Turn-around: Grandson interviews Health Hats about his Zelig-like career path and choices: unpredictable, privileged, mentored, supported, and spiritually healthy.

Summary

Health Hats is interviewed by his editor, grandson Leon, delving into a discussion about his diverse and impactful career. The episode starts with Leon interviewing Health Hats about the origins and motivations behind the podcast, tracing back to a serendipitous naming and a road trip that solidified the podcast's visual identity.

Health Hats shares his journey from opting out of a higher-paying job that required him to cut his long hair to embracing a path in healthcare as a psychiatric aide, which led him to nursing school.  The story also touches on being a male nurse in the 70s, transitioning from direct care to significant hospital and quality management roles.

Leon and Health Hats discuss the significant impact of personal decisions on career paths, the unpredictability of life, and the profound influence of one's birth and circumstances. Health Hats reflects on his efforts to improve healthcare systems, advocating for better staff and patient conditions and participatory health. The episode explores Health Hats' professional life, his philosophy on work-life balance, his role as a change agent, and his commitment to continuous learning and improvement.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Five-minute episodes on YouTube.

Inspired by and Grateful to 

Jim Bulger and Bob Doherty (deceased), Eric Pinaud, Jane Sarasohn-Kahn, Luc Pelletier, John Marks, Ann Boland, Lynn Hubbard

Links and references

Are medication error rates useful as a comparative measures of organizational performance? was published in The Joint Commission Journal on Quality Improvements in 1994 receiving the David K Stumpf Award for Excellence in Publication from the National Association for Healthcare Quality. The article was referenced in the book, Error Reduction in Healthcare by Patrice L. Spath in 2000.

1977 article about Danny van Leeuwen, the first male public health nurse in W Mass

It sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks)

Jane Sarasohn Kahn, a blogging health economist

West Virginia

The University of Minnesota ISP Program

Episode

Proem

As you may know, my production team includes Grandson Leon, who edits my audio transcript for readability for the 275 Health Hats, the Podcast, followers who prefer reading to audio or video. I call it an article-grade transcript. Leon and I speak often, when I drive or pick him up for school or he drops in for a visit. He critiques warmly and confidently. He often comments on stories and experiences in the episodes. Recently, Leon suggested that he interview me for an episode about my career. You’ve probably heard some of these stories before. In the last episode, I told you about being the first male public health nurse in Western Massachusetts. But you haven’t heard them all by a long shot. Expect more career stories over time.

Image from the movie Forrest Gump

Perhaps a theme for this episode is the unpredictability of life served by the gifts of spiritual health, the ability to find support, and the incredible privilege of birth and circumstances, setting me up to make choices that accrue to my benefit. Sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks)

For listeners, please excuse all the times I seem to be running over Leon – talking over him. It’s a function of technical challenges I couldn’t correct.  I assure you that I was more respectful than it sounds.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Birthing Health Hats

Health Hats: Hi Leon. Thanks for joining us.

Leon van Leeuwen: Great to be here. What got you to start Health Hats, the podcast?

First Health Hats logo by Danny McGinnis

Health Hats: I started blogging twelve years ago. I met Jane Sarasohn Kahn, a blogging health economist, in 2012. When I told her my story, she said, oh, you're Health Hats. You should start a blog. I did this with help from Uncle Eric and others. Soon after, I drove on a several hundred-mile road trip to the Cumberland Gap in Maryland. I rode in the front, while Danny McGinnis, an artist, sat in the back. He drew an image of my hat on his iPad. I loved it as a logo! How much can I pay you for this? $75.

Leon van Leeuwen: Wow.

Health Hats: I set up a website and began blogging weekly. Seven years later, in 2018, I received an email notice for a podcasting course from Seth Godin, whom I have followed for a long time.  He's a marketing/inspirational guy sending a daily post, saying the next day was the last day to register for an eight-week podcasting course at the low price of $300. Early in the course, the 350 attendees broke into groups of about 12 or 15.  My group became close and supportive of each other.   We still meet weekly every Sunday afternoon. We've been doing that for perhaps 45 weeks out of the year since 2018.  That got me started and motivated to keep podcasting.

Nursing school – what’s hair got to do with it?

Danny/Health Hats circa 1973

Leon van Leeuwen: How did you get into healthcare?  That's what you talk about in your podcast.

Health Hats: I attended Wayne State University for two years and dropped out to travel extensively – hitchhiking in Europe,

Columbia, Mexico, British Columbia, and across the States.  When I came back looking for work, I had a choice between a job reading water meters or working as an aide at the   Detroit Psychiatric Institute. The meter reading paid more, but I had to cut my hair, and I didn't want to cut my hair.  So, I took the aide position.

Leon van Leeuwen: How were those your only two options?

Health Hats: I was in the mode of looking, and those were two jobs I applied for. I can’t remember how many jobs I applied for, but those are the two I could get. I must have had interviews because how else would I know I had to cut my hair? They would've had to see me. The nurses at the Detroit Psychiatric Institute encouraged me to attend nursing school.

Leon van Leeuwen: Wow.

Health Hats: When I interviewed for the nursing student position, they asked about my hair. I said I can put it in a bun. They said okay.

Detroit Psychiatric Institute abandoned

Leon van Leeuwen: Checking the water meters paid you more than working as an aide in a hospital?

Health Hats: Yes. I made $3.00 an hour as an aide. I could have earned $3.50 an hour as a meter reader.

 

Wanted a life

Leon van Leeuwen:   From there, did you go to medical school?

Health Hats: No, I went to nursing school. A few people asked why I wasn’t going to medical school.  Why nursing? I wanted to have a life. I felt that medical school was, all in all, too much education and too expensive. The nursing school I attended was a two-year program that cost only $11 a credit.

Leon van Leeuwen: Wow.

Health Hats: Yeah. Even then, it was cheap. Wayne County Community College.

First male public health nurse in Western Mass

Leon van Leeuwen: You mentioned you were the first male nurse in Western Mass.

Health Hats: I was the first male public health nurse in Western Massachusetts in 1976.

Leon van Leeuwen: What was it like to be the first male nurse in that area?

Health Hats: Home care was a great place and way to start. I was excited because I didn't want to work in a hospital.  I had been working in a nursing home before that. So, I liked the idea of home care. But being a guy was different. My bosses and other staff were very concerned. How would female patients take to having a guy care for them?  I told them I never had any issues when I was one of two male nursing students in my class attending nursing school. Patients want a kind word and a warm hand.  Gender doesn't usually matter.

Article from the Holyoke Transcript-Telegram Aug 19,1977

Leon van Leeuwen: Yeah. When you're sick or not feeling well, you are not only thinking about that. It seems a little weird to ask if you've had any hardships for being a man, but did you get treated weirdly?

Health Hats: I never did; I never was in that situation. Sometimes, people in certain religions might not want a guy taking care of a woman.  But I never had that happen to me. I didn't have to deal with it.  On the other hand, I may have benefited from being a guy.

Leon van Leeuwen: Yeah, you benefit from being a guy often, but was home care your first job out of nursing school?

Health Hats: I worked in a nursing home for several months.  It mainly was passing pills, medication management, and supervising aides. I wouldn't say I liked it.

Leon van Leeuwen: How long did you do home care?

Health Hats: Four and a half years.

...

Kathleen Noonan’s quest to build bridges between communities & researchers with long-term relationships & respect for experience & expertise, just like juries.

Summary

Kathleen Noonan, the CEO, catalyzed the transformation of the Camden Coalition into a national platform for complex care. She focused on capacity building, bridging healthcare research with community organizations, and emphasizing the power of diverse partnerships. Noonan is a staunch advocate for community-driven healthcare, pushing institutions to incorporate local insights and foster long-term relationships that shape better research and policy outcomes.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Two five-minute clips on YouTube.

Contents

Episode

Proem

In 2020, early in the COVID pandemic, I joined with several colleagues asking the questions:

How can the research industry help laypeople and communities find evidence-based guidance on how to live safely? Guidance that answers their questions when needed? Guidance that feels familiar and helpful. Guidance they trust. How can we be inclusive of our communities' awesome diversity? See the podcast episode here.

We spent several years exploring those questions, informing my passion for community-research partnerships. I highlight such partnerships as often as possible in my podcast. One of my primary advocacy goals is to promote research that answers questions the public and communities ask.

My guest today, Kathleen Noonan, is CEO of the Camden Coalition, a multidisciplinary, community-based nonprofit working to improve care for people with complex health and social needs in Camden, across New Jersey, and nationwide. They develop and test care management models and redesign systems in partnership with consumers, community members, health systems, community-based organizations, government agencies, payers, and more to achieve person-centered, equitable care.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

The fragility of health

Health Hats: Kathleen, thank you so much for joining us. I've been looking forward to this. When did you first realize health was fragile?

Kathleen Noonan: That's a great question. There are so many different answers to that. At some point as a kid, you realize that your parents aren't just older than you, but older adults don't stay around. When I was a kid, there was a girl on my block who passed away from pneumonia. It was an early developmental moment. But then, when did you realize that health is fragile because the healthcare system is so fragmented? It is another whole thing. When did I realize that we make our health more fragile because of the system we've built?

Journey to healthcare advocacy

Health Hats: Tell us about the Camden Coalition and your path to becoming CEO of the Camden Coalition.

Kathleen Noonan: I didn't expect to find myself in healthcare as a 20-year-old or even a 30-year-old. I started out doing children's advocacy work after college. I was a lobbyist for a children's advocacy organization in New York City and greatly cared about economic benefits. Some might call it economic justice now, but it was things like earned income tax credits and better wages back then. Those were not the issues I worked on. You get what you get In the children's advocacy organization. I worked on early childhood and issues of the crack and AIDS epidemic in New York City. I learned much about government and governance, state and local roles, and the federal government's roles.

Insights from the legal and corporate worlds

Kathleen Noonan: I went to law school and paid off my debt by working as a corporate lawyer, which was not a terrible experience. I always tell people that one of the great things about the lawyers I worked with was that they were open to two sides of a story. And I sometimes find that many people are not open to two sides, even in my peer groups.

Health Hats: If not 10.

 Kathleen Noonan: Exactly. You're so right about that. That is part of our issue. I love that these lawyers were very open to the fact that I was there to pay off my debts and would go and do something else, which I did.

Transition to Children's Policy and Healthcare

Image by Tim Mossholder on Unsplash

Kathleen Noonan: Next, I engaged in many children's policy work - child welfare, mental health, and juvenile justice. When I landed at the Children's Hospital in Philadelphia (CHOP), I wondered what I was doing there. Then I spent ten years learning about healthcare and learned, oh my Lord, this system is very broken.

First encounter with Camden Coalition

Health Hats: My first experience with the Camden Coalition was at last year's annual conference. Our mutual friend, Janice Tufte, encouraged me to participate for five years, and I just kept blowing her off. I was involved in so much and didn't need anything else on my plate. Then Janice called me and said the conference will be in Boston this year. There's a beehive that sounds right up your alley, so I went.  It was terrific.

The impact of diversity at conferences

Image by conference attendee

Health Hats: I was in awe of that. What was there? 600, 650 attendees. This was not a small conference. The attendees were young, and I pegged the average age to be 35. I made that up, but it wasn't 60 like many conferences, and it wasn't 12. It was a diverse audience—visibly diverse (skin color and mobility)—some newbies their employers sponsored to learn more and veterans. Veterans meant people with around ten years of experience in their organization - deep and narrow expertise, whether the unhoused or victims of violence or transportation. They were excited about what they could accomplish. I was fascinated.

Meeting of the minds over community – research interfaces

Health Hats: When we spoke recently, we found commonality in the community-research interface. The community service business and the research industrial complex have different skills. I'm in the PCORI (Patient-Centered Outcomes Institute) world, where people are committed to investing in community research interfaces. I'm now wondering about your perspective and experience in the service, advocacy, and lobbying world with the Camden Coalition. What's your experience?

An outsider co-directing a Research Center

Image of David Rubin, MD from https://www.research.chop.edu/people/david-rubin

Kathleen Noonan: I went to the Children's Hospital of Philadelphia (CHOP) to be the co-director of a research center as a lawyer and policy person, not a researcher. I came in as an outsider with an outsider's perspective. My co-director, a pediatrician researcher, David Rubin, just left CHOP to attend the University of California. He was a researcher working on issues related to under-resourced kids and families. He was frustrated that the research that he was doing wasn't doing a damn bit of good and was willing to say that out loud, which is something that a lot of researchers aren't willing to do. So, kudos to him.

Health Hats: He did the research, and he had promising findings.

Implementation, a different animal altogether

Kathleen Noonan: Right. The results never hit the front line in policy or program changes at the state, local, or federal government level and weren't influential in his system. If you are at a children's hospital researching kids in the child welfare system or the public school system in a place like Philadelphia, your research is not at the top of your mind.

Shout out to Dave Rubin again. Dave, you can thank me when I see you. He was not aggrieved but asked what we could do differently. What can I do with the levers I do have? To CHOP's credit, they funded us to start a research center. They allowed us to use those funds to think about communication and policy differently so that we could use influence levers differently. I learned a lot about research. To answer your earlier question, I learned how long it took and how siloed it was from research to policy and vice versa.

Who asks the research questions?

Image by Rohit Farmer on Unsplash

Kathleen Noonan: The questions researchers wanted to answer were not necessarily those that policymakers, community members, or parents wanted answered. It was essential to spend time thinking about those things together. We also had to spend more time talking to policymakers and programs to do relevant research.

Partnering in the community

Kathleen Noonan: More recently, Policy Lab has done a great job partnering with community organizations. But we had to get outside the hospital. We would not expect people to come to us if we wanted to do this work. We had to go to them.

Health Hats: You had to identify community organizations that were potential partners and go there.

Kathleen Noonan: Yes. Earlier in Policy Lab's history - history because it just had its 15th anniversary - we focused on program and policy levers. I started to partner with organizations and community organizations. They have a more robust program with an earlier goal: community partnership.

Health Hats: About policy or with legislators, council people, and another provider?

Kathleen Noonan: Administrators, other provider organizations. When we received funding for a program, we looked at a new way to treat children and adults with acting-out issues and adults with anger management issues. They need a little help to live together better. We said we're not going to do this at CHOP. We will find community-based organizations that want to provide this service and do the project at their site

Exploring the journey of coffee from farm to cup with expert Jen Stone, delving into flavors, cupping, & the ethics of coffee production. Music & Health, too

Full 36-min episode on YouTube

Two five-minute clips on YouTube.

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Contents

Episode

Proem

When I take two minutes to bitch about the annoyances of having Multiple Sclerosis, I insist that I can’t be repetitive. I must whine and complain with new words. How many words do we have for describing symptoms of pain? Not enough. Sharp, dull, achy, daily, itchy radiating, nauseating, disabling.

Greenland has 46 words for snow and no wonder. Profound knowledge about something leads to more words being needed and created. The better we can describe ourselves to ourselves, the deeper we understand our nuances. More accurate and specific descriptions lead to better communication of our symptoms, moods, and circumstances with our health team. Then, we can make informed decisions, plan, and adjust together.

Believe it or not, this rant about words leads us to today’s episode on coffee. Welcome to my new hat – coffee snob. Our guest is Jennifer Stone, my colleague in my Thursday morning mastermind group for solo entrepreneurs. Jen is a Sommelier of Coffee and the host of the Coffee Explorer Podcast, a Quality Lecturer, and a Licensed Q Grader by the Coffee Quality Institute. She is internationally recognized as an Expert Coffee Taster and Judge for the Cup of Excellence. She has expertise in finding, sourcing, and sharing remarkable coffees from quality global producers. Over her career, she’s opened multiple cafes and created several direct-to-consumer and business-to-business specialty coffee brands. She provided expertise to others in these areas and is always excited to share the best ways to brew coffee with the market. Jen Stone has opened my eyes in unexpected ways. Drink up!

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Introducing Jennifer Stone

Health Hats: Jen, you've opened many senses for me. We met over the business. We are working together on our business; you know how that's growing and managing. But I've learned from you about coffee, not just coffee.

It's about the sense of taste because it's not just, you know, while I'm learning to appreciate fine coffee. I was concentrating more on what was happening in my mouth. I'm finding it with food, chocolate, and alcohol, and just more awareness.

Health is Fragile

Health Hats: When did you first realize health was fragile?

Jennifer Stone: This is such an interesting question. I love that you asked about the word health as fragile and not life as fragile. When a loved one passes, or you have a near-death experience, that speaks about life, but health, specifically, is a little vaguer. About a year and a half ago, I could say I loved to run. I'm not fast, but I love to jog and exercise. One of my knee joints began to wear down. I have some arthritis in one of my knees, and it felt like this bone-on-bone thing. It was disabling. After a few days of it not going away, no matter how much ibuprofen I took, I realized I needed my knee to strengthen. I don't want to focus on my knee. I had a dog who needed to run outside quickly occasionally. And I need to be able to take care of my family and go to the grocery. My job requires me to go through airports, make presentations, and stand and walk. It's a privileged framework, but I have always been ridiculously healthy. Thank God I have had my health, so I'm sensitive to anything glitchy. It was frustrating, and I realized that that little thing could impact my life, much less something larger.

Profound Knowledge of Coffee or Caffeine

Health Hats: So, how does coffee fit into that? There are so many levels. I describe you as a coffee maven, and I don't know what that means, but I think you're a coffee expert. Maven sounds cooler. It impresses me that one of the things that I know about health is that a profound understanding of something is helpful. The more you understand, like you're talking about your knee and you're running, the more you understand what's happening to your knee, the more you can manage your overall health.

You're a coffee expert. You understand the coffee process profoundly. So, is there a health piece to that? The only thing I ever hear about coffee and health is about caffeine. Dark coffee doesn't have any caffeine, but decaffeinated coffee has more. Does caffeine make any difference? Is that part of your expertise?

Jennifer Stone: I am highly aware of that because, as with any industry, health or culinary, it's very whimsical. You're only as informed as the following article about coffee, health, cheese, or butter or how much walking you should do versus how much weight you should do. I am aware of it. I have some thoughts about coffee and health: The net-net is what we must distinguish. Are we talking about caffeine or coffee?

Health Hats: Okay, go for it.

Caffeine Delivery System

Jennifer Stone: Coffee is a very effective caffeine delivery system. Everybody probably has a loose awareness of their caffeine or coffee limits. We can push those occasionally, but we keep everything in moderation. Technically, coffee is a plant. Coffee is a fruit, a seed of a fruit. It's full of antioxidants. I'm not going to list them. It's full of things that are good for you. Because we're sipping it slowly over maybe 20, 30-minute the delivery system is effective, especially with drip coffee. I say two things about that. One is it’s a good cup of coffee - you and I have talked about this - that moment happens, time slowing. I love that you used it, and I’ve written it down: that sense of taste. Can it transmute to a sense of place and that moment of drinking or brewing a nice cup of coffee?

Be it caffeinated, decaffeinated, or otherwise. Good coffee brewed well is the starting point for that experience. Coffee has also become a delivery system for additives like cream and sugar. That's a choice. Is this the way I'm going to have sugar today? Milk? Now, we're adding unflavored collagen to coffee.

Health Hats: Wait a minute. Say that again when you say collagen. That caught my attention.

Jennifer Stone: So, there are, for example, vital proteins. This collagen has peptides that are highly dissolvable. It doesn't taste like anything.

Health Hats: Oh. You were talking about additives. Okay. Thank you.

Jennifer Stone: People add a range of things to their coffee that may or may not be beneficial for their health.

Coffee Cupper

Health Hats:  The whole process is so interesting. You tend to work with specific growers, roasters, and vendors. How do you choose them? You’re not looking at instant coffee. You do all this work for us. What's that about?

Jennifer Stone: That is such a great question. Over the years, I've developed my expertise and my experience in coffee. People tell me I am an excellent cupper, which means I'm a good person who tastes coffee and assesses coffee quality. I have a designation by the Coffee Quality Institute as a quality grader. And so, a framework for tasting coffee is an international language, a common language for assessing the coffee quality that a small group can use. So, I use that point system framework. Does this coffee score high on acidity, brightness, flavor, aftertaste, or other things? We want to eliminate things with negative attributes, like whether they are sour or taste like a band-aid.

Health Hats: Or burnt.

Figure 1: From https://millilitre.my/good-reads/basic-coffee-tasting-wheel-and-how-to/

Coffee Flavor Notes

Jennifer Stone: I'm looking for harmonious flavor and complexity when thinking about coffee. I love it when I can taste a chocolate note or a milk chocolate note, specifically maybe pumpkin spice or a baking spice in the coffee; that is when I can detect a few different flavor notes. I think you could detect anyone who enjoys drinking coffee, and then I think it is a coffee that most people will want to taste and try. So that's what I'm looking for. And then with my, you know, years of network and relationships and new things happening in coffee all the time, you know, I look. I seek those coffees out from producers. I find out what they're doing at the farm, too. To make their coffees taste so good, and that's research. You must kiss a lot of frogs.

 Call to action

I now have one URL for all things Health Hats. https://linktr.ee/healthhats to subscribe for free or with a contribution through Patreon. You can access show notes, search the 600-plus episode archive, and link to my social media channels. Your engagement by listening, sharing, and commenting makes quite an impact. Thank you.

 

Coffee Flavor Notes in My Cuppa

Health Hats: I’ve got my cuppa and the label, and I'm thinking about what this says here. Taste of watermelon candy. Tropical tea, strawberry anaerobic fermentation. Natural process.

Jennifer Stone: Yes.

Health Hats: Relevant Reserve Coffee, Columbia, Adrian Lasso, pink Bourbon. It's amazing.

Jennifer Stone: Do you love it?

Health Hats: I do. It's intriguing, and it's not something that I'm going to drink routinely. I'm drinking it now because I knew I would be on the phone with you. It's a coffee that makes you want to think, so much think as taste. What is this? Never read watermelon candy, tropical tea, or strawberry. I'm always amazed at how that goes. Where do those descriptions come from?

Jennifer Stone: We have the advantage of being in the lovely vacuum of the cupping table, tasting that coffee in a tranquil,...

Susannah Fox’s "Rebel Health" on the power of Seekers, Networkers, Solvers, & Champions in driving patient-led innovation & the communal fight against disease.

Full 36-min episode on YouTube

Two five-minute clips on YouTube.

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Proem

Rebel Health by Susannah Fox

As a student of advocacy and activism, I draw warmth from the heat of others’ passion, marvel at the diversity of origin stories, and burst with curiosity about what might come next. How did they start on this journey, and why do they persist? I’ve been a nurse for 50 years. One of the best things about nursing for me was the license to be nosy – for a brief time - a visit or a stay. This nosiness melds nicely as a podcaster for an episode. I often ask guests, “When did you realize health was fragile?” Another student of advocacy and activism is our guest, Susannah Fox.  Susannah is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, has just been published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation, and she directed the health portfolio at the Pew Research Center’s Internet Project.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Health Hats: Susannah Fox, how are you? It's so good to see you. I've been looking forward to this. You've been my idol for a long time. I first learned about you when you were at Pew Research Center, and I thought your perspective and research were so helpful.

Realizing the Fragility of Health

When did you first realize health was fragile?

Susannah Fox: Wow. The first time I realized that health was fragile was when my dad was a flatliner on the table at the hospital after his heart attack. He was in his fifties and someone who, to anyone who looked at him, would've thought he was a health nut. He went four miles three times a week. He was fit. He loved to hike. He was a mountain climber. And yet he had genetically high cholesterol and a hidden, blocked artery. So, they luckily were able to revive him, and he had open heart surgery and lived long enough to then get kidney cancer in his sixties and melanoma in his seventies.

My dad was my model for lifelong health and perseverance. I love this question because it explains how you learned that health is fragile. But then also what? What happened when you learned that health was fragile? For me, it was seeing my dad persevere to regain his health each time he had a setback.

Health Hats: That's admirable.

Transition from Research to Activism

Health Hats: You had these experiences and are now in activism. How did that path happen? How did you get where you are now?

Susannah Fox: I don't think of myself as an activist. I think of myself as a researcher and a strategist who collects data, studies the landscape, and then tells the truth about what I see. I want people to enter a landscape with an understanding that if they build something on the frontier of healthcare and technology, they must build it on sound foundations.

They need to understand the truth of the situation. However, I evolved as a researcher when I started this work and met Tom Ferguson, my mentor when I was working at the Pew Research Center for Lee Rainie. We hired Tom as an advisor. I went to Tom to understand the future of healthcare and technology. He said you must spend time with patients. They are the hackers, rebels, and cowboys on the frontier, bending tools until they break.

I started spending time in online patient communities in 2001. Tom would have identified as an advocate and activist, often pulling me toward that. And I was, frankly, resisting and saying, no, I'm over here as a researcher. I don't judge whether something is good or bad. I just tell people the way the data lies. Yet, after 14 years at the Pew Research Center, I went to Lee Rainey and the then-president of the Pew Research Center, Alan Murray, and said, I've written 50 papers about the internet and healthcare, and I think I know what should happen next. I have opinions about the megatrends that are changing healthcare. And they said that's great. You can't work here anymore because the Pew Research Center rightly holds it as a core value that their researchers don't have an opinion about how things should go. I've maintained my sense of being a researcher where I follow the data, yet I also recognize that being a researcher is where I train my gaze. I think of myself as if I have a miner's light on my head, and where I train my gaze to look is an editorial choice. By looking closely at patients, survivors, and caregivers, I know that I'm choosing to honor the work that they're doing. In that sense, I've gotten pulled towards advocacy. But I don't identify as an advocate.

The Role of Perception in Healthcare

Image by Bradley-Pisney on Unsplash

Health Hats: It resonates with me when you say that. Because you've helped to inform my work, mostly in perception, like how people perceive. At Pew, you did a lot of surveys, and now you're collecting hacks and experiences. Do you see yourself as a perception researcher?

Susannah Fox: The basis of my work was the telephone surveys we did at the Pew Research Center paired with my fieldwork, acting like an anthropologist going into these online patient communities.

After I left the Pew Research Center, I worked at the Robert Wood Johnson Foundation. And then at the Department of Health and Human Services (HHS). While at HHS, I put away my research and leaned into my work's strategic side. But since then, I've partnered with my colleague and friend, Vicki Rideout, to produce research for clients like Hope Lab, the California Healthcare Foundation, and Common-Sense Media again, paired surveys with quantitative and qualitative work to give a clear picture.

I saw it in getting pulled into those higher-level conversations about health and healthcare at the Robert Wood Johnson Foundation, at HHS, and being part of the federal government. People who haven't had the privilege to spend time in online patient communities did not see what I saw, which is how much innovation was growing up between the cracks of what we can all acknowledge is a broken healthcare system.

A System Versus Community View of Healthcare Innovation

Health Hats: That's so interesting. I'm on the Board of PCORI (Patient-Centered Outcomes Research Institute), an exciting place to be. My image is not so much the cracks. I think we have the same idea, looking at it differently. I feel that innovations are happening in communities. People have a problem to solve, and people get other people together. They figure out what's going to work for them. To a system, it looks like things are coming through the cracks, but that's a system view. The underground seed, with all these roots and activity, then some little thing breaks up through the institutions. That’s a community view.

Hacking Healthcare and Startups

Health Hats: I never thought of hacking as you do in your language. Hearing you write about hacking made me think that maybe hacking is all there is. I have this idea that activism should change the system. Maybe it's better to cultivate hacking. It doesn't affect the whole country like business does, going after the dollar, but it still impacts people.

Motivation to Solve

Susannah Fox: Yeah, I want to react to that because I love this provocation of the metaphor of something growing up between the cracks as a system-centered view. I love that. The other way I think about it is the patient-led, caregiver-led, survivor-led revolution. Is that what they are? We are building the missing infrastructure. Some things are missing, and they're building that infrastructure for themselves. I also want to say that, often, when describing a team of people that come together to solve a problem, you could use the same language to describe many startup companies. It's a team of people who come together to solve a problem they think has the answer and want to affect the system. They want to help people. They want to scale. And that's the same thing we see in the patient-led revolution. They want to help people, and they want to scale. It's a fascinating question to think about. What are the motivations? The motivation to help people is at the base of many startup companies, nonprofits, and patient-led teams. Yet, how do you do that? You need resources. So, how do you get those resources? That is interesting. I appreciate that provocation. Thank you.

 Call to action

I need your help to expand my audience to younger people in advocacy. I'm doing more in short-form videos. Please help by pointing me to communities of young advocates and the channels and hashtags they use so I can listen and learn. I now have one URL for all channels and media. https://linktr.ee/healthhats is where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

Seekers

Health Hats: I'm looking forward to your book. I am intrigued by your talking about seekers, networkers, solvers, and champions, but I want to start with which archetype you are.

Susannah Fox: It is a good question. Let me quickly describe each one. Then, I'll share which one I identify as most often. The first group is seekers. Seekers feel that they're not getting answers to their questions....

Celebrating my audience. Describing my multimedia journey, stats, ongoing advocacy, future episodes and a musical bonus featuring the host on the Bari Sax.

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Proem

Welcome to this bonus episode of Health Hats, the Podcast for subscribers I appreciate. Life is good while I play in the sandbox of audio-visual communication about best health. One of my Reckoning colleagues (we review each other’s podcasts), Craig Constantine, describes his audience in each episode so he remains focused. I look at the bobbleheads on my windowsill: Scarecrow, Rosie, the Riveter, and Scully from the X-files. My audience is people who help people on their journey toward best health through caregiving, technology, measurement, spiritual strength, and planning. You get the idea.

For an added treat. At the end of this post, I'll include Lechuga Fresca Latin band playing El Quitrin by Bebo Valdez with me on the Bari Sax. Link here if you want to listen now.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Managing my bandwidth

I’m finding video creation and production so exciting that I spent 100 hours on the last episode, #214, with Fred Trotter. I can’t sustain that pace. I realized I had spent so much time on a full-length video with images, title slides, and the like that I neglected the meat and potatoes – the blog/newsletter and audio podcast. I also need more time to play my horn and improve my music production skills. So, after spending all that time, I published the full audio podcast (63 minutes), two five-minute and four one-minute videos, and a 30-second teaser/trailer. I think I’ll put the five-minute ones on YouTube as discrete episodes as they stand alone.  You can find them here: Video 1: Naughty Secret about Chart Reviews https://youtu.be/yLRilkr1LJI and Video 2: ChatGPT and health coverage https://youtu.be/pk4wYl0_U9s.

Still learning in my sandbox.

I remain committed to multimedia because you are all so different, and it’s a hoot. I’m continuing my understanding and skill at short-form videos for social media, especially Instagram. My team of Julia, Kayla, Leon, and Oscar cheer me on. I love that I can still learn.

If stats interest you - I don’t know what they mean - for some reason, the downloads for the audio podcast have increased from an average of 5-10 a day for years to 27 a day for the past 30 days (or an increased from 80 to 800 an episode). 90+% of those downloads are consistently listened to for at least 3/4 of the episode length over the years (that includes people who automatically download. See what I mean about not being sure what stats mean).  For those who subscribe to the newsletter version, with almost 50% opened, and readers spend more than five minutes reading when they do open. Kayla tells me I should be proud of that. Social media stats indicate that people scroll past and increasingly stop but don’t stick around for over a second. It is early days, and I’m refining my process. YouTube shorts require clips to be less than 60 seconds, but I’m not sure that’s my target so I may go for two-minute clips on Instagram and TikTok. Again, this is a totally fun sandbox.

Advocacy

Rebel Health by Susannah Fox

Advocacy-wise, my attention is shifting to Long Covid, community responses to health challenges, and understanding more about the characteristics of people who gravitate to and champion advocacy.  My next episode is with Susannah Fox, author of Rebel Health and a hero of mine (book published on February 13, episode on February 18). I have an episode coming up with Jen Stone about all things coffee. I’m scheduled to meet with Kathleen Noonan, CEO of the Camden Coalition. We’ll likely schedule a time to record a conversation. There is so much good happening in this insane time we live in.

Be safe, drink water, love who you can, and fight racism. Keep in touch.

Podcast Outro

I host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band. I now have one URL for all channels and media. https://linktr.ee/healthhats is where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. Buy some coffee here—links in the show notes. I'm grateful to you who have the critical roles as listeners, readers, and watchers. If you like it, share it. See you around the block.

El Quitrin

El Quitrin played by Lechuga Fresca with Danny Health Hats on Bari Sax.

Episode Notes

Please comment and ask questions

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Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.

Other Credits

Susannah Fox, author of Rebel Health

El Quitrin by Bebo Valdes played by Lechuga Fresca with Danny Health Hats on Bari Sax

Disclaimer

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

Inspired by and grateful to all of you subscribers and Susannah Fox.

Related podcasts

https://health-hats.com/pod176/

https://health-hats.com/pod173/

https://health-hats.com/pod128/

Creative Commons Licensing

The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. [email protected]. The material on this site created by others is theirs, and use follows their guidelines.

Fred Trotter on the balancing privacy & connection, the role of AI in societal judgment, and practical privacy protection strategies with a nod to Mighty Casey

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Proem

How does YouTube know so much about me? I’m searching on my browser for solutions to my too-slow-responding Bluetooth mouse. In moments, YouTube feeds me shorts about solving Mac problems. I’m following a teen mental health Twitter chat, and my TikTok feed shows threads about mental health apps. How do they know? I’m getting personal comments about my mental health. My mental health is mostly good. Who else will know? Do I care? I live my life out loud. I don’t share what I wouldn’t want on a billboard, which, for me, is almost everything. When is that unsafe? When would I be embarrassed? I’m no longer looking for work, so I don’t care. Who can access my data? What should I share? What does privacy even mean? How does privacy impact the need for connection? Isn’t privacy a continuum – different needs at different times from different people?  So many questions.

Today's guest, Fred Trotter, co-authored the seminal work Hacking Healthcare. Fred is a Healthcare Data Journalist and expert in Clinical Data Analysis, Healthcare Informatics, Differential Privacy, and Clinical Cybersecurity.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Privacy in Digital Communication

Health Hats: I picture movement along a continuum when I think about Digital Privacy. Complete privacy is connecting with no one. That’s intolerable. No privacy is connecting with everyone about everything. That’s unsafe and exhausting. Privacy and risk tolerance go hand in hand for me alone and for me with my peeps and tribes. Risk tolerance isn’t fixed it changes with context. My thoughts get muddier when I associate privacy and connection. They are flip sides of the same coin. I need community connection. But the more I connect (content and reach), the more complex privacy becomes. My approach to managing privacy involves harm reduction, a term used in substance use treatment. So, based on my ever-changing risk tolerance and my need for connection, how do I reduce the harm privacy issues can cause?

Harm reduction, safety, data aggregation

Fred Trotter: It's funny that you mentioned harm reduction. A college friend of mine, Elizabeth Chiarello, is an opioid researcher. She studies pharmacists and their situations in different regulatory contexts. She is a harm reductionist. During this conversation about harm reduction, I think harm reduction is like patient safety, where there are two versions of the word. One is a term of art that comes from a particular clinical context. Of course, as you point out, harm reduction is usually talked about in the context of opioids, which means let's not criminalize this and instead focus on reducing the harm that this complicated and miraculous class of drugs provides. Patient safety is a similar term, wherein the specific clinical context is a set of procedures that hospitals should follow to ensure that unnecessary harm doesn't happen. Then, the more general lessons could come from these approaches to harm reduction. Perhaps this concept should have a life outside this context and become broader. Let's take away some of the judgment in harm reduction, like shame associated with some consequences. These negative, arbitrary consequences are associated with a particular clinical topic. Patient safety, like harm reduction, is the generalizable version in whatever context you are discussing. Are you using best practices to reduce patient harm in a particular context? Honestly, very simple. As you switch from an inpatient hospital to an outpatient context to the context of doing research and data aggregation, it's unclear what patient safety means.

So, what do privacy and harm reduction mean? That’s something to chew on. These are terms that mean what you want them to mean in the context of a conversation. They're pretty good terms. The internet, in general, has taken terms like health equity and made them politicized and controversial. The internet can tear a word apart and make it useless. People hear a word and hear different meanings or stories when they say the same word. That makes good-faith communication difficult. Similar words like patient, safety, privacy, harm, and reduction all have some powerful expectations.

Communication minimalists and maximalists

Fred Trotter: When you talk about the risk spectrum, I hear two privacy and cybersecurity camps I can't entirely agree with. One camp is we're going to communicate no matter what. Use HTTPS, an encrypted connection, as opposed to HTTP. But we're going to communicate, we're going to send data around, and we're going to do what needs to be done. We're not thinking about the implications of the data moving. It’s somebody else's problem-communication maximalists. Then there's the camp I used to have problems with: let's shut it all down. I want my medical bills to go over snail mail, please. I don't want electronic anything happening to me. Let's go to zero on communications if I can prevent it, and let's wait until we can figure out how to secure it- communication minimalists. The implication of what you say when you say, I have a risk spectrum, is, do you want the communication to happen, but not in all contexts? And you're willing to trade off some communication to reduce risk in some contexts. Contexts, in and of itself, acknowledging that some balancing needs to occur from my perspective, are the basis for a sophisticated conversation. A surprising number of people need to be convinced that any consideration of privacy is reasonable. Like any balancing, it is good because they're communication maximalists; any communication is good, and communication minimalists, no communication without absolute privacy.

Privacy in small villages during the Bronze Age

Fred Trotter: Suppose sociologists and anthropologists look backward in time and consider how things were when most of the world lived in small villages. In that case, it's tough for the whole village not to know everything about you. If you look back into the bronze age, running a city was a logistical nightmare because you didn't have trucks or anything else. You have grain carts coming in and out to feed people in all these villages, so the vast majority lived in places with under 200 people. But all cooperated to make some land work effectively. So, there was no privacy, but there was also no aggregated data there. I guess there was no harm in scaling, for lack of a better word.

Privacy in the viral modern age

Fred Trotter: If you go viral in the wrong way in the modern digital era, either you or I could say something dumb and go viral in the wrong way on this and every call we're on. But if you do something where you think nobody's watching, and somebody is watching, somebody does have a camera, you think you have privacy, you don't, and that becomes viral. That could ruin your life and sometimes should, right? So, I think issues like police violence and the cases where police officers are misbehaving, we need cameras for a lot longer than we've had them. I'm sure thankful that we have the cameras now. So, I'm not necessarily even saying that going viral negatively and having mass consequences with your reputation destroyed for a million or a billion people at once is necessarily a negative thing. In some cases, that's warranted, but it is a new judicial engine, how we're going to judge people and how we're going to evaluate them.

Judicial engine

Health Hats: What do you mean by a judicial engine?

Fred Trotter: I think it is an alternative to the traditional rule of law, a system for judging. So, if you and I disagree, and we haven't committed any crimes - like if I hit you in public, that's assault. There's a judicial process that the government takes over once that crime has occurred. But we can see each other in private court and around this system of jurisprudence, the rule of law. Certain things are assumed, such as innocent until proven guilty. People fail to realize how much evolution has occurred because we have the concept of trial by judge, contrasting with trial by jury. And you can go to a court and decide very early in the process which of those two things you prefer. Sometimes, you can't. The concept was that God would favor whoever was right in the argument. If you lop my head off, well, you were right. And vice versa. So, the judicial process has taken centuries to evolve. It has variations across the globe. The variations are significant. Suppose you think about the judicial engine system in Singapore. For better or worse, it is famously different from the one in the United States. So, we have this concept of adjudicating problems and potentially passing judgment on people and social media.

Privacy and shame

Health Hats: How would you define privacy?

Fred Trotter: We have this ancient bronze village. If you screw up, it's limited to 250 people. And if you screw up, you might have to switch villages. And then we get to the modern era, and there was this weird period where you could get a house in the suburbs and have a greater degree of privacy than you had in the village. Nobody knew your business. You were behind your closed doors, and you had your yard. The yards were buffers against information leaking out. Now, we have a reduction from that temporary place of strong privacy to what we have today....

Lisa Stewart interviews Health Hats to discuss family, music, & listening to younger activists taking over navigation & reform of healthcare.

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Proem

Boland van Leeuwen family

Happy Holidays, family, friends, and colleagues. May the 2024 New Year infuse wonder, community, and rejuvenation.

I reunited with my friend, Lisa Stewart, at the PCORI Annual Meeting a few months ago. Lisa suggested that she interview me for the new year. When I met Lisa, she was Senior Engagement Officer and Health Equity Advisor at PCORI (the Patient-Centered Outcomes Research Institute). Currently, Lisa is the Principal at Torchlight Engagement Advisors & Leadership Coaching. Her joy lives in connecting ideas, people, and groups for organizations serious about improving the health outcomes of over-burdened communities through health equity strategy implementation and integration, cross-sector partnerships, impact investing, and capacity-building. We ponder privilege, listening, bitching, travel, family, and music. Hang on.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Why reflect? Accept and look forward.

Health Hats: Hi, Lisa Stewart. Lovely to see you,

Lisa Stewart: Wow. It's lovely to be seen and be here with you. We had this wild and crazy idea that it was time for Danny to be interviewed, right? We're going to turn the tables on Danny.

DALL·E 2023-12-16 - a color photo of a person looking in a mirror and seeing a black and white younger version of herself

What better time of year as we march into 2024 and start thinking about the life we want to lead and what we want to do differently? I’m thrilled to be in conversation with you anytime, Danny. Anything you want to say?

Health Hats: I have mixed feelings about reflection. On my podcast, I start with a proem, a preface. Why do I  have the conversation? Why this guest, why this topic, whatever. A reflection at the end, done after production - the interview, the producing, the editing - were there pearls here? Is there one more story to tell? But the reflection is essential even though I'm not really a backward-looking guy.

Lisa Stewart: Tell me more.

Bitch in bursts, not dribbles

Health Hats: Life has ups and downs. It is just the way it is. You can't have an up without a down where everything is flat - no ups and downs. Sounds boring to me. I have a chronic illness, and I'm pathologically optimistic, right? That's my style. Other pathologically optimistic people have taught me that you need to take two minutes periodically and just vent. And do the life sucks. Woe is me stuff. But mostly, I don't want to look back and think woe is me. So that's what I mean by not looking back. Accept what is and what are we going to do now.

Lisa Stewart: Very practical. Do you have a ritual around your two-minute releases?

DALL·E 2023-12-16 - biracial couple laughing, one in a wheelchair looking at their watch

Health Hats: It's a good question. The UMass Graduate School of Nursing dean introduced me to this idea. She had health problems, and we recognized this optimism in each other. She had breast cancer and surgery and the whole thing, and I had been newly diagnosed with Multiple Sclerosis. She didn't have a watch on, but she looked at her wrist and said, okay, you got two minutes, start now. So I bitched, then she did. It was hysterical. It's tough to bitch for two minutes straight and be creative. You can't bitch and say the same thing over and over. Two minutes is a long time. After about a minute, it's just absurd. So now I have a friend I texted just yesterday; we need a bitch session. She's ready. I did it with my wife a few times, and she's lovely, and it's OK. However, having somebody else who's dealing with whatever insanity is different.

Lisa Stewart: I love how you called out the arc between starting the bitching and then recognizing that there's an absurdity in it? The process itself lands back to the word reflection, and out of that, you see the kernels in it.

Catastrophizing, pathological optimist

Health Hats: I was born this way. I didn't do anything to be pathologically optimistic. Maybe because I was the child of Holocaust survivors who are both catastrophizers and pathologically optimistic, I

Danny's parents' wedding photo

inherited that, whether through genes or learned. And it works for me. My downs are in the middle of the night when I'm lying there, catastrophizing. I know that two things affect my symptoms the most - when I don't drink water and when I'm down. Symptoms are worse. They're just worse. It just is.

Lisa Stewart: Does your optimism, your pathological optimism as you call it, does that ever piss people off, particularly other people who are living with chronic illnesses? Do you ever get any blowback?

Health Hats: No. Really, it's the other way. People think it is so cool that I'm optimistic, and I'm thinking, you guys have no idea. You know what I mean? I think I didn't do anything for this. So many people have depression with whatever they're dealing with. And that's what they're dealing with. I didn't do anything. I have so much going for me. I'm a two-legged, cisgender, old white man of privilege who's pathologically optimistic, and I could count my blessings.

Music, podcasting, grandsons

Lisa Stewart: At the opening, you say you normally record and then go back and figure out the themes and then do a wraparound. But you have some idea going into it what you're trying to impart, what you want to say. What do you want this episode to say?

Danny playing sax in the Saturday afternoon Blues Funk Band at Ryles

Health Hats: I’d like to reflect on basic things in my life - my health, family, work, and music. These are the big things in my life. They're all going swimmingly. The most exciting thing to me is centered around music. In my professional life, I am really good at what I do. I'm as good as anybody anywhere, I think. But music, not so much. So, it's the place of humility for me. I really work at it. I play every day. And when I say every day, 320 days a year, unless I'm traveling or so busy with something, I play music. It's the best thing ever. It's one of the things I do with my grandkids - both my podcasting work and my music. And I have a 15-year-old grandson and a 12-year-old grandson. One lives upstairs, and one lives about eight or nine miles away. They're on my production team. That's just a hoot and a half. My grandson, Leon, who lives upstairs, is an outstanding written word editor. He helps me take the transcripts and turn them into newsletters. And Oscar, who's 12, is an excellent video editor. He coaches me on video editing, and then they're both musical. Oscar spent the night this weekend and pulled out his laptop, opened MuseScore, a composing app, and said, Opa, let's write something. And we worked on a four-bar ditty.

Lisa Stewart: I love how you bring all those together.

Danny playing bari sax in the Cobleskill Jazz Band

Health Hats: It's great. I learn a lot from them.

Listening to younger activists

Health Hats: That ties into then to another thing. In my advocacy work and podcasting, I'm an old fart. I'm 71 and on my way out, and I feel like my audience is mostly in their forties, fifties, and sixties and older - veterans in the business. There are a lot of young people out there in advocacy - 25, 30, 40. What are they dealing with? What are their issues? Where do they live and hang out? How do they communicate? Again, this is nice with the grandkids because they're much more familiar with Instagram and one-minute stuff than long-form. I'm trying to move in that direction.

Danny's home studio

Lisa Stewart: Are you listening to any podcasts?

Health Hats: I find it hard to create time to listen because I'm full of myself and doing what I'm doing. And listening is another thing to do. With podcasting, I force listening. I just finished doing a series on emerging adults with mental illness. I started with a couple of emerging adults who were in recovery from their mental illness issues, and then parents and teachers—a spiral of sorts to bring in people and include them in my process.

I've also been learning about different groups like Generation Patient, Students with Psychosis, and the Camden Coalition, all places with younger people either supporting people with chronic illness or having chronic illness. I’m trying to become part of those spaces and still learning to do that. If I have a goal for the year, it's listening and contributing to those spaces, which is a hoot.

Connection through video, Instagram, YouTube shorts

Health Hats: Now I'm producing videos and adding short-form material like shorts for YouTube and reels and posts on Instagram. Creating good one-minute stuff is time-consuming. I don't do anything simple. I just can't help it. I'm always learning something new, like adding my music or images. What’s my ask? What am I expecting from people? It's not just that I'm putting something out. How do you stimulate people? Once I find where people congregate, I hang out; first, I lurk in different groups.

Generation Patient is international for people in their twenties. I'm 71. So, I asked Sneha Dave, the executive director, if you mind me lurking. It could be creepy, right? She said, oh yeah, sure, we’d love it. We love having you whatever you want.

My activist peeps

Impact

Lisa Stewart: I can see how that's invigorating. We need that to bolster us. We have a lot of value to give. I'm putting myself in your category, Danny,...

Pathways & switches of pain affect well-being & productivity. Amy Baxter, MD. explores recent insights about managing pain and learning coping mechanisms.

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Proem

Buzzy, Relief from Needle Pain by Amy Baxter

How crazy is it that pain is one of my favorite topics? Not so crazy as pain may be life’s most common symptom. One study pegs the annual cost of pain (as a primary diagnosis) to be between $261 to $300 billion. Yikes. No one I’d rather talk with about pain than Amy Baxter. Amy and I correspond regularly about life and pain. We last recorded a conversation about pain in July 2019, Pain: The Solution - Many Solutions. Our knowledge about the pathways and switches of the brain’s survival system has increased dramatically since 2019. Let’s jump right in.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Learning from lived experience

Health Hats: You've learned much about pain since we last talked. Tell us about that.

Amy Baxter: I broke my neck in 2015 and then got intubated for a while, and then I had a ripped rotator cuff that I ignored until it got horrific. So, I feel grateful that I've had the experience to cope with my own acute and chronic pain, mostly chronic. It's nothing like I imagine having a genetic issue or having an inflammatory ongoing issue, and particularly something like covid or fibromyalgia or an autoimmune system situation where it's ongoing and systemic. Nonetheless, I've had that experience, which has been valuable. I also have been working with the National Institutes of Mental Health, Helping to End Addiction Long-Term Initiative, bridging that place between pain and opioid use because if we didn't have the issues of post-surgical pain and acute pain that we treated with opioids, we wouldn't have an opioid problem. I've been busy.

Health Hats: Goodness, where should we start?

Amy Baxter: Let's start with the stuff I put in the TED Talk because I spent a lot of time trying to encapsulate what I'd learned so people could use and benefit from it, change society and how we deal with healthcare in this company or country—Freudian slip.

Oldest and Best Survival System

Amy Baxter: Physicians are not taught about pain in medical school. We don't know what it is. We don't understand how to treat it. We don't think it's our job because we're supposed to figure out what caused the pain and fix that or inflict pain to diagnose it. But most people go to the doctor for pain. So that was something I hadn't appreciated. What we have learned about pain in the last 20 years through functional MRI is that it's not what we do learn about in medical school, which is you poke your finger, and if you had lidocaine in there, it wouldn't hurt. But if you don't, it goes up to your brain and hurts. Instead, pain is just the oldest and best survival system, so it's a full-brain, total symphony of everything you've ever associated with something you want to avoid. So, pain is not just the incoming stimulus. It is all the memory, fear, decision-making, and actions, and it's just this giant response. So sometimes your brain is wrong about how much pain you should feel, and sometimes you can learn how to override the brain and say no, we’re fine.

Pain as opportunity

Health Hats: I automatically react whenever anybody uses the word should. And I'm wondering if I can frame it as being helpful to you instead of should.

Amy Baxter: It's an option. I always tell my kids that it is an opportunity, not an obligation. So, if we understand that an opportunity is happening that causes us to feel pain, it makes it easier to think about ways to cope with it.

Health Hats: Unknown pain is so scary.

Amy Baxter: We talked about it offline recently. Once you've had chronic pain that flares back up, it's easier every time to remember what you do that helps. And last time, you told me about hydration, and I had not been aware that even mild dehydration increases your pain sensitivity. What are the things that you tell people and the things that you do? What is your pattern? What do you do when you've had pain that then flares up?

Health Hats: I just ordered a shirt that says, drink water, love hard, fight racism, and drink water Is the top one.

Amy Baxter: All good things. And with the opportunities you do. That's proportional.

The thalamus conducts the switchboard

Create in DALL.E

Pain goes into your brain in sensation nerves that get filtered in many places. So, they get filtered in the spine, they get filtered in the brain's conductor, the thalamus, and when people do not have chronic pain, the thalamus sends information to the part of your brainstem saying, cancel that out. Or just dial that down, please. We don't need that. But when you have chronic pain, that area of inhibition shrinks a little. And then the areas in the thalamus that say send this to the areas that get worried about pain and ramp it up. Those areas get bigger. When it's something like knee pain that you're going to have surgery for your osteoarthritis, the thalamus changes shape during the development of this pain. And then, six months after the knee surgery, it goes back to normal. This tells us that the brain's responses to pain are very plastic. They can go both directions. They can be helpful in inhibiting pain. They can be unhelpful in decreasing that inhibition. And it also is something that can be modified. So, the next level of modification comes from pain, which goes from the thalamus to the brain switchboard called the anterior cingulate cortex (ACC).

Created in DALL.E

But whatever, there is a switchboard that then shoots that information out to memory, options, optimism, hope, fear, short-term and long-term decision making, and all these other places, and that ACC area can be very quickly taken offline by solving a problem. It must be a visual problem. It has to be a discrimination problem. Is that a cow or a horse, or is what I tell people to look at a line of text and count how many of the letters have holes because then your ACC is just, wait, what? That's supposed to be a letter. I'm used to it in this context of resolving conflicts. It is the primary job of the ACC.

Health Hats: ACC one more time?

Amy Baxter: The switchboard, it's the switchboard that is supposed to send the message of pain all over your brain. But if you give it a decision-making task. To resolve a conflict, it will prioritize that. So that's why distraction works. If distraction is something that you're paying a lot of attention to, particularly if it's a problem or a game or something or a critical decision-making thing, that's why it decreases pain. Because suddenly, the switchboard, which is supposed to be activating all the rest of these areas, isn't.

The information never gets there. So, you never have that input that you interpret as pain.

Pain: Your brain's opinion of your safety

Amy Baxter: The practical ways to do this. A couple of things: one great phrase is pain is your brain's opinion of how safe you are and this whole thalamus changing shape and all this influence up and down stuff. One of the things that helps reshape your brain's connection. They call them connectomes, and they can now see that the areas that the switchboard is sending things through get thicker, heavier, and faster. The more pain you have, the more traumatic it is getting that pain, so that connectome just is how efficient your brain is at feeling pain. The more you have that connection laid down, like with chronic pain or something traumatic, the more intense the pain is going to be perceived until you disable that until you get it down. Even if your body is fixed even once, this is why you get that. They call it ramp-up or central sensitization. If you've had something that has hurt forever, like knee pain, you continue to feel more pain in that area until, even if it's fixed, it has a chance to wear down. I think the sixth month is also interesting because when people with chronic pain start on a program of intentionally trying to ignore the pain, if they know they're safe, intentionally going, okay, I can push through this. I'm going to want to tolerate this amount of pain. It still takes about six months before you have a day where you realize you don't remember if you felt pain yesterday or not. It takes a while. And the other thing about these connectomes is not everybody has the same intensity of response.

What’s going on? Communicating to physicians

Physicians need to know many of those things because it's part of why I tell people when they've got a flare and can't stand it and must go to the emergency room. And they feel awful, and people are looking at me as drug-seeking. It helps to have something that's signed by another doctor that says this is the chronic pain condition I have. These are what I do. And I have a flare. It has been this long. Usually, it feels like this. It is different because of this. Because that's the thing, you'll get blown off because you've got something different. But all they're hearing is chronic pain. And I'm here for medicines. It's very much focusing on this is different, or my doctor and I agree. We do this when it gets to this level, which it has been for two days. And so that, it's helpful to know that what's going on is you have a connectome that is extremely efficient at feeling pain, and so that's part of what's going on.

Sickle cell, self-knowledge, mu receptors

Health Hats: One of my dearest friends has sickle cell. She's very sensitive to what's going on with her body. And as you said,...

My son, Mike, died 21 years ago at age 26. Wasn't born with a tattoo telling him how long he had to live. Best spiritual health of his life. Left me a sign.

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Episode

Proem 2023

I resurrect this episode to celebrate Mike and thank you, my readers, listeners, and watchers. It's hard to believe that 21 years have passed since Mike died. He would have been 46. We would have been proud of him, and he proud of us. "Danny helped me love myself. I had to love myself to have a good relationship with him." Still, the most glorious thing anyone has ever said about me. Let’s celebrate loving ourselves and at least one more. Mike, I feel you.

Proem 2020

I wasn’t born with a tattoo on my ass telling me how long I have to live. Welcome to the second anniversary of Health Hats, the Podcast, episode number 99. On November 15th, 2018, the first episode honored my son, Mike Funk, who died on November 18th, 2002, eighteen years ago, age 26, of metastatic melanoma. Mike, a wise poet, found his best spiritual health in the last year of his life. Hence, the most memorable sentence in my life. I wasn’t born with a tattoo on my ass telling me how long I have to live.  I’m grateful to have known Mike, my son, our brother, our friend.

I resurrect this episode to celebrate Mike and celebrate this fantastic medium of sound and storytelling for advocacy and connection. Podcasting enriches my life and my work.  I use podcasting to explore and organize my mind's chaos, experiences, and feelings. I connect with people I admire for brief intimacies. I’m thankful for my podcasting compatriots. We have met weekly and biweekly for two years to support, critique, and challenge each other as artists and technicians. You know who you are. I’m grateful to my readers, listeners, sponsor, Abridge, and web/social media coach, Kayla Nelson. I miss my mom, Ruth van Leeuwen, my first and greatest blog critic, and follower.  She would have tried to learn podcasting technology if she could have found a 15-year-old from her church to teach her how to use a podcast player. She died around Thanksgiving in 2014.   Gratefully, here you go, episode one and ninety-nine. Happy Thanksgiving.

Open Hearts 2018

Health Hats: In this session, I'll share some tape of an interview with Mike a few months before he died. Bob Doherty conducted that interview and some thoughts and stories from me. One day, Mike and I were sitting at the kitchen table, talking about dying and superpowers. And Mike thought that he and I had the same superpower. We both accept what is. Not the ‘life sucks, what’re you gonna do’ variety of acceptance, but the ‘yup, here is impending death, how can we live our best lives’ variety.

‘Yup, he died young. Young death happens a lot. You open your heart, and tragedy walks right in. What's the alternative, closed heart? Not for me. So, let me set the stage for you. This recording happened on July 17th, 2002, at my 50th birthday party. We had the party in the Potato Barn in Schoharie County, New York. When you hear some of the audio, you'll hear a lot of noise. I'm able to filter some of it out, but not all of it. So here we are at my 50th birthday party.

Love myself 2002

Bob Doherty was interviewing Michael Funk. I'm sure you'll be able to tell who is who.

Michael Funk: Yeah. I meant to just shoot questions, and we'll just rap.

Bob Doherty: All right. Why don't I ask you the same questions I want to ask other people. How did you meet this jamoke called Danny?

Michael Funk: I was going to school with his oldest son, Simon.  I don't know, a mutual friend introduced us and I went over to his place, decided that it seemed really comfortable and the type of environment that I hadn't experienced before. I just wanted to hang out there. I didn't really know Danny and Ann too well, I guess I met them on the first day. I just kinda came into the house and didn't leave, and they were okay with that. It was never an issue about who's this kid, why is he here all the time? Why is he eating all our food? So I just started eating all their food right from the start, and they just made me welcome. It was the first time I'd seen a nuclear family. I don't want me to say this is a traditional nuclear family cause it's not. It's and very amazing and dynamic family, but they're all about just bringing you in and giving you their love and trying to understand you're trying to help you understand yourself. It was an environment I didn't want to leave, and I didn't have to. There you go.

Health Hats: I remember Mike coming to live with us. He just appeared, came home with my son Simon and he never left. We did go talk with his dad and suggested he come live with us. And his dad was fine with that. That was that. I can't say it was always easy. Mike was always good to us, my wife and I, very polite, very considerate, very loving, but he was a crazy teenager, but he did his homework before he did his crazy stuff, which we really appreciated.

Bob Doherty: You had two awful go-arounds with cancer intervention recently. Then more bad news. Tough thing to take.

Michael Funk: My thing is it's not awful. It's not tough. I have a philosophy of life, that life just happens. And I don't mean to say that I'm passive about it. But that is going to happen, and you got to make your peace with it. And then it's like a letting go. I understand it. Sometimes I hate trying to explain it because it sounds simple. It sounds like I almost have developed it by not thinking about it, but tomorrow is going to happen regardless of what I do. I can be happy about it. I can prepare myself everything I can prepare myself to be. And those things now are like; I want to be a loving person. I want to be around the people I love. I want to be happy, which isn't necessarily quantifiable. And so I expect these types of things, and I get them. I don't need to; I don't need $50,000 a year. I don't need a college degree. I don't need a car. I don't need these possessions. I've got an amazing family that I can hug whenever I want. This isn't stuff I grew up doing.

Bob Doherty: I had a strange interaction with Danny about a week ago. We were talking about you and your diagnosis. I said to Danny that I look for justice in the world. I want things the way I want them, the way I expect them to be. He quickly said to me, that's your thing. I don't bother with that. And he went right on. And you seem to have the same kind of thinking: you're living and enjoying your life and not struggling with an idea of what ought to be. Did Danny play a part in that, or are you both just two peas in a pod?

Michael Funk: I think Danny played a type of role. Danny's got the type of personality if you're going to be really close to him, you have to love yourself to be comfortable around him. And when you get someone in your life that's really important to you. You want to make sure you keep interacting with them. So, if there's a part of me, that's uncomfortable being around Danny, I'm going to be unhappy because I'm going to make sure I'm around Danny. So that was a challenge to me to make sure that I knew who I am. I know what I really want to do. I believe in it, and I can practice it because Danny's going to challenge me if I'm doing something stupid. I used to drink and party all the time. And Danny would call me on that. It was just not like he would nag me about it, but it was upfront, he knew what was going on, and we would talk about it. So, I had to know what I was doing and start thinking about what I was doing. A difficult relationship but the most rewarding type. I had to be happy with myself to really enjoy Danny and my relationship perfectly. So, he pushed me to a certain position in my life where I had to make expectations of myself that were real and not just these secondary entertaining myself with these types of things. I had to love myself to enjoy our relationship.

He met a girl 2018

Health Hats: Oh, man. That just makes me want to cry. Love myself. I remember when Mike was diagnosed with melanoma, we saw this ugly thing on his neck. We, I, knew it was bad. He had surgery to have it removed; some nodes came out, and a year of Interferon chemotherapy. Those were hard years for him. He felt like crap all the time. He was pretty freaked out. We were pretty freaked out after that, after the chemotherapy. Some time passed, and he pulled his life together after that, deciding to go to school, went to Geneseo in upstate NY, met a girl, and he was in love. It was wonderful. Then one day I got a call, 'I'm numb on my right side.' I thought, 'Oh man, this isn't good.' Sure enough, he had a brain tumor, had surgery, and then he had a lung tumor and had surgery, then more brain tumors. I'm proud of us as a family. We pulled together and supported him and supported each other and coordinated his care. We had weekly phone calls where we would share about what's been going on for the week and what are our upcoming challenges? What tests are coming up and doctor's appointments and who's going to take them and how are Mike and Betsy they feeling?

Birthday wishes for the old guy 2002

Bob Doherty: What birthday wishes do you have for the old guy?

Michael Funk:  I want what for him what he already has.  Danny has everything. He loves his job. He loves his staff, has a great family. You don't hear him complain. What do you do for somebody like that? What do you wish for someone who has everything? I wish for Danny tomorrow what he has today. He has the perfect existence right now. Yeah, he has some stresses, he deals with them and just keeps on going.

Spiritual health 2018

Health Hats: Oh, Mike, I just love you. This morning. I reached out to Bob Doherty, gave him a call to get his take on the experience he had intervie

Personal growth living with a chronic illness, sickle cell, the importance of open communication, building a supportive community, & advocating for oneself.

About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this.

We respect Listeners, Watchers, and Readers. Show Notes at the end.

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Proem

I’m delighted to reconnect virtually with my dear friend, Fatima. We last recorded several conversations, two with her mother, Esosa, in 2019 as part of the series on people with complex conditions transitioning from pediatric to adult medical care. The titles included Living a Happy Full Life, Good Listeners, Good Conclusions, and I’m Not Drug-Seeking. I’m in Pain.  Becoming friends with Fatima has been one of the delights of my last decade. I especially value sharing our diverse experiences, finding many common cords (chords), leading to ongoing separate growth and development. From Fatima, I’ve dared to proudly introduce myself as a 2-legged cisgender old white man of privilege.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Four more years, a mother

When we had the conversations in 2019, you were a mom, but it wasn't about you being a mom. Now, you've been a mom for four more years, dealing with sickle cell and being part of the family unit. Your mom said it's not just the person with the diagnosis; the whole family must manage. What are your thoughts about that now? You and your kids are getting older. Your son's graduating from preschool. I can't believe it. Anyway, what are your thoughts about that?

Fatima Muhammed-Ighile: She states that sickle cell is a family issue. These last few years, I've understood that more profoundly. My kids are now five and six. They ask questions, and there are times when they can now comprehend how my restrictions, based on when I feel sickle cell pain, affect their lives. So that's required me to have discussions with them that, at times, I wish I could have delayed.

Health Hats: If I remember correctly, your daughter probably has the most challenging questions.

You mean I won’t get sickle cell?

Image from https://www.kold.com/2021/01/28/federal-committee-recommends-more-research-care-patients-with-sickle-cell/

Fatima Muhammed-Ighile: It was a lazy Sunday afternoon, and she talked about when she gets older and has sickle cell. This is what she will do. I'm like, that's not how that works. What do you mean when you get older? I have sickle cell. She said, you're an adult, and you have sickle cell. So, when I'm an adult with sickle cell, I told her that you won't have sickle cell when you grow up. She was so shocked by that. We looked at each other as if we had two heads, and she ran to the room and told her younger brother, guess what? We're not going to have sickle cell when we're older. Did you know that? I thought I was doing an excellent job explaining things to them.

I didn't know they had internalized the fact. They thought they'd also have pain, sickness, and hospitalizations when they got older. They were excited about that, which made me sad. But then, after the sadness, mom guilt, and all the unhelpful feelings, I had to think back: okay, we need more conversations. Things are not landing as they should. And that was a moment for me to realize that we need to talk about this in doses. That was an eye-opener. That happened about 18 months ago.

No lying in motherhood

Fatima Muhammed-Ighile: Right now, if I'm having pain and I said we're going to do something, I have pain that day. I have to say no. That is hard for me because you and I discussed treating children not as objects but as actual human beings.

They are people. So, I'm not going to lie to my kid. However, I would be uncomfortable if she asked why that man wore high heels and lipstick. I'm not. I will not lie to you. That's just mine and my husband's ground rule. However uncomfortable we may feel, it's their right. They have a right to be told the truth, the best we understand. They are little truth-tellers and force the truth out of you. I have to deal with those feelings of discomfort on my terms. So, with counseling and therapist journaling, it's not their fault if I feel sad that they think it's unfair that they can't do something because I don't feel good. That's completely justifiable for their kids. It's okay for them to be disappointed.

Harder on myself

Health Hats: Are you harder on yourself than they are on you?

Fatima Muhammed-Ighile: They know I don't lie to them, and I keep my word. They are very forgiving. It wouldn't even cross their mind that I genuinely didn't. They forget about it after the next act. But I still hold onto that feeling as a mom because this means so much to me. Like I know most parents, it's their job, but we purposely set up our lives so that their needs can be taken care of at a moment's notice, emotional and otherwise, so it's very intentional. So, when I feel like I'm failing that, that hurts.

Image by Guillaume de Germain on UnSplash

Treat us differently

Health Hats: I remember back, and you can correct me if I remember this wrong, but I think back to when you and I worked together, and my grandkids were little. I remember conversing with you when I noticed that the grandkids treated me differently than Ann because they would just run along with her. She would have to be careful that they didn't cross the street without looking, but with me, they would just stick and make sure that I didn't cross the street without looking. I think that they got a sense of it was different. It wasn't like it was any big deal. It's just that Opa can't chase them. It was an eye-opener to me that they would think about me so differently, And at first, I think I felt weird about it. Do they feel less free with me? And then I thought, no, maybe they're three, but they got that something else is happening here, and they got to take care of Opa. And that was a good thing. So, you're talking about them feeling disappointed, you feel like crap and so they can't do, you guys can't do what you might have had planned. Do you think their disappointment is okay? I'm disappointed. Okay, let's move on. As opposed to, mom, you suck. I'm disappointed. It's all your fault, Mom.

Fatima Muhammed-Ighile: I have noticed that they feel the need to go out of their way to help mommy out on the days they can see that I'm not doing well. Oh, Mommy, I'll fill up your water. You need water. Remember what the doctor said? You need a lot of water. You have to stay hydrated. I had to tell my daughter once because if I do this for you and let you nap, will that mean you won't ever have to go to the hospital again? I had to tell her I would still go to the hospital. There's nothing that you can do or I can do. We can just try our best. But it's a fact of life. It's not that you didn't let mommy take a nap. Now it's never your fault that I go to hospital. That's not how this is. I see she takes on much of that responsibility and burden. Although I appreciate that she's compassionate and loving and wants to help, I don't want her to put things on her shoulders that don't belong in her tiny little shoulders,

Health Hats: It seems you don't have that much control over that.

Fatima Muhammed-Ighile: Lie to me, Danny.

Where do they fit in the world?

DALL·E-2023-10-21-14.25.17-Black-Muslim-woman-in-pain-with-two-young-children-hanging-on-in-the-style-of-a-graphic-nove

Fatima Muhammed-Ighile: I think you're right. I'm making it bigger in my mind because they're now at an age where they compare. I even heard them talking about who in their classes is rich and poor. Azeez and I just sat in silence in the living room. They didn't know we were listening. What a fascinating conversation! How do you even know? It was very interesting. They're starting to compare and contrast and trying to find where they fit in the world. In that sense, we always talk about how not everybody is the same and what God gives one person and doesn't give the other. It has no bearing on your goodness or if you're deserving. That's not how that works. So, we talk about resources and money and who has or doesn't have. If a child doesn't have food or the best home, it doesn't mean they're not a good person. They're not being punished for that. It's just that our lives are different.

It hurts me to know that I might not do what they think other moms can or should do. But I don't even think it's gotten to that point yet. I don't think they think some moms do this or some do that. I can show up to some school events, but some parents will never attend any school events because they're working. And that's okay, working. I don't work. But that's not everybody's life, so I know I catastrophize their disappointment because of the pressures I put on myself. It still doesn't necessarily lessen the guilt per se. But I have to move. I don't want to drag myself or them down with guilt. It's very unhelpful. It's useful for collecting data,...