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Share the Stories. Help the Helpers.

Stories are mirrors. It’s really about us. Our stories matter. Tell your story. As much as you can. Meld the stories together. Share the tragedy. Share the silver linings. Honor the caregivers. Help the helpers.

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Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Sponsored by Abridge

Thanks to these fine people who inspired me for this episode: Curtis Cates, Catherine Lynch, Amanda Blodgett, Dafna Gold Melchor, Geoff Racier, Fred Gutierrez, Ruth van Leeuwen, Leon van Leeuwen, the younger, Fatima Muhammed-Ighile, Mary Fam, and Catherine Munyua.

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Temporarily Able-Bodied People. We’re in This Together.

The Ch’i of Covid-19. Invincible.

Kind Re-Equilibration in the Age of Coronavirus

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. 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


In 1942, when my mom was 15, she went into hiding lest she be exterminated. She left her life, her identity, her history behind. What did hiding mean? In her words, Never go near a window, never talk above a whisper – if talking at all was safe. Not walk other than on tiptoe – if walking was safe at all.  And, of course, never go outside unless I had to change hiding places. And all that for three years. Which must have been unbelievably anguishing for a teenager. I say ‘must have been’ because my survival mechanism was denial, total and absolute – except for one outburst.

My mother was a fantastic piece of work. I get my pathological optimism, apocalyptic thinking honestly. I never heard from her about her experiences in hiding until I was in my twenties. She had stories she told about herself to us, her kids, stories she told about herself to her friends, and different stories about herself to herself. When I was about ten, my dad and grandmother started to tell stories about my mom and the holocaust. Although that’s probably true for most people, you can imagine all these stories were different and changed over time.

Introducing Susan Fantl Spivack

When I think stories, I conjure Susan Fantl Spivack, poet/storyteller/teaching artist, and community activist, taught creative writing and told traditional and her tales and oral histories most of her adult life to children, teens, and community.  You can find a link to her poetry chapbook, “The Power of Impossible Stories,” in the show notes.

Health Hats: Sue Fantl Spivack, it’s wonderful to see you on the screen. It’s good for my heart and soul to see you and talk to you.

Susan Fantl Spivack: Thank you very much. It’s good to see you because I’m working on telling stories and expecting questions. It’s been like getting ready for a storytelling performance, and though I have not been practicing any stories, it was the same. Oh my God, am I going to get it right?

Health Hats: The reason I wanted to talk to you is that I’ve been thinking more about storytelling than at any time in my life. Not just because I’m podcasting, in each episode I think about what’s the story I’m trying to tell in the episode. Also, what are the stories I’m trying to tell in the episode? And then what is the overall story I’m trying to tell by just podcasting in general? I used to think about the sharing of ideas as marketing. That I’m trying to market ideas. But that frame didn’t really work for other people because they thought of marketing as Fifth Avenue advertising. I’ve changed my frame to telling a story: combining the data and what it means and what’s happening – the facts and the story and trying to mix that. In my world, people are talking more and more about the story. That was before this last month with this Coronavirus and shelter at home explosion. Can you tell us briefly about your journey as a storyteller?

Susan Fantl Spivack: It started in 1974 when I was hired by Tim Holmes at the Cobleskill Public Library to be the person at the desk stamping out the books. This was wonderful. As a kid, I loved the thought of stamping out books. I had always loved libraries. Then he asked me, because I had a three-year-old, Jeremy, to do the story hour. He knew nada about kids. He was single. He was in his twenties. We were both in our twenties. So, I began reading books, but I went to some story hour instruction from the Mohawk Valley Library Association. I took some workshops, and I met my great friend, Jeannine Laverty, who was a wonderful storyteller. When I began going to her workshops, that was it. I saw her telling stories at Mine Kill State Park on a mosquito-y night. She was very pregnant. This was decades ago. She was telling this amazing story, and I thought I can do this. I had never thought I could act or do any public anything.  But it just gripped me. So, that was it. Once I began, I began telling more and more and not reading books so much in the story hours but telling them.

Doing heart’s work. Dough to knead. Storytelling with children

Health Hats: That was towards the end of the Vietnam time?

Susan Fantl Spivack: Yes. It was getting toward the end. But there’s been lots of wars since. Then being a writer, a poet, I began doing writing in the schools. I soon applied for Ladybird Johnson’s 1976 America, the Beautiful grant, and bought cushions that they’re still using in the library for the story hours. I got this idea that you can get money to do the heart’s work. I found a way to get funding through Poets&Writers and a local group upstate to do that in schools teaching kids to write poetry. I was sharing poems, but when I began to tell a story at the beginning of the workshop, I felt there was dough to knead, there were images in the story. There was a way to make meaning and vocabulary and a discussion of a different culture like Iroquois, or whatever the teachers asked for, and I didn’t have to say anything about that necessarily. It would get into the poems and then pitch them in ways. You were always trying to get the kids to use descriptive language, speak from their hearts, all that stuff. These stories helped them do that. I realized the power of it. It went in so smoothly, and then they could give back so much more easily. I felt I was giving before I was getting. As a teacher, you’re often feeling like you’re trying to get.

Health Hats: If I understand, the poetry kind of opened their heart and then out came the…

Susan Fantl Spivack: No.

Health Hats: The story opened their heart. And then

Susan Fantl Spivack: out came the poems.

Oral histories – harm and peace

Susan Fantl Spivack: So, when we told oral histories of the Vietnam war, I began to do more oral histories. I did quite a few of those in middle and high schools especially about the civil rights movement and the Vietnam war. First, three of us did the Good War about World War Two. We would always have a poetry writing workshop after our performance. Because we were trying to get people to digest what had happened. Process and say, ‘Here’s what it does for me. Here’s what it pulls out of me.’ I thought of all that storytelling when you said, ‘let’s look at grief and trauma stuff and storytelling.’ I’ve always been glued to trauma in human experience – what makes people harm each other, hate each other, kill each other? What are paths to peace through our easy way to fall into fear and hatred in the face of adversity and difficulty?

Health Hats: So, telling the stories help people to look at that from less fear?

Susan Fantl Spivack: I believe so. I feel like there’s no better way to learn history than through the stories of the individuals who lived it. They’re not doing jargon. They’re not doing terminology.

Health Hats: It’s not patriotism.

Susan Fantl Spivack: No. Although there was plenty of patriotism, it was how it expressed itself through their lives. So, we three women, Jeannine Laverty and Becky Holder and me, each interviewed two vets at least. This was 1992. To say we’re three women, is that ridiculous? They said, ‘No, no one’s talking about it anymore.’ A middle school teacher who was friends with Becky said, ‘to my kids, the Civil War and the Vietnam War are equally remote.’ We were trying to make it come alive and do it without obscenity, without drugs, without really black humor. When we did it for vets at the New York State Vietnam Veterans Memorial, we were trembling. My knees were knocking together. That’s when I understood your knees do knock together when you’re scared. We each had our own bad fantasy of some guy standing up and saying, ‘You got it all wrong, you’re betraying us.’ But no, it didn’t happen. Half storytelling people were in that audience and half vets. There were maybe 80 people there. I’m having trouble remembering. First, it was silence. We thought, Oh my God. Then vets came up to us; some were crying. Oh God, we were thinking, what are we doing to him now? They began telling us their stories. They often would get mixed up about which one of us said something because it was a collage of different voices for 45 minutes, 50 minutes. They’d point to a different one of us to say, ‘when you said that this is what happened to me.’ We realized, oh man, it was ideal. We became invisible. The stories flowed through us. We could do that because we felt so connected to the material.

Health Hats: That’s profound.

Susan Fantl Spivack: It was amazing. Of all the storytelling I did, it was the most profound. The gift to me, teaching me, how much we need stories. So many of them told us, ‘you lifted a burden that’s been on me for 25 years.’ You only need one person coming up to you to say that, to make the whole thing worth it.

Crafting stories

Health Hats: Many of my listeners are fascinated with the craft of storytelling. There’s a traditional story arc. Sometimes I wonder, is that real? Can you say more about crafting stories?

Susan Fantl Spivack: Let me go back a little to what I was learning when I first began learning storytelling and telling them to three-year-olds. I discovered the same deep, incredible richness and meaning in those that are good for adults. Often, I’d be in a time of crisis in my life. I told those preschool stories from the 70s to about 2005 in the library, then I retired. I would do ten weeks in a row, fall, and spring. It didn’t matter what was going on in my life. My mother was dying at one-point. Traumas were happening. I had to show up and be the story lady. I read an article about some research on preschool kids and the stories they tell, recording all their stories, and finding out what’s in preschool kids’ brains about the arc of a story. They concluded that our brains are wired to understand things with the template of a story in mind and stories like nursery rhymes or Row, row, row your boat gently down the stream; Merrily, merrily, merrily, life is but a dream. I played that on the recorder every time I did a story hour, and we’d sing it together because it’s a little tiny kind of story. There is a beginning. There’s a journey. There’s a reaching, there’s often a call to choose some sort of action, some kind of entering the unknown, a tension, a conflict—a search for the magic whatever, all sorts of adventures. Then you achieve it, or you don’t, and you return changed from entering the unknown and going through it, you return. It’s a circle, not necessarily to the original home, but to a home place, but often to the original home. Transformed in some way. And that’s Joseph Campbell stuff. I’ll send you the link I just found of someone teaching Joseph Campbell’s The Hero’s Journey. There are all kinds of refusing the call, or there are all kinds of ways you play that. I haven’t had a chance to think about how our program ended up. We were laborious. We did it in timewise beginning with getting inducted or drafted, basic training, first experiences when you show up. We did it timewise through the experience getting home. And that had its own natural arc. But I bet if I went back and looked at the pieces we picked for all of those stages at the beginning, a guy would say, ‘we got off the plane and they were shooting at us. They didn’t even know me. What did I do to them? They were shooting at us.’ That was one kind of naivete. We would put in things we heard repeated, we read hundreds of oral histories, many books that we heard repeated over and over again is how we decided who gets in.

Health Hats: You’re saying, yes, there is an arc. The arc is of a story is common, whether you’re a child or an adult.  It’s how people’s brains take in information.

Susan Fantl Spivack: And how they most readily remember stuff.

Health Hats: Okay. Oh, say more about that.

Susan Fantl Spivack: If you’ve got stories to pin the hard facts – just the facts, ma’am – you remember them more. You remember them better. You understand why they are the facts. Because you’ve heard people’s stories who were living those facts.

Governor Cuomo, Storyteller

Health Hats: This is apropos of absolutely nothing, but maybe it is. I’ve been listening lately to Governor Cuomo.

Susan Fantl Spivack: Me too.

Health Hats: I think on so many levels, it’s fascinating to listen to him, not just because he’s clearly a leader. He’s leading a state, also quite the storyteller.

Susan Fantl Spivack: Yes.

Health Hats: I can see that he or whoever writes for him has an arc to his stories, the way he’s trying to communicate. In this crazy time, it’s an overload. I need so many different parts of myself to be engaged, but not too much. Otherwise, I just freak out.

Susan Fantl Spivack: Me too.

Health Hats: He goes from, this is what’s up to this is what I want to try to communicate. These are the facts, as I know them, and this is what that says to me. This is how I interpret it, which may or may not be correct. Then this is my opinion about it, which is my opinion. Then some inspiration so that we can keep going. It’s artful.

Susan Fantl Spivack: It is. And brilliant, especially, I heard him driving, and he was saying, this is on me. I know a lot of you are going to be suffering, losing a job – work, losing pay. All this stuff is happening. That’s hard. Don’t blame your local politicians, your county politicians. Don’t blame them. Put it on me. I take responsibility. I feel like that was so powerful. So powerful for me to hear.

Health Hats: Am I reading that right that he is telling a story each hour?

Susan Fantl Spivack: I don’t hear him every day. Okay. I tend to listen to the radio when I’m driving, and I’ve been driving less and less, but I get an email every day with a summary of what he said, and I’ve thought I ought to listen to him again.

Health Hats: It’s powerful.

Susan Fantl Spivack: He’s finding the through-line.  There’s a through-line of what’s the rising, what’s the thing I want you to get strongly? What’s the challenge we’re facing? What do we have to summit to face it? Then he ends the thing with a suggestion for our lightness. You can go for a virtual tour of the orchids at the Botanical Garden in Brooklyn. There’s always something like that at the end.

Health Hats: Cuomo has an acute sense of his audience. His audience is 90% – no, like 80% the State of New York, 10% the country, and 10% Trump.

Susan Fantl Spivack: That could be.

Health Hats: I made that up, but you know what I’m saying.

Susan Fantl Spivack: I’ve had complicated feelings about him. Up till now, I didn’t know that he was capable of this. He’s risen way high in my estimation from my former opinion. Let’s put it that way.

The story arc – so what?

Health Hats: In my consulting work, my podcasting work, my virtual groups, I think more and more about the audience and the message. What do I want people to come away with? I have this wealth of stories, little stories. Like when I’m telling a story about expertise or I want to make a point about expertise. I tell the story about my grandson, Leon. When he was six, he and his dad, Simon, were buried in dinosaurs and they would read adult books about dinosaurs. One day I was kidding with Leon, and I said, ‘your Aunt Kate is an herbivore.’ He goes, ‘Oh Opa, but she’s not. She’s an omnivore.’ He’s six. And I said, ‘no, she’s a vegetarian.’ And he said, ‘Opa, she can eat meat.’ I thought, ‘okay, so that was expertise. He knew more than me, so he was the expert.’ That’s been such a useful little story to tell when I’m trying to make a point about expertise.

Susan Fantl Spivack: Right.

Health Hats: Back where I was saying that in my podcasting, I think that I’m cobbling together little stories to tell a big story. That is an example of a bit of a story. I’ve never really thought about the story arc of that little Leon-dinosaur story.  It works great.

Fairy tales

Susan Fantl Spivack: Once you get that model into your head. I told folk tales for so many years. In college, I was a  English lit major, and I couldn’t stand it. I wanted more kinds of different stories from more places. That arc in my life, it’s natural that I ended up telling stories from all over the world of all kinds because that’s where my focus was. So that model’s in you. Then if you read folktales, the common ones, Cinderella, are in many different cultures. I don’t know how many hundreds of variants there are. The youngest son is going off on a quest. He’s got older brothers, also. They’re messing him up. No one thinks he could do anything, but he’s the one that did.

Health Hats: Little Red Riding Hood, Hansel and Gretel, all of these universal stories.

Susan Fantl Spivack: All of those. They start showing up in your brain if you’re immersed in a story. It kind of feels mechanical to me to try to put that in as you’re developing the story. It’s helpful when you got more of it together to say, how does it look, and wasn’t that good? Then what is wrong with it here or here? It needs that moment of climax. There’s a turning point in the story. We used to have exercises from my friend, Jeannine, where’s the turning point in your story? Where’s the beginning? Where’s the challenge? Where’s the turning point? Where’s the resolution? Where did you start? Where did you end up?


Health Hats: When I think storytelling, you’re the vision that comes up in my brain, but I think in my heart about you is that you’re action-oriented. You have a sense of social justice. That’s the nut. You do it as a storyteller.

Susan Fantl Spivack: I did it as a storyteller. I was so happy. My heart’s work for decades, but in retirement, I’m trying to make writing be the same big picture thing. Of course, it is always shoved to one side, always, always, always.  It’s a way of storytelling for me. I recently put together a small collection of poems that I wrote in the 90s. It’s called The Handbook of Suffering. I’ll send you a copy. It has maybe nine, ten poems in this little ledger. I did it with my friend Paul Lamar, who used to teach English at the college here. He’s a writer. We were commiserating at a reading how we got all this writing and we’re in our seventies and what are we going to do with it? Leave it unfinished? So, then I finished it and I haven’t looked at it for about two or three months because of the virus, because I went to California in February. I opened the notebook and here’s a poem I stuck in there thinking it was possibly the last lesson. I thought it was done. I thought I had a last lesson. I was blown away by it and I thought I’ve got to get back to writing. So, I thank you because I wouldn’t have looked today. It’s taking the story of Rebecca in Torah. A lot of my stories, poetry in recent years has been prayers, Psalms, picking up stories from Torah and putting them into a poem.  It’s about Rebecca going to the well to water her sheep. She meets the messenger from Abraham who wants to find a wife from his home place so that his son, Isaac, will not marry a Canaanite, an alien group. She gave water to the messenger whose prayer had been, ‘may I meet someone and may she do this, this, and this for me.’ And then she precisely does all those things. And she gave him the water and said, ‘let me water your camels.’ He had quite a few with him with gifts for the dowry for whoever he found. According to the rabbis in their Midrash, the stories that you add to Torah, of course, she’s the right person because she said, ‘yes, please take some water and did that.’ So, I go through that story and the story of Akedah to Abraham being told to sacrifice Isaac.  And Sarah was never seen in Torah. She never appears with Abraham again. You just hear she died, and she wasn’t at home when she died. Torah’s stories can be disjointed. It can have gaps. It’s got white spaces, and Midrash fills in the white space with more stories. It was sometimes said that she heard via Satan or Isaac, depending on the story, what Abraham was about to do. And Satan said he killed your son, and she emitted a shriek that shook the world and was the cry of the shofar that you hear on Yom Kippur and Rosh Hashanah. The Ram’s horn cry because a Ram was sacrificed by Abraham instead of Isaac when God said, or an angel said, ‘don’t touch your son.’ So, you take all that; it’s like a dysfunctional family. This is like soap opera, psychodrama. You can play it so many ways those complex stories. That’s one of the reasons I’ve been glued to Torah for a lot of years. I love those stories. Some of the Rabbis say what Sarah was conveying to God with that shriek and dropping dead was, ‘God, you went too far. There’s such a thing as the limit to suffering. You can’t do that to us. You can’t. Pushed too far.’ I have to go back and look at her. I don’t know that God indicated that he heard that, but I’ll send you this poem, too.  I’m telling a story and I have not found a public way, I haven’t self-published this little book, the Handbook of Suffering. I haven’t figured out what I’m going to do with it, but there’s this great need for me to do those things. It’s an unfinished business feeling. I’m 76. And of course, this virus is saying, ‘how much time do you think you have left lady? You could be dead in three days.’

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Staying calm for the kids

Health Hats: Here we are as a community, as a nation, as a world, going through this apocalyptic time.  How do you think people can use storytelling to help them navigate? Not just navigate for themselves. I was on a call this morning with a friend of mine who was working very hard to stay calm for her kids. While she was telling me about this staying calm for her kids, I’m thinking about all the work that that was taking for her to remain calm. She’s a storyteller. She teaches Mandarin and tells stories in Mandarin for young kids. I think there must be a way to use storytelling so as not to have to work so hard to be calm in this not calm time. I don’t know that I’m making sense.

Susan Fantl Spivack: You are. Telling stories to your kids could contain some mirror. Stories are mirrors. The characters are animals to make it a little easier. It’s really about us, always. Often, they’re Kings and Queens and princes and princesses. Same deal. There are also stories that are about orphans and abused kids—lots of them. Cinderella, look at that one. Those kinds of stories can help kids. Going to folktales, going to fairy tales, going to some of the classic types of stories in children’s literature will help kids, will help you get calm as you read them to your kids, or talk about them with your kids or help your kid calm down. Kids know their parents are scared. They always know. They know what’s going on with us. We can try to hide it. Forget it.

PTSD, recovery, and storytelling

Health Hats: I’m with you on that. This has been a rich day. I was on another call today and I’ve been editing a podcast episode for publication this week, a conversation with my acupuncturist about Chinese medicine. I texted her yesterday and said, ‘I’m working on this, and I need to talk to you about Chinese medicine and managing today, just like I’m talking to you about storytelling and managing today. She had some excellent suggestions, but she ended with, ‘you should come back to me when we’re somewhat through this ordeal because the PTSD that individuals and communities and States and countries are going to feel is enormous. Chinese medicine can help with that. You started this conversation with PTSD of the Vietnam, Great War vet. We’re going to need this not just today to find our way through this insanity, but also to recover.

Susan Fantl Spivack: Yes. We’ve always needed it. We always need it. There can be the wrong kinds of stories that spread hate or judgment about groups or misinformation. I was listening this week to Krista Tippet’s On Being. She was interviewing Rebecca Solnit, who’s a feminist and economic environmental sustainability activist. She’s written great books. She wrote a book called Falling Together. This was a 2016 interview, but Krista played it this week because we needed it again. We need good stories. We need better stories than we often get, especially from the media and from experts in and out who are analysts of what’s going on. She used what happened in Katrina in 2005. She interviewed people and heard their stories. There’s a whole lot of that in her book. She wants better stories, more openness, better questions. ‘All these things feel like they give us tools that are a little more commensurate with the amazing possibilities and the terrible realities that we face.’ That was pulled from the middle of the interview. In the beginning, she said, ‘I’m interested in what are the stories we tell, and what are their consequences? Are there other ways of telling different stories that don’t get mentioned?’ And she goes on to talk about the stories that were told about the people of New Orleans, poor African American, many of them mixed race, many accused of being horrendously violent to one another. So, they were locked into the city and not provided a means of escape. You couldn’t even walk over the bridge because the suburb on the other side met them with police cars and guns. They had to go back and die. That was the consequence of that time in our country, in that place. There were stories we don’t hear, Krista said, ‘which were life-giving. In the immediate aftermath, more than 200,000 people invited the displaced strangers into their homes through a group called’ We must start rejecting the canned narratives we’re told. She doesn’t say canned; she’s referring to all the stuff that was not true. We can tell our own stories, becoming the storyteller rather than the person who’s told what to do. It’s helping people realize that their story matters most. You know yourself, you know your truth, and if you tell that without getting into the stereotypical language and memes of the current moment, you will reach a point of being able to connect to someone who you might think was very different from you. There’s a media project going on now, by Eve Perlman. I’ll try to look for them where they’ve gotten together groups who are very different from one another in these Trump years to talk to each other and become friends. They have managed it, and it’s quite astonishing how they’ve changed how they think and feel about a lot of things.

Health Hats: This is great. Thank you so much.

Susan Fantl Spivack: My pleasure. I hope this is what you wanted.

Health Hats: This is just fabulous; people are going to eat this up.

Susan Fantl Spivack: Well, I hope so. That’s wonderful to hear.


The day my son died, we traveled from the Albany area to Buffalo.  He died in his apartment shared with his girlfriend.  We all gathered at his girlfriend’s parent’s house having traveled from all over the country. We spent a couple of hours each recounting our stories from the past few days, trying to maintain chronology. ‘I talked to Mike at 8:30.’ ‘At 9:00 I was coming home from the grocery store.’ ‘I got the call at 10:15.’ ‘I got it at 10:30.’ We cried a lot. The past year had been difficult for everyone. We were exhausted and traumatized by the slow felling of this big sweet 26-year-old man. We created a shared detailed uplifting emotional story. The world now spins at the beginning of a cataclysmic crisis. I see the fraying of nerves, the heightened anxiety, the fear, and the anger. It’s all building. Let’s connect and chronical together. Listen to the stories our children, our family, and our virtual neighbors tell. Tell your story. As much as you can. Meld the stories together. Share the tragedy. Share the silver linings. Honor the caregivers. Help the helpers.

Danny van Leeuwen

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