The C-Word: She was a cancer doctor. She hid hers for 10 years.

The following is a lightly edited transcript of the May 15 episode of the 'Say More' podcast.
Shirley Leung:
Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is episode 3 of our series 'The C-Word: Stories of Cancer.'
Today we start with a question: How far would you go to keep a secret for someone you love?
Would you risk their life? Support their lies until it was too late?
Barrett Rollins did that for his wife, Jane.
Jane hid her advanced breast cancer until she collapsed at work, unable to breathe. And here's the wrinkle: They're both world class oncologists.
Now, what would compel two cancer doctors to keep a secret like that?
The reasons are complex — and mystifying — and 10 years after Jane's death, Barrett still wrestles with them.
Barrett and Jane worked together at the Dana-Farber Cancer Institute here in Boston. He recounts Jane's tragic story in a recent book called 'In Sickness: A Memoir.'
I asked Barrett the question that had been bugging me since I read the book: How? How did Jane hide her illness for so long?
Barrett Rollins:
That's the critical question, isn't it? How could she have hidden something so prominent from her husband and from everybody else and from all the doctors that she worked with? I think it's important to understand that this book is not just a book about cancer and somebody's cancer journey, it's also a book about a marriage.
Barret Rollins and Jane Weeks in a 2013 photo.
Courtesy of Barrett Rollins
Our marriage, which lasted for 30 years, was complicated. Maybe it was more complicated than some other marriages, but all marriages I think at some level are complicated. We had about 20 years of a really, really great marriage. And then all of a sudden, 20 years in, things changed.
Jane became a little more withdrawn, all intimacy stopped. After a while, it just became easier for me to sleep in another room, and I never really understood why. I had to make a decision: Do I stay with her? Do I object? Do I leave?
I was just completely in love with her. We had a wonderful relationship in every other domain, so I decided to stick it out. It's a complicated story as you know from reading the book. About five years after that, Jane unwillingly revealed her diagnosis.
Leung:
This is where she collapsed in the bathroom. Tell that story.
Rollins:
We had a pretty set routine. We worked really hard during the week. I was still working on the weekends, but Jane just totally shut off on the weekends and she would spend most of the weekends in bed. We were in our own little bubble, very hermetic.
I was puttering around on a Saturday morning and I suddenly heard her call out from the bathroom and she said, 'I need you.'
I knocked and came in and I was confronted with this sight of my wife lying on the floor of our bathroom. She was dressed in her usual Saturday outfit, which was a long caftan dress, sort of from her neck to her toes, but it had been slightly unzipped and underneath the caftan, on one shoulder, was a towel. I could see that the towel was beginning to be soaked in blood.
I said, 'My God, what's happening?' And Jane said, 'I'm dying.' Very matter of fact, 'I'm dying.'
And I said, 'What are you talking about, you're dying.' She said, 'I have breast cancer. It's starting to bleed and I'm dying.'
I said, 'Well, you know, I gotta call 911,' and she said, 'Don't.' And I said 'Don't be ridiculous.' It ended up being a shouting match.
She ultimately said, 'If you call 911, I will never forgive you and I will never speak to you again.'
Leung:
She would rather die on the bathroom floor?
Rollins:
Absolutely. And she made it clear.
Here's where my accommodating personality accommodated. I sat down, she had brought the newspaper in with her. I said, 'What do you want me to do?' She said, 'Well, just read to me.'
I can still remember sitting on the toilet seat with her on the floor. I read most of the first section of the New York Times to her. How pathetic is that? This was while she's telling me that she's dying, but of course she wasn't dying.
The bleeding stopped after about 30 to 45 minutes. She checked the wound. She saw she wasn't bleeding, and said, 'Okay, everything's fine. You can go now.' I said, 'Well, I can't go now. We have to talk about this.'
'We're never gonna talk about this.' That's what she said. And again, 'If you bring this up, I will leave you and I will never forgive you.'
So for the next four or five years, I was complicit in her desire to hide what was going on. I was complicit to the extent that I could convince myself there was no problem. I really kind of believed that everything was fine until another medical emergency, about five years after that, revealed her disease to the world.
Leung:
You spend so much of the book wrestling with Jane's actions and decisions, and you write that denial is too simple of an explanation. Can you talk a little bit about why you think Jane didn't want anyone to know she was sick?
Rollins:
One thing is, on the sort of personal level for Jane, she had a phobia about medicine.
In all the years we were together, I never saw her go to the dentist. She never had a mammogram. She never had a colonoscopy. She never had a primary care physician. There was something in her that was phobic about medicine.
There are just ironies upon ironies here, right? Because she decided to go into medicine. And not just anything, she goes into cancer medicine.
Leung:
And Dana-Farber is known for its research for finding medicines, to cure cancer or treat cancer.
Rollins:
Absolutely. Not only that, but for screening and prevention, all the other things. She's a first responder that runs to the fire. She runs into the building. There was something in her makeup that made her want to do that, probably because she was disappointed in herself because of her phobia. So that's one thing, put that in one category.
The other thing that Jane recognized, which you may resonate with, is that when somebody gets a diagnosis of cancer, all of a sudden it's like flipping a switch. People treat that person differently.
Leung:
Yep.
Rollins:
There's this patronizing, 'Oh, are you okay? What can I do for you?'
It was very important for Jane to be seen as strong. She saw that when people at Harvard Medical School are perceived as weak, they lose all their advantages. And she was really worried that everyone's attitude would change if anybody knew she had cancer.
And then there's this other thing about people with cancer. They're told, not so much by their physicians, but they're told by society in general, now that you have cancer, your job is to be a fighter. You have to fight this thing, fight it day and night. And fighters are winners.
There's an aspect of that that is absolutely wonderful. But what Jane objected to, was it creates a false situation in which the person with cancer, because they're now fighters, believe they have agency. And they really don't.
But if they believe they have agency over this because they're fighting, and then through no fault of theirs, their treatment doesn't work or the cancer that goes away comes back, what's the implication? The implication is you've lost the fight. You're a loser, you didn't fight hard enough. Which is very, very destructive.
I think cancer patients have agency to the extent that they can make choices about whether or not they're gonna get treatment. And in that respect, Jane retained agency, I think she used it incorrectly, but she retained it.
And then the final thing is, and I wish it was all about this because this last thing is actually rational whereas I think most of what Jane did was irrational, Jane's research helped to establish the notion that people, not just patients with cancer, care more about the quality of their life than the quantity of their life.
Over and over again when you survey people, they care about how they're living. They would trade length for quality over and over again.
Even in the last year of her life, while she was bed-bound and unable to do anything, she published a really important paper in the New England Journal of Medicine about this.
At that time, 10 or 12 years ago, metastatic breast cancer was not curable. She knew she couldn't be cured and she knew just how toxic chemotherapy was in those days. It's one of the reasons she stopped seeing patients very soon after her training was over.
Her patients loved her, and she loved taking care of patients. But this notion that she was going to make somebody deathly ill by writing an order in a chart, she couldn't stand that. She didn't want that for herself. Now that was the most rational thing, but all these other things were also there too, and they were pretty irrational.
Leung:
When reading the book, I got really mad, at first at Jane and then I got mad at you, really mad at you. Jane collapses, you don't call 911 then you just slowly let her die of breast cancer. How did you do that? How did that happen?
Through the process of writing this book, you must have thought about that, right? I don't know if you've thought about how that happened. You wouldn't advise anyone to do that?
Rollins:
Oh my God, no. You know, you are just the latest in a long line of people who've said they're really mad at me. I've sort of struggled to understand that, because it's complicated. I wrote this book and I hadn't decided to publish it right away, but I just felt it was important to write it so that I could try to understand a little bit better what had happened.
But then as I struggled with whether or not to publish it, I began to feel incredibly guilty about even thinking that because here's Jane who spent a decade hiding everything and what right did I have to display it all? It just felt like an incredible betrayal. So I was already mad at myself, but not for the reasons you were mad at me.
It took me a while to understand that other people were mad at me because I didn't act the way…
Leung:
You had a responsibility.
Rollins:
I absolutely did. I had a duty to act, as her husband.
Leung:
And you're a doctor.
Rollins:
Thanks. Can we get some of the reporters to come in and pile on?
But you're right, you're absolutely right. And this is what I still feel incredibly terrible about. I haven't resolved this, other than to understand it is in my nature to be accommodating. Not just accommodating for my own good, but I really thought I understood what it took to make this endlessly fascinating, charismatic woman, happy. I had spent decades doing that already.
Another way to think about my duty, is my duty was to make her as happy as I could. In a convoluted way, allowing her to die on her own terms, made her happy. So, that's another way to think about this. I was fulfilling that responsibility.
Barrett Rollins poses for a portrait at his home in Boston on November 10, 2022.
Craig F. Walker/Globe Staff
Leung:
Right, I did come around. It was like an emotional rollercoaster. First I was mad at Jane, then I was really mad at you. But in the end, it's Jane's life, it was her choice. So I was less mad at you at the end because, right, it was her choice.
I also felt like your book laid bare that she made the wrong choice.
Rollins:
She did.
I have talked to people who are, let's say, in the Robert F. Kennedy Jr. camp, and I've heard somebody say, 'This Harvard cancer doctor decided not to get treatment, so nobody should get treatment.'
I actually did have a conversation with one person about this and said, 'That's nuts. My book shows you that it was the wrong decision.'
Leung:
That's what I took away. If you do what Jane did, then you'll suffer more than you have to. She could still be alive today given the advance in medicine.
Rollins:
That's possible. At the very least, her life would not have been so miserable. I write in some detail about what it took every single day to do the dressing changes; it was so complicated. It was like the invasion of Normandy, every day.
She was miserable because this thing was bleeding. It got infected. It smelled bad. If she had gotten treatment, that probably wouldn't have happened.
Leung:
So how unusual are 'Janes' in the world of oncology? The patients who are in denial and refuse treatment.
Rollins:
It's not that uncommon.
All of us in oncology have, in the back of our minds, a small cadre of patients that we saw who would come in with long, neglected cancers of various sorts because of fear or their own phobias. Once the book was written, I started getting comments and emails from people saying, 'Thank you for writing this. It reminds me of when my mother did the same thing, or reminds me of when my cousin did the same thing.'
There is a large population of people out there who are doing this, and I think it's one of the deficiencies that we as oncologists have lived with. We need to think more about how to reach out to people who don't want to be seen and think that their treatment is gonna be worse than their disease.
There will be people who are stubborn and delusional like Jane who thought the treatment was worse than her disease, but I'm here to tell you it really wasn't. There are other people who I think can be convinced, if we do it the right way.
Leung:
So do you think people are more scared of cancer than other diseases and that's why they put off treatment?
Rollins:
I do.
I think it's pretty clear that people are scared of cancer.
Leung:
And why is it so scary?
Rollins:
Well, I think there are a couple reasons. One is a historical reason. People are scared of what they don't understand.
If you think about Tuberculosis, for example, this was a disease that was the staple of European literature for a couple centuries. If you think about what happens, people just suddenly start losing weight. They become listless. It's kind of just tailor-made for some kind of romantic story in which Tuberculosis is a visitation for some sin this person committed either in this life or a previous life.
It wasn't until the discovery of the bacteria that causes Tuberculosis that you had a rational way to think about it. So nobody talks about this anymore.
Cancer was the same sort of thing. For centuries, nobody knew what caused cancer. It was this mystery, also of visitation, and it was organ specific. There are all sorts of myths that you can come up with about why someone might have developed cancer. We had no treatment and, again, for which we didn't understand the origin.
That is really changing now with discoveries that really show what the cause is, treatments that are directed at that cause, but that's gonna take a while.
But I think the other thing that's unique about cancer is the way it distorts the organs that it involves. It directly impacts bodily autonomy. As we go through the world, I think that we imagine ourselves as intact entities that interact with other people. Cancer attacks that intactness. It creates lumps in your breast, it creates broken bones, it creates a stroke-like syndrome if you have brain cancer. There are things that it does that destroy the sort of compactness and wholeness of the body, and I think that's fundamentally terrifying to people.
I think a lot of people who either have cancer or have a certain turn of mind, can be scared to death that's gonna happen to them.
Leung:
You studied medicine for decades before you encountered this experience with Jane. You write in the book about changing the dressings on her chest. It was really difficult for you to be on the other side, to be the caretaker and to be so vulnerable to a disease.
How did that experience change your perspective as a doctor?
Rollins:
The whole experience changed my perspective, but I'm thinking particularly about treating Jane's tumor.
I think your listeners who haven't read the book need to know that the right side of Jane's chest was completely replaced by this football-sized mass. It was misshapen, parts of it were dying. It turned black. Other parts were infected and there were parts that were bleeding all the time.
These kinds of things always bothered me, even when I was in medical school.
Leung:
Squeamish to blood?
Rollins:
Not to blood, not to blood. This is very specific. Blood didn't bother me and people who were very sick didn't bother me, but there was something about big tumors that were decaying and destroying somebody's body that made me sort of reach for the rails because I was afraid I was gonna faint.
The first time I saw this was the day Jane had this event. When we were at Dana-Farber, we always had lunch together. We were on our way to lunch and she just collapsed. She'd had a huge clot, traveled from her legs up into her lungs. When we got to the emergency room, they took off her clothes and there was this thing which I had never seen before. I sort of looked at it from a distance and I thought, 'Oh, this is what she's talking about.'
My insight into this is that people can ultimately handle anything. There's nothing special about me. I took care of her for a year. I helped the visiting nurses change the dressings for a year. I think people should take heart in knowing that I, a kind of neurotic otherwise normal guy, could eventually step up and do all this stuff when necessary.
And I think people are doubting their ability to do that. It should take some strength from the fact that I could do it and other people do it all the time. We should provide support for them, but people are strong enough to do this.
Leung:
Also, it was an incredible act of love, a final act of love to take care of her the way you did at the end.
Rollins:
I think there's another lesson here. It's a negative lesson.
Jane and I had this hermetic relationship. Jane, she kept her family at a distance. There's all kinds of psychodynamic stuff going on there, but she had a sister and a brother and a mother that she just, long before she got sick, kept at a distance.
Leung:
She didn't even tell them for a long time that she had cancer.
Rollins:
No, she forbade me to tell them. She kept my daughter at a distance. We didn't have many friends.
I can't speak for her, but from my experience, her last year would've been very different if I had family support. So there's another negative lesson, don't try to do this by yourself.
Leung:
That was one of the things that is so memorable from my cancer journey. Once I told other people and family that I had cancer, I had this incredible outpouring of support.
You didn't experience that during the time Jane had cancer. But, I had meals, I had the newsroom put up a collection meal train. People came over and babysat my kids for me. My mom flew in from California and took care of me and did the laundry and helped me change my dressings.
Rollins:
That's so great. So that's the way it should be, right?
Leung:
Yes, that's the way it should be. Now when I know other people have cancer, I pay it forward. I pay it back. I then provide the meals and support. It's actually this incredible experience.
You feel incredibly human and alive. It's amazing. I feel bad you didn't get to experience that because if there's a silver lining to cancer, it's to see humanity come out.
Rollins:
I totally agree.
Once you can blow past the patronizing stuff we talked about earlier, what you get is really authentic and caring support. It is this sort of silver lining. If you have to go through this, and you know we are all doomed to go through something, there's that aspect of it that you can look for.
Leung:
What do you want people to take away from reading your memoir about Jane's story?
Rollins:
Well first, I don't want them to be so mad at me. That's selfish, I know.
Leung:
I'm not mad at you anymore.
Rollins:
Okay. Okay. No, I think there are a couple things. One is that people are infinitely diverse. Everybody's different. Everybody's response to what may seem like a common disease is going to be different. We as physicians and also as family members, I hate to use this phrase, have to sort of meet people where they are.
I think Jane is an extreme example of this. If I had been more skillful, I might have been able to let her have the autonomy she was seeking, but in a way that didn't make her life worse. So I think that's one lesson.
Another lesson is that we are capable of helping. Don't believe that you're not strong enough to take on something that seems to be horrific. I couldn't have had a nightmare worse than what I had seen when Jane finally collapsed. Yet, we got through that. We had a final year.
I think those are the main things. And then the last thing is we should also be thinking about those who have survived the deaths of the people they loved. Those survivors have been touched very deeply. They're not the same people they were before this happened.
This was really one of the reasons that I ended up publishing this book at all. I felt very guilty about revealing Jane's secret. I talked to Jane's sister, who as it turns out, is an author, and I gave her a copy of the book. She said she was mad at me, but then she said she liked it.
I said, 'Well, can I publish this? It just doesn't seem right to be able to do this.' And what she said I think was really important.
She said, 'For a long time, this was Jane's story. But now it's your story and you can do whatever you want with your story.'
Leung:
Barrett Rollins is a professor of medicine at Harvard Medical School and a longtime cancer researcher. His book is called 'In Sickness: A Memoir.' He also has a new book called 'First the Patient,' about another fascinating medical story.
Listen to more 'Say More' episodes at
Kara Mihm of the Globe staff contributed to this report.
Shirley Leung is a Business columnist. She can be reached at

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The bridesmaid dress barely fit me, because, again, the M&M's. 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. I looked down and I was like, 'Oh, she has tennis balls, too.' So we were kind of like, 'Heyyyy.' I turned to my friend and I was like, 'We're out of here. There's no way I'm going to walk down the aisle with this walker as a bridesmaid, no chance.' My friend, not the bride, I told her that 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.' We made it through the ceremony and then by the reception, I don't know if my embarrassment had worn off or if I just kind of forgot about it, but we had the best time on the dance floor. 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 trying to have fun.' 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. Eby: She was like, 'Brooke, you need to do something with this. 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.' 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 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. (TikTok clip from Eby's account): Don't be suspicious. Don't be suspicious. Don't be suspicious. Don't be suspicious. 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. 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 @limpbroozkit. Johnson: Fred Durst, anyone? Limp Bizkit? No. Amory? No? Sivertson: I get it. Brooke had no idea if anyone would find her videos funny. Maybe they would just find them sad. Eby: That's why in 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.' Johnson: That all makes total sense to me. And I also think humor has always been this way of dealing with darkness. Right? Eby: I agree. I think especially with COVID. During and post COVID life, the whole concept of meme culture, like we can make a joke out of absolutely anything. Like we're quick now. People just need humor, I think to process things. 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? Eby: When I first started seeing my follower count go up and all of that. It was probably my dating videos, early days when I was using a cane. Johnson: These videos feature screenshots of the texts she got from potential suitors. Sivertson: Things like, 'Can I borrow your cane? I feel myself falling.' Johnson: Or 'Okay, I see you Abraham Limping.' Sivertson: Next, Brooke started making videos about this medicine she was taking as part of a trial Johnson: Medicine that tasted really bad. Eby: So I did a taste testing series so people could suggest how to chase it or how to deal with it. Eby (clip from TikTok video): Pickle juice, shot glass. Oh, stench. Let's just do it. Let's just do it. It's no big deal. Eby: I think after those two, that was when I started seeing, 'Okay, people are remembering that they've seen me before and they were saying like, Brooke, blah, blah blah.' They remembered who I was, as opposed to it just being another swipe away video. But it is hard, I think, to still understand any sort of impact you make if it's just on the internet, because, I don't know, sometimes it feels like I'm playing The Sims. I see the number of people watching and I see all the comments, but it's strange because 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 comments. I'm like, 'How is any of this real?' It's strange because everyone's like, 'You're so brave.' I'm actually just talking to myself in my room. Sivertson: Do you identify as an influencer? Do you think of yourself as an influencer? What's your relationship to that term? Eby: No. I don't really have one. The stuff that I influence on is much more niche. 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. Johnson: That's what I was gonna ask, what are the products that you would influence on? Eby: Yeah, you should see the partnerships that reach out to me. I always crack up picturing my manager versus a normal person's manager, because she gets calls from the National Funeral Directors Association and I'm like, 'Sure, sure, sure. That's a perfect fit.' It's a very weird space to be in. 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 sponsored content. Eby (clip from TikTok video): Funeral directors help with every step of the end of life plan. They can document your wishes and understand the logistics. So if I wanna play Kesha's 'Die Young,' noted. Johnson: Unlike other viral creators, Brooke doesn't get a lot of hate online, but she does get comments that are pretty weird. Eby: 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.' Sivertson: Oh. Johnson: Wow. Eby: It's just like, in her heart, she's not trying to be mean to me. Johnson: Mm-hmm, right. There's also this layer of pity or sort of people being like, 'Oh, you make me feel thankful for every day because your life is so terrible, right?' Eby: Yeah. Johnson: What does that feel like for you to receive? Because you seem very open and non-judgmental in some ways, but also you can see the humor and ridiculousness of the way people act towards you. That's what I was trying to ask about, if that makes sense. Eby: Yeah, I actually had not even thought about that. Then someone messaged me once and they're like, 'Do you ever get sick of being the reason people want to be a better person?' And 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. Most of the time, if someone's like, 'I wanna appreciate every day.' To me, that's a great comment. I'm like, good. If someone were to say, 'I should feel lucky because my life isn't as shitty as yours,' I don't think I would like that phrasing. But I don't know that people phrase it like that. I don't remember seeing that. At least I would say feedback is a gift. The feedback that I got, especially at the beginning was, 'You're making light of this' or 'You seem too happy.' And I think honestly, most of the people who are making those comments are probably ones who had a first row seat to someone living with this and are still feeling angry at the disease. At least that's the backstory I've given them because otherwise, what do they care? I think in my mind, I'm not reframing it. I just wasn't that progressed. It wasn't that hard at that point. And now that it's gotten worse, there's not going to be as many videos of me being like, 'Hey, this is no big deal.' It's just the nature of progression. So I'm just like 'Stay along for the ride and if you wanna see things get worse, you will with this disease. So stick around.' 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 Alix 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. Sivertson: How would you describe your mobility right now? Eby: Like a ragdoll? Nothing really works. I can raise my hands, but 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 on the keyboard, a lot more typos these days. I can move my head and talk, but below the screen, it's a mess. Johnson: Before the TikTok band briefly went into effect in January, Brooke made a video about how it felt to go back and watch her own content from the beginning. Eby (clip from TikTok video): 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 gonna finally yell, 'cut,' and I'm gonna just pop up outta my chair and go be normal again.' Eby: Day to day, I think it's easy for me to just rely on humor and staying busy to cope. But then 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 it changed, but I don't know, seeing myself just a year ago versus today was startling. I don't think our brains are meant to compute the speed of change that comes with this disease. I made that video and I was thinking, 'This is not a relatable feeling at all.' I just feel like I'm an actress playing a role right now. This doesn't feel real. And people are like, 'No, that's called dissociation. That's very much a psychological term that most people go through.' And I was like, oh, okay. You can tell I'm not actively in therapy all the time. 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 implementation 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? Eby: Yeah, 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, I have voice banked. I do have my voice saved so I can use it in some sort of text-to-talk thing. That's a big thing in the ALS community. As soon as you get diagnosed, they start saving your voice. But, I think my intention is to keep going really as far as I can. I think the way it looks might be a little different. Rather than me talking a ton, it might be like my parents helping to talk or filming stuff. Or maybe it's just, not talking and I'm just putting music over something I'm doing. 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? Those are the things that I don't want to watch a whole sad documentary just to glean insights of how to do things when I could just make a two minute video. It might not work next week, but it's working right now, so that's the goal. Man plans, God laughs. I think people say, but that's the plan for now. Sivertson: Brooke doesn't know exactly how much time she has. Maybe she has five years, maybe she has 10 years. Johnson: What she does know is that curing ALS, it's going to take more resources. Sivertson: Social media, whether it's the Ice Bucket Challenge or a TikTok or raising awareness, can build community around ALS, but it's not going to cure the disease. That takes research, which has a price tag. Eby (clip from TikTok video): Thank you for all of the thoughts and prayers. Now, have you considered money? 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. Eby: 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. 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. Eby: 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, 'I really need advice on the best toothbrush for weekends.' I could get a thousand messages back. Whereas someone who's not a psycho putting her life online, like a normal person living with this disease, they could go to their support group, and I don't know how fast they'll get a response. There's just not as immediate of answers as I've been able to get. So I kept thinking about that: 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 godforsaken packet, it's like an encyclopedia size, and it's just pamphlet after pamphlet of resources. 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. You go home and your brain is just scrambled and you're also like, am I gonna be paralyzed tomorrow? Like you just start thinking in terms of speed, 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. I'm like, if this disease moves fast, like why are we still treating it like we're in the nineties? We gotta do better than this. 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 Brooke says it's really special to her because it's a rare space where people are going through similar challenges. Eby: 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 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 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.' That's probably how everyone feels about something in their life. It's just 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.' 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 at endlessthread@ Leung: Thanks for listening to this episode of 'Endless Thread.' If you want to hear more, follow 'Endless Thread' on Apple Podcasts, Spotify, or wherever you listen. And make sure you're following 'Say More' while you're at it. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at

Los Angeles Times

15-06-2025

• Los Angeles Times

Strangers in the middle of a city: The John and Jane Does of L.A. General Hospital

He had a buzz cut and brown eyes, a stubbly beard and a wrestler's build. He did not have a wallet or phone; he could not state his name. He arrived at Los Angeles General Medical Center one cloudy day this winter just as thousands of people do every year: alone and unknown. Some 130,000 people are brought each year to L.A. General's emergency room. Many are unconscious, incapacitated or too unwell to tell staff who they are. Nearly all these Jane and John Does are identified within 48 hours or so of admission. But every year, a few dozen elude social workers' determined efforts to figure out who they are. Too sick to be discharged yet lacking the identification they need to be transferred to a more appropriate facility, they stay at L.A.'s busiest trauma hospital for weeks. Sometimes months. Occasionally years. That's an outcome no one wants. And so hospital staff did for the buzz cut man what they do once every other possibility is exhausted. Social workers cobbled together the tiny bit of information they could legally share: his height and weight, his estimated age, his date of admission, the place where he was found. They stood over his hospital bed and took his photograph. Then they asked the 10 million people of Los Angeles County: Does anyone know who this is? Just before 8 a.m. on Feb. 16, paramedics responded to a medical emergency at 1037 N. Vermont Ave. The man was face-down on a stretch of sidewalk lined with chain-link fences and sandbags, near a public restroom and the entrance to the Vermont/Santa Monica subway stop. Pink scrape marks blossomed above and below his right eye. Paramedics estimated he was about 30 years old. Hospital staff guessed 35 to 40. He had no possessions that might offer clues: no phone, no wallet, no tickets or receipts crumpled in his pockets. He could not state his name or answer any questions. The hospital admitted him under a name the English-speaking world has used for centuries when a legal name can't be verified: John Doe. The vast majority of patients admitted as John Does leave as themselves. The unconscious wake up. The intoxicated sober up. Frantic relatives call the hospital looking for a missing loved one, or police arrive seeking their suspect. None of these things happened for the man from North Vermont. When he finally opened his eyes, his language was minimal: a few indistinct words — possibly English, possibly Spanish — and nothing that sounded like a name. Social workers wrote down everything they knew for sure about their patient: his height (4 feet, 10 inches), his weight (181 pounds), the color of his eyes (dark brown). Then they started following the trail that typically leads to identification. The ambulance crew didn't recognize him, and the run sheet — the document paramedics use to record patients' condition and care — had no revelatory details. They checked Google Maps. Any nearby shelter whose manager they could call to ask about a missing resident? Nope. Was there an apartment building whose residents might recognize his photo? Nothing. They clicked through county databases. His details didn't align with any previously admitted hospital patient, or anyone in the mental health system. No missing-persons report matched his description; social workers couldn't find a mention of someone like him in any social media posts. An anonymous patient is an administrative problem. It's also a safety concern. If a patient can't state their name, they probably also can't say if they have life-threatening allergies or are taking any medications, said Dr. Chase Coffey, who oversees the hospital's social work team. 'We do our darndest to deliver safe, effective, high-quality care in these scenarios, but we run into limits there,' he said. Federal law requires hospitals to guard patient privacy zealously, and L.A. General is no exception. But given that virtually every hospital deals with unnamed patients, California carves out an exception for unidentified people who can't make their own healthcare decisions. In such instances, hospitals can go public with information that could locate their patient's next of kin. On March 3, nearly two weeks after the man's arrival, a press release went live on the county's website and pinged in the inboxes of reporters across the region. 'Los Angeles General Medical Center, a public hospital run by the L.A. County Department of Health Services, is seeking the media and public's help in identifying a patient,' the flier said. In the photograph the man gazed up from his hospital bed, eyes fixed somewhere past the camera, looking as lost as could be. The buzz cut man from North Vermont was not the only Doe in the hospital's care. On the same March 3 morning, the county asked for help identifying a wisp-thin elderly man with a grizzled beard and swollen black eye who'd been found in Monterey Park's Edison Trails Park. Three days later, it sent out a bulletin for a gray-haired Jane Doe picked up near Echo Park Lake. In her photo she was unconscious and intubated, a bruise forming on her forehead, wires curling around her. By the end of the month, L.A. General would ask the public to identify four more men and women found alone in parks and on streets across the county, people whose cognitive state or medical condition left them unable to speak for themselves. All of the hospital's Does are found in L.A. County. That doesn't mean they live here. L.A. General is 2 miles from Union Station, where buses and trains deposit people traveling from all over North America. A few years ago, Coffey and social work supervisor Jose Hernandez found themselves trying to place an elderly couple from Nevada, both suffering from cognitive decline, who arrived at the station and couldn't recall who they were or where they meant to go. Fingerprinting is rarely an option. The federal fingerprint database can be accessed only for patients who are dying or are the subject of a police investigation, hospital staff said. Even if those criteria are met, the database will only yield a name if the person's fingerprints are already in the system. And even that's not always enough. Late last year, law enforcement ran the prints of an unidentified female patient who had been involved in a police incident. The system returned a name — one the patient adamantly insisted was not hers. 'Now the question is, is she confused? Do we have the wrong fingerprints-to-name match? Is there a mismatch? Is there a person using a different identity?' said Coffey. 'Now what do we do?' In end-of-the-rope scenarios such as this, the hospital turns to the public. The press releases are carefully phrased. The hospital can disclose just enough information to make the patient recognizable to those who know them, but not a word more. Federal laws forbid references to the patient's mental health, substance use, developmental disability or HIV status. The releases are posted on the county's website and social media channels. Local media outlets often publicize them further. In 'the best outcome that we get, we send [the notice] out and we get a hit within a couple of days. We start getting calls from the community saying, 'Oh, we know who this patient is,'' Hernandez said. About 50% of releases lead to such positive outcomes. For the other half of patients, the chance of being named gets a little smaller with every day that the phone doesn't ring. 'If we don't know who you are after a month, that's when it becomes decreasingly likely that we're going to figure it out,' said Dr. Brad Spellberg, the hospital's chief medical officer. On April 9, nearly two months after the buzz cut man's arrival at L.A. General, the hospital sent out a second release about him. His scrapes had healed. His black hair was longer. His stubble had grown into a wispy beard. 'Patient occasionally mentions that he lives on 41st Street and Walton Avenue,' the release said. 'Primarily Spanish speaking.' But he still had no name. It is possible for a person in this situation to be stuck at L.A. General for the rest of their lives. One man hit by a car on Santa Monica Boulevard in January 2017 lived for nearly two years with a traumatic brain injury before dying unidentified in the hospital. As of late 2024, a few Does had been there for more than a year. If a patient has no identity, L.A. General can't figure out who insures them. And in the U.S. healthcare system, not having a guarantee of payment is almost worse than not having a name. Skilled nursing facilities, group homes and rehabilitation centers won't take people who don't have anyone to pay for them, Spellberg said. The county Public Guardian serves as a conservator for vulnerable disabled residents, but can't accept nameless cases. Unless a patient recovers sufficiently to check themselves out, they are stuck in a lose-lose scenario. They can't be discharged from L.A. General, whose 600 beds are desperately needed by the county's most critically ill and injured, but also can't move on to a facility that provides the care they need. 'We're the busiest trauma center west of Texas in the United States,' Spellberg said. 'If our bed is taken up by someone who really doesn't need to be in the [trauma] hospital but can't leave ... that's a bed that's not available for other patients who need it.' L.A. General is staffed to handle crises, not long-term care of people with dementia or traumatic brain injuries. Bedbound patients could get pressure sores if they aren't turned frequently enough. Mobile patients could wander the hospital's corridors, or fall and injure themselves. 'You're trapping the patient in the wrong care environment,' Spellberg said. 'They literally become a hostage in the hospital, for months to years.' The man found in Edison Trails Park eventually left the hospital. So did the gray-haired woman, whose name was at last confirmed. The man from North Vermont is still at L.A. General, his identity as much a mystery as the day he arrived four months ago. The Does keep coming: An elderly man found near Seventh and Flower streets. A young man found near railroad tracks. A man with burn injuries and a graying beard; another unconscious and badly bruised. All sick or injured, all separated from their names, all their futures riding on a single question: Does anyone know who this is? If you have information about an individual pictured here, contact L.A. General's Social Work Department from 8 a.m. to 5 p.m. Monday through Friday at (323) 409-5253. Outside of those hours, call the Department of Emergency Medicine's Social Work Department at (323) 409-6883.

Yahoo

11-06-2025

• Yahoo

What Is ‘Dusting'? The Viral TikTok Trend That Has Led to Teen Deaths

Experts are warning parents of a popular new TikTok trend that is leading to teen deaths. The dangerous practice is called 'dusting,' and, no, it has nothing to do with chores. Dusting involves inhaling computer duster spray to get high, and it's already caused multiple fatalities. Dusting, also known as 'chroming' or 'huffing,' involves inhaling the chemical difluoroethane, which is often found in duster spray per Treatment Magazine. This method of getting high has been around for decades, although, it seems like TikTok has sparked a resurgence in the trend. The outlet also reported that dust removers are more likely to result in death or severe bodily harm than any other inhalant. More from SheKnows Teen Girls Are Obsessed With This New Lip Gloss for 'Guava Girl Summer' Dr. Randy Weisman, who leads the intensive care unit at HonorHealth Scottsdale Osborn Medical Center, told AZ Family that this can make people feel drunk and euphoric for a couple minutes — but even that is long enough to damage the liver and lungs. Just one huff can be irreversible and potentially deadly. 'This is extremely concerning,' Dr. Weisman told the outlet. 'When they inhale these chemicals in the gas, it will actually replace the oxygen within their lungs and within the rest of their body.' It leads to 'failure of the liver, heart failure, disease of the lungs.' The risk of death is huge for this risky trend. Recently, a 19-year-old from Arizona named Renna O'Rourke died of sniffing death syndrome after dusting. Her mother Dana O'Rourke told a local NBC outlet that her daughter 'was just the most caring, beautiful soul I've ever, ever known.' According to Dana, her daughter went into cardiac arrest and spent several days in the ICU before being declared brain dead. Many other teens have died from this, according to Dr. Weisman. Even celebrities like Aaron Carter have died as a result of huffing compressed air, per PEOPLE. One of the scary parts of this trend is how easy it is to buy the keyboard cleaner. Dana told NBC that Renna and her boyfriend bought the keyboard cleaner online and had it delivered via Door Dash. 'There's no ID required. It's odorless,' Dana told AZ Family. 'It's everything kids look for. They can afford it, they can get it, and it doesn't show in mom and dad's drug test.' 'We want to make sure that we use our tragedy so that no other parent has to experience looking at their child on life support and a ventilator and not breathing on her own all because she huffed out of a can,' Dana told NBC. Elena Zavalza, program director with notMYkid, gave Good Morning Arizona tips for parents who want to protect their kids from this trend in a recent said to look for bloody noses, a lot of dizziness, nausea, and thirst; check for missing household items and chemicals that come in aerosol sprays; and pay attention if your child is using a lot of rags, which might be used to spray the chemical in before inhaling. Talk to your teens and tweens about this by 'approaching it … out of curiosity' instead of accusing children, Zavalza said. Instead, ask them, 'Have you heard about this?' 'And even if they have experimented or tried to or thought of doing it, having that conversation with them of the risks, which could be death,' she of SheKnows 27 Times Katherine Schwarzenegger Proved She's the Sweetest Mom 32 Celebrities Who Froze Their Eggs or Embryos From Free-Range to Fully Offbeat, These Celebs Embrace Unconventional Parenting Styles