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We are not our behaviors, diagnoses, or symptoms, but tellers of our many stories & owners of our health. Wisdom from fearless master medical coach, Shiri ben Arzi
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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)
Introducing Shiri ben Arzi 01:51. 1
Bitchy, Pregnant, with Pulmonary Hypertension. What Could Go Right? 04:12. 2
Person, Advocate, Professional in the Same Teacup 08:09. 3
Relationship Builder Marrying Personal Story and Clinical Picture 11:36. 3
Programs, Habits, Diagnoses, Behaviors!? 14:47. 4
Loving Myself and My Ups and Downs 23:21. 6
Which Story, Whose Mouth, What Ears? 24:45. 6
Families of Secrets and No Secrets 27:34. 7
Tough Questions: What Do You Want from Life? 30:25. 8
Tough Questions: Conflicts with the System? 35:03. 9
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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.
Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger
Web and Social Media Coach Kayla Nelson @lifeoflesion
Inspiration from Talya Miron-Shatz, Dafna Gold Melchior, Fred Gutiérrez, Amanda Hsiung Blodgett, Catherine Lynch, Geoff Racier, Grace Cordovana, Jan Oldenburg
Serendipity from Susan Fantl Spivack
LOVE AFTER LOVE by Derek Walcott
The time will come
when, with elation,
you will greet yourself arriving
at your own door, in your own mirror,
and each will smile at the other’s welcome,
and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you
all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,
the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.
Listen & Read: https://www.
Dafna Gold Melchior’s Let’s Clarify It
Related podcasts and blogs
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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My mother had eyes in the back of her head. I heard that and thought about it throughout childhood. I’m not a mother. I don’t have eyes in the back of my head. I do know that I am a force, and I create a wake. Think a speedboat, a ship, with that V of water behind it. I’m aware that I have a wake. Sometimes, I can pause during my headlong forward movement and look back and check my wake. What kind of impact did I have? Was it the intended impact or unexpected? A kind, warm reflection of my wake from trusted friends, colleagues, coaches, mentors is priceless. That’s reactive, after the fact.
Proactively, looking forward, I’m a change agent, an activist, a reformer, and a patient. No matter how full of myself I can become, I seldom lose sight of the need for coaching. Coaching to clarify strategy, consider and prioritize tactics, and then to look back and study the wake I created, the impact I had. I view my health team as coaches with expertise greater than mine for specific topics and skills. I’m the boss, the CEO of my health, but I definitely need coaches.
Introducing Shiri ben Arzi
I noticed today’s guest, Shiri ben Arzi, in the participant list while attending an online webinar about making clinical decisions hosted by a mutual friend, Talya Miron-Shatz, a researcher at Ono Academic College in Tel Aviv. I saw Siri’s name and looked her up on LinkedIn and connected. She had a medical coaching practice. We communicated on LinkedIn at first and decided to interview each other. Neither of us is shy. Shiri’s vision is to facilitate change in the medical system through Medical Coaching and communicational skills, adherence, resilience and Medical leadership trainings. She is the recipient of ICF Ireland’s Medical Coach award of 2016 and Coach Supervisor award of 2017.
Health Hats: Would you please introduce yourself? I’m so glad you’re here.
Shiri ben Arzi: I’m so glad to be here. My name is Siri ben Arzi. I was born in Israel, raised in Liberia, and then schlepped back to Israel, so I can say I’m an Israeli. I have been living with a chronic condition called pulmonary hypertension for over 20 years. In addition, I have been a medical coach since 2008.
Bitchy, Pregnant, with Pulmonary Hypertension. What Could Go Right?
Health Hats: Wow. That’s a long time. None of my business, you do not have to answer, how was being pregnant and having pulmonary hypertension? That sounds tough.
Shiri ben Arzi: It was, and it wasn’t. I have to rewind and say something about my attitude, the kind of patient that I am. I am a bitchy, fuck you, patient.
Health Hats: Meaning?
Shiri ben Arzi: I have an attitude. You don’t get to tell me what to do. We will have a conversation about that. And then I’m going to let you know what I think, and then we’re going to do it together because I am not your patient. You and I are members of the same team. Basically, I’m your boss. I hired you. So that’s the attitude. At some point, I decided that I was going to be a mother. I just knew that inside. For me, there is a very distinct experience where I know something about myself. And when I feel it in my body, it’s the certainty. And the first thing I do is some research, just make sure that I’m not completely out there, in Lala land. And once I do my research, and that feeling becomes stronger, I will fight for it. So, I had this feeling about pregnancy. I knew I wanted to be a mother. I knew I could be a mother. Then I came to my doctor and said, I want to get pregnant. And he looked at me and said, ‘Nope.’ And I said that’s not acceptable. Here’s what we’re going to do. I’m going to do some research, and then you and I will have another conversation. It’s not going to be a conversation about can I, or am I allowed to get pregnant, but how we’re going to approach this. Then I saw an American doctor, and I have to say something about the American doctors. I know they are very polite and proper. But you know what they feel. I saw this other doctor, and I said, I want to get pregnant. And he had this huge smile, and he was like, yeah. And I could see in his eyes, it was like, Oh my God, you’re a crazy woman. So, I did a lot of research. I contacted a lot of doctors around the world. The statistics were not good. I was aware of that.
I read the literature, and then I came back to my doctor and said, okay, I get why you said no. However, what needs to happen for you to say, yes, let’s look into that? And he said, okay, I need you to be stable for longer. I need us to have this conversation in another year. I need you to show these parameters. I need this and this. I said, okay, I’m on it. A year later, I came back. I said, okay, let’s have this conversation again. So, to make a long story short, at some point, he said yes, with a list of conditions, which made sense. I said, okay, I’m going to work with that. That’s how we started. It was crazy. Everybody around me, my husband at the time, my parents, my doctor, everybody was pretty stressed, but I had confidence.
Health Hats: I love it. Good for you. Good for you. And I can picture it.
Shiri ben Arzi: I have to tell you, 38 weeks into the pregnancy, I lost my confidence, and I knew something was wrong. And that’s when I hospitalized myself, and I was not wrong. I was right. Then I hospitalized myself.
Person, Advocate, Professional in the Same Teacup
Health Hats: When you and I communicated before, you talked about holding the identity and experience of being a health consumer/patient and a professional healthcare practitioner’s identity and experience together. You seem like you’re a strong advocate for yourself. You bring that to your work as a coach. I was thinking about that question. Being a nurse for 45 years hasn’t done anything for me as a patient or a caregiver. I have the language down. I’m the Rosetta Stone of healthcare, and I can speak at any level. That’s the Health Hats business I have. So, I have that gift. But I don’t study about myself almost at all. I’m more of a passive asserter in the sense that if I don’t like the physician, I just leave. I’ll find somebody else. Do you know what I mean? I know I’m not a fighter. On the other hand, I am an advocate and an activist system-wide. But you sound like your professional, and personal selves live together.
Shiri ben Arzi: They live side by side. It’s important for me when I am putting on my coaching hat. It’s essential for me to self-manage because what works for me might not work for my client. It’s not about I did this that way, and this is how I dealt with a similar situation. Let’s learn from that. That’s not professional.
Health Hats: I’m totally with you on that. I’ve said to people, your experience and a buck fifty will buy a Pepsi. That experience is really important. But it’s not sufficient.
Shiri ben Arzi: No, it’s not. When I created the medical coaching model, it was important for me to put together a methodology that could hold a process that didn’t need my experience at all, didn’t even need me.
Health Hats: Okay.
Shiri ben Arzi: However, there are certain clients that I do not coach because I know self-managing is going to be almost impossible. I don’t coach people with pulmonary hypertension. I will sit and have a cup of coffee with them at no charge. I will tell them about my experience. I will be very coach-like with them. Also, because in Israel, my story has been in the magazines, I participated in TV shows and stuff like that, so people know my story.
Relationship Builder Marrying Personal Story and Clinical Picture
What kind of patient are you? When you meet the system, what happens to you?
Health Hats: I’m a relationship builder. When you say the system, you mean the medical system? I’m a relationship builder. I look for professionals on my team that appreciate me and my quirks and are accessible.
You asked a question about where the illness narrative meets the clinical narrative. I liked that question because the clinicians that I stick with are the ones that marry the story and the clinical. They’re curious about the story, and they’re good at pulling out those stories. For example, and listeners, if I keep this in and don’t edit it out, my first neurologist was very interested that I play the baritone saxophone. He said you have intercostal involvement, chest muscles, and playing this big horn. You have to breathe deeply. You have dexterity issues, and you’re playing this big horn with heavy keys. It’s creating new pathways in your brain, and it’s good for your soul. He said I got nothing compared to that. Absolutely nothing. I love that. He asks, do you still play the saxophone? We talk about it every time I see him. I liked that he was curious about me and took this thing that I love to do and made it into an anchor for the decisions we need to make about medication and treatment and whatever. Where I think I’m a unique patient is not in the doctor’s office. It’s that I take care of myself. I have a program, and I stick with it, and I’ve stuck with it for 12 years. It gets a tune-up depending on where I am as I have a progressive illness. So, things change. They change very slowly, thank goodness, but they change. Every once in a while, my program needs a tune-up. But I do the work.
Programs, Habits, Diagnoses, Behaviors!?
Shiri ben Arzi: Let me ask you something. How did you first start creating this program, the idea of creating a program?
Health Hats: I don’t know. I’ve always known, as a nurse, that habits are keys to health. The hardest thing about health is habits. My early nursing was in-home care and physical rehabilitation. I learned that the most crucial habit a human being can have is to move. You’ve got to move. You just got to move. I worked with people with spinal cord injuries, strokes, and severe arthritis stuck at home and didn’t move. So, here I was, somebody who knew, my God, something is wrong. My abilities took a hit. First slowly took a hit and then more quickly took a hit. Maybe it was more quickly just because I realized that something was wrong. When it was defined, I was introduced to an incredible physical therapist and a fantastic chiropractor. The physical therapist started me on a program of balance and strengthening. The chiropractor helped me get to do it every other day. Not every day; every day is just too much. I feel like every other day, I have a vacation. So, that’s possible. I have 3,500 steps a day minimum. I actually average about 4,400, but I get the 3,500 minimum. Then I’m a two-cane guy and an electric wheelchair beyond that. I just do that because it just feels so good to walk, and I know how important mobility is. Diet is a more problematic habit for me. I guess I’m a habitual kind of guy. I’ve been podcasting for – the one I’m doing this week is number 117. I’ve been doing a weekly something before that – blogging. I think I’m on 486. I’m good at habits.
Shiri ben Arzi: I think we all have habits. Or habitual creatures some more, some less, but yeah.
Health Hats: How much of your coaching is about habits?
Shiri ben Arzi: A lot of it is about habits and behaviors. I would say that everything is about behaviors. I look at internal behaviors and external behaviors, not just the external behaviors of going, coming, lifting, whatever, eating; from a medical coaching perspective, everything is a behavior, and emotion is an internal behavior. Thought processes – even an illness – everything is a behavior. So, when we look at behaviors, and we want to change the behavior, I invite people to look at the behavior’s positive intention. Honestly, I don’t think that people have a good side and a bad side. There is this the story about a grandfather telling his grandchild about the white Wolf, a good Wolf, and the black Wolf, which is a bad Wolf – that’s a whole other issue, black and white, good and bad. The wolves are constantly fighting inside us. The grandson asked which Wolf wins, and the grandfather says the Wolf that we feed more. So, I don’t feel that we have a good Wolf and a bad Wolf inside us because I love wolves. We have a good Wolf, and then we might have some misguided wolves, but they originally are good wolves. Even if we have a behavior that’s not serving us, underneath that behavior, the origin is positive. There’s something good that we want for ourselves. Sometimes it’s more conscious. Sometimes it’s less. If we’re going to replace a behavior, we need to honor that original, positive intention, or else the change will not be sustainable.
Health Hats: Say that again about replacing a behavior.
Shiri ben Arzi: It’s like I have a behavior. I want the new behavior to serve the same positive intention as the old behavior.
Health Hats: If you have an example.
Shiri ben Arzi: Yes. I’m going to give an example from a client that I coached many years ago, and I’m changing many details here. This young person had a behavior that every time this young person felt better with the medication, they would go and do something that would cause them to faint. Some kind of behavior that did not make sense. When we spoke, the client said to me, listen, I know that this is causing damage. The client’s doctor called me and said, this isn’t possible. You need to speak with the client. But when we investigated this behavior, we realized that the positive intention underneath it was love. Isn’t that amazing? Because this client was very lonely. Every time this client felt better, all the family members would go about their business. Thank God the client is feeling better. We don’t have to take care of the client anymore. So that behavior, which causes the client to faint, brought all the family back and they could feel loved, and they could love back. We’re not lonely anymore. Once this client figured it out, I said, okay, so this is actually about love. Can we find another behavior that will allow you to love and be loved? And this client started volunteering at an animal shelter. Now, the real mindblower is that once this client started volunteering, they stop the old behavior. Why? Because the need for love was honored.
Health Hats: Wow. That’s profound.
Shiri ben Arzi: They didn’t get to be wrong. Because we are not our behaviors. We have behaviors.
Health Hats: Yes. That’s an exciting story. I like that. How has it helped you?
Shiri ben Arzi: What, the whole behavioral thing? Understanding that I am not my behaviors helped me, so I can look at behaviors and ask, are they serving me? And if they’re not, then I need to change them. If I look at my illnesses as a behavior, and I am not my illness, then I can define health differently. So, from my perspective, health is not the absence of illness. Health is a state of mind. When I can look in the mirror, and I see Shiri, I see the wholeness of Shiri. She has pulmonary hypertension, but she also has a child. She’s a mother, and she’s a partner. She’s all of that.
Health Hats: And a businessperson.
Shiri ben Arzi: A businessperson, yes. A lot of things. I have an illness. I am not my illness. Then that for me is, that’s how it serves me.
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Loving Myself and My Ups and Downs
Health Hats: I come at this differently. The way I come at it is that I love myself. I love myself. Now, I don’t love everything I do. I find having multiple sclerosis to be seriously annoying. But loving myself is an essential hook for me – to stay in touch with that. What are the things I love about myself? I want to keep loving myself. I feel like crap when I don’t love myself. I think about it because I am pathologically optimistic, and when I’m not, my symptoms are worse. This pathological optimism has something to do with love for myself.
Shiri ben Arzi: Definitely.
Health Hats: When I don’t because we’re human and we all have ups and downs. That’s the human condition – up and down. That’s just the way it is. I’m fortunate that my ups and downs are pretty high. But I still have ups and downs. And when I’m down, my symptoms are worse. They just are.
Shiri ben Arzi: The same for me. Of course. That makes so much sense.
Which Story, Whose Mouth, What Ears?
Health Hats: What’s the story that we’re trying to tell here? I have lovely conversations with people, and then I have to think about the story after it’s over. Once it’s done, I have forgotten it completely. I’m very fortunate that it’s recorded and that I have an excellent transcription app. I read it and listened to it many times. But before I can produce an episode, I have to know the story I want to tell. This conversation, you and I, is your story. So, what’s the story? Like what story do you want people to hear, come away with from all these recorded words?
Shiri ben Arzi: I think that from my perspective, the story is not about the story. It’s about the storyteller.
Health Hats: Okay. Yes?
Shiri ben Arzi: If there is one thing I’d like people to take away is the invitation for them to own the story. They become the storytellers and know their own story, and do whatever combination they want between the illness narrative and the clinical narrative because the story has so many aspects. You can tell it in so many ways, and there’s no wrong aspect, right? I think it’s a tapestry. There might be an incomplete aspect, and then you can invite additional pieces. It’s like voices in a system, and all of these voices together create the story. I think there’s one person that could integrate all of these pieces. That’s the owner of the story. The owner of the story is the patient. When we talk about patient empowerment, which is an overused term, I think the way we look at patients that choose to be advocates and they decide, these are people who are owning their story. This is what my illness means to me. That’s the starting point. From there, you go into every direction, the relationship with your medical team and the relationship with your body and the relationship with your illness, and how you choose to live your life. But it comes from that.
Families of Secrets and No Secrets
Health Hats: Yes, it is interesting. One of the gifts that I’ve had is that I came from a family of secrets. So, I became allergic to secrets. I wear my life on my sleeve. That has been a potent tool to use in my work of advocacy. And I wear so many different hats, and like I say, on my intro, I know a little bit about a lot of healthcare and not a lot about that much. I’m a storyteller, but it’s interesting that I’m on one end of the continuum and that most people are not on the same end that I am. This telling stories like you’re talking about is hard for people. Either they don’t want to brag if they feel like they have a positive story to tell, and they don’t want to make people feel bad because their story is pleasure and success and whatever, or they don’t want to burden people because their story is of pain and loss. It’s interesting that challenge of comfort with the story. Am I making any sense?
Shiri ben Arzi: You are making sense. The invitation to look at it from a storyteller’s perspective and say, there’s a timeline of events. Is this the story? It can be. But you can choose to tell the story differently. More than that, you can permit yourself to tell the story in a different way to different people. See, I came from a family there are no secrets. Everything is out there in your face. My default was everything is exposed. So, for me, it was a journey to learn that I don’t have to say everything to everyone. I can have different versions of the story. That’s okay. As long as I tell myself the truth like I’m not bullshitting myself. That’s a big one.
Health Hats: That is a big one. That’s a hard one.
Shiri ben Arzi: it’s a challenging one because it can become very uncomfortable. It can become pretty scary.
Tough Questions: What Do You Want from Life?
Health Hats: I have one more question, and then you can ask one more, and then we’ll wrap it up. When you think about your personal goals, what you want from life? I guess that’s a two-part question. The first part is what do you want from life? And the second is how does that affect the decisions you make about your health?
Shiri ben Arzi: Wow. Wow. Wow. Wow. Okay. So, I don’t have a simple answer for that one.
Health Hats: No, it’s okay. Do we have a week? Let’s meet at six in the morning for half an hour for the next week. And that’ll be a fascinating conversation, but okay. But pick one, like a goal in life, and then how that impacts how you manage.
Shiri ben Arzi: I have a lot of goals, but I have more than the goals. I have a calling. To explain that, I need to go back 20 years ago when I was first diagnosed. The night before I was diagnosed, when I was hospitalized, I had an episode that could be called clinical death for lack of better words. I had a vision. It’s going to sound a little bit freaky, but it is what it is. I’m not judging. I’m good with that. So, I was floating down this tunnel feeling very loved, and there was this entity at the end, and I wanted to go. I want to float, embrace it and go to the light. It was lovely. That entity stopped me and said, your work is not over yet. And then I woke up and, tubes and everything was beeping, and apparently, they saved my life.
I’m serious. So, for me, this is about leaving the world in a better place, when I’m gone, than when I came, so that’s the goal I chose. Doing it mostly with medical coaching, but I also do that, personally. After that experience, I became, in a way, fearless. I’m not afraid of dying. I’m not afraid of pain. God knows I’m used to pain. I know how to deal with it. I hate it. If there’s one thing that I am, one thing that might frighten me is living an unfulfilled life and something happening to my daughter. That scares me. Fear did come back after I became a mother, but the meaning is that I seek to promote goodness in everything that I do. And it was also learning to be good to myself. We talked about self-love. Be good to me and love myself and loving myself is not at others’ expense because self-love is not selfishness.
When it comes to my health decisions, then I know that there are certain things I’ve learned how I like things done, and I permit myself to be the expert on my health. I’m not a doctor. This is why I have a fantastic doctor. I love him to bits. He’s been such an amazing ally for me for over ten years. I have other people to assist me, but ultimately, I take full responsibility, yes, full ownership for the things that I know, for the things that I don’t know, for asking for help. I know that taking care of myself is another way of being aligned with my goal to promote goodness to the world in a slightly better place. I need to take care of myself.
Health Hats: I love it. Thank you. Thanks for sharing that. If you weren’t 6,000 -7,000, no more like 10,000 miles away, whatever, I’d hug you.
Shiri ben Arzi: I’ll hug you back.
Health Hats: Yes, that was very nice. Anything you want to ask me?
Tough Questions: Conflicts with the System?
Shiri ben Arzi: There is so much that I want to ask you. The medical system isn’t easy. It isn’t easy on the people that work in the system. It isn’t easy on the patients. It’s not an evil system. It’s a system. My question is, do you ever get conflicted? You’ve experienced the system. You see all of its flaws. At some point, you are a representative of the system. What are the places where you get conflicted, and how do you resolve that?
Health Hats: That’s also too big of a question. But let’s take a stab at it—my frustrations with the system. I’ve been part of the healthcare system for more than 50 years, and it’s infuriating. And I’m a fixer. I want to fix things. I’m good at building systems and infrastructure, and I’m a change agent. Through much of my career, my sights were set high. I’m not a revolutionary, I’m a person who learns the system, and I work within it. I work within it, and I try to change it, and I think my successes have been minor. Now that I’m seasoned -old, whatever – my goals are so much smaller, but I’m better at all of that stuff than I’ve ever been. My friend who lives in Jerusalem, who I talk to once a week on the phone with many people.
One of the things she said once was, you’re at the pinnacle of your career, even though I’m a retired person. It was very loving. She said that, and she’s right. I can bring all of this to bear to effect tiny changes, but I’m a lot better at knowing where to apply that. For example, I’m on the Board of Governors of PCORI, the Patient-Centered Outcomes Research Institute, which you know. I have a coach because I think this is the pinnacle, and I don’t want to mess it up. I don’t want to blow it. I want to be effective and do whatever microscopic thing that I can do that will make a difference.
Even though I’m full of myself and think I’m better at this than anybody. Nobody stays good at what they do without coaching. So, now we’re back to your work. Hey, this is a great circle. I have a coach, and it’s a business and personal relationship. I need it to be effective. I need that outside wisdom. I have no idea if I answered your question, but there is an answer. Thank you very much for taking this time. And I think this is one of those moments of intimacy. I want to thank you for that. I’ll have a little cry after we get off. I appreciate this conversation, and I think we should maintain this connection, and I would whatever I can do for you. You know where to find me now.
Shiri ben Arzi: Yes, I do. Yeah, I suppose so.
Health Hats: Thank you, my dear. It was lovely.
Shiri ben Arzi: It was lovely. I enjoyed every minute. Thank you so much. Take care. You too.
Who says you can’t make friends on Zoom? So much to welcome in this far-ranging mutual interview. I especially enjoyed telling a story about telling stories – for ourselves, about ourselves, and our constituencies. Siri and I were both wary of the potholes of advice, appreciative of multi-sided dice of storytelling and clinical pictures, and full-throated cantors that we are not our diagnoses or behaviors. We met at the intersection as children of families with no secrets and too many secrets. Perhaps we could use some help exploring those depths. So, thank you, Master Medical Coach Siri ben Arzi.
This podcast was just great Danny–you talked about so many complex feelings and ideas and clarified so much about how we navigate our healthcare and every other kind of difficult and decisions. And of course it was great to see Derek Wolcott’s poem right at the top of it!