Thank you, Kate, for that really nice introduction. I don’t think anyone but my mom has ever said such kind things about me, and she only says them when she’s drunk. I’m kidding! She stopped drinking a couple days ago. I’m sorry I’m late and that I kept you waiting. I know very well you all have a lot of work to do.
But it’s really neat to be here, having grown up at UCSF as a resident and now as a fellow. I used to fall asleep in those same seats during lectures just like this one. That is to say, I won’t hold it against you, residents, if you fall asleep this morning. Though I find myself becoming curmudgeonly about work-hour revisions and glorifying the good old bad old days of training when we still worked thirty-six hours straight compared to your twelve. OK, twenty . . . but still . . .
I change the title of this talk a lot. Today it’s called ‘The Teddy Bears’ Picnic’, but sometimes I call it ‘Why Stories Matter’, and sometimes I call it ‘The Worst Year of My Life’, and sometimes ‘Theory and Practice at the Intersection of Art and Medicine’. So I’ll start by reviewing what people in academic settings say when they talk about stories and medicine and then I’ll talk about how and why people I respect and trust insist that a facility in telling and listening to stories makes for a better practice of medicine. After that I want to read you this story I wrote about sick teddy bears and the rebel angels and the hospital staff who have to try to take care of the teddy bears and the angels and themselves after they all get caught in a shrink ray. And then I’ll tell you a little bit about the worst year of my life, as it related to that story, and you won’t be surprised to hear that that worst year coincided with my first year of a Pediatric Oncology Fellowship. So, that’s what’s behind the title. More about that later.
My slides are out of order. I’m sorry. I came here right from the airport, hence the lateness. It was a family emergency.
So. What do we do with stories in medicine? Oops . . . out of order again. My mom was sick. That was the family emergency, or I would have had these in order. Here we go. ‘Narrative Medicine’. What does that even mean, ‘Narrative Medicine’? I’m never totally sure what that means, but I think that’s part of the point, that it means different things to different people, and that, just because the phrase ‘Narrative Medicine’ contains the word ‘medicine’ you can’t expect it to mean the same thing to everyone like some words or phrases do, like ‘bezoar’ or ‘Munchausen’s syndrome by proxy’. I think being ambivalent about what it means is OK – this is a little cartoon I found with Cerberus the dog. Believe it or not I had a toy poodle named Cerberus when I was a kid. We had him trained so if you said, ‘Cerberus, kill!’ he would jump up on someone’s lap and lick their face. My mom thought that was hilarious. The slide didn’t come out very well but you can see he’s sitting on his therapist’s couch and the therapist is asking him how he feels. And one head says ‘Good!’ and one head says ‘Bad!’ and the middle head says ‘Ambivalent!’ And then in the next panel they’re both just sitting there and in the last one the therapist says, ‘It’s good to see that you’re getting in touch with your feelings.’ And I put it in there just to underscore this idea of ambivalence or to show that it’s OK to be ambivalent. As if such things were proved by cartoons. But maybe they are. Sorry, that seemed like such a great slide when I was throwing this together. But the point is that this stuff is all very confusing from the time you open your mouth to start talking about it, and that in most ways that’s OK – if what people talk about when they talk about Narrative Medicine was easy to say they wouldn’t need stories to say it. But in some ways I think that, for me as a writer, trying to explain or understand this is like one of Jane Goodall’s chimps trying to give you a lecture on Clifford Geertz. I am more of a practice person than a theory person. Not that there’s anything wrong with theory people. I love theory people. My ex is a theory person.
In any case, I think what most of the theory people are saying is just that they want us to listen to our patients, to get some intimation of the shape and scope of their lives, and that stories – writing them, telling them, listening to them – can help us do that. And of course we listen to our patients. But then again, we don’t. To borrow a phrase from this guy – sorry, that’s not him. Sorry, I am a bit of a mess from this family emergency and am functionally more than a little post-call. This was supposed to be a joke, that I prefer this Paul – McCartney – to this Paul – there we go – who was Saul of Tarsus before he was Paul of Rome by way of Damascus, Ephesus, Corinth and elsewhere. To borrow a phrase from him: ‘God gave them a spirit of stupor, eyes so that they could not see and ears so that they could not hear, to this very day.’ What I mean – what people who talk about this mean – is that the dispiriting ordinary and extraordinary everyday transactions of medicine give us a spirit of stupor, and some conscious discipline is required to shake it off.
Yes, Kate? What? The teddy bears? Oh yes, they’re coming. I’m getting a bit short on time already, but I’ll read fast. And it’s a pretty short story.
So what do you do with this notion that we ought to listen to our patients’ stories, when it’s hard to actually listen, when there are a whole lot of reasons why it’s hard? Well, here is a lady I met at a conference on writing and medicine, in Oregon. I was late to that too, actually also because my mom was sick. I missed Dr DasGupta’s talk, but she very kindly let me see her slides. I watched them all alone in the auditorium, very late at night, and thought about them for rather a long time there in the dark. I couldn’t sleep anyway.
This is a little chart from an article in Academic Medicine that Dr DasGupta wrote. She’s talking about what they do at Columbia with this – what they do when they try to teach their students to tell stories and listen to stories. They have a whole department of Narrative Medicine there, which kind of blows my mind every time I think about it. Can you imagine being able to call that consult?
But this chart is about a class they run for the second years. A required class – where they spend six weeks in a humanities seminar. You can see from the chart what they’re doing with their six weeks. They come to class with some idea for an illness narrative, a story of illness. It can be their own, but it doesn’t have to be. In fact, they are encouraged to use someone else’s story. My mom was sick for weeks this last time, but I could only get away to see her recently. There’s an illness narrative for you.
So you can see that Dr DasGupta has them try different things with the story. She sets up some hoops and asks them to jump through, as it were. Try writing from the point of view of the patient’s body or even a body part. Try switching up the genre – write the story as a poem or a regular essay or a TV show or a commercial or a play. We had an interesting discussion about how her students sometimes only discover what they want to tell, how they discover what part of the story really matters, as they switch it or carry it from form to form and find which part stays the same amid all the changes. I told her I was working on something that started as a story and became a novel and then an essay before it was finally a graphic novel about the demon that possesses Linda Blair in The Exorcist, but that it was really about my mother. And Dr DasGupta said, ‘Exactly!’ It’s about a lady who keeps having sex with this demon, so her kids are all half demon, and they have to sort of figure that out and deal with that. It’s called Pazuzu because that was the demon’s name. Everyone always thinks it’s supposed to be Satan who possesses Linda Blair, but it’s Pazuzu. Poor Linda Blair. There’s an illness narrative for you, too.
So you can see that in Dr DasGupta’s course there’s a kind of schedule of mutation and permutation to the story the students are telling. Yes, Kate? What’s the difference between mutation and permutation? Never mind. In the last week of the course, the syllabus says, ‘Try to reconcile these different versions of the story that you’ve told.’ Which leads, as you might imagine, to a whole discussion about what ‘reconcile’ means in this context. Kate’s about to start a chant, ‘Teddy bears! Teddy bears!’ They’re coming, I swear. One more slide. OK, two more slides.
This is a ‘Theory of Empathy’. I’m not totally sure what I think about this. I suppose I included it because I needed a fancy slide. This gentleman is from NYU – Martin Hoffman. I think he’s a social psychologist or a developmental psychologist. This is just a short extract from a book called Empathy and Moral Development. So he defines empathy as involving a psychological process that makes an individual have feelings which are more congruent with another’s situation than his or her own. That’s reasonable, I think. But what psychological process?
Sorry. Suddenly this slide doesn’t make very much sense to me. I think I already told you I . . . that I’m functionally post-call. But I wonder if it would make sense even if the past few days had not been the past few days. I may just be resistant to theories of empathy. So you see these terms up there. ‘Empathic Distress’ and ‘Mediated Association’ and ‘Role-Taking’ and ‘Sympathetic Distress’. And empathic distress is what you get when you see someone suffering and it makes you uncomfortable. The psychological distress, as Mr Hoffman calls it. And mediated association involves feeling that same sort of discomfort even though you’re not right in front of the person – you’re just hearing their story somehow, or you’re listening to ‘We Are the World’. Role-taking involves adopting that person’s point of view, whether on your own initiative or because someone tells you to do it or makes you do it. And then sympathetic distress is what you get when you’re uncomfortable and it’s more about them than about you. I think that’s what he’s saying. The ‘motive to comfort oneself’, he says, ‘is transformed into a desire to help’. So it’s a process. Empathic distress becomes sympathetic distress by means of mediated association. I don’t know. That all sounds perfectly reasonable, but I guess it leaves me cold. It seems kind of like saying that a Volkswagen pulled up in your driveway and forty-five people got out but neglecting to mention that they were all clowns. Or saying your daughter is ill and neglecting to mention that she is possessed by Pazuzu. Or saying that your mom died and neglecting to say that she starved herself to death and you let her do it. I mean, I think it’s very important to try to approach these nebulous mysterious processes systematically and reductively to understand what’s actually going on with them, but something in me always feels a little deflated and unconvinced by the results. Maybe because it seems like you always have to throw out the mysterious part or just ignore it in order to make your reduction or systematization successful. I didn’t read the book, though – Empathy and Moral Development. I didn’t read it. And I should admit to you that, the picture of Mr ‘of Tarsus’ notwithstanding, I’ve never read the whole Bible. Which is one of my problems, I guess, that I never read the book, or the whole book. And I’m just sort of winging it, in the ethics and morality department.
We’re only about three minutes away from the teddy bears now.
This is the last slide, which talks about the University of Michigan’s FCE programme.