The Dysunderstood Podcast

Season 2 Episode 2: Dr. Feldstein’s Story Transcript

Welcome to the Dysunderstood podcast. I'm your host Ella Eastin.

Welcome back everyone to another episode of the Dysunderstood podcast. In this next episode, our guest is a former emergency medicine physician who sustained a disabling back injury that forced him to change his career as he knew it. He is now a chaplain working in spiritual care at Stanford and is here to talk about identity, the desire to maintain control in life and to offer wisdom.

I hope you enjoy.

This podcast, how did it come about? Dysunderstood is evocative. It's wonderful.

Yeah so when I was initially diagnosed with Um multiple chronic illnesses after my covid infection in 2020 Um, I had made an announcement to The world, the internet, whoever was going to see the announcement that, um, I was no longer going to be competing in Olympic trials.

And, um, for the reason that I had received a dysautonomia diagnosis of postural orthostatic tachycardia syndrome and ME CFS. There is a wide range of how it presents in different patients, um, all the way from being able to maintain somewhat of a normal, um, life to being completely bedridden, needing the lights off, no stimulus, being unable to eat normally, interact with, um, with anybody.

And it's a very, very devastating disease. Um, and I had, you know, I say I almost had the privilege to be able to experience these conditions and that I have been so lucky to recover enough of my functioning to now try and make a difference for these patients by attending medical school, but the platform itself started because I made this announcement to the world that Because of these conditions that I had developed, I was no longer going to be able to compete as a professional athlete and decided to retire and I received so many kind messages from the people in my community and others that I had never even met or heard of.

Um, that said, you know, thank you so much for sharing your story. Thank you so much for, shedding light on these conditions and for being so open. And I never thought twice about, you know, keeping that part of my life private. Um, and I know a lot of people who, um, want to keep that to themselves. Um, and I completely respect that.

Um, but my experience was so life changing that I felt like I needed to be open about it, um, to increase awareness of the conditions. And And the average time to diagnosis for someone with any form of dysautonomia, um, is actually five to six years. And I was lucky enough to receive it within 10 months.

Um, but that is not the case for, for many, many people. Um, and so I, At the time was not swimming. I did not have a job. Um, I was living at home essentially. I mean, I was completely bedridden and my mom was taking care of me at the age of 23, 24. And, um, I felt like I needed to do something about this and I didn't know what to do.

That was going to look like, but I started asking people on my social media questions like, um, you know, what treatment has helped you for managing this specific symptom or, um, trying to get different tips, learn from others that have been in the community. Um, and one day I happened to ask. Um, the chronic illness community specifically, what is one word that describes your experience with dysautonomia or chronic illness?

And the number one response was misunderstood. And so I coined the term disunderstood, um, you know, combining dysautonomia and misunderstood. Um, And I felt like it was very fitting for as a way to describe how I felt and how a lot of people feel while navigating living with these conditions. Um, it's hard enough to not know what is happening inside your body, but also to know that the medical community doesn't have a lot of answers and has a hard time, um, caring for you and diagnosing you.

And it's a, it's a pretty scary experience. Um, And I wanted to do something that allowed people to share their experiences and somehow raise awareness. And so, um, I've had people share their stories on the platform and now, um, hope to use this podcast as a more accessible way for people to, um, listen to patient experiences and, and also have conversations with wonderful people like you to, um, help contribute to this community in, in different ways.

Our, our stories are the, exactly the same and, and exactly different.

Yeah. I

mean our stories are the same and different, um, it's always remarkable to me, um, now at what I've learned as, uh, someone who's been an emergency medicine physician, um, and then, you know, had the injury which, uh, required me to have to leave.

Emergency medicine and find something new, um, in going through that journey of finding something new and all that, um, into what I'm doing now. Well, that was in 1997 was the injury. So it was many years ago.

Yeah.

So, uh, as you're speaking about this, I'm also recognizing the same, there's certain same essential elements that we experienced, but also moved through.

Yeah. Navigating the uncertainty. I didn't have the language for that at the time. It was more of like, Oh, I felt this tearing pain. Helping a friend move a piece of furniture on August 20th, 1997. Isn't it funny, at least with, uh, uh, either within, uh, Injury or, uh, or a moment of diagnosis, we can remember the exact time and moment forever.

It, it's something that imprints itself on us, right?

Mm hmm.

And, uh, I'm, I'm aware in reflecting on this looking back, um, that it imprints itself on us and then how it does. Um, and it comes out of who knows where. It's off my calendar. It was a happening.

Yeah. Mm hmm.

It happened, it was a happening in life and it came without my permission.

And that, the idea that life needs permission from me, I don't know where that came from. But I think so many of us live as if life needs, we need to give permission. But we don't?

Mm hmm.

Um, I mean, you chuckle, so maybe there's some resonance in that, is there?

Absolutely. I mean, I think people like to think that they are very steadfast in being able to hold the reins to their life.

Um, and I think that so many of my experiences have kind of taught me that the only thing I am able to control is my response to how life is. kind of leads me. Um, and I think being able to recognize that there are going to be things that happen that are are not in the plan. Um, I think makes it a little bit easier to get through the day sometimes, but, but also that's a constant learning process.

I don't think I have ever fully accepted that. Um, but it's, I mean,

when you say not fully accepted that I'm with you, that's it's, it's a learning process. Ever evolving. All this happened. Um, I'm imagining you as, uh, you know, the story of the, uh, The, the young girl, the teenage girl, the young woman training and, um, you didn't think about all this.

You were in control. You were doing it. Yeah,

yeah.

So now you're talking about I can only control, uh, part of my body. You know, my response to how life leads me. There's going to be things that are not in the plan. You said, yeah, well, this was a sudden wake up and realization and learning. Right.

Yeah, but this is part of the, this is one of the wisdom and truths that, um, we never learned this in kindergarten.

No,

I didn't. Did you, I mean, we're generations. I mean, you can tell by looking at us, but did you look in kindergarten?

No. And it's actually funny that you say kindergarten because my. I have a report card that my mom loves to show me every once in a while from my kindergarten teacher that said, Ella thinks she runs the class.

And. I think that I have a tendency, like we've been discussing, to try to maintain control and be in the driver's seat and, um, know exactly how things are going to go. If, if I'm leading the way, then it must go in the way that I'm leading us, right? And that's, that's not always the case. Um,

this notion, by the way, this is a, a really, what we're talking about here seems just kind of chatty.

But it's a key, deep notion about, um, the nature of our human being. And if we get, and if we're, if we are mistaken about it, if we are misunderstanding it in the first place, that will be a source of dysfunction in our, in our, in the unfolding. of our humanity, our personal humanity, and also then our social humanity.

So we're getting down to philosophical things. Um, what I would, what I've now come to learn, and I didn't know any of this, by the way. So Um, learning happens and as a result of having gone through what we've all gone through. So, um, what I'm getting at is what I've come to appreciate, and I'm just disclosing the background, it's about the very nature of our human being.

They don't teach us this in medical school.

No, no, they, in medical school, they have classes on diseases, epidemiology. They have classes on the physiology, the immunology, the this, that, and the other ology. Ology means the study of, right? So we're all interested in the study of what about the very nature of being human?

So, and this is important about the emotional aspect of all of this. We, we aren't in control. We can only be in control about what we are in control about. Do you know where the notion of control comes from? No. I learned this from a philosopher, uh, a man who I continue to, uh, uh, learn with. And, uh, as I recall him saying

the first of all, let's observe that control is in language. It's a word that we use. So you and I are in language all the time. Now that's something that they don't, I didn't pay attention to growing up in that. What is the nature of conversation and that we are beings in language. So at some point in time, the word control wasn't in our vocabulary like you.

And it's fantastic how you, you blended the word, you took the dis from disautonomia, the, the misunderstood and you created disunderstood, you know, that's fantastic. So in that moment, something new comes into being. Well back around the, so where did the word control come?

I don't know.

So, I, uh, here's what I learned.

Back in the days of horse and buggies, long before there were electric cars and computers and long before the industrial age, people got around in horse and buggies. Well, if, if the horse and buggies were going up and down little hilly areas and the horse got tired and you started to go back down the hill, oh, that would not be good.

So somebody in France. Invented, uh, a gear, a mechanism, so that when the wheel started to turn back, it would stop. Mm. It would stop the backward rolling of the wagon. It would, it would stop it, it would go, a, a gear that would make it go against the rolling. Contra rulo.

Oh.

And then that became the word. You can hear it right?

Contra against Rouleau against the wheel. Contra Rouleau became control, but control Matt was specific for at first for the wagon. So that was something you could control a wagon.

Yeah.

Somehow as human beings, we got the idea. Oh, well, we can control other things. And that's true, but we can't control everything, but then we make, we were, we made the misunderstanding to think that we could.

And then if we think that we can and life isn't that way, which it's not, then what's the emotion or the comes up, um, when we think we can control something and it doesn't happen that way, we feel,

Defeated, frustrated, depressed, um, a lot of, a lot of anxiety. I mean, I could come up with, with plenty of words, I think.

Yeah. And it's all in the negative direction, right?

Yeah.

So look at all the, uh, out of that misunderstanding comes all this negative reaction.

Yeah.

So the idea to, uh, accept that we belong to life, life isn't, and this is learnings that have happened to me through this. I think if I had learned all this ahead of time, it might have, it still wouldn't have changed the, the ripping, tearing of the two discs in my back.

It still might not have changed the fact that I was, I would have, uh, chronic pain.

And the

spine surgeon would finally look at the MRI and say, Dr. Feldstein, can I tell you what the MRI shows? And I had already been to the internist, the back specialist, the physical specialist, the epidural, the, you know, acupuncturist, all these different things.

Uh, and it wasn't working. And finally he said, Dr. Feldstein, it shows that you need to find a new work style. End of career. 19 years emergency medicine, founding faculty for the Stanford Kaiser residency program, head of quality improvement, visiting scholar at the Center for Biomedical Ethics, uh, ideas and visions of what I could do.

All laid out at a certain pinnacle of my career with a future before me. And he says, you need to find a new work style. No more emergency medicine.

So, I went through somewhere inside me, and I'm sure we all do, Uh, and I'm from Detroit, but I won't use the street language how we used to talk. And, you know, it was just like, you know, what the heck is going on?

The, you know, I can't help it. This is not fair. Um, nobody asked me, you know, it's not in my book, no permission, anger, negative, uh, depressed.

Depressed is when the anger is not expressed. Um, all those kinds of, uh, emotions. And that only adds to the level of stress and adds to the pain, right?

Yeah.

Uh, we know that.

Yeah. So I wonder what would it have been like if I said, Oh, Stuff happens, that's what mama taught me, which she didn't. Oh, that's what Mrs.

Wilkie in kindergarten taught me, uh, which she didn't. Uh, you know, life happens, then we talk about it, and I belong to life, it's not like life belongs to me.

So, it goes back to what you, I'm with you about we can only control what we can control.

I wanted to also react to what you said about, um, you wanted, you felt like, um, a lot of people want to keep it private.

Yeah.

And there is an issue of shame about this. I know I went through that for some reason. Um, I don't know you were blessed in a different way

yeah, I and I don't want to say that I I did it in an altruistic way. I think that there was absolutely shame in my situation at the time because I had put all these expectations on myself and I felt expectations from others on the outside That I was one day going to be an olympian You And I was one day going to accomplish the goals that I had set out to do, you know, 18 years prior.

And for me, it felt like I had an explanation for why that wasn't going to happen. And I think my motivations were twofold, um, partially selfish in the wanting people to know that. It wasn't that I wasn't capable. It was that life was happening to me and that something out of my control was preventing me from accomplishing what I felt like I was capable of accomplishing.

Yeah.

In addition to also being so profoundly affected by the condition that I was experiencing with my health and knowing that, you know, Millions of other people on earth were experiencing the same as me and didn't have a voice and didn't have recognition and didn't have all of these things that I now want to improve.

So it was not completely selfless. Um, but I think I

could, I can hear right away the, um, your structure in your way that it's not just about you, but I'm not alone in this. There's other people too. Yeah.

Uh, not everybody is that way, and I don't know that I was that way. It was, uh, also, I think a lot of, uh, uh, yeah, and that's one, one reaction.

I also came to see, the injury for me raised the question, the basic core question, again, who am I? What do I really care about? Where is my heart? And I got enough, uh, training in philosophy or from mentors. in different fields in the post injury period to know, oh, that is my question. Where is my heart? And I had no idea.

But I also, I'm, I'm reaching over here. I want to find the quote. I keep it at hand. Something that really helped me because the, again, the question is, well, who am I now for this next chapter that is thrust upon me?

Um, again, without my permission, but yet here it is.

Yeah.

Oh, maybe there's something, you know, there's different reactions to when I don't know what's going on.

That's a basic core experience. You know, I don't know what's going on of uncertainty and that, and that's really our condition in life. I mean, there's certain things that we do know and can know. But there's so much more that we can't.

So, what are our possible reactions to it? There's three general ones.

We could say, Oh, you know, I don't know what's going on here. And it's simply that.

It's

not good, it's not bad, and we can call that, what word should we use, perplexity. Neutral.

Okay.

Do you want to call it?

I was going to say kind of neutral.

Yeah, it's, exactly, it's neutral, perplexity, hmm, what's going on here?

Yeah.

Or, we can have a negative reaction, and that's most common for almost all of us. You know? I don't like what's going on here. I don't know what it is, and I don't like it. And then that's some degree of, uh, confusion. And with its anxiety, anger, and there's, uh, actually in a book of philosophy or somewhere, there's, there's, it was described to me as there's confusion.

There's what was called shitty confusion, like I really don't like it, and I'm a chaplain talking, so please allow I learn this from my philosopher. And then there's, and then there's something which like raises that, it's called royal shitty confusion. It's like, we're talking about anger, um, rage, um, and it could be in the area of a certain kind of indignation or something.

So that's all confusion. Or, but that's not the only one, there could be, Oh, you know, I don't know what's going on here. Oh, how curious. I wonder what that is. Hmm. Maybe there's something new coming my way. You know, that's happened before. I wonder what's in store. So that's in the realm of wonder. And we can train or be already trained to, in one of these three ways, or any of these.

And so, I began to wonder, well, what's next? And here's the, uh, somebody along the way taught me this idea. Especially as Americans, especially as people living in a current Western civilization, we, we think we always have, we're entitled to have answers for everything and we're titled to find the answers and be able to control everything.

And not only that, we can have the answers like right now.

Yeah.

Except there's some questions that are bigger than just fill in the blank right now answers. So here's the wisdom that comes from the poet Rilke, Rainer Maria Rilke. Um, it's a quote I refer to as living with questions. Be patient toward all that is unsolved in your heart, and try to love the questions themselves.

Try to love the questions themselves. Questions like locked rooms, or books written in a very foreign tongue. Do not now seek the answers which cannot be given you, because you would not be able to live them. And the point is to live and learn. So, live the questions now, perhaps you will then, gradually, without noticing it, live along some distant day into the answer.

The point is to live everything. Live the questions now. Perhaps you will then, gradually, without noticing it, live along some distant day into Live along some distant day into the answer. So that became a, a kind of road map. A two way kind of road map, like, that I'm living a question. For me it was, well, given my situation, And coming to some acceptance about what I can change and what I cannot, the serenity around that.

So that was an important key ingredient. Um, well, who am I now? How then shall I live? I can see what's no longer possible, that door's closed. But doors closed, doors opened. So what may be opening for me? But where is my heart in this? That was the key piece. At one point, I was at, uh, my clinical work was at Kaiser.

Kaiser Permanente And the, uh, the, the Chief of Kaiser said to me, Oh, Bruce, you know, it looks like you're not going to be able to continue on in this. Um, maybe we could make you a telephone triage doctor so when people call up with, uh, urinary tract infections, doctor, I'm urinating all the time and it hurts and it burns and I would be able to say, yes, it sounds like a urinary infection.

Here's a prescription for you. And then I thought, that's not the kind of medicine or physician I want to be. And I wasn't going to take a disability check and just go to the beach. So I was in this question, well, who am I? What's next? Where is my heart?

By the way, that question for me, I had no idea.

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Um, I worked with one, uh, counselor, one therapist, and you know, they do visioning, imaging. Where is your heart?

And it came up as a, uh, an image arose for me that I was coming into a forest, and I was navigating through a path in the forest. And there was a clearing that opened in the forest, and there in the clearing was a little cottage. And I looked at the cottage, but it was all boarded up and a little bit run down.

It didn't have paint and such. Well I went in and I opened the, the window and I looked in, I didn't see anything, there was no furniture. I opened the door and I walked in, there was no furniture, there were like cobwebs. And then I stopped to, uh, later I came up out of the image, and I realized, oh that is my heart.

It's a place in a clearing, but it's a place that had been abandoned, or maybe never even lived in.

And then in that moment I went, aha. I have no idea where, what is my heart? Where is my heart? So that became the question. And I began to live with the, well, what is it? And so I didn't know, but I allowed myself to not know. And then gradually over time, I began to recognize, uh, I have a book up here among many.

This is a recent one by a German sociologist and philosopher named Hermit Rosa. And it's entitled, Resonance. Well that's something that I had heard of, but he was, uh, It's always good to affirm. I would, I would be with people and certain things that I would be with them would make me feel alive or sustained or nourished or curious or yearning.

There would be a vitality I would recognize. Sometimes it would just be, and it was gone. But I said, aha, and I decided that that's part of my heart. And when I would start to see these little moments and, and then I would look for things that I cared about. That we're missing in the world

and one of those other people other and I would just talk with people I can remember one time

I was at this international conference on ethics. It was on Jewish medical ethics I come from a Jewish background and I'm talking with this guy and explaining, you know I've been in emergency medicine and now I'm need to find a new way, you know, I can Walk and move around. But, um, you know, I've got this pain.

I can't do the lifting and all these other things don't work. And he looks at me and there was something, there must have been something about me or what he heard. And he says, you know, you ought to become a chaplain. And I said, what? Chaplain? Chaplains are Christians. And he, cause that's what I thought.

He says, no, no, no, no. Chaplains, they come from all different, uh, backgrounds. All different faiths and spiritual backgrounds. And I said, look, I'm not a, uh, I'm not a rabbi. I'm not ordained. He says, ah, you don't need to be. Anyway, he, in that moment, he saw something in me about something that I cared about, but I couldn't even put into words and didn't think that it was appropriate for me.

Yeah. But I did not dismiss it. I said, oh. And I explored and I said, oh. And I went with somebody who was doing this and I said, oh. And I felt really at home just in this initial exploration. Yeah. And, in fact, not only did I, uh, had, didn't think that I could do it, if you would have asked me ahead of time, I would, I could have told you with certainty I could not do it.

Here's what I mean. Uh, when I was, uh, an emergency doctor and I was in charge, somebody would come into the emergency room. Uh, Charlie went to base, we're en route with a 52 year old man. Uh, no cardiac, no pulse, no cardiac rhythm, downtime, seven minutes. Uh, advanced CPR in progress and they wheel them in and we would do everything to start up his heart and we could not, I mean, we tried and then it was my, I took it personally as a matter of integrity to inform the family after listening to them, you know, making a good connection, sitting with them, finding out what had happened and explaining how they did the right thing that we couldn't start up the heart.

And I'm sorry, I'm sorry. Joe has died and they would start to not only cry, this one family, but wail loud. And immediately I was so overcome with emotion and something I said, I'm so sorry, the nurse will come in and be with you. And within 10 seconds, I ran out of the room. I did not have the emotional fortitude.

to stay in that room. I had to run.

So, fast forward, what do I end up going into?

Spiritual care.

And I'm the guy who's called in.

Yeah.

So I found something in the question, where is my heart, that was more important or that I trusted more to pursue than thinking that I did not have the emotional fortitude. And I did not, but I, I had the The, the commitment to pursue this, and the capacity to learn, and people to train me and learn along the way.

It wasn't something you just sit down and figure out like a, uh, like a math equation. It was exactly what, um, Roelke said, it was about living the question, who am I? What do I care about? Where is my heart? What's my situation in world? Where do we map up? And out of this comes, you know, as it did for you, um, I am not alone.

There's other people here.

Yeah.

You know, there's community, there's living in the air. Uncertainty and lack of understanding, um, et cetera.

Yeah, I love, I just love that story. Um, and I think that, I mean, going back to our initial discussion on control, um, I think it's so, It's wonderful that it can also have two sides of the coin where, you know, it's lack of control is associated with, um, those negative emotions we discussed, but lack of control also opens up a lot of opportunity that we would not have, um, given ourselves, uh, by maintaining that control.

Um, I, I have a shared experience in that I never thought that going through the process of medical school into a career in medicine was something that was possible for me given, um, my background and whatever limitations I believed that I had and placed on myself. And it took, um, it took someone else encouraging me to just.

be open to the idea of pursuing medicine. Um, and then, like you said, having the heart to do so, it took a very profound experience for me to, um, be willing to put myself in into the process, um, because of what I had experienced and knowing that there were people that I needed to help that I needed to grow as a person.

Um, and that medicine was gonna allow me to do so at least in this part of my life. So I, I love, um, Everything that you shared. And I think that so many people have the experience. Um, especially in this community where they're what they believe is the foundation underneath them is shaken. Um, and people have to reevaluate in one way or another.

Um, what matters to them. Um, especially when you're limited with energy, you have to decide. Let

me, let me jump in if I may. Please. You know, the, oh, this is so rich, you know, there's so many, as I listened to you, I listened for certain, like, there's like little, there's, um, words or way you'll say something that jumps out and behind that I hear a world of meaning or, or questions that I'd love to explore.

But you talked about, given the limitations I believed I had on myself. Did I hear that right? And so, I want to talk, and then you said and it took someone else to be open to the idea. And then you trusted or you listened to them at, in the moment. And it, and it allowed you to create a doubt about your own belief.

Mm hmm.

And the doubt about your own belief then led to an opening to, Huh, I'm either gonna believe myself or I'm gonna trust him or I'm gonna at least wonder Mm hmm. In this little moment, I'm going to wander into the wonder, W O N D E R, and wander, W A N D E R. Don't you love playing with language? I know you do.

You've got this understood back there. So, I'm going to wander and wander into this little moment of, uh, opening here. Uh, about what else might be possible, and then you had the, uh, courage to keep going with that, even though you might not have known what it was, and, and etc. So, I'm commenting here about belief in faith, and, and how belief in faith is shaped in community with people, and again, we keep coming around to community.

You know, we can only see what we can see, but others can come in on different directions.

Yeah.

So, um,

our belief and faith at the same time, um, limits us, but also, uh, opens us. And that's something for us to be aware of.

One other thing I want to talk about, care and meaning. Um, and I'm thinking about, like, you and I are both highly functional after whatever happened to us. Yeah. But not everybody is. No. No, some people are, you know, really limited. Um, I had a one woman in the intensive care unit. She's in her forties. She's got a pneumonia and the breathing is so difficult.

She did not have the mechanical energy in her body. physical to be able to breathe enough on her own. She needed to have a tube in her mouth and a respirator. And the tube actually was in her, uh, trachea because she needed it, um, chronically. And it turned out, as I discovered, uh, she was born with a neuromuscular disease.

That means a disease that affected the combination of the way her nerves and muscles work all over her body. And so she went from being able to walk around, to being able to not walk around but be in a wheelchair, to not being able to breathe on her own. And now, she had developed what, for you and me, would have been a cold.

For her it turned into this life threatening pneumonia. So now she's in the, uh, and she's there and I'm talking with her. And she has to use a little microphone to her. voice box because she doesn't have the power to amplify the sound

and I'm feeling all this pity for her. I have to tell you, even though I'm just being very professional and being very present and I'm here now as a chaplain, who's also a physician.

Yeah.

Um, and she says to me,

this is the very first time in my life that I have been sick.

When I heard her say that, knowing all this background, I went, huh? And I realized that she was living in a whole different world of a different story and meaning about who she was in her life and what she was doing than I was projecting onto her. Yeah.

Yeah.

And then. I learned more about her. She had a whole group of people around her who were everyday would help her get up, help her get dressed, help her go, get to the food.

Uh, she would direct them all. I also learned that she was an attorney. She had been a, come an attorney over all of this time. And not only was she an attorney, she was an, even though she couldn't talk very, she was a, uh, outspoken, Uh, advocate for the disabled. Not only that, she went to Washington, D. C. to testify before, in the Senate or the Congress, about, you know, Disability Act Bill and et cetera like that.

This lady was filled with purpose and meaning and surrounded by love. And do you know what? As I started to hear the story, I realized Um, I had a, a certain quality of, I'll call it spiritual envy. I don't mean I was jealous. I didn't feel bad for her or want for her. I was celebrating and admiring her and recognizing for myself.

I said, I wish I had love like that in my life. I did not. I wish I had conviction about what I'm doing in my life. Oh, I do have that kind of conviction now. I didn't used to, so I'm going to celebrate this moment. It's a moment of kind of redemption, where you've been in a really dark hole pit of a place.

In fact, where you can't even see the light. I'm speaking metaphorically. And now, living the question without noticing it, live someday into the answer. Here I am now at the bedside in my new role as a chaplain with this lady. And

I realized that, um, that as I'm talking now about the dimensions, dimensions of care, it's what I care about to offer to the world. Not just to, I do need to receive care, but what's the care I can be, who I am to offer to the world? What's the community around me that can care for me and that I can care for?

We really are fragile, independent, let me see, gets my fingers right, fragile, fragile, independent, and mortal beings at our very core, all of us. So, and we're people who care and both in the, the thrust of our, of our life itself. I'm going to use one of my favorite words, it's constitutive. of being human, that we are caring beings.

Constitutive means it is part and parcel, it's part of the structure. You take it away and we can't be human. Uh, we're constitutive as caring beings. And we care for others and we also require care others. And so there are the others. Oh, there's the community and the, and the meaning all, uh, tied up in this, you know, I'm thinking now.

And I, um, when I was young in my twenties, I went to Israel on a trip. I worked at a archeological dig and did some other, it was a kind of journey, but I went to this one. Uh, it's, uh, called a kibbutz. Have you heard of that? Yeah.

Yeah. A kibbutz is a place where people would live, come together. And this kibbutz was formed from, um, mainly elderly people who, uh, came into Israel.

And the, and this was in the seventies and they did not have a lot of resources at all. People were flown in from Ethiopia. People came in from around the world, uh, uh, Jewish people, uh, one. And I saw this one guy walking around, he was now 106 years old. Wow. He had been for some years. He had come from, uh, either Yemen or Ethiopia or Iraq or one of these countries and he had a, a stick and he would walk like this, uh, but everybody on that kibbutz had a job, everybody.

It didn't matter what your function was. Now this guy couldn't bend over, so he was, but they made him the gardener.

Oh.

So they made him the gardener. How did they do it? They built the garden up this tall so that with his stick he could sit there and he could garden. That was his job. He was the gardener.

And when they brought him out from Ethiopia, he was on a stretcher like this, you know? There was one lady I went in to see. I'm speaking now, I guess, about caring, community, and, uh, meaning and purpose. And also, uh, I'm seeing as we talk, there's an element of dignity.

Yeah.

Seeing and appreciating the dignity in every single human being.

So there was a lady I went in to see, and she's lying on a stretcher. That's all she can do is lie in bed and lie on a stretcher. Um, she was, she came, she said, I came from the old country. Right. New York. She came from New York, uh, some years ago, but now she's got a, she's, so what? I don't know what her conditioning was, but she can't walk, so she's just lying there.

And she says to me, but you know what? I have an important job to do. Every morning they come and they collect my urine and they take it over to the Wiseman Institute, you know, which was nearby next door because they extract from my urine certain, uh, chemicals or substances that they use to make medicines and to, and to do science on that will help other people.

That was, that was her, uh, so she, and she knew, uh, you know, everybody was taking care of her, but she had a job to do and that was the idea in this place. Um, one more? Another little quick one?

Yeah, please.

I go up to one lady. She reminds me of one of my relatives. She was a complainer. She says, you know, every morning I gotta get up and I gotta put on the water.

And I gotta put on the water and boil it for everybody in this place. Oh, you know, and she was just complaining about it. And then she says, but you know what? If I don't put on the water, Who's going to put on the water? So I've got to get up and put on the water. So at the same time she was complaining, she also knew the purpose and meaning in it, uh, for her.

Um, I hadn't thought about all of this ahead of time. I guess it's a riff about no matter what condition that we're in, if we have the ingredients that you started to lay out for us here so beautifully, Ella, of, uh, community, caring, which moves in different directions, meaning, um, purpose. Doing this together and dignity, there can be a, uh, a wellbeing, a certain, uh, richness of the life, uh, for where we are now.

Yeah. And I think I, I see myself in each of those people you described.

You do?

I do. I think, I think we, as humans are dynamic and our perspective changes from day to day. And. Um, I resonate with the idea of sometimes being frustrated about my situation, um, one day waking up and You know, having ailments, but also being positive about my contributions the next, um, and also sometimes being limited, but continuing to find ways to contribute to, um, those around me in my community.

And so, um, I think those three vignettes are, are representative of, of each of us and where our heart may be at the time.

Yeah. So let, let me ask you something. I'm, I'm curious. Where are we now in the conversation? What, what are we, each of us discovering maybe or learning? I know you're here, uh, to, uh, interview me.

I mean, but I see this as conversation and then they, and then human beings, like I said, were people in language, in conversation all the time. Uh, and conversation, uh, is a word. Itself that comes from the Latin con, which means together and very sorry or versation. We could just make it into the English Together we change, together we turner change.

So in the conversation we have going back and forth, and you and I just started talking, it's not like we laid the, this isn't scripted, right? So, what, what are, what are we discovering? Um, and what are you discovering, you know, for yourself and on behalf of this beautiful community that you're serving here?

I mean, I, I have learned so much in our, our conversations, um, but I think it's pretty wonderful when you take the opportunity to sit down and, um, consider some of the similarities of our experiences as humans, even though they may seem so, so different at first glance. Um, you know, the daily life of our listeners.

Um, it may look very different than an emergency medicine physician, um, but so many of the experiences that you shared are shared among all of us. Um, no matter whether, you know, the person is living with chronic illness, um, or is listening to try to support someone that they love with chronic illness or, um, is going to be a medical provider and wants to be able to learn about this community to better serve them one day.

I think everybody has, has something to learn from some of the stories that you've shared and, um, the wisdom that you've offered us and I. Um, I'm so grateful for the words and the conversation, um, and how the conversation has, um, allowed me to change as, as it's defined. So

wouldn't it be nice if we could have, uh, some of your listeners called in and just see what they're provoked, you know, provoked, I mean, like stimulated, uh, To wonder about something else or maybe realize something else for themselves.

I'm always curious. What's something everyone's taking away today?

Yeah, yeah, and and the wonderful thing too, I think is that every time you have a conversation with someone or listen to a conversation in a podcast or a video Every time you watch or listen to something, your experiences and perspectives have changed.

And I think that's the beautiful thing is you can come back and learn something new and something different every time.

Yeah.

Um, and so I absolutely will be listening to our conversation to hear from you over and over again with, with the same words, but, but experiencing change within myself. That's different.

Yeah. We come to it newly each time.

Yeah.

You know, something else, if I may ask, um, before we, before we, uh, close, and I know you're the one interviewing me, but I'm, uh, you're, you know, interviewing, you know, but you're with a guy who's a chaplain here, so I can't help, but this is how, you know,

I mean, here, here's the deal, uh, this is really important about, um, I learned this from being with people at the end of life, and the fact of the matter is we are, and I learned this in the emergency room, we're always, all at the end of life with each breath, and, and heartbeat.

How many people have I seen that came in with sudden death? And how many people have I been with who have died, whether they were minutes old, hours? Children from illness, from injury. I worked in a Cambodian refugee camp. I've been with people who've been, uh, survivors of Holocaust and genocides and people who've lived to be 108, you know, We never know when our time will come, but we know that it will.

So then it begs the question, people always ask me, well, you know, how are we, how am I gonna say goodbye? But how do we, so the, one of the questions, this is one that's a live question for me right now. How do I live knowing that I could be living from heartbeat to heartbeat, which I always am, or I could live till be, uh, you know, 80, 90, a hundred years old.

And I can't know the difference. I've learned there's four things that if I keep up with, with individual people, it won't matter if I, if I, uh, I don't, I won't have to say goodbye, because it will be a, a goodbye, at least for now. Um, what I appreciate about you is, to say that.

You know what I regret? Any regrets, or please forgive me.

Uh, about love. Say something about love. And I don't mean a romantic love, but for some people it might be, like with my wife, but it could be a, uh, you know, a, you know, just a human caring love. And then, something about the future. What I take away, what I wish, what I'll always remember, what I wish for you.

But if I had only one of those, which seems to encompass all the others, I would just simply say, so, what shall, what can, before we go, I have a question for us. You know, what shall we wish for each other? So, that's my question. And if it were a long time and, uh, you know, we could look into all four of those, but, and it's something to say with people that we know all the time.

Yeah. So,

what should we wish for each other today before we go? What can I wish for you?

Hmm. I think that I could use the wish of staying grounded in my mission to the patient population that I have. So dearly identified with and hope to help, um, throughout my time in medicine. Um, this podcast is one of the ways that I am.

I'm trying to play an active role in that act of staying grounded, um, in this mission, um, and throughout my life, uh, not only in, in my pursuits in medicine, but, um, this is something that has deeply, um, affected me as we've, as we've talked about, um, in a beautiful way that I, I carry with me. crowd, uh, responsibility of, of positively impacting others that are affected by this.

But, um, I think I wish to be continuously grounded in that mission of mine.

Yeah.

What can I wish for you?

Well, um, before I get to me, let me, let me go back and wish all that for you and plus what you can't even put into words because the beautiful words which you chose reflect a, uh, a heart, a yearning and a caring that's there before the words came out and, and there's more there.

So I want to, um, so I want to wish that for you plus what you can't put into words, uh, May you, um, stay grounded in this mission. And be well used. And I mean that in a very positive way. Be well used and find the strength and to do so in good company, knowing that there's always moments of coming up and down and we can't do this alone.

And I also appreciate for you of You seem to understand as I've come to realize that who we are is each other can't separate that So when you say what I you say I wish for myself, but who yourself is is your caring about each other? And it's a beautiful Kind of wish anyway. Anyway, I wish I wish all this for you plus what you can't put into words.

Thank you.

Yeah

So you asked me what you could wish for me

I did.

Oh, um, strength for the road.

Mm.

And clarity along the way. And as, uh, the Irish say, may the road rise up to meet me. And, um, and, you know, with moments of joy along the way and more opportunity to, uh, you know, run into you again and continue our conversation.

Absolutely.

All right.

I, uh, I wish you that strength and that clarity. Um, I know you have made. such an impact on those that have been so lucky to have you by their bedside, um, in the hospital, hospital and other healthcare settings, um, in your work as a physician and now as a chaplain. And I appreciate so much you sharing Your time and your wisdom with us.

Um, and I wish you those joyous moments. Um, this has been a joyous moment for me along my path. And I look forward to, um, our continued conversation. And like you said, last time we, we call this a dangling conversation because it's not over. And I think about that all the time.

That's what I like to call it.

I love how you remembered those words. I want to also, um, Ask each of our listeners, your listeners, now our listeners, what do you hope for? And I know you're not with us face to face, but I carry you in my heart now somehow. What do you hope for? What can I, what can we wish for you? What shall we wish for each other?

And I know I can't hear that in person, but I can sense, I want to sense that and wish all that for you. Plus, what you can't put into words. And may it be for the good.

Thank you so much. Thanks for listening, and you can find all things misunderstood@sunderstood.com or at misunderstood on Instagram and TikTok.

See you next time.