Empowered Sleep Apnea

Season 2: STORIES FROM THE FIELD Episode 5: THE ONE ABOUT CROWS

David E McCarty, MD FAASM & Ellen Stothard PhD Season 2 Episode 5

Empowered Sleep Apnea: THE PODCAST

Season 2: STORIES FROM THE FIELD

Episode 5: THE ONE ABOUT CROWS

©2023 www.EmpoweredSleepApnea.com

 14 December 2023

For a full-color PDF transcript of this episode (contains images!--YAY; no music! BOO!), click
HERE.

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Ever wonder why there are so many CROWS hanging around the Empowered Sleep Apnea landscape? So have we!

Turns out...we can learn a LOT from our CORVID friends when it comes to how we treat each other...join Dave and Ellen on a lovely meditation on what it means to collaborate, and why the language of EMPOWERMENT is something we ALL should share.

And...who knew??? Somehow, this project ties into music! Learn how the PULMONAUTS music project transformed the conversation into something larger and more beautiful than anyone could have imagined...

To see Dave's piece lampooning simplistic educational handouts, click HERE.

Our Website: https://www.empoweredsleepapnea.com
Official Blog: "Dave's Notes" : https://www.empoweredsleepapnea.com/daves-notes

To go to the BookBaby bookstore and view the BOOK, click HERE!

Empowered Sleep Apnea: THE PODCAST

Season 2: STORIES FROM THE FIELD

Episode 5: THE ONE ABOUT CROWS

©2023 www.EmpoweredSleepApnea.com

 13 December 2023

00:00 Change the Channel!

00:23 Disclaimer

Empowered Sleep Apnea is an educational podcast, which is a bit different than a medical advice show. Clinical decision-making in Sleep Medicine can be complex…and even EMPOWERED patients need a partner…so: play it smart and talk to your healthcare provider before making any changes to your medical treatment plan.

And now…on with the show.

00:53 Announcer:

Empowered Sleep Apnea: THE PODCAST

Season 2: STORIES FROM THE FIELD

Episode 5: THE ONE ABOUT CROWS

 

 6:05 Crows Teaching Crows

Spoken word essay written, performed and produced by David E McCarty MD, FAASM (but you can call me Dave)

 This is Dr. Dave McCarty, co-creator of the Empowered Sleep Apnea project. On today’s very special episode of Empowered Sleep Apnea: THE PODCAST, I’m leaving the Blue Balloon parked within the cavernous infrastructure of the Empowered Sleep Apnea bunker, and I’m going to take you on a more personal journey, with me.

 I’m going to take you urban-hiking, around my home…Boulder, Colorado. And I’m specifically going to take you to my favorite spot, behind the grocery store, where the crows go to hang out.

 See, Crows are cool.

 And if you’ve strolled around our website, picked through our Beautiful Blue Book, or listened to our awesome PODCAST, you’ll prolly notice a few crows hanging around. 

 I’m fascinated by them.

 First, crows are smart— really smart. If you enrage a crow, he will spend time teaching his friends to recognize you, so they’ll be enraged by you, too. Crows take whatever they want, wherever they find it, and they use it for their own needs. They’re the Engineers of the bird world. 

 But it’s the behavior of crows in a group that fascinates me the most. Crows in a group are a marvel, because as you watch, you realize one beautiful, predictable, and powerful fact: Crows are always Pro-Crow. 

 They hang out in groups that are so cohesive and thick it’s scary. We humans (being on the outside of this group) are so threatened by their thick-as-thieves state that we labelled the group as something monstrous—we call it a murder.

 If we imagine what it feels like to be part of that group, though…a big loud bustling economy of voices and personalities, curious and clever, but always cohesive, always helping each other, I’m picking up on a signal that is decidedly different from intentional violence. It’s a signal that feels more like love.

 ~ ~ ~ ~ ~

 I have fun thinking about the weird names there are for groups of things, or even coming up with some of my own:

 A congress of apes.

 An ennui of goats.

 A juggernaut of scorpions.

 If I could rename what a group of crows should be called, I think I’d call it a Collaboration, because that’s what they make me think of. When a crow gets hurt, another crow helps.

 Crows always vote for crows.

 ~ ~ ~ ~ ~

 As I think about our current healthcare landscape, I see much separation, not just of ideas, but of hearts. The two concepts go together. 

Silos. 

I’ve been thinking recently about the real meaning of the word collaboration, about what it feels like to truly be in a collaborative state.  I know that it’s something more than just 500 people all getting into the same building to broadcast their message, to show their slides of their truth, as seen from their silo.  

Real Collaboration means that something must change in ourselves, as well. Real Collaboration means that we are willing to receive, as well as broadcast. Real Collaboration means taking the humble step of removing our armor and admitting that we don’t have the whole story.  

We must admit in our hearts that we need each other, that all the silos have something to offer.

In Season 2 of this series, Episode 1: PROLOGUE sketched out a Dramatis Personae of some of the players (silos) in this elaborate play, and how these players (silos) relate to one another, how they can naturally come to despise one another, and start throwing verbal rocks at each other. The view from the Blue Balloon was all about how exercising the muscle known as empathy can help break down those barriers.

Now I confess, I spent most of my career in the fighting trenches, defending my silo, throwing rocks. I cared for thousands of souls who had been run over and left behind by a Profiteering practice only offering a One Size Fits All solution. I’ve cared for patients left behind by surgeons, CPAP-slingers, mandibular-advancement device factories, and pioneering Airway Centered Dentists. I’ve seen patients suffer needless harm, because an algorithmic label-based approach was used, rather than a patient-centered one.  I had a special rock collection for the Profiteers and the blind algorithm-followers (they start to fade into each other, after a while), and I developed quite a throwing arm. 

I realized recently that my rock-throwing was part of the problem. The Profiteering instinct is not necessarily evil. Any enterprise must be financially solvent and efficient to survive. Such is the nature of the world. If I spent all my time throwing rocks at the Darwinian successes currently on our business landscape, I’m gonna cancel out any opportunity to put a Healers’ spin on the delivery.

Throwing rocks induces pathologic deafness, remember? 

This does not mean standing by, silent, watching maltreatment occur. Far from it.  

It means finding another way.

Real collaboration is finding a language that unites all of us, and one of the biggest rifts to close is that between the Profiteers and the Healers. 

The problem as I see it: Profiteer-Engineers out there haven’t been able to hear the harm that’s being caused by the focus on efficiency and profitability. They don’t understand the demoralization patients feel, when they feel reduced to a label, when they have no agency or understanding for the process. They’ve been unable to learn from the experience of Healers, because we’ve been throwing rocks.

When patients feel demoralized and abandoned, when they feel duped by someone in a white coat with a One Size Fits All promise, they leave your silo, eliminating the opportunity to find out about their pain. 

It’s the Negative Space of care, and it’s nearly impossible to track.

And if we can’t track it…how the hell can we ever talk about it? 

~ ~ ~ ~ ~

There is a curriculum you can teach people, which helps do away with all of this. There is a curriculum that can impart a personal sense of agency and empowerment to the journey of Sleep Apnea, which frees both the provider and the patient from this scenario and allows Real Collaboration. I worked it out, and field-tested it on thousands of patients.

This is not braggadocio, it’s fact: the long-term intention-to-treat success rate with PAP therapy in my clinic over the six years that I was at Colorado Sleep Institute was >90%. The reason? My patients were empowered and engaged. No one started therapy until they were comfortable in the driver’s seat, grinning with a thumbs-up.

There are many overlapping bidirectional relationships in Sleep Medicine, making Sleep Apnea a complex terrain to master. It’s human nature to latch on to reductionist explanations, and then hold on for dear life.  Most providers have no idea how to present this complexity to their patients. 

My Healer’s heart taught me what my patients needed to know, to participate in Real Collaboration. My Healer’s heart helped me learn how to teach it to people, in language everybody could understand.

My Engineer’s unrest forced me to make tools that other people can use.

You know…Crows teaching crows.

 ~ ~ ~ ~ ~

That curriculum is all contained in our Beautiful Blue Book and is also available free by listening to the first 5-Episode season of our PODCAST. The main thrust is this: patients who are empowered will be more successful on the journey because they will help their providers find the answers.

Here’s the magic thing that providers should know: empowering your patients in this way is like having a full-time medical assistant who will relentlessly work on your behalf, for every patient, never asking you for breaks or overtime pay. 

~ ~ ~ ~ ~

The main tools of the Empowered Sleep Apnea method are two five-point mnemonics, these are constructs that are shared between provider and patient. They are conceptually easy to learn, and easy to teach, but they both require a deep dive into terminology and jargon that makes most providers a little nervous.

That’s why most people don’t do it. That’s why the approachability and friendly tone of the Empowered Sleep Apnea project is so crucial.

~ ~ ~ ~ ~

The Five Reasons to Treat discussion is a structured deconstruction of the rationale to treat Sleep Apnea. This discussion is nuanced, because it requires a careful deconstruction of the label “Sleep Apnea” into something more grounded that the patient can understand, and it is deliberately designed to strategically inject the patient’s narrative into the label. It’s designed to strategically give the patient a voice in the process. 

It’s designed to instill empowerment. 

By doing so, the Five Reasons discussion also strategically places a brake in the system, making the provider and the patient both consider the possibility that treatment may not be necessary at all!

In this way, the Five Reasons to Treat discussion can be likened to a pre-surgical Time Out, a ritual that is now commonplace in operating rooms everywhere, to avoid cutting off the wrong leg.

The ritual of the Time Out happens because the wrong leg has been cut off, a few too many times. That’s why surgeons do it.

The first of the Five Reasons—RISK—is the most misunderstood, and the hardest to teach, so most providers shortcut to the simplest possible version of this discussion, which is to announce that “Sleep Apnea raises the risk of early cardiovascular death, stroke and cancer” 

This is the kind of information that’s typically made available in well-intentioned reductionist “trifold handout” educational materials. 

If you want to see an example of some of my rock throwing, early in this journey, I invite you to take a look at a lampoon I made of an old cigarette ad. Somehow, oversimplifying this problem felt like it was taking many folks to some sort of destructive endpoint.  

Patients subjected to this strategy of “education” often feel shamed, coerced, even browbeaten, and commonly respond to these feelings by leaving, and never coming back. The provider, meanwhile, sighs about how ignorant and noncompliant the patients seem to be these days and moves on to the next 15-minute appointment, never understanding the true reason for the patient’s disappearance.

The Five Reasons to Treat discussion also requires a careful dissection of the many moving parts that are under the hood of every case of Sleep Apnea. It requires the provider and the patient to both examine those moving parts, so that a sensible treatment plan can be envisioned. This is a built-in strategy that helps protect our patients from Profiteers out there with poorly developed Healers’ instincts, advertising a One-Size-Fits-All solution. The many moving parts part of the discussion instills agency in our patients, giving them knowledge to self-advocate.

~ ~ ~ ~ ~

The Five Finger Approach is a rational deconstruction of a larger question: how does one investigate non-airway contributions to a given patient’s sleep-wake complaints? 

One of the problems with our label-obsessed system is that once you get plopped into the box of Sleep Apnea, it’s very difficult for providers to return to the problem-solving table, when the patient remains dissatisfied with their sleep. Patients with Sleep Apnea can suffer for years with also-ran diagnoses that nobody thought to look for, because everybody, including the patient, thought the problem-solving was done, once the CPAP was prescribed.

~ ~ ~ ~ ~

Both the Five Reasons to Treat and the Five Finger Approach were designed as tools of provider-patient collaboration—in other words, they’re meant to be taught to our patients. When properly deployed, these tools create an intellectual and emotional bond between provider and patient that’s very difficult to break. When properly taught, patients achieve a state of agency and empowerment which accelerates their progress towards success, because they become invested and curious agents for their own recovery. 

When properly taught, patients can teach these techniques to their friends, like crows teaching crows.

~ ~ ~ ~ ~

In the final wash, collaboration must come to something more than just a bunch of siloed thinkers coming together to put their thoughts onto projection screens and drink. In the final wash, I’m starting to think it’s a challenge to gaze inward as well as outward. Our task is not just to gather with a mission of broadcasting.

Our task is to open our hearts and listen, especially to those who are operating outside our silo, which is a hard concept to wrap one’s head around. Our task is also to remove the mask of infallibility we show our patients, and truly collaborate in that relationship as well, providing the patient with the knowledge that helps them participate in the process as a respected partner, not as a disempowered pawn.

We can learn something from our corvid friends. 

Crows are always Pro-Crow. 

Crows teach each other and take care of one another.  

Crows, having the gift of flight, are the ultimate symbol of empowerment and agency, because they have the capability of seeing the world from an elevated perspective.

As we, as providers, as we work on ways to improve the lives of our patients as they navigate the vast landscape known as Sleep Apnea, we would be wise to remember these attributes. We would be wise to emulate this type of collaboration.

Real Collaboration.

When we get there…dare I say it? 

That’ll be something to really crow about. 

(majestic theme song--NOW!)

~ ~ ~ ~ ~

17:33 Cue Majestic Theme Music

 Ellen: Welcome back to Empowered Sleep Apnea…

 Dave: ….the show where you learn about the complexity of Sleep Apnea using the power of stories from a patient-centered perspective…

 Ellen: …today we are not only here in the Bunker in Boulder, our Blue Balloon is parked here in Boulder and we’re discussing…um…some crows…that are in our neighborhood…

 Dave: …yeah…crows are kinda featured throughout the art and throughout the PODCAST, and I finally figured I should spill the beans as to why that was the case…so once again, I’m Dr. Dave McCarty, and I’m here with Dr. Ellen Stothard, and we’re back for the fifth episode in Season Two: STORIES FROM THE FIELD…this one is called THE ONE ABOUT CROWS…

 Ellen: THE ONE ABOUT CROWS…about a murder of crows, a collaboration  of crows…

 Dave: …indeed…

 Ellen: …whatever you wanna call it…

 Dave: …I’ve been thinking so much about that term…”collaboration”…as we come down to the management of complexity, it always comes down to…”it’s bigger than one person can really do…”

 Ellen: Mmmmm.

 Dave: That’s what “complex” means to me, operationally…

 Ellen: …well, and it’s “complex” vs “complicated”…which is something that we’ve talked about before…

 Dave: Right, right! This concept, if you haven’t heard in the other episodes…”complicated” is something like the inside of a 747…right?...the cockpit…like I couldn’t work it…but someone knows how…and they get a predictable result out of that machine…that’s a complicated environment…

 A complex environment is maybe where half the dials are missing…and you don’t know they’re there…so a more “complex” environment might be something more akin to a Brazilian Rainforest…you know?...You don’t know yet what you don’t know…

 Ellen: MmmHmmm…

 Dave: The process of problem-solving involves an element of discovery, right?

 Ellen: MmmHmmm…and it’s also something where you…I think the thing about complexity to me is where…really like…you have to learn more…to understand the whole picture…it’s not that it’s hard to find…it’s that you have to foster collaboration between other people who see different things, to connect all the dots…

 Dave: MmmHmm. MmmHmm.

 Ellen: …to be able to understand it…

 Dave: …and somehow talk about this same “beast”…(this BEAST we all call Sleep Apnea), which as we’ve kinda talked about before is this ENORMOUS leviathan that we all see from different perspectives…so…how do we talk about this beast in a way that allows us to speak the same language?

 Ellen: It’s really fascinating, because this is kind of a reminder..at the end of the essay…I’m skipping to the end, already…

 Dave: (laughs) 

Ellen: The end of the essay goes over the mnemonics that you’ve come up with…the Five Finger Approach and the Five Reasons to Treat…boils this big complex thing…and makes it feel really approachable…

Dave: …from a patient-centered perspective…again…one of the things we have to learn to do as providers…is we have to learn to preserve the patient’s narrative from perishing within this label we call Sleep Apnea… because, that’s what happens when patients leave your silo…is now they have this label, and suddenly…everyone has a solution…some of which can be kind of outlandish! But: how do we UNPACK that complexity?

Ellen: …So I was gonna ask you kind of a similar question…you talk about crows, then you talk about the Five Finger Approach and the Five Reasons to treat…how did you decide to write this crows essay? Where did you come to, you know, in this experience?


21:09 The Fascination With Crows

 Dave: You know…I’ve been following…kinda…the images in my head, as we’ve talked about since the first episode in this series, trying to figure out kinda what they mean. And honestly, this essay came out of a concept that “I am fascinated by these creatures!” And it was a meditation as to WHY. And I realized as I said in the spoken word essay…crows are always pro-crow! I see them helping each other! Like I saw one crow tryin’ to pick up a piece of ice…I don’t know why he wanted it…maybe he was thirsty…but he couldn’t get it…and he finally just flew away and went back up to his tree—he looked a little miffed! And then his buddy went down, picked up the same piece of ice, went up to the tree…and gave it to him!

 Ellen: Hmmm!

 Dave: I mean: isn’t that COOL?

 Ellen: That’s pretty cool.

 Dave: You know? And I just thought: MAN! Crows are always pro-crow…and you can’t really tell the boys from the girls…they all just kind of help each other…and I thought that as a way of talking about this complex phenomenon…wouldn’t it be cool if all these different silos of thought could actually functionally behave LIKE THAT?!

 Ellen: Mmmm.

 Dave: ….behave like THAT with each other…you know…you’ll see sprinkled throughout my doodles the phrase Crows Teaching Crows…because that concept: “We can all teach each other these concepts…including patients can teach their doctors, because now it’s accessible. 

 Ellen: …so how do you react to the fact…so when I hear “Crows Teaching Crows” or “Crows are Always Pro-Crow”…there’s a lot of other birds out there, right?

 Dave: Yeah!

 Ellen: Crows aren’t exactly friendly to other birds…

 Dave: No, no! It’s the fact that we humans should behave like that with other humans…

 Ellen:  Mmmm.

 Dave: It’s not so much that we need to exclude the other birds, like, or people who are different from us…I like the cohesion of the crows within their own thing. We as human beings need to take care of one another. And one of the ways we can do that is EMPOWER each other with a language that we all can share, you know?

 Ellen: Yeah.

 Dave: One that puts all of this decision-making back into the narrative of the patient.

 Ellen: I think one of the things that fascinates me most about this project, and given the time that it’s grown and matured, and I’ve talked about it with a lot of other people…talking with people outside of academia…or…outside of biological academia…so people who aren’t in biomedical ANYTHING…physics, or…engineering…or other things…and you try to explain to them: “We’re doing this…as a part of a NARRATIVE…we’re taking these ideas and turning them into a story so we can understand what’s going on.”  

 I had someone say to me the other day: “Why do you need a NARRATIVE? You have the facts.”

 Dave: Mmm Hm.

 Ellen: And I was really fascinated by that question, because I’ve never thought of them as mutually exclusive.

 Dave: Well, they’re not. And it’s actually a very good question…because…I published the Five Finger Approach 13 years ago. So those “facts” have been available. It’s not so much that this isn’t a useful tool…it’s that…it’s not been made clear how this tool can be used collaboratively, and what the fruits of that endeavor can be.

 So: the issue of how to get this stuff across…when you start to get your hands into the “Sense-Making of Complexity” literature…and this is something that people study! You know? There’s a guy named Dave Snowden…not THAT Snowden, the other Snowden…but he made his mark on the landscape of academia as a sense-maker of complexity.

 And one of the things that he has recognized is that when helping people make sense of complexity, there is a large utility for NARRATIVE…which means storytelling.

 …so the stories…and the stories we create around things…can help people make sense of how all of these disparate details can fit together…and it can also communicate something that’s very difficult to get across in a textbook….which is sort of the headspace of how it feels to really be there and explore it with the right attitude. Right?

 That’s impossible to get across in something scary like a textbook….you know? So: hence…we came up with the ISLAND, early on, and that set the adventurous tone for the rest of the project.

 Ellen: Yeah! It’s also kind of fascinating that somehow…like when you hear a song enough times, or a jingle…it just sticks in your head in a way that facts don’t always stick! And so…

 Dave: …it’s a different art form!

 Ellen: Yeah, exactly! And to me it seems like a lot of the work that you did…you took your academic brain…and kind of applied it –or your engineering brain!—and kind of applied it to these artistic means to be able to connect with other people and bring the points together in a way that wouldn’t have come out, had it been written in a list or a white paper.

 Dave: Yeah! The List or the White Paper—that  can possibly get across the complexity in a trackable way…meaning if you wanted to look it up and reference it, you can FIND IT again. But it’s not something that anyone will voluntarily WANT to read…it’s not something that actually brings that feeling of delight…which is really what we were trying to channel…for the delight of understanding!

 Ellen: Mmmm.

 Dave: …the actual enlightenment when you can see how all these parts fit together…and you can break the Many Moving Parts of Obstructive Sleep Apnea down…and you can break the Many Moving Parts of Central Sleep Apnea down…and start to come up with engineered solutions that might follow many different pathways…that’s when the lights come on!

 Ellen: Yeah! And for the patients, as well…to NOT feel intimidated by what the doctors are talking about…how do they know how to make this list…of their symptoms, or what’s important? They can just start with what feels important TO THEM, and tell their story, and the doctors can pick out what’s important.

 Dave: The Bay of Narrative! The Bay of Narrative is what’s important to the patient! That’s our way of preserving that narrative like it’s something precious…because it is!

 Ellen: Yeah.

 Dave: It’s the most precious part of this journey!

 Ellen: Yeah.

 Dave: That’s why that whole “Bay of Narrative” component of this is about understanding the jargon—so: 

“What’s a Hypopnea?” 

“What’s an Apnea?”

“Why is the Hypopnea definition so WEIRD?—You know? Why is it always slipping around?”

 So…once we break this apart and really examine it, then we realize why the discussion of RISK is so nuanced, it’s ‘cause the AHI metric is so misunderstood. You know? There are so many different ways to think about that metric. 

 Ellen: Yeah and then once we get through all that, we feel like we’re all on the same team…we’re all crows…you know…rooting for crows…working with crows together…and it does really change the way you experience the medical journey…

 Dave: Yeah.

 Ellen: …if you feel like you’re on the same team.

 Dave: …for sure. Absolutely, if we know that our colleagues in the airway world…Airway Centered Dentistry world are speaking about the Five Reasons to Treat and they’re helping the patient find their NARRATIVE…if we know that our colleagues in the standard Western Medical world are doing that…that they’re not just pushing a CPAP machine at every single person inappropriately…you know…that’s what we’re really looking for…it’s a way of putting some humanity back in this system that recognizes that the person in the driver’s seat should…and CAN…be the patient.

 

28:52 Know Your Knowledge

 Ellen: Yeah and I wonder…so something that makes me think as a researcher and as a scientist when I’m answering questions…people say, like: “Is this true?” Right?

 And that seems like a very binary YES or NO answer.

 Dave: Mmm Hm.

 Ellen: I can point to statistics or studies or other things that can say Yes, this is TRUE or No, this is NOT TRUE…but more likely, my answer is gonna be IT DEPENDS.

 Dave: Yes! Truth is often dependent on the environment in which you check for that truth!

 Ellen: …and…if you flip that on its head, actually, I think its really relevant to this conversation, because, when you have to answer those questions, I find myself instead of saying “It depends”—because people get frustrated by that—I find myself saying:

 This is the information I have to answer the question that I think you’re asking

 Dave: That’s it!

 Ellen: And…do you have another question? Is there other information that I can provide to you? So it’s almost like being able to intuit what someone else is looking for…

 Dave: Yes…understanding the “heartspace” of their question…

 Ellen: Yeah!

 Dave: …you know…is this something I can hang my hat on? In all situations? And the truth is, the correct answer should be “it depends.” Let’s take, for example, is Sleep Apnea… does Sleep Apnea cause strokes?

 Ellen: Oh, yeah. This was one of our first conversations.

 Dave: Is this…is this going to shorten my life? And so, what we know is that when the primarily obstructive AHI--as determined by the 4% desaturation criterion—is above 30, we have a very strong signal that that’s true. Right? That this is likely to shorten your life by either stroke, heart attack, heart failure, all-cause, cancer or accidents. You know? So that’s TRUE. 

 But…if your AHI is over 30, does that mean that you’re going to have a stroke?

 Well, let’s go back to the Many Moving Parts. So, what if your AHI is primarily informed by one of the easier criterion for hypopneas, and they’re mostly central in mechanism…because you happen to live at 8000 ft…and you’ve got Restless Leg Syndrome…and that makes you have these periodic arousals from sleep…and now you’ve got an unstable breathing pattern…now your AHI is 40…

 BUT…dot dot dot…

 Ellen: Mmm Hmm.

 Dave: Not the same! OK--This is why the AHI needs decoding. So I think it would be unfair to that person to say “You have severe Sleep Apnea!” What they have is a mostly central phenotype of sleep disordered breathing…and…there are Many Moving Parts with that…and…we don’t have much data to support the notion that central sleep apnea shortens lives in the same way…

 …’cause it’s just not the same type of stress…you know…inhaling against a closed airway…that’s also known as choking…you know?...that doesn’t feel good…and it elicits a different sort of stress response than the pause that follows the deep heavy recovery breathing of a central apnea recovery event. You know? It’s just different. 

 So: we can’t really use those labels anymore; it’s not fair to our patients. We need to unpack that complexithy in a more responsible way.  

 Ellen: Yeah, yep. And being on the same team and having a shared language that the team can work together to figure out what’s important to the patient, and what’s their prioriy…because they’re the one that’s gonna be using the treatment, right?

 Dave: Yeah.

 Ellen: …and they’re the one who needs to feel EMPOWERED to be able to make that decision and take that on for…for…for their lives!

 Dave: I…I feel that.

 Ellen: Yeah.

 Dave: I feel that. 

 

 32:24 PULMONAUTS: The Music Will Save Us All

 Dave: You know…the component of this that has been incredibly meaningful that’s very difficult to explain has been the connection to music.

 Ellen: Oh, yeah! Absolutely. I think, especially, for me, it’s the alternative ways that this connects to communication.

 Dave: …a fascinating bit of the journey was this PULMONAUTS music project, which was a band that came together of Airway-Adjacent and Breathing-Adjacent Professionals…and we managed to put together a show that lasted about an hour…and it was pretty darn good!...and we all live in different parts of the country, and we’re all amateurs, you know?…we’re ear players…so this was an improbable project…

 …and…the reason it was so…important…was that the process of playing together changed the nature of our relationships…so that we trusted one another with a greater…I’ll call it an empathic bond, you know?...

 …and as a result, we had much different conversations about our different perspectives, and I learned the language of how to talk about some of these ideas in a way that will make more sense…you know, so once again: establishing a different method of achieving that connectivity…it created a structure for that…which was, for most of us in the band, we all felt that it was transformational…

 Ellen: Yeah, it’s pretty hard to hate somebody…you know, even if you have an inclination to…if you have a prejudice against them…it’s pretty hard to hate them when you find that you have this thing you love in common, right?

 Dave: Yeah, yeah. And it feels so good, like the dopamine just sorta flows, when you’re playing together, and you’re sort of finding your harmonies, and it blends right…like there’s a very special thing that happens, and it’s difficult to explain to folks who haven’t sorta been…in music at all…for me it was always on the porch…I always used to get musicians to come over on my porch and we’d play together, and we’d kinda improvise our parts to find this…new voice…you know?...and the group would always be way better than any one of us by ourselves, you know?

 And that’s kinda what happened with the PULMONAUTS project…is that everybody brings their own voice…and…suddenly we’ve got something new…and isn’t that what collaboration is? You know?

 Ellen: Absolutely…you couldn’t…neither of us could have imagined what this project would look like, um, you know, if it was just us by ourselves…at our computers…

 Dave: And perhaps, now’s the right time to disclose this story…when we began this project, it started as a textbook…and it was a very very BAD textbook! And that’s when I had to call up Dr. Stothard, and I said: “Maybe there’s something about the conversation we need to explore.”

 So we began down the NARRATIVE pathway with Episode 1, and it wasn’t until Episode 3 that we realized in retrospect that the ISLAND was where this was all going. And that was when we pierced the membrane from, you know, a standard medical script, into something fantastic. You know, we went to, basically, THE ISLAND, and Robert taught us to start exploring. That was a very important moment for us.

 Ellen: Well, and the credit is also to you, because we went through that whole educational first season and episode, and wrote…you wrote the textbook…and put it out there…and then it started to turn into something else…so you didn’t just stay within your “crows group” …people in the Airway-Adjacent Area have started reaching out, and people in Sleep Medicine are reaching out, and your doing all the conversations outside of…obviously we’re trying to talk to patients and providers through this mechanism…but, going outside of that…and continuing to be vulnerable and say “this is what I think we should do—how does it work in your world?…how do you see this?”…and create those connections

 Dave: Yes.

 Ellen: …to try to identify the intersection of what you see as the map for Empowered Sleep Apnea, and what the language is that they’re speaking currently.

 Dave: Mmm Hm.

 Ellen: …and meet them where they are, I think is the biggest thing that has really pushed this to a successful place.

 Dave: Absolutely. It’s been what I’m calling the Blue Balloon Phase of this project…is really kind of trying to see these different dramas play out from a different perspective…rather than defending the way I’m doing in in my small space, understanding that this Leviathan is gigantic, and there are different lenses on it that we have yet to explore…

 …and some of these pioneers have done so, with an engineering mindset, in the field…and they are just now starting to understand and publish what they’re doing…and there’s a strong signal that they’re onto something really cool…you know, but the main question is how do we help patients understand how it all fits together, so they don’t get suckered into something that’s not real appropriate for them, just because of their LABEL. You know? Everybody needs to know how to unpack this in a way that’s responsible. 

 Ellen: Well for me the primary way to do that is setting up the patients with the admission that you have been a rock-thrower in the past! 

 Dave: (laughs) Yes. It’s true! And I’ve seen the damage that it does! Like when you say; “Oh, no! Those guys don’t have any data for that! I can’t believe they did that to you!” Now that person feels ashamed of what they’ve been through…they feel like they can no longer go back to that physician…or provider…who was doing something that was…perhaps…in some instances…the MOST responsible thing to do…

 So, it’s a way of getting out of that habit…you know, of alienating other (laughs) other trains of thought.

 Ellen: Yeah, and it also brings the people who are used to that default alienation into the conversation, to say like: Well, you don’t have to be that way  You can think about whether that’s what you wanna do or say or be…

 Dave: Yeah…

 Ellen: …and you can do it differently.

 Dave: Well, the future of Sleep Medicine, I believe, lies in collaboration, what do you think.

 Ellen: Yeah. Completely agree. Within and without, I think, definitely.

 Dave: Within and without! So, with our providers…and…with our patients!

 Ellen: Yes!

 Dave: The most important player on the team! They have to understand the language of this complexity, too.

 Ellen: Yes! And that’s very exciting, because I think it’s really really going to make a big difference…and it has already!

 

 ~ ~ ~ ~ ~

 

39:13 Epilogue

Well, I sure hope you enjoyed this very special episode of Empowered Sleep Apnea: THE PODCAST. It’s hard to explain how a musical project can change your life. As always, context is…everything.

 The Pulmonauts music project was lovely, delightful, and transformative, but not without friction. Think about it! These are high-level professionals, top of their game in their field, with different ways of approaching music. The project wasn’t just musically unlikely, it was socially unlikely as well.

 The thing we all learned was that we all have edges, you know? We all have prickles, defenses, silos of our own. We learned that sanding those edges down, we can seamlessly fit together, like a beautifully built guitar, or a sound and true home.

 So I’ll leave you with a brief snippit of a song I created during that timeframe, when we were finding a way to sand down our edges and fit together…it’s a song I call WoodMender… I’d hoped that it could recorded by the PULMONAUTS…but, there’s only so much collaboration you can do… long-distance, unpaid, and during Festivus. So…consider this…consider this song to be …my Festivus gift to you…about a lovely moment, when we could all sand down the edges so we can…go together…nicely.

 if you’d like to hear the complete track, it’s published as a short special, the next episode in this series. 

 In parting…I wanna wish you all a Happy Festivus…stay safe, sane, and humane out there, humans…

 Snippet from “WoodMender”

 I am a WoodMender
I build things with Wood and Glue
Stuff I make is straight and true
I’m good at what I do…

~ ~ ~ ~ ~

41:41 End Credits

 Empowered Sleep Apnea: THE PODCAST is a production of Empowered Sleep Apnea, LLC. Today’s show was written and performed by David E. McCarty, MD FAASM and Ellen Stothard, PhD. 

 Music and song segments for today’s show…I own up…it’s been me all along…I’m…uh…25% Fred…I’ll tell you about that later…

 Song featured on today’s program, “WoodMender” was written performed and recorded by me, Dave McCarty, using all kinds of stuff I found lying around the house.

 I’m really excited for where the Blue Balloon is going next, listeners. Let’s just say, I’m interested in this journey, and how it’s perceived, through many lenses. I’m interested in how our system shapes the science, and the process by which scientists themselves evolve. 

 Let’s just say…this is shaping up to be a fascinating conversation.

 Dr. Ellen Stothard and I will be back after the New Year…see you on the other side, Life Fans….

 And now…your Sleep Medicine Dad Joke…

 

~ ~ ~ ~ ~

 42:42 Sleep Medicine Dad Joke

 Officer Paterfamilias: Hey…uh…rookie…you awake?…

 Officer Yungsta: Oh…hey..yeah…Daddy-o…I’m awake…I’m awake…

 Officer Paterfamilias: Yeah, you know…it’s good to stay awake when you’re a cop on a stakeout watchin’ bad guys, you know…

 Officer Yungsta: Oh, for sure, daddy-o, for sure, I was just checkin’ my eyelids for holes, you know…

 Officer Paterfamilias: Ah…yeah…I know…I know…

 Say…say, Rookie…what- what- what- what do you call it…when your kid…you know, when your KID is fighting going to sleep?

 Officer Yungsta: What? What you mean. Like when they don’t wanna go to bed?

 Officer Paterfamilias: Yeah…yeah…yeah…that’s what I mean…

 Officer Yungsta:  Ummm…..

 Officer Paterfamilias: Whaddya call it when your kid doesn’t wanna go to sleep?

 Officer Yungsta: I dunno! I dunno!

 Officer Paterfamilias: Wait for it…  RESISTING A REST!!! GET IT??? A…REST??? RESISTING??? GET IT???

 Officer Yungsta: LAUGHS

 43:55 End Program Flourishes

 

Recommended Reading:

McCarty DE. Rocket Fuel OR: The Siloes of Sleep Medicine, The Semmelweis Effect, and the Blue Balloon Solution. In: Dave’s Notes (the official blog of Empowered Sleep Apnea). Published online 23 February 2023

 

McCarty DE & Stothard E. Empowered Sleep Apnea: A Handbook for Patients and the People Who Care About Them. BookBaby Press, 2022.

 

McCarty DE. Beyond Ockham's razor: redefining problem-solving in clinical sleep medicine using a "five-finger" approach. J Clin Sleep Med. 2010 Jun 15;6(3):292-6. PMID: 20572425; PMCID: PMC2883043.

 

 

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