speaker 06

  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, stench. Let's do it, let's do it. It's no big deal.

• 15:26Speaker 06

  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. 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. Cause it's, I don't know, sometimes it feels like I'm playing The Sims.

• 15:52Speaker 06

  Like I see, I see the number of people watching and I see all the comments, but it's strange cause 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 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.

• 16:15Amory Sivertson?

  Do you identify as an influencer? Do you think of yourself as an influencer? What's your relationship to that term?

• 16:21Speaker 06

  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.

• 16:37Ben Brock Johnson?

  That's what I was going to ask, like, what are the products that you would influence on?

• 16:41Speaker 06

  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. Cause 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.

• 17:01Amory Sivertson?

  So Brooke is definitely not a full-time influencer. She still works a nine to five job in tech with only the occasional funeral spawn con.

• 17:10Speaker 06

  Funeral directors help with every step of end of life planning. Can document your wishes and understand the logistics. So if I want to play Kesha's Die Young, noted.

• 17:24Ben Brock Johnson?

  Unlike other viral creators, Brooke doesn't get a lot of hate online, but she does get comments that are pretty weird.

• 17:32Speaker 06

  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."

• 17:45Amory Sivertson?

  Oh.

• 17:50Ben Brock Johnson?

  Wow.

• 17:51Speaker 06

  And it's just like, in her heart, she's not trying to be mean to me.

• 17:56Ben Brock Johnson?

  Right. There's also this layer of like pity or sort of like people being like, "Oh, you're, I'm so..."

• 18:03Speaker 06

  Like, "You make me better."

• 18:04Ben Brock Johnson?

  "You make me feel more..." Yeah, "You make me feel thankful for every day because your life is so terrible."

• 18:09Speaker 06

  Right, yeah.

• 18:10Ben Brock Johnson?

  Like, what is, what does that feel like for you to receive? Because you seem like very open and nonjudgmental 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.

• 18:26Speaker 06

  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 she 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."

• 18:55Ben Brock Johnson?

  Right.

• 18:55Speaker 06

  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 that 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.

• 19:40Speaker 06

  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, 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.

• 20:30Speaker 00

  Support for this podcast comes from Is Business Broken?, a podcast from the Marotra Institute at BU Questram School of Business. How should employers measure real skills in the age of AI?

• 20:43Speaker 02

  Instead of observing the final artifact, instead of observing the final essay or the final program, observe the entire process of creation.

• 20:52Speaker 00

  Follow Is Business Broken? wherever you get your podcasts, and stick around until the end of this podcast for a preview of a recent episode on rethinking academic and job assessment when AI can do the work.

• 21:10Speaker 01

  Life is all about making decisions. Sometimes you make questionable ones, like buying a new TV that's too big for the wall because the electronics store employee was a little too good at their job. Then sometimes you make great ones, like protecting your home and auto with Progressive. You get customized coverage options so you can be sure you have the right coverage. Get your quote today at progressive.com. Progressive Casualty Insurance Company affiliates and other insurers. Not available in all states.

• 21:39Speaker 02

  Your sausage McMuffin with egg didn't change. Your receipt did. The sausage McMuffin with egg extra value meal includes a hash brown and a small coffee for just $5. Only at McDonald's for a limited time.

• 21:52Speaker 03

  Price and participation may vary. Promotion pricing may be lower than meal pricing.

• 22:00Ben Brock Johnson?

  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 Earl. 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.

• 22:30Amory Sivertson?

  How would you describe your mobility right now?

• 22:35Speaker 06

  Like a rag doll. Like, nothing really works. I mean, this, like, I can raise my hands, but like, they're claws now. I'm really not into the way they look. I can still type, especially on my phone, I can still type keyboard. 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.

• 23:02Ben Brock Johnson?

  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.

• 23:12Speaker 06

  It's so surreal, the amount that we've had to adapt. Three years ago, I was walking.

• 23:20Speaker 06

  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 gonna finally yell cut, and I'm gonna just pop up out of my chair and go be normal again.

• 23:43Speaker 06

  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, I don't know, seeing myself just a year ago versus today was startling. I don't think our brains are...

• 24:12Speaker 06

  Meant to compute the speed of change that it comes with this disease. Like, I, I made that video and I was thinking like, this is not a relatable feeling at all. Like, I, 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, 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.

• 24:39Amory Sivertson?

  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, your humor in the way that you use it now. Do you think you'll still be making videos? Have you thought about what?

• 25:09Speaker 06

  Yeah.

• 25:09Amory Sivertson?

  What the, what the content creation process might be then?

• 25:14Speaker 06

  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 gonna 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, 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. Like, I think the way that looks might be a little different.

• 25:57Speaker 06

  Like, rather than, you know, me talking a ton, it might be like, my parents helping talk and, 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 wanna watch a whole sad documentary. Just to sort of like try to glean insights of how to do things when like,

• 26:40Speaker 06

  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, that's the goal. I mean, man plans, God laughs, I think people say, but that's the plan for now.

• 27:01Amory Sivertson?

  Brooke doesn't know exactly how much time she has. Maybe she has five years, maybe she has 10 years.

• 27:07Ben Brock Johnson?

  What she does know is that curing ALS is going to take more resources.

• 27:13Amory Sivertson?

  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.

• 27:27Speaker 06

  Thank you for all of the thoughts and prayers. Now, have you considered money?

• 27:33Amory Sivertson?

  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.

• 27:50Speaker 06

  I feel like they're, the other planets have already made it here. Like, 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?

• 28:06Ben Brock Johnson?

  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.

• 28:20Speaker 06

  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 weak hands. I could get 1,000 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.

• 29:02Speaker 06

  Like, there's just not as immediate of answers um as I've been able to get. So I would, 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 gonna lose every ability until that point. So like you go home and your brain is just scrambled. And you're also like, am I gonna be paralyzed tomorrow?

• 29:46Speaker 06

  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 gotta do better than this.

• 30:08Ben Brock Johnson?

  Brooke's day job is at the tech company 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.

• 30:31Speaker 06

  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?

• 31:21Amory Sivertson?

  Brooke, it was so fun to talk to you.

• 31:24Ben Brock Johnson?

  Yeah, thank you.

• 31:25Speaker 06

  You too. This was a fun little Friday. Thanks for having me.

• 31:29Amory Sivertson?

  Yeah, thank you for doing this. And, you know, give that dog a hug for us.

• 31:35Speaker 06

  Oh, my God.

• 31:36Ben Brock Johnson?

  Yeah.

• 31:36Speaker 06

  You, like, now you have to go look at my Instagram and see what he looks like.

• 31:40Amory Sivertson?

  I will.

• 31:41Ben Brock Johnson?

  Same.

• 31:41Speaker 06

  Because he's the wormiest little thing. Like, you'd never expect such a loud bark.

• 32:01Amory Sivertson?

  Thank you to Brooke Eadie and her dog, Dr. Draymond Green.

• 32:06Ben Brock Johnson?

  This episode was written and produced by Grace Tatter. It was co-hosted by Amory Sivertson and me, Ben Brock Johnson.

• 32:12Amory Sivertson?

  Mix and sound design by Emily Jankowski.

• 32:15Ben Brock Johnson?

  The rest of our team is Franny Monahan, Dean Russell, Caitlin Harrop, and Meg Kramer. Our managing producer is Samantha Joshi, and our production manager is Paul Vikes.

• 32:24Amory Sivertson?

  Endless Thread is a show about the blurred lines between online communities and humor to get through the hard times.

• 32:31Ben Brock Johnson?

  If you have an untold history, an unsolved mystery, or other wild story from the internet that you want us to tell, hit us up. [email protected].

• 33:10Speaker 00

  Support for this podcast comes from Is Business Broken?, a podcast from the Marotra Institute at BU Questram School of Business. Follow Is Business Broken wherever you get your podcasts, and listen on for a preview of a recent episode featuring Janet Kang, Executive Director of the Just Horizons Alliance, on who stands to benefit from AI in education. I am absolutely in favor of AI in learning in the right context. And just to explain why you're excited about it. Oh, my gosh, individualized support.

• 33:41Amory Sivertson?

  Support, right? Personalization and to be able to scale quality education in places where it was historically impossible. So for certain kinds of learners with different kinds of learning styles and disabilities. For example, speakers of different languages. There are amazing ways AI can boost learning. It just has to be with the right context. And age appropriateness is something we do a lot of work in because it is very different depending on where in that maturity cycle you are in terms of how your brain develops.

• 34:10Speaker 00

  Find the full episode by searching for Is Business Broken wherever you get your podcasts and learn more about the Marotra Institute for Business Markets and Society at ibms.bu.edu.

• 34:29Speaker 01

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