Remembering Brooke Eby

"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 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 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.

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 Questram School of Business. A recent episode looks at what the rise of the gig economy means for workers, businesses, and the future of work. Stick around until the end of this podcast to preview the episode.

• 0:19Speaker 01

  Flowing ad budget on metrics that look great till the CFO sees them? That's bullspend, and marketers are calling it out in Dashboard Confessions.

• 0:29Speaker 02

  I remember telling my boss, it'll be good for the brand, when leads were slow. Yeah, it wasn't.

• 0:36Speaker 01

  Cut the bullspend. LinkedIn lets you target by company, job title, and more. Advertise on LinkedIn. Spend $250 on your first campaign and get a $250 credit. Go to LinkedIn.com/campaign. Terms and conditions apply.

• 0:50Speaker 03

  Whenever fall comes back around, it always feels like a fresh start. This year, I've been layering in some styles from the new Lululemon fall drop because the weather is shifting and I find I have to be ready for the entire day and not just one part of it. Lululemon's fall line has some really versatile transitional pieces so I can just wake up, throw on a matching set, add a jacket or a fleece, and head out, knowing that I'll feel comfortable enough to go wherever the day takes me. Check out the new fall arrivals in store and online now at lululemon.com.

• 1:19Amory Sivertson?

  Early last year, we spoke to someone on the show whom I haven't stopped thinking about, Brooke Eby.

• 1:27Ben Brock Johnson?

  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.

• 1:43Amory Sivertson?

  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.

• 1:59Speaker 01

  I still have one shaky thumb that works.

• 2:02Ben Brock Johnson?

  As she transitioned to life on a feeding tube and a BiPAP breathing machine.

• 2:08Speaker 01

  Okay, physically, I feel like I'm talking corpse.

• 2:13Amory Sivertson?

  And as her voice became weaker and weaker.

• 2:16Speaker 01

  I'm not ready to give up talking.

• 2:22Ben Brock Johnson?

  All while seemingly never losing that sense of humor, even on some very hard days.

• 2:29Speaker 01

  I don't think people realize. I'm afraid I have the death penalty at this point.

• 2:39Amory Sivertson?

  Brooke Eby 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.

• 2:57Speaker 06

  She was the first person I ever connected with that had ALS.

• 3:01Ben Brock Johnson?

  She actually encouraged me to start sharing my own journey. Brooke was way too funny to die. She was.

• 3:07Speaker 01

  Rest in peace, Brooke. You would have loved your comment section and all the jokes that people are telling.

• 3:14Ben Brock Johnson?

  As our own tribute to Brooke Eby, we're listening back to our episode with her and sharing her humor and her story again.

• 3:23Amory Sivertson?

  Give it a listen and then go hug your people. Here's the show.

• 3:32Ben Brock Johnson?

  WBUR Podcasts, Boston.

• 3:42Ben Brock Johnson?

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

• 3:45Speaker 01

  Thanks for having me.

• 3:47Amory 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.

• 4:00Speaker 01

  Sounds good.

• 4:00Amory Sivertson?

  Go for it.

• 4:01Ben Brock Johnson?

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

• 4:04Speaker 01

  Noted.

• 4:05Amory Sivertson?

  If that's your jam.

• 4:06Speaker 01

  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?

• 4:15Amory Sivertson?

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

• 4:20Speaker 01

  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'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.

• 4:45Amory Sivertson?

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

• 4:54Ben 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.

• 5:13Speaker 01

  I need advice, people.

• 5:15Ben 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.

• 5:26Speaker 01

  I just need reassurance. Maybe I just need someone like cheering me on that this is the right thing to do. 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.

• 5:45Ben Brock Johnson?

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

• 5:52Amory Sivertson?

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

• 6:01Ben 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.

• 6:15Speaker 01

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

• 6:23Ben Brock Johnson?

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

• 6:30Ben Brock Johnson?

  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.

• 6:41Speaker 01

  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 SkyAngels911.com. 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.

• 7:12Ben Brock Johnson?

  I'm Ben Brock Johnson.

• 7:14Amory Sivertson?

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

• 7:20Ben Brock Johnson?

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

• 7:38Ben Brock Johnson?

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

• 7:46Speaker 01

  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?

• 7:53Amory Sivertson?

  Of course.

• 7:54Ben Brock Johnson?

  Do I?

• 7:54Speaker 01

  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.

• 8:10Ben Brock Johnson?

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

• 8:18Speaker 01

  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 uplifted. And naive. I was like, oh, I just like did too much Pilates. I'm that in shape that my calf hurts.

• 8:40Ben Brock Johnson?

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

• 8:44Speaker 01

  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.

• 9:01Ben 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.

• 9:13Speaker 01

  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.

• 9:23Ben 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.

• 9:35Ben 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. 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 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.

• 10:24Amory Sivertson?

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

• 10:32Speaker 01

  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.

• 11:17Speaker 01

  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.

• 11:32Amory Sivertson?

  Remember the ice bucket challenge of 2014, Ben?

• 11:36Ben 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.

• 11:48Amory Sivertson?

  Well, nobody tagged Brooke either.

• 11:50Speaker 01

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

• 11:58Ben Brock Johnson?

  The initial few months after the diagnosis were rough.

• 12:02Speaker 01

  All I'd 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.

• 12:18Ben Brock Johnson?

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

• 12:27Speaker 01

  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 gonna remember that one.

• 12:49Speaker 01

  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.

• 13:05Amory Sivertson?

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

• 13:11Ben 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.

• 13:23Speaker 01

  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.

• 13:38Speaker 01

  Like, I looked down and I was like, oh, she has tennis balls too. So we were like, kind of like, hey.

• 13:44Speaker 01

  But that, I turned to my friend and I was like, we're out of here. Like, there's no way I'm gonna 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 gonna get a good story out of it, just go for it.

• 14:09Speaker 01

  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.

• 14:48Ben 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.

• 15:02Speaker 01

  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 gonna be embarrassed, you're going down with me.

• 15:14Ben Brock Johnson?

  The very first video is of 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.

• 15:50Ben Brock Johnson?

  That's played after a caption of Brooke saying she doesn't want to draw attention to her diagnosis. Well, you see Brooke and her walker absolutely being the main characters on the dance floor.

• 16:01Amory 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.

• 16:11Ben Brock Johnson?

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

• 16:16Amory Sivertson?

  I get it.

• 16:19Amory Sivertson?

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

• 16:25Speaker 01

  So that's why my first couple of videos, I was always kind of nervous. So I'm like, should I be joking at a time like this? I don't know.

• 16:31Ben 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?

• 16:37Speaker 01

  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.

• 16:56Ben 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?

• 17:06Speaker 01

  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.

• 17:15Ben Brock Johnson?

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

• 17:20Amory Sivertson?

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

• 17:25Ben Brock Johnson?

  Or, okay, I see you, Abraham, limping.

• 17:32Amory Sivertson?

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

• 17:38Ben Brock Johnson?

  Medicine that tasted really bad.

• 17:40Speaker 01

  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.

• 17:56Speaker 01

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

• 18:21Speaker 01

  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 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.

• 18:44Amory Sivertson?

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

• 18:50Speaker 01

  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 gonna go out and sell that out because it's not a need for most people.

• 19:06Ben Brock Johnson?

  That's what I was gonna ask. Like, what are the products that you would influence on?

• 19:10Speaker 01

  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, it's a very weird space to be in.

• 19:30Amory 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.

• 19:39Speaker 01

  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 a Kesha's Die Young, noted.

• 19:53Ben Brock Johnson?

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

• 20:01Speaker 01

  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.

• 20:14Amory Sivertson?

  Oh.

• 20:19Ben Brock Johnson?

  Wow.

• 20:20Speaker 01

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

• 20:25Ben Brock Johnson?

  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.

• 20:38Speaker 01

  Right, yeah.

• 20:39Ben 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.

• 20:55Speaker 01

  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.

• 21:24Ben Brock Johnson?

  Right.

• 21:24Speaker 01

  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.

• 22:09Speaker 01

  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, ALS is 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.

• 22:58Speaker 00

  Support for this podcast comes from Is Business Broken?, a podcast from the Marotra Institute at BU Questram School of Business. What gets lost when work stops looking like a nine to five job?

• 23:11Speaker 01

  If I am not committing to be working with you exclusively at a particular point in time for a certain amount of time to do certain types of work, then you can't necessarily expect the employer on the other side to provide guarantees either.

• 23:24Speaker 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 about the changing dynamics of the gig economy.

• 23:37Speaker 01

  Flowing ad budget on metrics that look great, till the CFO sees them? That's bullspend, and marketers are calling it out, in. Dashboard confessions.

• 23:47Speaker 02

  I remember telling my boss, it'll be good for the brand, when leads were slow. Yeah, it, it wasn't.

• 23:54Speaker 01

  Cut the bullspend. LinkedIn lets you target by company, job title, and more. Advertise on LinkedIn. Spend $250 on your first campaign and get a $250 credit. Go to LinkedIn.com/campaign. Terms and conditions apply.

• 24:08Speaker 03

  When fall comes back around, there's a sense of a reset. And new pieces from Lululemon's fall drop are an inspiration to push your goals and elevate your routines. As your calendar fills, easy-to-layer styles meet the demands of your day. And as you challenge yourself to try even more, versatile sets transition with you. The Lululemon fall lineup brings new levels of comfort and confidence, whether you're starting something fresh or starting something over. Check out the latest arrivals in store and on lululemon.com now.

• 24:43Ben 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.

• 25:12Amory Sivertson?

  How would you describe your mobility right now?

• 25:18Speaker 01

  Like a ragdoll. Like, nothing really works. I mean, this, like, I can raise my hands, but like, they're, 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, 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.

• 25:45Ben 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.

• 25:55Speaker 01

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

• 26:03Speaker 01

  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.

• 26:26Speaker 01

  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 looked 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 meant to compute the speed of change that it 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.

• 27:10Speaker 01

  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 there be all the time.

• 27:22Amory 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?

• 27:51Speaker 01

  Yeah.

• 27:52Amory Sivertson?

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

• 27:57Speaker 01

  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, that's a big thing in the ALS community. As soon as you get diagnosed, they're like, start saving your voice.

• 28:29Speaker 01

  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, 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 progressive 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?

• 29:13Speaker 01

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

• 29:44Amory Sivertson?

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

• 29:50Ben Brock Johnson?

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

• 29:56Amory 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.

• 30:10Speaker 01

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

• 30:16Amory 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.

• 30:33Speaker 01

  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?

• 30:49Ben 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.

• 31:03Speaker 01

  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.

• 31:44Speaker 01

  Like, there's just not as immediate of answers as I've been able to get. So I, 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 flashback 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?

• 32:28Speaker 01

  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 got to do better than this.

• 32:51Ben 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.

• 33:14Speaker 01

  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?

• 34:04Amory Sivertson?

  Brooke, it was so fun to talk to you.

• 34:06Ben Brock Johnson?

  Yeah, thank you.

• 34:08Speaker 01

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

• 34:12Amory Sivertson?

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

• 34:18Speaker 01

  Oh, my God.

• 34:18Ben Brock Johnson?

  Yeah.

• 34:19Speaker 01

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

• 34:22Amory Sivertson?

  I will.

• 34:23Ben Brock Johnson?

  Same.

• 34:24Speaker 01

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

• 34:44Amory Sivertson?

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

• 34:48Ben Brock Johnson?

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

• 34:55Amory Sivertson?

  Mix and sound design by Emily Jankowski.

• 34:58Ben Brock Johnson?

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

• 35:07Amory Sivertson?

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

• 35:14Ben 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].

• 35:51Speaker 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 Brandeis University Professor David Weil on a question at the heart of the gig economy. When an app controls how you work, is it really just a platform or is it your employer?

• 36:16Speaker 02

  It is very true that the platforms allow, let's say, drivers to find riders much more easily in a way that would be impossible absent the Uber or Lyft technology. Yes, the technology's connecting people, but the technology is also doing all the kinds of things that we usually associate with management. Setting the rate of pay, setting the pace of work, deciding on who gets the job and who doesn't, monitoring the performance of that party. There's a lot that these technologies do that are all about what we would call management.

• 36:58Speaker 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.

• 37:13Speaker 03

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• 37:43Speaker 00

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