Mary Rose on Memoir, Mortality, and Meaning

Mary Rose never expected a cancer diagnosis to become the catalyst for some of her most inspired and important writing.

A former marketing executive, corporate storyteller, Mary Rose is a lifelong writer who joins Mookie to discuss her battle with multiple myeloma, an incurable blood cancer that forced her to confront not only a life-threatening illness, but the childhood trauma she thought she'd left behind decades earlier.

What began as simple health updates for friends and family evolved into a deeply personal memoir, Inhale, Exhale, Survive, a story that explores the intersection of trauma, illness, resilience, and the struggle to retain agency inside a healthcare system that can often leave patients feeling powerless.

Mary shares how writing became both a survival mechanism and a form of service, helping her process her experience while creating a roadmap for others facing serious illness. Along the way, she and Mookie dive into the rise of the empowered patient, the role of AI and online research in modern healthcare, the challenges of navigating complex medical systems, and why understanding your own condition may be one of the most important forms of self-advocacy.

The conversation also veers into the craft of writing itself. From the limitations of "show, don't tell" dogma to the flood of AI-generated content reshaping publishing, Mary and Mookie debate what makes writing truly human—and why authentic storytelling still matters in an age increasingly dominated by algorithms.

Part memoir, part writing workshop, part exploration of survival itself, this is a conversation about finding meaning when life veers off script, reclaiming your voice when circumstances try to take it away, and transforming adversity into something that can help others feel a little less alone.

Mary Rose can be found on Substack, where she writes about life, illness, healing, and patient advocacy. Her upcoming memoir, Inhale, Exhale, Survive, chronicles her journey through cancer, trauma recovery, and the enduring power of storytelling.

The Guest

Mary Rose is a retired owner of a production company who has shifted from high-tech marketing stories to personal essays and memoir. Her work explores survivorship, early childhood trauma, and the life built on the other side of serious illness. Her memoir, in the final editing stage, traces the unexpected collision of unresolved childhood trauma with a multiple myeloma diagnosis and the stem cell transplant that followed. 

She writes two Substack publications. In Love Heals, her weekly essays are attracting a devoted readership drawn to her unflinching honesty and spare, grounded prose. In Myeloma Fighters, she co-authors with medical experts to create medical content that bridges the gap between emerging science and the people living within it. She also facilitates a myeloma patient and caregiver support community.

On Substack:

https://maryrose23.substack.com/

https://myelomafighters.substack.com/

 On Instagram & Threads:

 @maryrosewriter

Transcript

SPEAKER_00 0:00

Hello and welcome to Inc. vs Algorithm, the author's podcast. I'm thrilled to have author. On the podcast is Mary Rose. Welcome aboard, Mary.

SPEAKER_02 0:18

Thank you, Mugie. It's really good to be here today.

SPEAKER_00 0:21

I know you through the Monday morning writers group, local to Cincinnati, and they let me come in virtually from California. I also know you from Substack, where you have two stacks, one dedicated to health and clinical issues and challenges and messages and ideas, and the other one more personal. Do you want to tell our viewers and listeners where to find you and what you've been up to?

SPEAKER_02 0:55

Yes, definitely. Where to find me on Substack is uh Mary Rose23.substack.com. That's the primary location.

SPEAKER_00 1:06

I'll put a link in the description below so I can click on that, folks, to find Mary Rose on the stack.

SPEAKER_02 1:15

And that's the primary. So let's talk about that for a minute. And what that Substack is, uh it started out as updates that I was providing to my friends and family uh soon after I was diagnosed with myeloma, multiple myeloma, which is an incurable blood cancer. And uh what I found was that uh I it was not sustainable for me to keep texting people, letting them know how I was. I was getting sicker and sicker in treatment. So I set up a newsletter and um and that got me started. Uh what I found was that when you're doing a an update to your friends when you're sick, you leave out a lot of stuff because you know you want them to know a certain amount of things, but you don't want to overwhelm them either. So I was still writing behind the scenes, and that is turning into the other aspect of uh not Substack a memoir that's in its uh fourth edit right now. Hope to soon have it on its way to an agent.

SPEAKER_00 2:25

So just to summarize, you started sharing a newsletter with friends and family, and obviously you can't go into too many details. You don't want to freak people out, and also you want to journal, you want to experience the catharsis of letting it out on the page, and that became a memoir that has evolved to the point where you're close to publishing that. Is that right?

SPEAKER_02 2:48

Yes, absolutely, and taking it a step beyond even just the journaling. Writing, writing is just my life. I mean, it is it is how I live and breathe. Um, and it's been that way for a very long time, since I was a child, really. I made my my uh career was writing for marketing, you know, writing for other people. When I retired, I started this concept of oh, what if I just wrote dialogue? What if I wrote narrative? How fun would that be? And I'd never played with that, I'd never had time for that. And I was doing some of that at the point that I was diagnosed. Uh, and so it was a natural extension of that to create the newsletter, and it was just as natural for me to keep the things that didn't feel appropriate. So, to get into specifics, very few people know um that I came from a pretty horrific childhood. I had a sadistically abusive mother, and I'm not using any of those words lightly. Um, and they don't know about that, about me, because I worked really, really hard to get through that, to get past that, to move on, and um, and went on to have a really good life, you know, to run a company, to own a company, uh, to provide good service for my customers, to have lots of friends and and love in my life. So you would never know it to look at me. And then cancer happened, and whereas I thought everything that I had done up to that point had transcended me past that, I learned that it all came right back because having cancer, um, being thrown into the medical environment, um, that is by anyone's fair estimation, not a well system right now. Uh and and and having to uh effectively hand over your life to other people is very vulnerable and it takes you right back down to being you know single-digit kid kind of person, you know, in so many ways. It it hits that trigger, and that's what was going on for me. And I was shocked because when you put me in that time zone of my life, um, these these were life and death times. Interestingly enough, here I was in a life and death time as a grown-up. And uh, and so I was making meaning of that, I was taking note of that. I was noticing how trauma reactions that I had not experienced in decades, literally decades, were resurfacing and having an impact on what it was like to be a patient. You know, how much I felt I could trust someone, um, how it would impact me when I ran across inevitably, you know, the human beings in the medical system that are overtaxed, who knows what's going on in their lives, but they're not necessarily at their best. Uh, and um and that was often hard, and it was hard to deal with. And I I suspect it harder than a lot of people normally would have because I think you know, I recognized pretty well that it was a trauma response I was having, and so I started looking at them, okay. How do I deal with this? Because that's what I've always done. How do I deal with this? I'm a researcher like crazy, I like to look things up, and I looked and looked and looked and looked, and I found lots of books on cancer, particularly even myeloma. I found lots of first-person books on myeloma. I read all of them. Um, and I also found a lot of books on trauma. What I did not find was any book that put the two things together. And that's what I needed. Um, and so I I did the next best thing, which was, as you say, I journaled about it. I wrote about it, I noticed the things that were going on, I wrote it down, and didn't really give a whole lot of thought to that until several months later. And I thought, oh, I actually have here what I'm looking, what I was looking for. And I think it's my my obligation. Um, certainly it feels very um service, yeah, service is the word that comes to mind. It's very service-driven to write this memoir about what it was like and what I went through. Um, and in doing so, I didn't want just a okay, and then this happened and this happened and this happened. I what I wanted was a book that somebody who doesn't have cancer and maybe doesn't even care about that, as much as I never cared about walking the Pacific Trail, but yet read Cheryl Strain, that people would want to read. Because I think that there's a number of things that have come out in the writing, and so I am told from others that others relate to, regardless of what they're dealing with.

SPEAKER_00 8:23

Bad news can be very good news for a writer, at least in terms of sparking creativity and using the writing as that kind of catharsis. I remember reading one of my short stories to the writers' group, and Richard Hoskins commented, Mookie, you're so lucky to have had such a horrible childhood because now you could share such wonderfully written stories about what you went through. So uh the silver lining, I think, with with what you're going through is that it's activated a number of things simultaneously. It's reactivated your passion for writing in a way that's perhaps even more direct and visceral than you were experiencing before. You're using it as a catharsis for what you've gone through. And I'm assuming you're also using it as an opportunity to reach out to other folks, other people enduring some of the things you had to to create empathy and connection that way. And to your point, just the general public who want to read an engaging story, who who see you as a hero overcoming these obstacles and be inspired in their own way.

SPEAKER_02 9:42

Exactly. What you said, exactly, and the one thing I would add to it is um my hope is that if even a handful of people read the memoir and don't feel alone, then I will have done what I was supposed to do. Because that's the hardest part about it, is going through what you and I experienced as kids is very isolating. And um and yet, I again I did the research, I did the math, I figured out that there are conservatively speaking, 10 million adults in the United States of America over the age of 65 with critical illness who have a traumatic background. That's that's just that niche, 10 million of them. And um so I in terms of looking at the numbers, I know I'm not alone, but it felt very alone. And then I felt much more connected when I began writing uh for two reasons. One because just getting it on the page, there's a relationship with the words, right? And secondly, I started sharing that writing with people, and the other thing that was that proof positive that I was not alone, I my Substack started off just for friends and family. It was just my little tribe, you know, 65, 70 people. And uh today uh I am approaching 300 people, and I don't know who they are. And they got there because in the beginning it was because someone said, Can I share this with my niece? Can I share this with my dad? Uh, I read what you wrote. Oh my god, I'm going through this. And the words started to spread quietly, very, very, you know, softly, very easily, slowly. I'm not in this to like suddenly, you know, bust out. But I wouldn't mind if that happened with the the um when when we go to press, uh, most importantly, because I think that what I have to say is important, and um, I want to see it get enough distribution that the the people who need it can see it.

SPEAKER_00 12:08

You've been reading sections of your memoir, so I've been exposed to it. And what I like the most about it is how you seamlessly blend clinical knowledge, your experience as a patient, pretty much in real time, navigating this labyrinthine situation. You've got good guys and bad guys, so there's drama, and it's unfolding in a way where you're keeping the reader engaged or the listener by this sense of both being the main character and also having a depth of knowledge about what you, as the character, is going through. So that it's it's meta, it's multi-layered. And I think that that creates a provocative, compelling narrative that goes beyond just that 10 million you describe in terms of people who are enduring analogous situations, but telling a hero's journey through the American health system in a way that universalizes, if you will, that that challenge. And in that sense, is very relatable and dramatically compelling.

SPEAKER_02 13:31

Thank you. That that's a huge compliment. I I really appreciate that. I I found myself as you started, you know, being a little fluttery about, oh gosh, what how should I respond to that? And then I just sat back and listened and took it in. And that that's a change, you know, that's a real piece of progress. Um, and and and I'm particularly liking what you're saying because it is exactly what I'm trying to do. It is exactly what I want to do with words. I love working with words. I I've always loved it. I think I've said that even when I was writing for marketing stuff, you know, and then you have to be really succinct, you gotta pick the exact right word on so many levels. Um, but I love writing with words, and I I love creating those pictures. I want you to sit right next to me. I want you to snuggle up next to me inside that CT scanner, you know. I want you to hear the bang, bang, bang, bang, bang, um, and and feel it and understand it. Uh I guess maybe that goes back to some of what Richard commented on, how lucky we are that we had these kind of upbringings, because what it comes down to is I want to be seen. And in wanting to be seen, I paint pictures verbally that help others not only to see me, but you know, jump in there with me. And that is just pure joy for me. That is pure joy. Uh, one of the things that you said also brought this to mind about how I explain medical stuff. I I need to understand what's going on with me. I'm absolutely uh starting to become known and willing to say I am a patient advocate for myself and others, actually. I got a phone call this afternoon with someone who needs info about how she can work within a system that she's struggling with. And um and so it's important to me to understand what's going on medically. I I've never I never ever had enough trust that I would just say, sure, doc, what do you think I should do? I'll just do that thing. It's more like explain to me what's going on with me and how we can work together to figure out the right way to do this and the way that's gonna work for me. Because in one situation, a ladder, um, you get a better result. You certainly get a more personalized result. In the former situation, you might get a good result, you might just be on a conveyor belt and treat like every other person, and maybe that's not gonna work out well for you. Um, but breaking complex medical information down into something that is easily understandable, which totally pings off of my career background, you know, take a basic piece of information, start where people are, and then move them forward into a different understanding of that, uh, is what I do. I do it for myself, I do it for others. I can't tell you the number of people I've I've had to explain. I have an explanation for how this blood cancer works, and it involves a group of hoodlums that are hanging out on a street corner and multiplying and bringing others in, you know, and then kicking stuff down and not doing their jobs and uh poking holes in in buildings just so they can. And that is kind of the perfect explanation of what goes on with end blood when you've got myeloma. Um and yeah, and I'm thinking of the pictures I've drawn around that too. Sometimes I I dip over into the graphic art side of my life and and use that to help inspire the writing. But that's what the other Substack is about is uh co-authoring with some of the top leaders in myeloma and cancer and adjunct services uh to create articles that speak more easily directly to a patient. And it's that is uh that is rewarding. It is um it is something that had to go on hiatus for a little bit for a whole bunch of reasons, but uh is getting relaunched, and I'm I have a long list of topics to cover, and I'm looking forward to to making complex medical problems easy to understand.

SPEAKER_00 18:17

Digital communication and social media has been a double-edged sword. On the one hand, it's helped to destroy democracy with our ever-increasing polarization, uh, led to genocide in Miramar and all sorts of nasty, nasty stuff. On the other hand, though, it's empowered individuals with a democratization of information and knowledge like never before. And this has been reflected in what's been called the e-patient movement, the electronic patient movement, if you will, where before you had a very paternalistic healthcare system where whatever the doctor said, you just took it in and that was it. You got one opinion, then you went home and you dealt with it. And the ability to Google things, to do your own research as a patient, and then to take it to another level where you could share your story and have other patients share their experiences with you, and have other people comment, give you support, give you some empathy, give you some best practices and knowledge. It created a network and a community of patients online in message boards, forums, Facebook groups, now Substack is incredibly powerful and uplifting. And you're entering that in a way which is very impactful and puts those best practices to use through your writing. And I think that that's one of the great aspects of the social medias where we're able to connect with people like never before and share stories and insights. And the flip side of that, too, is as you're describing, you like information, you like to know what's going on. And now we go from Googling it to AI chatbotting it. So the facility that we've got at our fingertips for gaining knowledge and understanding, oftentimes of very sophisticated, complex medical science and procedures, is unprecedented. And to your point, repackaging that in ways that are stories that people can understand, like your analogy of bad guys taking over a neighborhood, analogous to the cancer invading your circulatory system. So all of this is a perfect storm of using the latest tools and technologies, the shifts in behaviors, to get the most out of this ability to connect with each other and share empathy and ideas. And lastly, uh, your style, which I have to end you with for explaining if you're looking at literature now, regardless of genre, science fiction, fantasy, horror, personal narrative, memoir, it's being drilled into us. And I've got a lot of guests, a lot of writers, and I hear it over and over again, that we all need to show and not tell that there's a specific way we need to write books, whether it's a memoir or a novel. And if you're not in line doing what you should be doing, then it's no longer valid, and your writing sucks, and no one's gonna read you. So I bring this up because you stop your memoir and you go into how a scanner. Works and you talk about the technology. You stop your narrative, and then you go into what this cancer is doing to your body when you're experiencing it. Now it's contextually relevant, it's not like you just randomly interrupt your story with a Wikipedia article. But what I like about it is, in a sense, it's a throwback to some of the great writing that I think we've forgotten about in this frenzy of literary homogenization, where we're all sounding alike and doing all the right things on the page. And what's lost is this passion for personality, this enthusiasm for just explaining when you need to, expressing your opinion that this situation sucks. And here's how I feel about it, as opposed to just cinematically sharing scenes and externalizing internal states that are just dying to come out. So I appreciate that hearing your stuff and reading your stuff, and I do that too, so it's not completely altruistic. I put up the soapbox. I'm gonna talk about what I want to talk about because I think it's gonna infuse the story with more passion, more dimensionality, more excitement by getting in deep. Come along for the ride. We're gonna learn about science, we're gonna learn about medicine, we're gonna learn about caregiving. You're gonna learn about how I feel about it and how I feel about how I feel about it.

SPEAKER_02 23:44

Exactly. So, you know, um, having, you know, not a bestseller yet. I don't know that I particularly have the the right to stand on this soapbox, but I'll do it anyway, and say, I don't believe in uh show, don't tell. I believe in show then tell. And and what that's about for me is that I will give you enough information in scene to get you right there in with me, so that you want to know what else is going on. And and that's that's what I do. So and and it is a reflective way to work because a lot of times I'm I'm I'm showing you what was happening uh and how I felt and that sort of thing. Uh, but then in the end, when I start telling more about it, that's when I'm telling a lot about my feelings. Sure, I'll give you feelings in, you know, I sighed deeply, you know, I fell back in my chair, you know, whatever, those kinds of visual prompts. But but it's I think it's the right mix of both and the right order of both that is important. You touched on something earlier that I want to swing back to because I don't want to get too far past this, and that had to do with looking up information and the old Google, Dr. Google. So I have a bit of a story about that. Before, long before I was diagnosed with cancer, um 10 years before, I had a funky blood test one day that was identified, uh, trying to sort out a different problem I was having with peripheral neuropathy, uh, the thing that makes you not feel your feet except when the fire comes out of your toes. And um a funky test showed up, and and the doctor said, Oh yeah, we're gonna refer you to somebody else, and and they'll, you know, my staff will be in touch. And I took that lab report from him and said, Okay, fine, doc, that's great. Well, I was very busy running an extremely busy production company at the time, and and we had some insane deadlines happening right at that particular time. So this this went to a bottom of a stack on my desk in the corner, and I didn't think too much about it until uh almost six weeks later. And we'd just done a wrap. I was the last person in the building, and uh I decided to you know let off some of that energy with cleaning up my desk a little bit, and I came across this piece of paper and I went, damn it, they never called me back. Huh. Well, I wonder what this is about. So I Googled, and truly I my breath stopped because the big cancer word was right there on my screen, and I didn't know which end was up. I I I I I I was sitting alone at 7:30 at night in my office when Dr. Google told me I had the potential of having cancer. And what happened after that was a wonderful contact with my primary care doctor whose cell phone I happened to have. I love that man. And um he said, Okay, okay, okay, we're gonna take care of this, you know, we'll deal with this in the morning. We've got this and this, breathe, you're okay. And for God's sakes, don't consult Dr. Google anymore. Leave it alone. Okay, that was fair. I didn't follow what he said, but it was fair. And um, the good news was that long ago, what I found out was that I only had uh a minor condition, benign condition, could be a precursor to myeloma, but it wasn't. But I had done enough of that doctor googling that I learned just how horrible a disease it was in 2013. I was reading stuff that was probably at that point five and six years old, so going back even further. So it put a lot of fear into me. And then, you know, yay, I don't have it, so I just moved on with my life. Fast forward 10 years, I do have myeloma. I have been diagnosed, and I'm now, you know, running headlong into treatment, and I'm listening to a seminar by Dr. Drury, who was one of the fathers of treatment of myeloma. Brilliant man, we lost him a couple of years ago, sadly. Um and what he said was, I encourage you, and mind you, he's speaking to patients. This is a patient seminar. I encourage you to get on Chat GPT or Claude and look up what questions you have about your disease. And he said, I don't think this replaces your doctor. No, that's not what I'm saying. What this will do is help you frame the questions that you need to take to your doctor because some of it is just going to be understandable and that's it. And you won't have to spend that time, that precious few minutes that you have with your doctor talking about that. You can get right down to exactly the parts that you don't understand and or the parts that you say, hey, I read about this, you're suggesting that. Help me reckon with these. And um, so I was, you know, backed at. Oh, I don't know if I ever stopped. Maybe I stopped, I don't know, but I certainly felt justified in doing that. And I also learned something hugely important, hugely important about certainly any kind of major illness, and maybe it works for everyday stuff. Write a list of questions, put them in priority order. You only get, depending upon where you're being treated and what you're going in for, you have somewhere between seven minutes and if you're lucky, 30 minutes. That's it. That's it. Until your next appointment, thank you very much. That'll be two weeks, that'll be a month, that'll be six months. So it's really important to be focused. That's really important to be focused. But it's also important to know what goes where. And what I mean by that is my anxiety, um, my fears, my frustrations, none of that stuff belongs in an exam room. That belongs with you know, friends, therapists, patient relations if you find that you have to go that route. Um but in again, you're wasting precious time. You're wasting precious time if you don't go in and to treat it like a business. It is a business transaction. You've got information about how to make me better. I need to hear that information and determine whether or not I'm gonna buy. And and you need to be in a business frame of mind to do that.

SPEAKER_00 30:53

Questions to ask your doctor. That's the staple of patient educational resources for all pharma treatment companies. And there's a reason for that, and the reasons are exactly as you describe. You got a very short window to interact, you need to frame it up in ways that you get effective prescriptive answers so you know what to do and when to do it, and you don't want to leave things out. The good news is that the resources available now, even through AI, maybe especially through AI, empower patients like never before to just gain a better understanding of what they're going through, maybe even understand some of the science, and become better positioned to ask those key questions of your human doctor for the six minutes that you've got them. Back in the day, doctors would often dread the Dr. Google for the reasons that you initially described there. And there was a feeling you don't want to give patients enough to hang themselves with misinformation, misdiagnoses, and the like. And now we've got a tsunami of deliberate misinformation online. We've got conspiracy theories, we've got anti-vax hysteria. I just read statistics that preventable diseases have reached record heights across the United States, everything from measles to tetanus, because people are not trusting their vaccines for political reasons, all this, all this stuff. So, the more information you have, the more power you do to make decisions that will impact you favorably. Be discerning, use critical thinking, try to find authoritative sources, and at the very least, have the enthusiasm and curiosity to learn more about what you're going through. And the tools are at your disposal, coupled with a little bit of discernment to cut through the clutter and really get a handle on what you're going through. Knowledge is power, and I think in your writing, you're encouraging people to do exactly that. So when you're in your narrative and you're enduring an uncomfortable situation, you're describing the human drama of the story, and then when you segue into a section where you're actually explaining and getting into the science and getting into the health system, it rounds it out, it adds that punch to it in a way that ultimately increases the value of your of your memoir and also educates people. It's a great way to get educated. I know a lot of people who read they say, I don't read history, but I read historical novels. We need stories, we need everything couched in good stories to keep our interest, to stay focused. And I think you do a great job of balancing these two, which is frankly, as I mentioned before, very refreshing because I'm exhausted by generic prose, I'm exhausted by people obsessing about following the rules and sucking the life out of what otherwise would be a compelling narrative.

unknown 34:22

Yeah.

SPEAKER_02 34:25

Well, when I first transitioned to this type of writing, and I really do think that it was a transition because you know I came out of tech, you know, I was explaining really complex technical situations. Um and when I did so, we always put them into how this would affect your life. Uh so yes, I absolutely got involved in, and my team got involved in doing technical writing about how you put the widgets together. But we also did uh the bigger part of what we did was create stories for CEOs for their keynote speakers that would help take a box that blinks, that's all it does, and explain to you how this is going to turn your life around because this router is going to make it possible to could, you know, whatever. I mean, some of the most boring pieces of equipment have the most incredible possibilities. And and that's where, you know, that that's where I cut my teeth on how to do this sort of stuff. And so when I made the transition, one of the first things I did was I read several books, uh, I want to say more than 12, on the subject of how to write. And I went after people that I respected as writers, you know, all of the maybe that's not correct to say, most of the greats, most of the great writers have got a book out there that says how to write a book. Uh, and probably one of my most favorite, I mean, you know, there was of course, you know, the usual's Anne Lamotte, bird by bird, you can't beat that book. I mean, that and Anne Lamotte does not follow the you know the the the story, the the standard line about how to write. Her writing, her writing is always surprising and wonderful and fun and keeps you going. Um, but hers and others like that. But the one that I read that I really liked was Stephen King's book. And the reason that I read Stephen King's book about how to write, I think it's called on writing, um, is because I cannot watch his shows, I cannot read his books. He scares the living daylights out of me. And I thought, I want to find out how he does that. And so I read, you know, his as well. And so that was how I started reworking how I was writing things and came to understand um to tell the story, you know. Interestingly enough, my business card always read corporate storyteller, and and now it's I don't know, medical storyteller, human storyteller, I don't know. But um to tell the story and in a compelling way, and those conventions just they don't make a lot of sense. And honestly, that we have walked around it a little bit in this discussion, Mookie, but then there's also all of that slop out there that is written strictly by AI, and it's frustrating to me because there are there's one guy that I do follow, and his writing is 100% AI. I can tell it, anybody could tell it. But he has such great topics that that I will I will read it, you know. I it it it's like fingernails on a chalkboard to get past how many times he uses the word quietly, um, that that word and all of the M-dash and all that other stuff that are the tells. But I will read his stuff because he has important ideas. What makes me sad is that clearly, as uh the fellow is a radiologist, he doesn't have time to spend the time to just write the damn stuff, you know. You don't need AI to write it for you. Maybe it'll help you edit, maybe it'll help you find the words you need, it will absolutely help you find the research that you need to, you know, write about something, whether I mean even fiction has to be research, right? Um but yeah, it's just yeah, I I'm with you on the the frustration that I have with because I'm looking for other brilliant writing so that I know how to do that and how to be that and how to hopefully end up with a following that that puts me in that league. That's where that's where I want to be.

SPEAKER_00 39:13

I call it AI porn. And and like pornography is uh it might be immediately fulfilling for a little while, but it lacks any kind of of humanity and emotional connection. So I have an AI porn indulgence, and that's math videos on YouTube. So uh several channels have sprung up and they pump out a lot of these vignettes on number theory and calculus, and I'm a dork that way, and it's clearly AI, and they're spewed out with such rapidity that it can't really be human, it's just out there in this tsunam tsunami of AI porn slob, but it's fitting of the of the content where they're talking about a theorem and the voice is kind of human but a little bit mechanical, and they very logically and rigorously go through the proof, and I dork out. So if you're if you're reading a new clinical study on myelomo, or there's this authoritative piece, and you see the quiet leys and the m-dashes, you'll get through it because it's fulfilling a function. Where we draw the line, in a sense, is we're human beings telling stories to other human beings, and you might use grammarly as the spell checker, and then you might even throw your stuff in AI to just check for mistakes, but it has to come from here because if you want to connect with a human here, then there are really no shortcuts, and the more you sweat it out, and the more you struggle with that prose, and the more you you squeeze out what you're really trying to express, your reader can feel it, it comes through the prose that you're writing. And if a bot generates it in a nanosecond, it's easy come, easy go. It's the essence of transactional creativity, and it really defeats the purpose. Socrates distrusted writers, he didn't write anything down. Plato was running after them with the feather. And Socrates hated writing because he thought it was by nature disingenuous that if you're gonna have the Alenchis with somebody, you're gonna debate and you're gonna bring out the truth. You need to look people in the eye, you need to smell them, you need to see their facial expressions, to see how they're reacting to your arguments. And it's ultimately a human-to-human, interpersonal, real-time exchange of ideas, but also passion. And writing since the beginning has been very, very useful. It has incredible utility to it. You could freeze it in time, it could be transported from one place to another, and it could even convey cross-generational knowledge. You don't need to rely on people's memory and ideas being recited with all the errors and distortions. It's written, it's communication. But we forget about what's been lost, and and we need to retain that, I think. And the best way to do that is to write from the heart and don't get blindsided by all this AI bullshit. It's there, it's not going away, but I think ultimately the human will prevail. Why? Because the bots are just regurgitating stuff that human beings have done, and it does a great job of mimicking us, but what's the damn point of writing and reading? It's one human communicating their passion, their ideas to another. And if you lose that, then what's the damn point? There isn't one. So I'm more Pollyanna about this, I think, than most. I don't, it is a threat in the sense of people are having a harder and harder time differentiating the AI porn slop from a passionate expose of what went wrong in the hospital. But that shouldn't discourage us as writers. And we all need to have faith in ourselves. And the last point I want to make is if you want to show and then tell and then learn the rules like a pro so you can break them like an artist, then you be that artist. You you write the way you want to because it's coming from your own damn self. You're unique, you have your own point of view, and you've proven to yourself that you're good at this. And the world. Deserves an honest creative voice sharing a struggle that everyone can empathize with. Who gives a shit about these machines that use? I was just talking about math. They use matrix mathematics to compare the weighting, the aggregate weighting of the relationships between one word and one phrase and another that's been crunched together from thousands and thousands of gigabytes of stolen human content. That's what AI is. There's no soul, there's no sentience, and it's got the IQ of a mouse. Seriously, there's no brain, folks. And if you're threatened by that, and if you're trying to follow its lead, I don't know, man. Tough luck. Stick to your own values and stick to your own creativity, and you do you. And you'd be immune to all of this noise and nonsense. That's my show can tell rant. Moby Dick. When Herman Melville wrote Moby Dick, no one got it. It was a flop. And Herman Melville died pretty much alone, pretty much broke, and pretty much forgotten. It wasn't until about 20, 30 years later, a whole generation, that I believe a university professor and critic rediscovered Herman Melville, and he became the Herman Melville that we know and love. I bring up Moby Dick because it's an encyclopedic narrative that spends an awful lot of time talking about harpoons, boats, sperm whales, nautical conditions, how to tie a knot. And it does this with intentionality. And every single reference is a symbol related to the themes that are brought out by the narrative of a human drama. And it's beautiful and it's art and it set its own precedent. So, lastly, kiss my ass with this show-don't tell kind of stuff. I'm tired of hearing about it. I think younger writers need to learn the rules and learn how to show what's going on. But it's for the birds with this workshopping and developmental editing and all of this bullshit, which I think is strangling the creativity of a whole generation of writers who, lastly, are competing with the AI porn bots. Let's represent the humanity of this. And if you're gonna make a mistake on the page, then go for it. Because at least it's human.

SPEAKER_02 47:26

And to um just say it a little louder, uh, a little more. The difference when people write with AI, as you pointed out, it's soulless. But why? Because if I say describe what it would be like in uh, so I'm really on to this because I just did this, uh, a full body, a whole body, it's called a whole body MRI. Describe the process and uh what goes on in a whole body MRI, and I get back some sort of thing about that. Yeah, well, can you give us a little bit more about how the person might feel or whatever? It you can keep trying to prompt AI to give you all of that, but what it can't give you is how I felt about it, you know, how I experienced it, how I was surprised that a whole body MRI is not in a big long chamber, but I came out the other end and I took a deep breath, and I'm oh, okay, this is gonna be easier than I thought, because it's a it's an hour and a half process. And I thought I was gonna be inside of a tube, and I wasn't. And you know, it's just all these little bits and pieces like that that are unique to my experience of it, and that's where the story is. It's what is unique to my experience. The rest of it is, you know, think about like the articles and adjectives and adverbs that are in it. You know, it's like, no, the story is my unique experience, and uh and that's important, and that makes a difference. And I have come across uh some AI writing that I thought, oh wow, okay. So they're approaching some of the kinds of stuff that I'm doing, but they're not doing it anywhere near like what I can do, and there's this other part, and I I don't know if it even fits exactly into this topic that we're on right now, but there is a part where you have your people, your audience, your readers. And that's not everybody, it's not everybody in the whole world. There are people who are going to read what I'm writing and go, they're not only not interested, they may not like it. They may not like it at all. It may offend them, it may bother them. And that's okay. They're not my people, they're not the people who want what I've got, who need what I've got, who seek what I've got. And and that's been kind of important, not kind of, but super important to keep that in mind because I think at least my experience of being around writers, a lot of them, over the last several years, so we tend to have fragile egos. We can get, you know, you get 50 comments on writing over a course of six months, let's say, being very uh uh conservative here. And and they're all good, they're all good, they're all good. And one guy says, You write like shit about absolutely nothing, you know, which is the one that's gonna stay with you and it's important to judge in that stuff. In fact, I just saw a movie, I don't know if you've seen this or not, but today, this very day, Substack announced comment rules for Substack. So you can make your own rules and you can state them, you know, like we welcome contact, you know, or uh you can do it in a style, whatever style, whatever rules you want to have about your comments. You know, we don't want any comments about sex relationships, uh, or or religion, politics, whatever. You can do all that. And then Substack can monitor your comments for you and eliminate the ones that don't follow your rules. And I read that today and I thought, oh I think I'm just not big enough to care about that right now, you know. I mean, I suppose if I was getting, you know, a thousand comments a day and I could not keep up with them, you know. I I honestly have never gotten a comment that I felt that I needed to suppress from anyone. So I'm lucky in that way. But uh I just thought, wow. This tool will not only take that comment away, but you end up never having to see it yourself. I mean, I'm I'm assuming I've got I've not gotten into it, uh, but I'm assuming there's a way that you can go and look at all of them. I mean, that'd be the first thing I did, right? It'd be show me all the stuff you rejected. Let me see what that looks like. Um but yeah, the and more thinking that is being taken out of our hands so that we don't have to worry our pretty little heads about it.

SPEAKER_00 52:31

I'm friends with a Pakistani writer who's emigrated to Canada, and uh he was quite a social media personality which helped him get a book signing deal because he had a terrific social media presence, and he got an agent, he got an advance, he published a book, springboarding off of a big community that he had engendered online, surrounding his opinions about being Muslim and being secular. It was part of the secular humanist movement that erupted after 9-11. Sam Harris was the white guy approach to that, and you had a lot of Muslim people who had similar ideas that Muslim identity is cool, but some of the ideology might have to go. So that was a sensibility, a network community, and we had a discussion about exactly this because he didn't just get insults, he literally got death threats on a regular basis for his posts, and some of them went into very poetic, exquisite detail as to how they planned on killing him. Now, Ali left every comment there, he he took off all the filtering, for example, on YouTube. He had just all comments, no filters, and not only did he tolerate these comments to the point of death threats, but he embraced them in dialogue. And what he told me resonates to this day, which is it's a window into that world, it's an opportunity for communication. And if you are so thin-skinned that somebody online will anonymously pan you or purge you or even make death threats against you, then why are you a communicator in the first place? And I've adopted that to a greater or lesser extent. I'm on TikTok, Instagram, YouTube, Substack too, with my almost daily video rants. And I talk about everything from art to culture, but I also talk about politics. And my political point of view is nuanced based upon the topic that I'm ranting about, and I manage to trigger just about everybody. So I'll come out one day and I'll say something that's actually favorable to some of the policies of this current administration. I say what I believe, and I think that that was the right move to make. And then they pile on the left, the progressive left in particular, and I get all the insults you can imagine. Five minutes later, I'll post another video panning the administration, and then the MAGA minions will leap on with equal gusto. So I am unpopular by popular demand, and that's okay because I have opinions based on what I think through and believe, and I'm not associated with any particular tribe. But long story longer, here, I think it's great to throw stuff out there, and I think you would benefit, everyone would benefit with a transparent expression of ideas because it's self-monitoring, it's got its own checking mechanism. We've come to rely on governments, institutions to censor content to protect us from what people think and believe and do. And then it becomes a question of who's doing the filtering and why. We're entrusting platforms, we're gonna entrust Substack to decide my level of tolerance for criticism. I need Substack to create a safe space for me so I can bloviate about whatever it is I want to talk about. I'm like, get out of here with that. That's a symptom of the end shittification of all these social media platforms. And we've been talking about Substack for a while. I think Substack sucks. I think the algorithm is lame, and I think it's just a crude version of a lot of its predecessors with this thin veil of pretension, like, oh, we're writers and we're sharing on Substack. And I know that might not be a popular opinion, but I've been on Substack a while, and I think they need to grow up a little bit.

SPEAKER_02 57:10

I don't know enough to say one way or the other about what it is that you just said. Uh, I got on Substack because I wanted a place that was free for me to send out a newsletter, and it does that in spades. Um but you know, I I hear what you're saying. That the thing that I find frustrating in work that I've done on Substack is that I I am quickly getting rid of as many of these as I possibly can that get fed to me about, you know, I gained 9,000 users in six months.

SPEAKER_00 57:50

I I hate that shit. I do parodies of that. I occasionally post, I'm looking for my 456th follower. And if you love hang gliding and bullshit, then leave me your latest story. I I make fun of these people. My whole feed is is fed up with other Substackers who are networking and making connections, and it's so transparently opportunistic, and I feel so manipulated every day on that and shitified platform. Well, we're on Substack, we're talking about it, but I think it's got a long way to go to de-shittify itself.

SPEAKER_02 58:38

Yeah, I wouldn't disagree. I wouldn't disagree. What I um am frustrated by is uh a concern because when I found it, it certainly fed a need that I had. And it's simple, you know. I mean, that I I don't have any interest as a writer. I don't want to spend my days chasing down technology and how to do a blog and how to get that seen by people. And you know, there's a lot of things that I just don't want to spend my time on. So it makes some of that maybe easier. I don't know, for right now it does. Um but my concern is that all of these things that, you know, and I paid attention in the beginning because I thought I needed to. You know, here I am now, you know, what when I made that shift, I mean, there was a point where um I was no longer posting updates about my health, except that I'm now writing essays about what it's like to live inside of what I've survived. Um, and occasionally, I mean there'll be an update coming in a couple of weeks when I get the results of this last barrage of tests and I know what's going on. Um, but more to the point is um that I'm looking for the writers. I want to read good writing. I don't want to hear about how, you know, because the way you get all these people, the way you make all this money is you create products, you create training courses, you create, you know, whatever, you're doing all this other stuff. And it's like, no, thank you. I came on here to to write. Um, and so I'm backing away from that. I mean, I think the one thing I can say maybe with just a bit of faith, is that Substack kind of lets you be you. You know, if you don't want to use the um the the new tool that they put out that can create a judge and jury for your comments, you don't have to, you know, you don't have to, or you can. Um, and I I admire them for figuring out that that they have the entire spectrum of people posting and that there'll be people want to do that. But um yeah, I I I just want to be in good writing company. That's what I want.

SPEAKER_00 1:01:01

I agree in principle, and to a certain extent in practice. So I come across as very extremist and polarizing, and part of that is my nature. It's zero or one. Something is awesome or it sucks. That that's how I am. Uh, so that all said, Substack does have its redeeming features, and I'm on it a lot. I post almost everything I do in one form or another on Substack. I repost my videos from TikTok as notes on Substack, and I'll even create an article on Substack if I think the topic is topical and I think enough people might be interested. And if I want to archive it, I want to stake the claim. And I do all sorts of stuff as you've seen. I'm the Mookie multiverse because A, I couldn't think of a better name. B, it fits my science fiction obsession with that subject. And C, I don't know anyone else on the platform, and I've looked who does daily video rants, writes plays, essays, political op-eds, uh, memoirs, short stories, poetry, five podcast shows. I'm just spewing. And it enables me to spew. And it lets me spew. And I think its algorithm does suck. I'm mostly hidden. And it's to a certain extent because I will not play ball like that. I will not do the obligatory post asking for great Substackers under 500 subscribers talking about petunias, tuna fish, and quantum mechanics. I'm just not gonna play that game, and I'll pay for it in terms of not being seen. So is Substack awful? Well, it's functional, it does have a mailing list, so I get to email people, and it does have a paid model. So here's the other thing about Substack that I have learned. I used to just throw everything out there like a tsunami for free. And I wasn't building any following, and people weren't really seeing all this flow of content. And then I realized, and I did a little bit of research, that you need to firewall a lot of your content. You need to take 20, 30, 40% of all your content and put it behind a paywall. And if you do that, then the algorithm, which at the end of the day wants to make money off of people paying you money to write, will favor that paid content over the free shit you're throwing out. And it makes sense from a business model, right? How's Substack going to sustain itself? There's no inline advertising, it's taking a percentage of subscriptions. And how do you build subscriptions? Well, you need to share content which only subscribers can see. In addition to stealing all your information, they need to make money off the money you're making. So if all your content is just for free, they're gonna deprioritize it, it's gonna be invisible. And if you want people to actually see it, ironically enough, you need to make it so that they can't read it. And that, ladies and gentlemen, is social media in 2026. Whether it's Substack, ostensibly for writers and creators, or whether it's TikTok, I'll get I'll do a TikTok thing which will go viral. You know, several thousand people will see it. I'll get hundreds of comments and likes, and then I'll get the little blip for my next video, which only had 150 views, and say, have thousands of people see this video for 20 bucks, and I'm a tap away from this video being viral, just like my last video was organically, because they want my money, honey. Does that say anything about the quality of my content? Zero. I've been posting the same videos on all these platforms, and the metrics are all over the place, depending on how the platforms think they could get money out of me.

SPEAKER_02 1:05:22

That stuff just all makes my head explode. I literally can't, I can't think about it. I just can't think about it. I just write.

SPEAKER_00 1:05:43

Exactly. They're fighting each other. Some people are good at this, some people can do both. There's some great writers who are great business people. Old school James Elroy, he's one of my favorite writers. LA Confidential, American Tabloid. He refers to himself Narcissus. Narcissistically, as the greatest fiction crime writer, that he's the American Tolstoy. And I think he's right. He's he's a genius, but he's also an arrogant fuck. And he's been awesome at going out there and self-promoting. He's all about the business. He's seven feet, literally almost seven feet tall. And he goes to every book signing. He does the book tours. And this is kind of pre-digital. He's out there selling.

SPEAKER_02 1:06:35

So that part of it, I look forward to. The human interaction. I look for oh my god, I look so forward to being able to do a book signing. I'd love to be talking to book clubs. I'm hoping that that my memoir is book club worthy. Um and uh and whatever else is going to be involved. Uh, but gaming the system on Substack, no boy, no, that doesn't work for me. I mean, the reason I'm even using Substack is as I mentioned earlier, it started out as just a health update. And and I went to Substack because I looked at other platforms that are actually specifically designed for people who have medical crisis going on. Um, but they're all 501c corporations that send out messages or otherwise append what you send to people with messages like show Mary how much you care by donating to help keep this platform alive. And I was like, no, no, no, no. I don't want to use my mail list. I don't want a 501c, no matter how worthy their cause is, to use my mail list for promoting their cause. You know, I just wanted to reach people. And um and and I needed an easy way to do that. And I actually even contacted one of those groups and said, can I just pay you whatever would be what you would expect that you would make from the donations that would come with mine? Can I pay you that? Can I pay you twice that so that you can disconnect that part from me and and not bug my people? I mean, I'll I'll I'll sponsor somebody else, you know, whatever you need. And they could not do that because that was not their business model. They were 501c set around this particular way of doing things, and they couldn't change it. So honestly, there are times when quite I feel guilty about the fact that I never do charge and I'm not going to charge. Love Heals is the name of the Substack behind.

SPEAKER_00 1:08:44

Well, but link in the description below.

SPEAKER_02 1:08:46

Yeah, link will be in this description. Um, and it is free, and it will always be free because the information that I'm sharing with people, they should not have to pay for. And I am in a fortunate position where this is not my career, this is my calling. And I'm retired. I don't need to try and scrape out, you know, five-dollar bills from people across the spectrum in order to pay my rent. Um, and so it's free, and it's gonna stay that way. And I feel the same way about um the myeloma fighters uh Substack that I'm doing because the people who are in the position that need this information are it's just it's not. I mean, I get that they could go into a bookstore and buy a book about what we're talking about and they would pay for that, but I I just I don't want to deal with it. I don't want to deal with it. And honestly, it frustrates me when there are some major players on Substack in particular that have those paywalled pieces, and uh it's frustrating because I have a sense, maybe I'm wrong, but I have a sense about what their net worth is, and they don't need the money. And why aren't they just giving this away? You know, and then there's the part where people say, Oh, if you give it away, it doesn't have value. I don't know. I don't know if that's true. I just know that my position on this is is that that my writing for this now, I don't know what they're gonna charge for the book, and I don't have any problem charging for a book. That's the way it's always been. But this business of everybody and their brother wants five bucks for you to read, you know, what they're putting out. I don't think so. It doesn't work for me.

SPEAKER_00 1:10:49

Well, you know, you pay to play. Uh I don't think there's anything wrong in principle with Substack's core business model, which is you're a writer and you need to eat, and it's hard to monetize. So I'm not shitting on that. I am just frustrated with how it plays out, especially when there's so much noise, getting attention is so difficult. Gaming the system, as we've been describing, is really the only mechanism to be noticed, unless you're coming in with an established reputation, and then you're using Substack to further enhance it and express it. Like Barry Weiss of the Free Press, who's now turning CBS News upside down, she did very well on Substack, and there's a lot of journalists who left legacy journalism to come to Substack, and they're absolutely rocking it. So they're doing, in a sense, what I'm doing, which is a podcast almost every day. They're on video, they're writing, and they've built up a community and a community of paying subscribers, and they're able to make a legit, sometimes lavish living off of content. Bravo. I think that that's great. That's Substack, frankly, at its best. If you want their content, pay five bucks a month. It's not gonna kill you. It's like just have one less cappuccino at Starbucks. Go for it. I think it's great. My griping is about being the lower tier of this ecosystem being crowded out by these boymoths, these celebrities, and the platform itself being inshitified to the point where I either need the jockey keywords and play these stupid games, or some would say, Mookie, make better content, make content people want to see. But it's a cat chasing its own tail on all these platforms. In order to be seen, I need to be good. I could be good, but I can't be seen. I could be good and not seen. And where do we go from here unless I want to pay? And that's just uh a frustrating place to be, but it ain't stopping me. I'm uh I'm just cranking it out with enthusiasm and go for it. I could certainly use the money, but that's not the priority anyway. And I write for me. And if it reaches a tipping point on Substack or elsewhere, then bravo, bring it. But if it doesn't, I'm not gonna let that bother me, nor let the AI porn slop bother me, nor people making, if not death threats, then insults on a daily basis, it's just a matter of wading through all that and diving into the broader human circus in a way befitting. Are you ready? Wait for it, drum roll, an artist, a writer. If you're not getting punched in the face, and if every day is in an arduous swim against the stream of human banality and mediocrity, especially our own, then you're not doing your job. And I think it's a great sensibility to embrace. Otherwise, go out there and sell real estate or crypto. Uh, there are a lot of things that are way more lucrative that'll bring in more money for your time. And I think it's awesome. It's really a fun time to be alive and experiment and play with. And we could even use some of the tools that are that are fighting against us in ways to your point making earlier that could be productive, like for research. I use the bots for my research and my geekery, and it really is fun and helpful.

SPEAKER_02 1:14:59

I was researching something a couple of days ago, and it was really important that I get the right answer. And of course, it always has that little disclaimer at the bottom that they might be wrong. So I just threw back the question: are you a hundred percent sure about your answer? And what I got back seriously made me laugh right out loud. Well, to be a hundred percent sure, I need to really look into this further. Stand by well, I check my data and uh it went off and did something and came back and said, Nope, nope, I stand by what I said, which is great. But I I thought it was clever that it actually admitted to the fact that in it, Swift kicked the answer. And oh, you want a for sure serious answer? I'll have to work a little harder to get that.

SPEAKER_00 1:15:46

Well, it makes sense. They're designed that way. It takes an awful lot of computing power to answer stuff, and you've got millions of users, and the data centers are taking over rural America for a reason. It's it's expensive, it takes a lot of energy. So the first pass you make is stuff already pre-trained in the system. And then if you iterate and you want greater depth, or you want to insist on double checking for accuracy, then it actually goes out into the internet and pulls new information. And based on that new pull, it aggregates it with its neural network to calibrate its response and fine-tune it. It's very iterative, so it goes through all these steps. And uh, I jockey with uh with the bots every day, where their answers are not satisfying. I know that they're inaccurate or incomplete, and then you need to keep asking and asking and asking, and the answers get more and more polished with each iteration. That's the dance that we're doing with all of these bots, and it's probably a dance that'll continue because that's how the architecture works.

SPEAKER_02 1:17:03

I suppose they're learning something from our iterations too.

SPEAKER_00 1:17:06

They're learning everything, they're taking in all my my I I've just settled in Chat GPT for most of my stuff because I was an early adopter, and I'm and I'm kind of boring that way. I experiment with the other ones like Gemini and Claude, but my go-to still is what I call chatty, bro. It calls me Mookie, it it you it uses slang. It literally, my bot will respond to me, Mookie, you're being full of shit here. It it knows how I speak, and it's tweaked itself to use vulgar language, uh, be brash, and often insults me back, and I will insult it. So it has shaped itself to my sensibility in a way where sometimes I have it on audio, so it speaks to me, and I had to change it from the voice of this enticing English lady to an African American gentleman because I was making my girlfriend jealous because she thought I was flirting with God. So now I've got Chatty Bro, the African American gentleman who is uh who is speaking with me in mooky slang, and uh and it'll it'll insult me and it'll throw down in all these ways because to your point, it's melding its mind to mine. Why? Because OpenAI wants me to use it and not the competition, they want me to use it more and not less, and I'm paying 20 bucks a month now, and it and they're gonna keep adding features, so I'm gonna pay 40 and 50 and eventually infuse it with advertising. So the results I'm gonna get are based on who's paying the most for that query, just like Google. It's inevitably heading in that direction.

SPEAKER_02 1:18:56

Have you ever had an argument? Oh, yeah, yeah.

SPEAKER_00 1:19:00

I was trying to analyze predictions for how the Iran war is gonna shake out yesterday, and it kept telling me that my prediction had no certainty for success. And I go, I'm yelling at Chatty Bro, that's define prediction, define what it means by a prediction, Chatty Bro. And it's trying to be politically correct because they have their own checking mechanisms and they don't want to come across as polarizing. So that's another problem with these things. That's are you getting the objective truth? What is objective truth? It's always being filtered, selected, prioritized. And this goes back to being an artist and having an opinion and expressing your point of view, not just sharing scenes or building drama, but you have a point of view. And to go back to your writing, I sense your point of view is someone who is frustrated by our health system to a certain extent. I see your point of view as someone who's hopeful and embracing opportunity that the science is offered. I see you as a fighter and a go-getter, someone who's resent relentless with a lot of resolve, but also feels maudlin sometimes about your circumstance and uh and really wants to work through it in a way that's very expressive and cathartic. Is that a fair way of capturing the parts of your memoir that I heard you read and what you're trying to accomplish with it?

SPEAKER_02 1:20:44

Absolutely. Absolutely. That does capture it. It really does capture it. You find yourself in a whole different world when you end up with cancer. It's a whole different world, and it's one that you have very little control over, and it's one where you have to exercise the muscle of controlling what you can and accepting what you can't, and understanding what accept means and where you draw those lines. It's a lot about boundaries, and it's about quality of life. It's about quality of life. And and I mean, one of the one of the things that drives me nuts, absolutely nuts, is when uh a healthcare provider's office, typically the person sitting at the front desk will say, Oh, well, we can't do that because your insurance won't cover it. Okay, so a couple things are wrong with that. One, the insurance company is is built to say no, always, and that doesn't always mean it's no. So how about if we try and see what if we can get a different answer? But the second thing is, and I've started asking this question, well, how much would it cost if I just pay for it myself? And you would think that I've got three heads when I say something like that, you know, that nobody and well, this is a $75 test. Well, that's worth it to me to not even deal with the BS of trying to get it through insurance. Um, but but it is here's where I'm going with that. It is someone else making a decision about what's right for me based on their values, not mine. And that's you know, that that assuming sameness of this is what I would want, or this is what the institution says they've defined, it goes back to what we were talking about earlier. Who's who's deciding what is okay and not okay? And yeah, that is probably where some of my biggest frustrations come in. Because I, you know, I I talk about this in the book as well, that you know, I had concierge medic medicine, I had a concierge doctor, that's why I had a cell phone number. And and I did so because I was running a business, I was very, very busy, and I definitely didn't have time to mess around with the healthcare system that that said to me one time when I had a very serious um situation that had me doubled over in pain for three weeks and uh trying to get in for a test or an appointment or something, and said, Well, I understand that it's really painful, but you're not gonna die from this, and that's okay. You know, we'll we'll get you in when we can. And it was not about how long I was gonna be suffering, it was about how long I was not gonna be able to do my job because I was in that place. I needed to get well right now, and getting that test and getting that procedure done was gonna take care of it. So let's get it over with. And so that is why I went to concierge medicine. It was a business decision. When I got cancer, there's no such thing as concierge medicine and cancer. You're everybody's on the same playing field. You go into a major medical center, which is where you want to be if you've got any kind of out-of-the-ordinary cancer, you know, the ones I mean, breast cancer, lung cancer, skin cancers, a lot of those, you know, are becoming, you know, yep, that this is how we do some of the ones that are not as dealt with thus far, um, they're still trying to figure things out. You want to be at the learning institutions, you know, you need to be in it. And when you go there, you are you are not in Kansas anymore. You are in a different place. And there's no no, you can't pay a couple hundred dollars extra to get a better service. No, everybody's same. And it doesn't mean it's even necessarily prioritized according to need. You're just you're in there, and it it's it's the positive and the negative of where you are, right? Because it's a perfect place to be so that you're getting the latest and greatest information coming along. It's a reason why when you have any kind of rare critical illness that you need an expert, somebody who just looks at this all the time, not somebody who on the side dealing with everything else. You know, you want the person who's focused on this all the time. But by going there, you better be prepared to advocate and figure out how to make yourself stand out. God, there's so many parallels, Mookie, to everything we've been talking about today. One thing to try and get yourself seen on Substack, another thing to get yourself seen in the medical world.

SPEAKER_00 1:25:49

Great analog. And I sense the central theme here, which is you're living your life, and then cancer cuts in there, it takes away your personal power. All of a sudden, cancer is running your life, calling your shots, you are disempowered. And to me, what your memoir does is takes that power back. It takes it by you being the hero, you narrating it, you learning about the science, you learning about the clinical mechanisms for treatment, you learning about the healthcare system, you fighting back, you putting yourself as the hero against all odds, getting through it. And that's that's very inspirational. And it's it's really the heart of the hero story, which is you wake up, you have a goal, on your way to the goal, you're punched in the face over and over again, but you don't give up, and then hopefully you get better, stronger, smarter, faster, more nimble, and then you get through it. And is there a pot of gold at the end of the rainbow? Well, guess what? We're all gonna die. That's not the real goal. The real goal is holding fast, being courageous, getting through it. And if you're an artist and if you're a writer, then translating that into a compelling story that people want to read that can hopefully infuse them with similar inspiration and hope.

SPEAKER_02 1:27:33

Yep, that's it. That is it.

SPEAKER_00 1:27:37

And what's the name of do you have a working title for your memoir, or is it too soon to share?

SPEAKER_02 1:27:45

Um, I do have a working title, but you know how those things can go. Who knows how that'll end up?

SPEAKER_00 1:27:49

Well, that's the definition of working title.

SPEAKER_02 1:27:52

Exactly. Inhale, exhale, survive.

SPEAKER_00 1:27:58

That's excellent. Although you've changed the nomenclature, at least as far as you have been talking about being a survivor versus being another term that you wanted to change that into. Do you want to talk a little bit about that? Because I thought that was an excellent piece that you wrote.

SPEAKER_02 1:28:20

Wow, thank you, Mookie. Survivor versus transcender. I felt branded when I arrived. The first time that I heard someone refer to me as, oh, she's one of the survivors. I was just bristling at that. My objection to that word is that going back decades, uh, that survivors were people who made it through the period. Stop. That was the end. To transcend something is to get through it, make meaning of it, and grow beyond that and be bigger than what you went through. And so transcender was an important word to me. Um and I came to the conclusion that when it comes to things like cancer, it's an argument not worth having. I'll take surviving, and I know I I mean I can't it it's one of those words that you know I can't say that I transcended blood cancer. You know, that that just doesn't make any sense at all. But I am surviving it. I am still alive. You know, 15 years or so ago, my chance of being alive right this very minute were something like 10%. And and now the number of people that are like myself with this number of years, I mean, I'm I'm just almost well, two years and nine months, but who's counting, uh, since I had my stem cell transplant. And um and a lot, you know, I mean, I was survivor, fine, fine, I get it, when it comes to medicine, I'm a survivor. But the other aspect of what I write about when it comes to getting through trauma that shaped neural networks as a child and could have had me in a completely different place, I transcended that. I went way beyond that. So much so that uh, as I've said, a lot of people, um most of the people in my life don't even know about that part of my life. I'll be very surprised if if they read the book.

SPEAKER_00 1:30:44

Um I love the parallels between your early traumas and then your adult traumas going through this diagnosis and treatment and recovery, and uh it's compelling, and they both feed off of each other in ways as you've described, in a sense, you've got inhale, exhale, transcend, which sounds aspirational. I can personally relate to this survivor motif, if you will. Uh, I had a roommate, Tracy, years and years ago, and she was a survivor of abuse, she had a very traumatic childhood. I had a very traumatic childhood too, and she once introduced me as look, this is my roommate and good friend Mookie. He's a survivor, and it and I know how you feel when you hear that. Like, he's a survivor, it's immediately evocative of pity and and helplessness, like you got punched in the face by life or some force, and you made it. You you you did it, and you kind of want to give that person a cookie. You've you've survived. And what bothers me the most about it, and and maybe that's what you're getting at too, with your allergy to that term, is that it's disempowering to a certain extent to be a survivor. It's like the lowest common denominator of existence is just to survive, right? And and it doesn't necessarily give you volition, you just made it, and and it's icky that way, right? It's like you're a survivor to be pitied. You you barely made it. Good for you. And when you change that term into a transcender, you're all of a sudden going from that helpless person to Zarathustra coming down from the mountain, right? You've transcended, you've taken in all that anguish, you fought through it, and you're more than you were before. There's something about survivor which which diminishes you. Like this is my roommate and good friend Muki, and he's a survivor. I feel like waving the little the little flag, right? So I'm I'm relating to some of your angst and consternation about the term, but I also understand that it's part of the nomenclature, and it's synonymous with with getting through cancer. You've literally, without any poetic embellishment, survived this devastating disease, and you continue to survive it. Yeah. So I think I get it. Am I off base with this?

SPEAKER_02 1:33:57

Um, no, it's it is the limiting. And I was thinking, reflecting on this as you were talking, it is the limitation of the word survivor that I object to because it has a stopping point as opposed to a springboard for growing. Something that I have said for decades about trauma in childhood. The people who have traumatic childhoods have only three possibilities in life. The first group doesn't survive very long. They die. Sometimes they're literally killed by their aggressors or otherwise victims of the trauma that they're in and they don't make it, or they die because they themselves get into really risky behaviors, um, alcohol, drug abuse, driving crazy fast, you know, jumping off of things, whatever. They die. They die. They don't make it, they're not with us past certainly not past their 20s or 30s. The second group of people survive and get some help along the way and find maybe some tools that are helpful. But in general, they become institutionalized in some form or another. And and this could be they end up in jail, they end up a part of the whole medical system, particularly the psychological medical system, that keeps them, you know, kind of controlled with medications and and that sort of thing. But one way or another, they are confined and institutionalized in some form or another. And then the third group are the group that transcend what happens and they deal with it, they find ways to come to terms with what happened. It is a lifelong thing, they have to have lifelong skills that get them through that, but they go on to live the lives that they would have had had they not been through what they were, what they went through as a kid. And um, and I think that is why surviving to me is not enough. It's just not enough. It's it's stopping too soon, stopping short of what you can possibly have. Um, and I'm still trying to reckon with what that means in conjunction with cancer. And um I I had somebody tell me fairly early on in my diagnosis that oh, you're gonna do just fine, Mary, you're gonna get through this, you're gonna get all better, they're gonna make you better, and you know, you'll figure out managing this disease, and then you'll meet people that'll never even know that you ever had cancer. Well, in the end, that concerned me a little bit because having had cancer is not something that I want to go around talking about, you know, like, oh, I had child abuse, and now I'm gonna talk all about that. I didn't do that throughout my entire life, and I'm not gonna do that about cancer in that way. But being available, I mean, what has ended up happening with me couldn't be further away from there's nobody's ever gonna meet me that is not going to know that I have been dealing with this blood cancer. And and here's here's a little tidbit that is brand new that you might have read. But this disease has been called incurable forever. Nobody knew how to fix it. They're now starting to think maybe they have figured out how to fix it because there's people that keep living longer and longer and longer. And so I, at two years and nine months with no evidence of disease and no maintenance treatment, the last drug that I had was the drug that I took for the um stem cell transplant. That five years is the definition. When you have no evidence of disease as measured by two very stringent tests for five years, you're cured. That's what they're thinking is going to be the cure. And um and that is an interesting question about what that really means when people suddenly change their mind about something that they think maybe it is cured. And then my trauma background kicks in and says, I don't trust that. I I think I still want to keep looking, I want to keep checking, I want to be sure I'll deal with my scanxity, but I want those scans.

SPEAKER_00 1:38:44

So in the 90s, especially the early 90s, HIV was still killing lots and lots of people. So the early medicines were out, they were crude, really bad side effects. People were still dying. It reached a tipping point around the mid-90s where the drugs got better and better, and it went from kind of sort of trying to mitigate the impact of the disease, extending life by a few months, maybe a year, to indefinite the point you're making, that the drugs don't cure the disease or cure the person. They still walk and talk and have the virus lurking in their lymph nodes, but uh, but it's undetectable. It's reached the point where people who have HIV taking the medicines, you give them a blood test, they come up negative for the virus, and it's reached the point where you live indefinitely, to your point again about cancer. So, where do you draw the cutoff? How do you redefine what the disease is from incurable, terminal, chronic, progressive to living with it and living beyond it, to your point, transcending? So I knew a guy, he's a bartender, Larry. He's built like Schwarzenegger, a huge guy, and he was diagnosed with HIV fairly early on, and it's the early 90s, and he resigns himself to dying. He figures he's got six months, max a year. If he's super lucky, he's got 18 months, and he wrapped his head and his heart around this fact that he had a death sentence, and he made preparations for his imminent demise. He started selling stuff, he said goodbye to family and friends, and he was pretty much ready to go because that's the only road that he had. All of a sudden, the new drugs get released, he feels better, he's rejuvenated, and then it rapidly reaches the point where the six months, a year, 18 months goes into question mark. You have indefinite time. And then Larry freaked out, he didn't know what to do with himself. He had this state change from going through the mourning process of realizing that his death was imminent to this question mark, ambiguous state of in between life and death, which ultimately led him to the state of, hey, I'm like everyone else. I don't know when I'm gonna die. And that is very disruptive. And I wrote a piece called the Lazarus Syndrome that that he got another lot on life, he came back from the dead, and then now what? So he told me he went through a period of real depression and uncertainty. It's like, what do I do now? How do I how do I face up to it? Now I gotta get a job again. Now I'm accountable again. Now I have to deal with all of life's shittiness all over again when only a little while ago I was set to check out. Isn't that interesting? And I think there are some parallels with your story too, and how you just described this shifting state of expectation and being, and how this survivor to transcender is so apt because uh because that's literally what you've been living through.

SPEAKER_02 1:42:39

Yep, exactly.

SPEAKER_00 1:42:45

I want to sincerely thank you, Mary Rose, for your time and your insights and your heart and your writing, your posting, and uh keep fighting the good fight in each and every way. And from my vantage point, especially in terms of the writing, don't let the AI slop bots get you down, don't let anyone commenting on your stuff discourage you in any way, and trust your intuition, which I think is spot on for telling a story the way you want to tell it, and go for it. And success will come intrinsically just in the doing, and externally, in terms of people like me being one of your fans, and to your point, you are organically growing even on Substack, Slop Stack, it's still working for you, right? You're you're not really playing the game, you're not jocking the algorithm, you're just creating great content. And to the point you were making earlier, you know, not to say anything further disparaging about Substack in particular or social media in general, I began that part of the conversation by saying that there's great stuff here, this uncanny and amazing ability to connect with people. I've connected with so many writers on Substack after I spent my rant going for 20 minutes. Uh, I've had 50, 50 plus science fiction and fantasy writers on my other podcast show, of which a majority of them came from Substack. I'm reaching out to them. I see them posting, they're sharing content, and I'm inviting them on board uh through Facebook, relationships with other writers. And I've gone to sell books in person at the Congresses and the conferences, LA Festival of Books. And it's all engendered through the social medias. So it's not all bad. It it offers great opportunities for connecting with people in a way that's actually natural and friendly and isn't quid pro quo manipulative. Share the good stuff, and that rising tide lifts up everybody, hopefully, in a way that uh that we can all celebrate each other and ourselves.

SPEAKER_02 1:45:12

Well, I celebrate you. I uh I've thoroughly enjoyed your rants. Uh they were an acquired taste, and once I got it, it was like, oh, I love this, I love this. And um I appreciate the generosity of your time and having me on the show today. And thank you so much.

SPEAKER_00 1:45:34

Thank you so much. So, like, comment, share, everybody. That's my obligatory algorithm jocking. Uh, the podcasts are available on audio, Spotify, Apple Podcasts, wherever your podcasts are streamed. And the YouTube video, if you're not already seeing us on YouTube, hi there. Uh, go over to my channel. I'll have the links below too to um see Mary Rose and uh see us exchange these ideas and and experience the good stuff of two people actually having a conversation and conversing rather than spewing memes and uh and sicking the AI slop bots on each other.

SPEAKER_01 1:46:16

All right, all right.

SPEAKER_00 1:46:17

Thanks, Mary Rose, for being on the fittingly titled Incverse Algorithm.