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Be the Change. Move at the Speed of Trust.

By September 4, 2022September 5th, 2022Advocate, Consumer, ePatient, Leader, Podcasts, Researcher

Chat with Isabelle Barbour, Truthteller Consulting, about partnerships, community advocacy, privilege, disparities, trust, and being your best self.

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Episode Notes

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Contents with Time-Stamped Headings

to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 2

Introducing Isabelle Barbour 01:11. 2

Intro 02:23. 2

Health Improvement Collaborative of Southeast Connecticut 02:59. 2

Writer’s Block & SCORE 04:59. 3

Collaborations 06:32. 3

Partnership grants – Mini-grant Funding 08:14. 4

Partners, grantees, power – Be the change 11:25. 4

Needing help, asking for help, accepting help 14:11. 5

Vulnerability, humility 17:50. 6

Earn respect. Practice being our best selves 22:20. 6

Disparities in research 26:14. 7

Leveraging privilege 27:25. 7

I already drank the Kool-Aid. Now what? 31:23. 8

Partnerships between communities and researchers 33:48. 8

Move at the Speed of Trust 36:59. 9

Maternal health 39:32. 10

Vulnerability and partnerships 40:52. 10

TruthTeller Consulting 42:17. 10

Take a step back to reflect 43:02. 10

Keeping my ear to the ground 44:32. 11

Managing with my brain as it is 46:30. 11

Nourishing the brain 48:50. 12

Try something else 50:04. 12

Reflection 53:12. 13

Outro  13

Please comment and ask questions


Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Web and Social Media Coach Kayla Nelson @lifeoflesion

Turn Your Love Around by George Benson played by Saturday Afternoon Blues Funk Combo at Common Ground on 12/07/2019 with Lenni Webber on keyboard and vocals, Bruce Hoppe percussion, Eric Solomon bass, Peter Cicco guitar, Glen Alto guitar, Danny van Leeuwen bari sax

Breaks played by Danny van Leeuwen on bari sax

Photo by Shane Rounce on Unsplash

Photo by J W on Unsplash

Photo by Hush Naidoo Jade Photography on Unsplash

Photo by Priyanka Singh on Unsplash

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

Sponsored by Abridge

Inspired by and grateful to Ellen Schultz, Neely Williams, Fatima Muhammed Ighile, Jan Oldenburg, Jodyn Platt, Dr. Lisa Masinter, Dr. Michele Whitt, Kristin Carman


TruthTeller Consulting

Health Improvement Collaborative of Southeastern Connecticut.

Robert Wood Johnson Foundation

Writer’s Block


PCORI solutions to create, catalog, and disseminate public engagement tools

2 min trailer

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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.

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The Show


A community learned that theirs’ was the county with the country’s most pedestrian/auto accidents and deaths per capita. People came together, identified high-risk intersections, and began to study traffic patterns. Some researchers and media and artificial intelligence techies joined the group. They placed video cameras on utility poles and designed software to crunch the hours of media data to find patterns.  Then they moved the set-up to other high-risk intersections.  A local problem, solved by the community, automated, and shared: my first appreciation of community-focused research and action.  Since then, I have looked for examples of community problem solving, research, and resulting technology.

Introducing Isabelle Barbour

My friend and colleague, Ellen Schultz, knows of my interest and introduced me to Isabelle Barbour. Isabelle introduces herself as the Director of Truthteller Consulting, where she provides leadership and support for equity-focused public health work and explores how storytelling can make our lives and our world better. In her 20+ year career, she has worked in community, county, and state public health, focusing on systems change and health equity. Her work has included a broad array of public health topics and strategies, including violence prevention, cross-sector partnership, Positive Youth Development, community organizing, Coordinated School Health, marijuana legalization, and public health modernization. Isabelle has a master’s in public health degree from UCLA and lives in the woods with her husband and two wayward dogs.


Welcome to Health Hats, the Podcast I’m Danny van Leeuwen, a two- legged, cisgender, old white man of privilege, who knows a little 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 Improvement Collaborative of Southeast Connecticut

Isabelle Barbour: Hi, Danny.

Health Hats: Hi Isabelle. It’s lovely to see you. It’s where are you?

Isabelle Barbour: I am in Southeastern Connecticut in a little town called Old Lyme.

Health Hats: What’s the funnest work you’re doing now?

Isabelle Barbour: I’m so glad you asked that question. I have been able to get into a new sphere of work with a collaborative I work with here called the Health Improvement Collaborative of Southeastern Connecticut. And we got a grant with funds from the Robert Wood Johnson Foundation. That’s focused on strengthening our collaborative and advancing racial equity in the region. Long story short, part of that was trying to do some resource distribution in getting some of those grant dollars to community-based organizations that were forwarding racial equity in the region. I get to work with each group to tell their story via a recorded audio segment or a podcast. And it has taken me down a whole new, fun, and exciting road to understanding audio editing, to using my storytelling skills, which I’ve been working on, in a new way. And I have to say it’s amazing to build something with people. It changes the relationship positively.

Health Hats: What are you building?

Isabelle Barbour: We’re building these podcast segments to highlight these organizations’ work. Many are smaller organizations, so they’re more easily overlooked, but they shouldn’t be because they significantly impact the community.

Writer’s Block & SCORE

Health Hats: Can you give us a taste of a couple of them?

Isabelle Barbour: Sure. The first one is now with a group called Writer’s Block, which primarily works with youth in the New London area. Primarily youth of color and many queer or non-binary youth to reflect on social issues on the stage. And. So it was amazing to tell the story of the folks directing that group who came on as younger folk in the organization and the impact of doing that work in a pandemic when there’s a lot of uncertainty and providing a safe space for youth. So, that’s one. And then, I just did some taping, and I’m doing a lot of audio editing with a group called SCORE. I’m going to get the acronym wrong. It’s a racial justice group in Southeastern Connecticut that grew out of the Black Lives Matter effort. And I talked with her five directors. Did a zoom interview with them. And they all found each other in this moment of history we all experienced. So, there’s a lot there, and they’re connecting with the community, looking at the school district and the police, and being a resource for the community.


A picture containing peoples hands on a treeHealth Hats: As a result of having each told their story on a podcast, does that lead to them having an ongoing relationship with each other as far as a mastermind group or support group, or collaboration amongst them?

Isabelle Barbour: That was part of the effort before the podcast brought them together. And we wanted, the collaborative and I work with the collaborative wished not to make people run through hoops to get dollars, but say, we recognize what you’re providing. We want to help you in the most concrete way possible: to give you dollars to help support your work. We came together a couple of times. We have an email thread where people share information, and folks are interested in listening to each other’s podcasts. I think the podcast piece was an offering, a further offering of partnership. In that, we wanted to provide something that would allow other collaborative members to hear about the work going on in the community. And provide something for these organizations to show funders what they’re doing. It’s another, perhaps more charismatic way, besides a report or telling their story via writing.

Partnership grants – Mini-grant Funding

Health Hats: And so, is the funding for organization operations? Is the funding for research? Is the funding for living expenses? What’s the array of when they look for funding for these groups? What are they funding?

Isabelle Barbour: They’re not a homogeneous group, depending on the organization. So, it’s all different. A lot of these groups provide mutual aid to the community. Okay. Several of them are advocates doing policy advocacy. Some provide specific resources to equip teachers and administrators to address racial equity in schools. Some of them are training community leaders to be better allies related to racial equity. So, it’s a little different with all of them. We put out a request for what they wanted to use the funds for. We wanted to see something that got at some systems change. Something that would start to at least start to impact the conversation to forward change in the community beyond providing one-to-one services. Yeah. Understanding that’s often part of meeting the community where they’re at, we wanted to see something that helped raise the profile of forwarding racial equity in the community.

Health Hats: When you talk about funding, are you talking about tens of thousands? Hundreds of thousands, 50? What, no. These were range.

Isabelle Barbour: No, these were mini-grants. These were small grants like a thousand $5,000. Okay. Okay. Yeah, so $5,000, and then we are working with them to give them a thousand dollars more to help support their time in participating in the podcast.

Health Hats: Yeah. It’s always interesting to me what can be done with how much.

Isabelle Barbour: sure.

Health Hats: So, you’re saying that small amounts of money can make a big difference for small, diverse organizations.

Isabelle Barbour: I think that it helps. I believe that larger amounts of money could make a more significant difference. I’m not saying that small is better. I just know that, okay? With our total allocation, there was a limit, right?

Health Hats: You work with what you got,

Partners, grantees, power – Be the change

Isabelle Barbour: We work with what you got. And honestly, our goal for this from the collaborative standpoint was that we want to do better. We want to be a resource and a source of movement towards racial equity in this part of Connecticut. We want to partner with people who effectively do that work to learn from them. We call these partnership grants and put very few hoops for folks to go through because we weren’t coming towards them as a funder. We were coming toward them as someone who wanted a partner. Yeah. And that means that, when there are challenges or problems, or somebody’s not showing up, I might call them and say, are you okay? What’s happening? How can I help you? Because that’s what you do with a partner that you don’t necessarily do with a grantee. And it changes the relationship in a way that I think is positive. And I’d love to see it. I’d love to see funders approach grant-making in that style with a more of a partnership angle.

Health Hats: So, this is very interesting. Say more about these characteristics of partners versus grantees grantors.

Isabelle Barbour: I think that our system in this country is if you have the money, you have the power. And I think when we follow that, we fall into supporting white supremacy because there’s been so much to disadvantage other groups from having the money. So therefore, they do not have as much power. And I think what we wanted to do was say. We have this money. It came in a grant. We want to give some of it to you because we can. And not because we want you to do anything different than what you’re doing, but you deserve to be recognized and part of the change we want to be part of. And, to forward with you, we want to be a true ally. We want you to come to our meetings and tell us how we can do better and what’s wrong. And tell us this new governing document we’ve created, what’s wrong with it, help us tell us hard truth so we can be better. And I think it’s just changing the relationship. It recognizes the power that we all must be part of the change that we want to see.

Needing help, asking for help, accepting help

A picture containing sky, outdoor, standing, sunset. 2 people with umbrellaHealth Hats: Brilliant. So, I’m going to make a statement and then tear it apart. In my experience-And so, what am I talking about in my experience? Really, I’m talking about, in my experience, working with teams. So, meaning I work for a company or an organization, and I am a boss and have staff. So, this is not the situation you’re talking about, but I will talk about it anyway. And I found that when I started working with a new group, I was either blessed or not blessed to have changed jobs often. And whether it’s my attention span or whether I got laid off or fired, I moved around quite a bit, but every time I had new staff, I would say, how can I help you? What do you need? It was very difficult for them to answer that question. And part of that, I think, was a perceived power dynamic. I was the boss, and they weren’t used to bosses saying that. And that they would feel like their work was scut work and they couldn’t ask the boss to do scut work. And it would take six to eight months for them to get comfortable saying, this is what I need help with. So my question is, do you feel like the groups you’re working with readily know what help they need, or does it take them some time to think about what help we need?

Isabelle Barbour: They know what they need. They are working to respond to community needs. They are small but powerful leaders in their organizations with people power. They hear from the community what the community needs. So, they have their ear to the ground to hear what’s needed. And I also think part of what I’m hearing and what you say is that we have a lot of things in our culture and professional culture which make it hard and unsafe to be vulnerable. And when we ask for help, we’re being vulnerable. And so, the other piece of this for me is we’ve done a lot of work in our collaborative with making safe and brave spaces to be vulnerable and to not have all the answers. And I think that there needs to be more of that in organizations and other sectors because I think we’ll be stronger, and we’ll be more real, and we’ll be more grounded in what we need and how to do good work.

Health Hats: I love it.

Vulnerability, humility

Isabelle Barbour: But when you talked about being a boss, and you’re also an advocate, and you’ve spoken openly about having a chronic illness and how to be best served as someone with that illness. And I think that’s an example of what I’m talking about. There’s a vulnerability in having a need. And when we can articulate what our vulnerability is, we can help other people because we all have vulnerabilities. And I think there’s a lot of pressure not to be as truthful about those things.

Health Hats: It’s interesting because I am fortunate to come from a family with secrets. And growing up in a family with secrets, I became allergic to them. And so, I developed a style that has worked for me, where I wear my life on my sleeve, no secrets. And as you can imagine, sometimes it’s a little scary to be that way. It is dollars to donuts effective. It’s a gift that I turned out this way, to beat that. And as a matter of fact, I was working on my annual year-in-review episode yesterday. I’m full of myself and know I’m good at what I do. And some days, I think I’m as good as they come. And, but I also know that I don’t know the wake I leave, and I don’t know the wake meaning like a boat. The impact I have that I can’t see, and I need some friction between my brain and my mouth. And so I have a coach. And so, I taped a session for an hour, which was the year in review. What’s next? And I was talking to my wife about it this morning. You know that I’m going to publish this. And people who work with me will get a glimpse into this process of reflection that I go through to do the work that I do and the help I get from a coach. And hands down, as I said, it’s worth it. And just so people can see the value of getting help. The work we do as advocates and activists is tough, and it’s very political and political in the sense of how you get stuff done with lots of opinions and forces at play and stakeholders. That’s what I mean by political. And that it’s helpful to have somebody who appreciates you, knows you, and isn’t afraid to tell you the difficult things you need to hear

Isabelle Barbour: We all need plenty of opportunities for humility, right?

Health Hats: No kidding. Music’s that for me. I’m a musician. I’m good at what I do professionally and not so much in music. So that’s my humility. It’s great.

Earn respect. Practice being our best selves

Isabelle Barbour: I think I’ve always worked and tried to work with people who look different than me. And it comes from growing up, I think, in Cleveland Heights, Ohio, and having friends that didn’t look like me and felt comfortable with that. And I think as I’ve aged, especially with this latest move, I’m very conscious of how I present to people I deeply respect and care about who don’t look like me. And I am very aware of what people with my skin color have done and how they have hurt people. And I am not afraid to spend the time to earn it. Because I think that’s part if you’re going to care and you’re going to contribute, it’s that something you need to do and recognize you need to understand how you present in the world and how that’s maybe not reflective of all your insights, but so what? Like you, you must put in the work, and I feel grateful to have found some people who have let me do that with them. And one relationship was clear when I first met this person. Their look at me was like, who the fuck are you? I was like, who the fuck am I? So, putting in the time. And it’s just interesting now to text this person or have a phone call with them. And the tone is different. It’s being willing to be vulnerable, and that humility of I don’t assume that I’m a gift to you. And I know I look like a lot of painful things. White women are doing terrible things to this country right now in support of white men. It’s reflexivity. It’s like knowing where you are here, a map of where you are in the world. And I think that’s my daily humility of just, yeah, understanding that it takes repeated practice to be our best selves. We have a practice that every day, and we get so many opportunities every day to be our best selves or not. And that’s something I think about a lot as, just a human, as something I think about as a parent. And it also means we can always get better.

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Disparities in research

Health Hats: Yeah. We talked for half an hour. We can either continue because I don’t have something for the next half hour, or we could stop here and resume at another time. What’s your pleasure?

Isabelle Barbour: I’m okay talking for a bit longer. I feel like we’re talking about some important stuff. And I think it has implications for working in the community and grant-making. I’d love to hear more about the themes of humility for your work in terms of patient-centered care—and understanding that we see huge disparities along racial and ethnic lines around who gets treated and whose pain gets taken care of—all of it. And I’m interested in the work with PCORI and other ways of how that’s discussed of how that’s thought about. And, if it’s prioritized?

Leveraging privilege

Health Hats: Let me take a stab at some of that. In my work, I usually introduce myself as a two-legged, cisgender old white man of privilege. And I get invited to sit at many tables because I’m Health Hats, and people can check off many boxes by including me. When I got appointed to the board PCORI board, I felt elated. I wanted it, and I worked hard. I lobbied hard to get a seat. And then, when I got it, it was like I wouldn’t have selected myself if I were making these decisions. And so, I was on the phone with the same person I was with half an hour ago. I have friends and colleagues who live lives that I don’t. And whether that’s of color, of homelessness, or transition. And there are people that I can go to and say I’m struggling with something, and I can be completely uncensored and just lay it out in whatever words come out, and we will figure out what’s going on, and you know how to say it more sensitively and a different perspective. Anyway, and so when I got appointed, I talked to my friend Neely, who I, again, just spoke to a few minutes ago, to say that I’m very concerned about this. And I was thinking of, oh my God, should I just turn this down? Because I think they ought to appoint a more diverse board, she was like, oh God, Danny, are you kidding? You can say stuff that we can’t, and you’ll be heard, and you listen and whatever. She was very encouraging and continues to be a vital advisor to me in my work. And, okay, so that’s one thing then, and

Isabelle Barbour: I’m assuming that this person you’re talking about is a woman of color.

Health Hats: Yes. And then there’s okay. Now I, I, have this seat. Frequently with advocacy work, the work generates curiosity about the Kool-Aid, and PCORI is an organization that has drunk the Kool-Aid.

Isabelle Barbour: And this is poison Kool-Aid that was used on the ranch in

I already drank the Kool-Aid. Now what?

Health Hats: No, I’m talking about Kool-Aid, the Kool-Aid of health equity. Okay. I don’t have to talk anybody into anything. These are people I’m working with people who are eyeball deep in the issues of equity and research about equity. And they are ahead of me. But I am sitting in a position of power. I vote on millions of dollars of money. I help strategize where the organization is going to go. And it’s a very different problem. Like we’ve all drunk the Kool-Aid. Now, what do we do? Or I’m sitting in this seat of power. What do I do with it? Hence the coach. It’s a very different problem. How to spend this money? How do we recognize success? There are just so many ways to go. There are so many demands, so many needs. So, I enjoy the problem of how I leverage this seat that I sit in to advance issues of community engagement, health equity, public health, and support organizations, such as you’re talking about. Small organizations are not equipped to look for big bucks.

Isabelle Barbour: It takes so much capacity to apply for big bucks. It does. I don’t know. I don’t know specifically about the grants that PCORI offers.

Partnerships between communities and researchers

Health Hats: It takes a lot, it takes a lot. And so what about that? How do you build partnerships? So partnerships between communities and researchers. Yeah. Anyway, my sandbox is fascinating.

Isabelle Barbour: Have you found an answer on how to do that?

Health Hats: There are many answers. Organizations engaging in community research can use many solutions to create, catalog, and disseminate tools. Both mechanisms are for the researchers and the community organizations. Because it’s tough for everybody, partnerships are tough. There is nobody who’s got a leg up on being an effective partner unless maybe they’ve grown up in a family and life of partnerships. It’s hard work. While there are some general truths, there isn’t a roadmap that works for everybody, in my experience.

Isabelle Barbour: In my work for the state government in Oregon, I created a lot of partnerships. For several, I should say partnerships with other state agencies and public health with the understanding that we can’t reach our population health goals if we don’t have other sectors’ participation in supporting health in their spheres. So, for example, in education or transportation. And my experience with this is that partnerships, even at that high level, right? Like big departments, they’re based on relationships, like they’re based on relationships and trust. Between people and trust. Yes. And then, there must be buy-in at the highest levels to have the rest of the organization follow suit.

Health Hats: Yes. And yes. So those are absolutely part of what I had. I agree

Move at the Speed of Trust

Isabelle Barbour: Part of what I had to do was I think there are always people who are like more receptive, early adopters, and there has to be something in it for them like it has to meet their transportation goals around bike and pedestrian access or around education, chronic absenteeism, and thinking about like, why would somebody wants to partner with us is crucial. But then I don’t know, the, it moves forward with the speed of trust. And

Health Hats: that’s right. I’m with you on that. So, I would say there are fundamental truths, like trust and relationships, which you cannot partner without. Sure. And then from there, and there probably are a couple more, like you said, leadership buy-in, but I would also say that from there, it’s hyperlocal. It depends on who the organizations are. What their goals are, what they’re trying to accomplish. Their cultural context, their history, and their funding. And what I find fascinating is that the more profound and understanding you get about the communities you’re working with, the less homogenous they look themselves, and

Isabelle Barbour: Oh, yeah.

Health Hats: This idea of disparities goes as high as you want and as low as you want. And when I say low, two people in an office versus black and white, you know that there are issues up and down. Anyway

Maternal health

A picture containing two people, mom and doc, checking blood pressureIsabelle Barbour: When I think about patient-centered primary care I and equity, there’s a lot of different topics there, but one of the things that our collaborative has looked at and, we have a section of our collaborative called the black health collective has looked at black maternal mortality and infant mortality. Oh yeah. That’s one of these longstanding public health, healthcare, like horrors. And when my colleague who runs this piece, Stephanie Clark, talks with women about their experiences, it’s horrific.

Health Hats: It is horrific.

Isabelle Barbour: I just feel like this is how some things are obvious. They’re not complicated, and this is one of them. Having black doulas makes a huge difference in these outcomes. You were saying.

Health Hats: I had an episode a few months ago about disparities in maternal health. I’ll send you a link. Anyway alright.

Vulnerability and partnerships

Isabelle Barbour: How do you think showing vulnerability supports partnership development?

Health Hats: Oh, absolutely. It’s grease. I think it’s that vulnerability is grease to partnerships. As I was saying that I am blessed that I ended up with a personality of no secrets. You can’t have no secrets and not share your seamy side. Because what is vulnerability, but I don’t know, or I made a mistake, or I mean that vulnerability is letting it all hang out and having a sense of humor about foibles. And it’s a lot easier. I find that a wall might come down three inches if there are people who feel like the other is human.

TruthTeller Consulting

Isabelle Barbour: Yeah. And I do think that telling the truth is a big part of that. And that. I name my company Truth Teller Consulting because I feel like being able to be vulnerable and tell the truth. Especially when I started during the Trump administration, it felt like a radical act that centered a lot on what I think makes the world better and how we make a change authentically. So yeah, I hear some of that and what you’re saying.

Take a step back to reflect

Health Hats: How does this conversation serve you?

Isabelle Barbour: I think that it is helpful to talk with you as someone I don’t know. But who is open to talking to me about themes in our work related to vulnerability, partnership related to telling your truth, and being who you are? I think those are themes and conversations that need to happen in philanthropy. I think they’re huge themes in activist circles as well. With both your philanthropic and your activist hat on, I would imagine there’s a lot of synergy for you with those themes. Those themes are very important and personal to me regarding how I’ve developed and managed transition in my life. And I don’t think we often take the time and space to discuss these essential things. So, I appreciate having time and space with you to discuss these crucial things. How about you?

Keeping my ear to the ground

Health Hats: Bless you. Thank you. Yeah. Similar. For whatever reason, my work takes place on a national scale, and one of the challenges I think of being full of myself and having this stage/ playground is staying in touch and keeping my ear to the ground. So, one of the things in my role in PCORI before I was on the board. So, I’ve been on the board for more than a year. And before that, I was a reviewer of funding requests, and I did that for about seven or eight years, and I was co-chair of an advisory panel. And what I learned is that the people around the table had different experiences than mine. And they were all doing brilliant stuff that was important to me because it fed my fire. It was inspiring. And inspiration produces energy.

Managing with my brain as it is

Health Hats: And because it got my gray cells percolating differently than they had been percolating the minute before. Yeah. Which is invaluable. And I feel like my podcasting also serves that purpose. I find somebody’s doing some excellent work exciting work. I’m curious about it. Hey, let’s record a chat. And the way my brain works is that if I were to read a report you wrote, I would forget it after reading it. And I will forget this conversation once we’re done with it, but in the process of producing the podcast, I will hear it again and again, and it’ll go from whatever part of the brain I lost it from into a part of the brain that retains it. And I can then rediscover the pearls and incorporate what I’ve learned into my work. It’s just the way my brain is. And doing that, that’s one of the things that’s very cool to me about having MS, is it’s a disease of the nervous system and where it’s wonderful to create new pathways, and music is great because music is constantly creating new pathways. Still, I feel like this stuff also creates new pathways, and I can see and feel it happening. And then I end up with something different than what I started, which is a hoot.

Nourishing the brain

A picture containing walnuts looking like brainsIsabelle Barbour: I think that’s profound. And I relate to it as somebody who struggles with severe and persistent depression, and what depression does to the brain and affects the memory is pretty stunning. And I am pretty good and managed at this point, but I don’t always know from day to day. And I feel you might be able to relate to this: if the bottom holds. Suppose I can function well or not. And I think it does when we get to talk this way. It wakes up parts of the brain that are healthy. That respond to again if you and I were trying to have a super professional, like here our objectives, we’re going to talk about this meeting. I don’t think it would light up the brain the way it does for us to just talk about what makes the work real, nourishing, and good and what could make it better.

Try something else

Health Hats: Yeah. So, I that it’s great. When I think about my mission, what I’m doing, and what I’m trying to accomplish, I think a big part is learning what works. And a lot of learning what works is just trying stuff and adapting and then, oh, wow, this worked. Cool. Okay, I’m going to do more of that. Or this didn’t work, but now six months later, things are different. Let me try that again. Maybe it’ll work now. I have a progressive something going on, and I feel like my life is about adapting. There’s stuff that I want to do, God damn it, and there are periods where I just can’t. And while I will spend a few minutes feeling sorry for myself, I find that boring, and I would. I’m fortunate enough that I have this constant. Okay. Try something else. Do you know what I mean? It’s that didn’t work. That didn’t work. That’s okay. Try something else. And it’s a little frenetic sometimes, but it keeps it moving.

Isabelle Barbour: I think it’s hard to keep it moving, and I’m glad you have a way to do that. Cause I think yeah, just that feeling of this isn’t working and the panic. Yeah. That happens

Health Hats: Oh, totally. I’m pathologically optimistic during the day, and then at two in the morning, not so much.

Isabelle Barbour: I know all about that. 2:00 AM. I know all about it. It’s like, why?

Health Hats: Oh God. Yeah. Hey, this has been wonderful.

Isabelle Barbour: Yeah. Thank you so much.

Health Hats: And I would welcome the opportunity to say let’s do this again in three months and see what’s changed or yeah. What did we learn differently or whatever?

Isabelle Barbour: I don’t know. We’ve talked about some pretty enduring themes, but I think I’m happy to do that. Yeah. Great. Yeah, let’s have fun.

Health Hats: I know, and it will be a hoot to figure out

Isabelle Barbour: Thank you, Danny. I look forward to talking again. Yeah. Thanks so much for your time.


Do unto others. Be the change—each three simple words. Yet, you’re never there. You can’t check them off a list. Starting with my wife, I associate with people who help create the space for me to be my best self, treat others as I want to be treated, and be the change. I’m grateful to Isabelle Barbour for sharing her journey, philosophy, and challenges. How have you created space to be your best self in your advocacy? Share in the comments in the show notes. Thanks.


See the show notes, previous podcasts, and other resources through my website, Please subscribe and contribute. If you like it, share it. See you around the block.


Danny van Leeuwen

Patient/Caregiver activist: learn on the journey toward best health