Morris Dillard lecture: On Storytelling, Writing & Medical Detective Work: Dr. Suzanne O’Sullivan in conversation with Dr. Randi Hutter Epstein

November 01, 2023

Information

Program for Humanities in Medicine Dillard Lecture

On Storytelling, Writing & Medical Detective Work:

Dr. Suzanne O’Sullivan in conversation with Dr. Randi Hutter Epstein

Suzanne O'Sullivan, MD

Neurologist, London's National Hospital for Neurology

Author, The Sleeping Beauties: And Other Stories of Mystery Illness

Randi Epstein Hutter, MD, MPH (Moderator)

Writer-in-residence, Yale Program for Humanities in Medicine,

Yale School of Medicine

Faculty, English Department, Yale College

ID10928

To CiteDCA Citation Guide

00:00OK, Welcome everybody.
00:04My name is Anna Reisman.
00:06I'm the Director of the Program
00:08for Humanities and Medicine,
00:09and I'm very, very happy that
00:11you are all joining us today.
00:13You found the pizza in the back.
00:15Help yourself.
00:16We may have all of you take home
00:18another pie since there's a lot.
00:21So today's event is entitled
00:23On Storytelling, Writing
00:24and Medical Detective Work
00:26Featuring Doctor Suzanne O'Sullivan,
00:28who is You can see her on Zoom
00:31in conversation with Randy
00:32Hutter Epstein who is here Live.
00:34Before I introduce Suzanne and Randy,
00:37I want to acknowledge that today's event
00:39is our annual Morris Dillard lecture and
00:42one of the four name lectures in the
00:44Program for Humanities and Medicine.
00:45And I'm going to invite my colleague Dr.,
00:48Kathleen White to say a couple of
00:50words about her long term collaborator
00:54and friend and Co worker and many
00:56things Doctor Morris Dillard.
00:58So thanks Kathleen. Hi
01:03everybody.
01:05So this lectureship was started by
01:08medical students in the year 2000
01:11to honor Doctor Morris Dillard.
01:14And I don't know that any of you here
01:16look old enough to have known him
01:20he when he passed away at the age
01:24of 89 in 2018, these were some
01:26words that were said about him,
01:29that he inspired legions of medical
01:33students with his model of empathy,
01:36wisdom and brilliance.
01:37There are three things about Morris
01:41that would label him for at Yale.
01:44After, after serving in the Army
01:47and getting his MDPHD at Emory,
01:49he came to Yale to do research
01:52at endocrinology.
01:53That's the first thing we know about him,
01:55and probably the most unimportant.
01:57The second thing is that he was
01:59on the admissions committee,
02:00and he probably interviewed more MD students,
02:04prospective MD,
02:05and prospective MDPHD students than any
02:08single person ever in the School of Medicine.
02:11And he continued with those
02:13students when they came to Yale to
02:17vet them and to be their mentor.
02:20And even after graduation,
02:21he kept in touch.
02:23In fact,
02:23I don't know if any of you know Doctor
02:25Howard Koh or that name Doctor Howard Koh,
02:27but Doctor Howard Koh is I
02:31think he's now the head of,
02:33well,
02:33he's one of the heads of the
02:35CDC or Institutes of Health.
02:37He was actually interviewed by Doctor
02:39Dillard at the here at the medical school.
02:42So that's the second thing
02:43that's most important about him.
02:44But the third thing that's
02:46really the most important about
02:47him is that about 50 years ago,
02:49he was asked by Dean Gifford to
02:51start a clinic on Wednesday evenings
02:54in the primary care center here at
02:56Yale where MDPHD students who were
03:00now in the lab would have their own
03:02cadre of patients to take care of.
03:04And he ran that clinic for over 25 years.
03:08I was a resident in the primary
03:11care Center for my outpatient
03:13care on Wednesday evenings,
03:15and I used to see the students coming
03:17in with food and I'm finishing my
03:19charts and they're putting out a dinner.
03:21And then Dr.
03:22Dillard would come in.
03:22Sometimes he brought the dinner
03:24and I was so intrigued.
03:26And then I heard that he was retiring and
03:28I asked if I could take over the clinic.
03:31Hardly did he retire.
03:33He came every single week in his
03:36retirement for 15 years to that clinic
03:45and taught those students with me.
03:48He was, he was amazing.
03:50He sat with patients
03:51and talked to patients.
03:53He taught humanities of
03:54medicine to those students.
03:56So I'm really honoured
03:57to have had worked with him and
03:59I'm honoured to be able to tell
04:01you about him today. Thank you.
04:05Oh, I'm not sure. Is everyone
04:07waiting for me to start? What
04:10was that? Are
04:11you waiting for me to start or. No, no,
04:13no. I'm going to hit people.
04:15I'm going to introduce you now
04:16and then Randy will take over.
04:18So Doctor Susan O'Sullivan is a neurologist
04:20at London's National Hospital for Neurology.
04:23She received her MD from Trinity College
04:25Dublin and a Master's degree in creative
04:27writing from University of London.
04:29Her books include It's All in Your Head,
04:31True Stories of Imaginary Illness,
04:33which won the Welcome Book Prize
04:35and the Royal Society Book Prize.
04:37Brainstorm the Detective Stories
04:40from the World of Neurology and
04:42the Sleeping Beauties and Other
04:43Stories of Mystery Illness.
04:44Her most recent book,
04:45which was shortlisted for the
04:47Royal Society Sicilians Book Prize.
04:51So welcome Suzanne O'Sullivan,
04:53writer in residence,
04:55Randy Hunter Epstein, Hiding down here.
05:00Strange Vertical Room is a graduate
05:02of Yale School of Medicine.
05:04She teaches at Yale College
05:06in the English department.
05:07She also teaches at the
05:09Columbia School of Journalism.
05:10Her most recent book is Aroused,
05:12A History of Hormones and How They
05:14Control Just About Everything.
05:15And she's working on a book
05:16on the science of stress.
05:17So thank you,
05:18Randy.
05:18I'll turn it over to you.
05:22I am thrilled to be here.
05:24I'm going to lob some questions at
05:26Suzanne in a minute after she reads,
05:29but I want to save plenty of time
05:31for questions in the audience.
05:33And then if you don't have, I have even more.
05:36Two things I want to say.
05:38One is I was interviewed by Doctor Dillard.
05:43So I'll just add to that,
05:45that when I came up for my interview at Yale,
05:48it's killing at this recording.
05:50But I was sort of expecting
05:52Yale people to be, I don't know,
05:55really stiff and harsh and everyone's like,
05:58you're not going to like it there.
05:59And then it was like I was
06:01interviewed by a grandpa.
06:03I mean, he's so warm and nice that I left
06:07and he just that wonderful Southern accent.
06:11And I left thinking, this is everyone
06:13at Yale must be like Doctor Dillard.
06:16These people are the nicest people.
06:19So just wanted to add that.
06:20So I'm so glad that Suzanne
06:22is here honoring his legacy.
06:25For those of you who didn't
06:26get to read her book yet,
06:27just so you're we're all on the same page.
06:31It's written absolutely beautifully.
06:32I've read it now several times
06:34and every time like, whoa,
06:36this is just great, great writing.
06:38I'm such a huge fan girl.
06:40But a quick summation,
06:42and I'm really just this is not
06:45doing justice to the writing.
06:47This is her book is 8 chapters and we
06:49journey with Suzanne around the world,
06:52Sweden, Columbia,
06:54a Nicaraguan community in Texas,
06:57Upstate New York, Kazakhstan.
06:59She's looking at,
07:01I don't know if you could
07:03call them mini epidemics,
07:04but groups of people, often children,
07:07who seem to fall into like a coma
07:10but not coma, or they're sleeping.
07:12They all seem in the same locale,
07:16the same kind of symptoms that can't
07:18be picked up by an MRI or blood test.
07:22We go with her as she grapples
07:25with how do you work?
07:27Well, how do you label things that
07:29don't fall into easy medical labels?
07:32So to give you an idea, I told Suzanne,
07:35who doesn't normally do this,
07:36that we'd love to hear her read
07:38from a few pages in her book.
07:40And I kept saying, oh, this one's so good.
07:42No,
07:42this one.
07:43But I did point out this is towards the end,
07:45Chapter 8,
07:46so we'll take it away with you
07:47just reading a page and a half.
07:50I'm I'm glad that
07:51you admitted to choosing the
07:52pages because of the entire
07:54book. These two pages have the
07:56most unpronounceable words in
07:58foreign languages of every other,
07:59of every other bit of the book And
08:02I I'll be holding that against you,
08:04Andy, but let's see how I manage it.
08:06Thank you. OK, so this chapter
08:09is called normal behaviour.
08:11In Korea, there is an illness called
08:14Hua Byung, meaning fire illness.
08:15It's one of the conditions
08:17referred to as a culture bound
08:19syndrome or folk illness.
08:21The main symptom is a sense of
08:23heat or burning all over the body,
08:24accompanied by a variety of other
08:26somatic complaints like chest
08:28pain and shortness of breath.
08:30In a Western
08:31medical setting, a person with
08:33this constellation of symptoms
08:34might be met with reassurance,
08:36but would also have a high
08:38likelihood of being offered
08:39a large range of blood tests.
08:42Bob Young has a cultural
08:43meaning to Korean people that a Western
08:46doctor would have difficulty appreciating.
08:48It affects middle-aged women in particular
08:50and is associated with the stress induced
08:54by marital conflict and infidelity.
08:56Like greasy sickness,
08:57Huabyang is a language of distress understood
09:00by the community that speaks that language.
09:03The specific symptoms are not meant
09:05to be taken literally.
09:07There are metaphor for a particular
09:09type of psychological suffering.
09:11Huabyang is an acceptable way
09:14of asking for support.
09:16The DSM 5, the psychiatry Bible,
09:18the catalogues,
09:19mental disorders only specifically
09:20names culture bound syndromes belonging
09:23to communities that do not have
09:25English as their first language.
09:27Disorders like Sisto, Shenzing,
09:30Kialkap Nervios that cultural concepts
09:34of distress are defined as the ways
09:36that cultural groups experience,
09:37understand and communicate suffering,
09:40behavioural problems,
09:41or troubling thoughts and emotions.
09:44And so if the DSM
09:455 does not specifically name any
09:47culturally defined disorders that
09:49originate in English speaking,
09:51industrialized westernized communities,
09:53does that mean we don't have
09:56culturally shaped illness?
09:57Are we so open about our suffering
09:59that we have no need of metaphors?
10:03Some western cultures do have medical
10:05complaints that are unique to them.
10:07In France, there is a condition
10:09referred to as Lejean blud,
10:11meaning heavy legs,
10:12that is not commonly seen in other countries.
10:15The medical literature for this condition
10:17is almost exclusively in French. It
10:20is attributed to venous insufficiency,
10:22which is believed to lead to fluid
10:23pooling in the legs resulting
10:25in heaviness and swelling. Apparently,
10:28if a person goes to a pharmacy in
10:29France and reports having heavy legs,
10:32they will be directed to a shelf loaded with
10:34products said to alleviate the symptoms.
10:37One commercial website selling a variety
10:39of creams and gels for Les Jean
10:41Bluewood says it affects up to one
10:43in three women, and yet heavy legs
10:45does not exist as a disease category
10:47in the UK. Lejean lude would not be
10:50referred to as a folk illness or
10:52culture bound syndrome in France
10:54because these are terms more often
10:56used to label people outside of
10:58one's old own cultural community.
11:00It's very difficult to either spot
11:02or talk openly about cultural
11:04idioms within one's own society,
11:07partially because they are
11:08not recognised as such,
11:09but also because they are presented
11:11as biomechanical illnesses and say
11:14otherwise risks forcing something that is
11:16being hidden for a purpose into the open.
11:20I'm a doctor,
11:21trained in the Western medical tradition,
11:22Irish born and living in London.
11:24These are the main cultural
11:26factors that influence my own
11:27health and illness beliefs and I'm
11:29indoctrinated to use that cultural
11:31language when talking about illness.
11:33Like many Western doctors,
11:34I medicalise feelings and behaviour.
11:37People come to me so that
11:38I will do that for them,
11:39give them a medical explanation
11:41for their suffering.
11:42But in truth,
11:43I worry all the time that what I'm doing,
11:45faithful as it is to my training and
11:47welcome as it may be to my patients,
11:50is wrong and potentially harmful.
11:52Thank
11:53you. Thank you.
11:56I'm going to ask you some questions
11:58about both the book and the
12:00writing process and medicine.
12:01You seem to combine all,
12:03but I want to start.
12:04You start your book with this quote.
12:08To try to understand the
12:10experience of another,
12:12it is necessary to dismantle the world
12:15as seen from one's own place within it,
12:18and to reassemble it from his.
12:21That's a quote from not from an English
12:24author that you start your book with,
12:26but from.
12:27It seems opposite of what you're
12:29supposed to learn in medical school,
12:31that you're supposed to memorize a ton
12:33of stuff and then come to conclusions.
12:36So can you tell us a little bit about
12:39why you chose that quote and do you
12:41think it's opposite of your medical
12:43training or it's part of it or.
12:47Yeah, I mean, I think it,
12:48you know, it's it's,
12:49it is phenomenally difficult to sort
12:52of remove yourself from the role of
12:54Doctor Who's supposed to understand
12:56everything in entirely biological
12:58way to the view of a patient who
13:01might have a view that kind of
13:03jars entirely with your biology.
13:04If we take for example a case in
13:07the book where there are a group
13:09of young women in Guyana in South
13:12America who are having contagious
13:14seizures and those people believe
13:16absolutely that their seizures are
13:18due to a spirit comes down from the
13:20mountain and is is haunting the school.
13:23Now that's not a belief that
13:25you know would work within our
13:27most of our belief systems.
13:29When when this outbreak of
13:30seizures happened in Guyana,
13:31an American psychologist went to Guyana
13:34and diagnosed mass hysteria and said
13:36this was all kind of a an anxiety
13:39panic related phenomenon and this
13:41community completely rejected that.
13:43Now the reason I'm I'm raising this
13:45in answer to your question is because
13:47the point is that these girls,
13:49they they were insulted by us reducing
13:52everything to biology and psychology
13:55because that's what Western doctors do.
13:57We want to understand everything
13:58in terms of you know,
14:00what's a neurotransmitter doing,
14:01what's the biology doing.
14:03But sometimes what we have to do is
14:04try and understand what the patient
14:06is trying to tell us with their
14:07symptoms in a more metaphorical way,
14:10so that we can kind of understand
14:12their point of view better.
14:14Because the alternative is that we
14:16approach every patient telling them
14:18they're wrong and their theories are
14:20wrong and we set up a combative relationship.
14:22So I think really for me,
14:23what?
14:24What what I'm trying to do in this book,
14:26but what I'm trying to do better
14:27myself as a doctor and I have
14:29to say I don't do it well,
14:30is is work better with my patients
14:33formulations because sometimes
14:35it works to say listen, no,
14:37it's not to do with electricity,
14:39pylons or vaccinations there
14:40that's not why you're sick.
14:42It's because this psychological
14:43thing is happening or this
14:45biological thing is happening.
14:47And that works for some people,
14:48but for other people they just are.
14:50So their symptoms are so embedded in
14:53their belief system that all you do do
14:55by giving those sort of explanations
14:56is back them into a corner where
14:58they have to fight against you.
14:59And if you can learn to put yourself
15:02in into those people's shoes
15:04and work with their formulation,
15:07that is a much better way to
15:09work for some people.
15:11Which is exactly the opposite of
15:12what we're taught to do as doctors.
15:15We're taught to just dismantle
15:16everything and say,
15:17you know,
15:18here's the biological explanation and
15:19and when the patient doesn't agree with us,
15:21we get into arguments with them.
15:23And we have to learn not to do that,
15:25to recognize when that's not going to work.
15:28Thank you. And it's interesting
15:29when you talk about, when you're
15:31sharing your feelings now about this,
15:34you write the book in first person,
15:37which is interesting because we
15:41hear you grappling with this.
15:43I mean, we can feel your groundedness
15:45in medicine and we hear you grappling.
15:48You at one point say you were worried you
15:50were going to cry talking to a patient.
15:53You talk about your vulnerabilities.
15:55Was this something as a writer?
15:57Did you before you even ventured
16:00off to Sweden?
16:01Did you plan on writing this as
16:05first person and being so open about,
16:08oh I shouldn't have said it this
16:10way or or or or worried about
16:12how you would make sure you were
16:14respecting their beliefs.
16:16I mean I I I definitely as a writer
16:20I don't think very consciously about,
16:23oh how am I going to do this?
16:24You just you right as you feel
16:26you right as you tell a story,
16:28as it would come out of you naturally.
16:30So I didn't. It wasn't a very,
16:31very conscious decision.
16:33But I can also understand why I wrote it
16:36the way that I did in the first person.
16:38Because this book particularly was
16:40a very big learning journey for me,
16:43because I was going to countries and
16:46communities where I really didn't know
16:47anything about the cultures or the people.
16:50And I was trying to understand something
16:52from the perspective of people whose
16:55cultures were so different to mine.
16:57So it was enormous learning
16:59kind of curve for me.
17:01I had to sort of really kind of not be
17:05the extremely technical London-based
17:08medical doctor that I was and start
17:10seeing things from another perspective.
17:12So what I was trying to do when I wrote
17:14in first person, although I again,
17:15I didn't do this consciously,
17:17I think I was trying to take
17:18people on my journey, you know?
17:19Yeah,
17:20I used to understand it the way you did.
17:22But then I met these people and
17:23I thought about it differently.
17:25And now I understand it differently.
17:26And I feel that that's a good way
17:28to teach people is to sort of,
17:30you know,
17:30take them on your train of thought
17:33and on your learning journey.
17:35But also the stories are very they're not
17:37just about the people I'm writing about,
17:38They are about me.
17:40They are about sort of,
17:41you know,
17:41I walk into a community about
17:43which about whom I know,
17:45know nothing and kind of wander around
17:48slightly aimlessly for a while sometimes
17:51until I begin to figure it out.
17:54And I think that's an important
17:55part of the journey because you
17:57know I'm learning a new perspective
17:59from these amazing people who are
18:01generous enough to teach it to me.
18:04And your detail is wonderful and we,
18:07I think that's what makes the book so
18:09riveting also is we do feel that we're
18:11with you and we're kind of shocked about
18:14what you see and what you're hearing.
18:16So from there's a lot of writers in
18:19the audience here from the just the
18:22technical part because it is just
18:24wonderful how you bring in dialogue
18:26and I think that's what really gets,
18:28keeps the narrative going.
18:31Did you have like,
18:32were you writing down as you saw like how
18:34did you capture that or was it memory?
18:36Did you go back to people and say I'm
18:38using this sentence that you said,
18:40is that OK? Actually
18:42I record everything so because I can't
18:45listen properly if I'm not recording.
18:48So when I was there,
18:49I just recorded every conversation I
18:51have so that I can kind of pay proper
18:54attention and ask questions as I go.
18:56It also slightly helped that I was
18:58working or it helped and didn't help
19:00that I was working with a translator.
19:02Most of the places I went to,
19:04because I went to Kazakhstan and places
19:06where I I didn't speak the language and
19:10I found that I had like about 5 minutes
19:12between every question to to make a
19:14note of everything that was in the
19:16room and everything that was happening.
19:18So they were quite slow conversations because
19:21they were happening through an interpreter.
19:23But I so for my sort of feeling of the
19:25surroundings and for what I'm going through,
19:28I'm taking notes the whole time
19:30when the interpreters talking,
19:31but I also record everything.
19:33I think recording is great because
19:35basically it's if you try to take notes,
19:37you look back at your notes at a
19:39later date and you you just can't
19:41completely make sense of them or you
19:42left a bit out and you wish you hadn't.
19:44So yeah,
19:45I think recording really adds to
19:47the the authenticity of the detail.
19:51And your first book, well,
19:52I don't know if it's your first,
19:53but the book before this one,
19:55it's all in your head.
19:56You write about your own patience.
19:58This book I think was your first where you
20:01went to visit and you're kind of a doctor,
20:03but you're not a doctor
20:04and you're a journalist,
20:06but you're not a journalist.
20:07And how did was that a
20:09comfortable transition for you?
20:10Was it easier to be like,
20:12OK, I don't have to,
20:13this is a one time shot and
20:15I'm not trying to cure you.
20:16I'm just writing
20:17about your story.
20:18Yeah, no, in the in this latest book,
20:20I mean, I I would basically,
20:22as my agent knows,
20:23like for the first year after,
20:25you know, I said I told my
20:27publisher I'd write this book.
20:28They agreed to pay me for writing
20:30the book and then for about the
20:32next year I tried to contact people
20:34in Kazakhstan and Colombia and
20:36Nicaragua and everywhere just to tell,
20:38to read some, tell me their stories.
20:40And I'd never done anything like that before.
20:42And I have to say that that possibly
20:44was the worst year of my life.
20:46I mean, I just, I'm not.
20:47I'm not trained in this.
20:48And I had to just suddenly
20:50learn how do you make contacts?
20:52How do you, how do you function more
20:54like a journalist and not like a doctor?
20:58So making the contacts in the first,
21:00for instance,
21:01was phenomenally difficult.
21:03But then when I visited the people,
21:04I also found that doubly difficult
21:06because as you say, in the past,
21:08I've written about my own patients.
21:10So if my own patient comes to me and says,
21:12you know, my seizures are terrible and all
21:14these awful things are happening to me,
21:16I have the power to help them.
21:17You know, I have the power to to give
21:20them treatment or to refer them to someone.
21:22But the people in this book were telling
21:25me these really tragic stories and all
21:27I could offer them was my listening ear.
21:29And I have to say,
21:30I'm still uncomfortable with it.
21:31I still struggle with with the
21:34morality of it sometimes is,
21:35is it OK to travel around to to
21:37different communities and just
21:38listen to the stories and walk
21:40away and leave nothing behind?
21:41But the book you're going to
21:43write from which they possibly
21:45won't gain in any way whatsoever.
21:47And I mean the conclusion I
21:48came to is that you know,
21:50we have to tell story.
21:52You know,
21:52if if people's stories aren't heard,
21:54no one will ever get help and no
21:56one will ever learn.
21:57But I I did feel uncomfortable not
22:00being able to function as a doctor,
22:02and I found myself sometimes kind
22:04of giving advice when I felt like
22:06maybe I shouldn't be giving advice.
22:07It was a very difficult line
22:09to tread for me that, yes,
22:10I was quite uncomfortable with.
22:12Yeah,
22:14Did you afterwards then
22:17did you go back to the.
22:20I guess it's part even through a translator,
22:22but did you go back over the
22:25drafts and say this is how you're
22:27going to be portrayed or were
22:29there times that people then
22:31said actually you visited me?
22:33Because we won't know this from the book.
22:34Don't put my story in.
22:37No. I mean, I haven't been
22:39back to the communities,
22:40but they are very far away,
22:42far-flung communities.
22:44And I also I didn't I if I'm
22:48writing about people, you know,
22:50some people will request to
22:51see what you're writing.
22:53No one in this particular book
22:54actually did make that request.
22:56But in other things I've written,
22:57people have requested to see it.
22:59And if someone requests to see
23:01my writing before it's published,
23:02I will allow them to see it.
23:03But you know, I don't promise anybody
23:06any any sort of editorial sort of,
23:10you know, it's not a very truthful story.
23:12If I need to bend it to their
23:14to their view of of it,
23:16I have to tell it as it was told to me.
23:20So I didn't show it to any of these people
23:23because none of them asked and I don't offer,
23:25I wait to be asked and I I don't know,
23:29I I I wrote in English and you know,
23:32the book isn't in Kazakhstan,
23:33isn't in Kazakhstani.
23:34And I,
23:35I don't know if the communities
23:38have actually read the book.
23:41I sent the book to the translators that
23:44I worked with because they were the only
23:46real contacts I had for the communities.
23:49But I haven't kind of heard
23:51anything back from that.
23:52So yeah,
23:53I mean that's another way in which
23:55it's quite a for me as a doctor
23:58because I'm used to intervening
23:59or helping or contributing.
24:01It was quite a difficult part of the process.
24:03Also,
24:04as you just send the work out there and
24:06you hope it it has some positive effect,
24:08you hope nobody's feelings are hurt.
24:11I do try very,
24:12very hard when I'm writing not to,
24:15you know, I think it's it's very easy
24:16to be salacious when you're writing,
24:18to write the most outrageous details
24:20so that everyone will go, wow,
24:21I I absolutely try not to do that.
24:23I leave out,
24:24you know,
24:25things that other people might put in.
24:27And I've tried very,
24:28very hard not to hurt people's
24:30feelings because I feel myself,
24:31I'm a doctor more than I'm a writer.
24:35So I I try to write as a doctor.
24:38But truthfully,
24:38I don't know the impact of the
24:40book on the people I wrote about.
24:42Well, that's interesting that you
24:44were saying just now you're a
24:45doctor more than you're a writer.
24:47Because I wanted to ask you about
24:49that in terms of your career journey.
24:53And maybe you just answered it,
24:54but were you always sort of writing
24:56and then you decided to go to
24:58medical school and then afterwards
25:00you got this Masters to then say,
25:03OK, I want to go back to what
25:05I've always wanted to do.
25:07Or did you go into medical
25:08school and feel like, wow,
25:10there's all these amazing stories.
25:12I should get some skills.
25:14This is something I've
25:15never thought about before.
25:17Yeah, I know. I mean,
25:17I find I do everything in life backwards
25:19and in the wrong order in some way.
25:21So it was nothing like any.
25:23There was no meaning or intention.
25:24And I mean, when I was about nine years old,
25:28I decided I want to be a writer.
25:30And I remember writing my first book,
25:31which was like, you know,
25:344 pages long or whatever, you know.
25:36And so I always wanted to be a writer.
25:39But you know what I I grew up in Ireland
25:41in the 1980s and I can tell you,
25:43you didn't tell your mother and father you
25:45wanted to be writer in 1980s in Ireland.
25:46Because they would just look
25:47at you and just think, well,
25:48you know you who's going to,
25:50who's going to feed you,
25:51who's going to look at you know it would
25:53just didn't that that didn't exist.
25:55I didn't come from the kind of
25:57background it where you would have
25:59the luxury of being a writer.
26:01So when I left school,
26:02I was actually talked out of being a
26:04writer by my mother, which I don't.
26:07I don't think was the wrong
26:09decision and I did medicine,
26:11which obviously is completely different,
26:12but I never quite forgot that
26:14I wanted to be a writer.
26:16I read a lot,
26:17but I between the ages of like 18
26:20and 40I I didn't write a single word.
26:24And then and then basically
26:26I I kind of got to that age.
26:28I maybe you're get to an age where you think,
26:30well, you know,
26:31I haven't fulfilled any of my ambitions.
26:33I can either fulfil them now or
26:35just stop thinking about them.
26:37So I just decided to write a book,
26:38and I wrote a novel actually,
26:40and I sent it to an agent and I
26:41got an agent and she told me to
26:43write about my work.
26:44So I actually wrote about my work
26:46because of someone else's suggestions
26:48that never really occurred to me to do,
26:51but it's all worked out OK,
26:52so I don't regret it.
26:53And funnily enough,
26:54I didn't do the Masters in Creative
26:56Writing until after my first book
26:58and after I'd won the welcome book
26:59prize because I kind of thought,
27:01Oh my God,
27:02I'm I'm a writer and I don't know
27:03how to write.
27:04I'm a writer and I've no one's ever
27:06taught me anything and I don't
27:08know this world. I better learn.
27:10I'm very pro education.
27:11So I just thought,
27:12better go to college and learn
27:14something about writing.
27:16But technically I was already writing.
27:18But then I thought, you know,
27:20I'll get a bit more education and
27:21be a better writer
27:23and did it help? I mean or did you
27:25kind of feel like this was silly,
27:26like you don't need to get that graduate
27:28degree? Do you know what helped a lot is
27:30it was the first, it was the first year.
27:32You know, I we go to,
27:34we go to university very young in Ireland.
27:36I went to university and started
27:37studying medicine when I was 17, which
27:39is obviously completely different to the US.
27:42So I was a doctor when I was 23 and
27:44then I worked continuously as a doctor.
27:46So from 17 till whatever age I was
27:50continuously working and then I as a doctor.
27:53And then I took a year off and did a
27:55creative year of creative writing.
27:56And I'm not going to lie to you,
27:57a lot of it was spent in the pub, Randy,
27:59but you know, that's also a cultural,
28:02A cultural Irish thing.
28:03It was a wonderful experience because,
28:06you know, for the first time in my life,
28:07I had a whole year where I got to
28:10exchange stories with other people.
28:11I got to read poetry and it was
28:13just a wonderful, wonderful year.
28:14Did it help my writing?
28:16I don't know,
28:17But it it definitely enriched
28:18me as a person for sure.
28:21OK, I I'm going to open this
28:23up now and I guess people ask
28:26questions and if you can't hear,
28:27I'll just repeat them. Does anyone?
28:30And I can just keep going,
28:31but I'd love to hear from people in the
28:33audience if you have questions about
28:34her writing process or the book or
28:39and just also say your name and
28:41whether you're a medical student
28:43or resident or. And I'll. Yeah, Hi.
28:47Thank you so much for
28:49being here with us today. Your leverage
28:51is my name umbrella.
28:52I'm a fellow. And Jerry,
28:56I'm kind of curious about
28:58the year that you spent.
29:00You know we come out to people
29:02that's like Columbia Classic
29:04started the place that you went.
29:06You know, finding the translators
29:07that you've worked with.
29:09I'm I'm, I was curious to hear
29:11more about what that process was
29:13like for you connecting with
29:15different people and you know,
29:17finding these people to partner with.
29:19Can
29:21you can you hear that?
29:23I could hear that, yes. And yeah.
29:25I tell you what I mean now
29:27that I know how to do it,
29:28it's not so hard. But I mean,
29:30I didn't know how to do it at the start.
29:31And I mean, it was phenomenally
29:34stressful because, you know,
29:36so let's imagine there's a village
29:37in the middle of Kazakhstan.
29:39Only 300 people live in that village,
29:42and there's a sleeping sickness
29:43attacking that village.
29:44And somehow I have to kind of find
29:47somebody who will allow me to speak
29:49to these people in Kazakhstan.
29:51So the way I eventually figured
29:52out that you do it,
29:53I think there's an industry standard,
29:55probably way of doing it,
29:56but I had to learn what that was,
29:58is that basically I read every
30:00newspaper article on this sleeping
30:02town in Kazakhstan and then I started
30:04contacting the journalists who had
30:06written and many of those were kind of
30:09local or Russian speaking journalists
30:12because they'd visited the town.
30:14So there was kind of a network
30:16and I've discovered there's a
30:17network of what they call fixers.
30:19So basically fixers would are usually
30:22local journalists that live within
30:24a particular country who will,
30:27you know,
30:27escort you and show you where
30:29to go and translate for you.
30:31So I kind of learned that,
30:32you know,
30:33really I needed to go through local
30:35journalists to get to these remote
30:37difficult to get to places and that
30:39they would sort everything out for me.
30:41But the consequence of that was
30:42I was doing things like getting
30:44on the plane and just, you know,
30:45getting off the getting off
30:47the plane in Nour Sultan,
30:48Kazakhstan or in Cartagena,
30:50in Colombia or wherever,
30:52and just having to just meet a
30:54complete stranger who I only knew
30:56through a Hotmail account or whatever.
30:58So yeah, it was like kind of terrifying,
31:01but in the end it was exhilaratingly
31:03brilliant because there is nothing in
31:05the world like going to a remote place.
31:07Like we can all go to Columbia
31:09on our holidays.
31:09It's not that difficult.
31:11But what we can't do is go to Columbia
31:13and and go into local people's homes
31:16and eat with them and you know,
31:17see what the their lives are really like.
31:20We can only really do touristy
31:22things in all these kind of places
31:24that are that we don't come from.
31:26So it was, yeah,
31:28the whole thing was terrifying,
31:29but it ended up being one of
31:31the best experiences of my life.
31:33I got to experience other cultures
31:35in a way that you just could not.
31:38You just couldn't in any other circumstance.
31:41I'm going to call someone
31:42else in a second, but I just want
31:44to push that question even further.
31:47So on the one hand, I'm assuming
31:49a lot of your patients in London,
31:52it's not through an interpreter.
31:54There might be some that are,
31:55but you're having this intimate conversation
31:58and with the interpreter might have,
32:01you might have lost something in translation,
32:03but yet the patients you see in
32:05your clinic are in a clinic,
32:06you're not in their home.
32:08So do you feel,
32:10I mean, how do you balance what
32:12you thought you got more out of
32:13or less like the winds and losses?
32:15Yeah, you're right.
32:16It was kind of swings and roundabouts.
32:17It was sort of like, you're right,
32:19trying to talk through a translator
32:21is is difficult because you know,
32:24that nuance is being lost.
32:26And I would often have to stop
32:28the interpreter and say, you know,
32:30can you ask the question this
32:31specific way and can you give me
32:33the answer exactly as she says it?
32:35Because I was always worried that they were,
32:38they were sort of translating
32:40at another level, you know,
32:42So I I definitely lost something in
32:44the stories through the interpreter.
32:46But I I gained something
32:48enormous through just, you know,
32:50actually being in these people lives as
32:52opposed to being in clinic, as you say.
32:54So yeah, I'm, I mean,
32:55it would have been wonderful
32:56if I spoke more languages,
32:57but visiting people in their home
32:59and they were so generous and I ate
33:02a lot of very unusual foodstuffs,
33:03I have to say,
33:04which is not a strength of mine.
33:07But yeah, no, Yes,
33:08there were gains and losses,
33:10I think,
33:10in the way I had to do it.
33:11Was
33:14there a particular moment when
33:15it struck you that This is
33:17why I'm doing what I'm doing?
33:20OK, say your name and
33:24writer, writer, journalist and a sister.
33:31Yeah. So basically, did she mean in terms of
33:35doctoring or writing or or
33:37everything? What happens
33:40in your travels in Kazakhstan
33:42or Colombia, wherever?
33:43Oh, yeah. In the travels, Yeah.
33:45Yeah. I. Because basically,
33:47you know what, I definitely approached
33:51stories with a real point of view,
33:53you know, so I'm, you know,
33:54I can't help but I'm, I'm quite,
33:56I make my mind up quite quickly.
33:58That's just my personality.
33:59So I would go somewhere like
34:01Kazakhstan and I'd seen pictures of
34:03this town before and it was decrepit.
34:05It was absolutely, you know,
34:07if you saw the pictures and the way the
34:09journalist took the pictures were really,
34:11it was always like the people who are
34:13affected by the sleeping sickness.
34:14They were always in, you know,
34:16really old dressing gowns and,
34:17you know, old kind of clothes,
34:19booths and, you know,
34:20standing beside crumbling buildings.
34:22And I was I I looked at these
34:23pictures and I thought, Oh my God,
34:25I'd fall asleep in that town too.
34:26It looks so depressing.
34:28But then what would happen is
34:30I'd go to the town and yes,
34:32there would be crumbling buildings and yes,
34:34the people would be poor.
34:36But then, you know,
34:37they really did genuinely open my eyes,
34:40you know, I would suddenly,
34:42by being in those places,
34:44the stories,
34:44I would hear them so differently when I
34:47actually spoke to the people in the place,
34:50you know.
34:50So for example,
34:51the crumbling town in Kazakhstan just
34:53turned out to be the most amazing.
34:55It had been this phenomenal kind of
34:57town that had served these people
34:58astonishingly well for many, many years.
35:00And they were deeply in love with it.
35:02As crumbling as it looked to us,
35:04they were,
35:04they were having a love affair
35:06with this town that was crumbling,
35:07and it was very difficult for them.
35:09So I found that when I visited
35:11the places I went with a point
35:13of view that always changed.
35:15So it was always worth it.
35:17And I I very much learnt as I went
35:21and and I'll add to that a little bit.
35:23So it sounds like you went with something
35:26on your mind and then it kind of
35:29opened you up to a different direction.
35:31Has this experience of working
35:33on this book do you think changed
35:36you as a doctor in the clinic,
35:38when you see patients,
35:39are you asking more about
35:40their home life or what's
35:42going on? I've always had, because I
35:45work in sort of with chronic illnesses,
35:46I've always had the kind of doctor
35:49experience where, you know,
35:50it's not just to see them once goodbye,
35:52you know, it's I do have sort of
35:55relationships with my patients,
35:56so I'd already know quite a lot about them.
35:58But I think what's changed is
36:01I've always had a very, you know,
36:04a very biological way of
36:06approaching everything, you know.
36:07And I I have been one of the
36:09doctors who get into the situation
36:10where the patient says, you know,
36:12it's definitely the COVID vaccine
36:14that caused my paralysis, you know,
36:16And I'm, I would have very much
36:18been the doctor before he said,
36:19well, these are all the biological
36:22reasons why that's impossible.
36:25And that's fine.
36:26Some people will take those biological
36:28reasons and say, I agree with you.
36:29Thank you. I feel better now,
36:31but some people wouldn't.
36:32And then you get into this,
36:33they're going, it's the vaccine and
36:35I'm going it's not the vaccine And I,
36:36you know, you get that and I'm,
36:38I think from this book,
36:39what I learned is that you have to,
36:40once you realise that your biological
36:42explanation isn't going to work,
36:44you have to find a way to
36:46work with their formulation,
36:47which I have to say is
36:49phenomenally difficult.
36:49But I think that's what I from
36:51my own personal practice,
36:52what I took away from this book is,
36:54is learning to work better with
36:56my patients rather than against
36:58them when we're in disagreement.
37:10Thank you for joining us.
37:11My name is Tyler Harvey.
37:12I'm a third year medical student here.
37:15So the stories that we encounter
37:17are the stories that are told.
37:20There are many,
37:20many other stories out there that
37:22are not told and we never come by.
37:24And I think something I appreciate
37:26about misleading beauties is
37:28to told stories that otherwise
37:29would have maybe been overflowed.
37:31But it overwhelms me a little to
37:33think about all the stories of the
37:35world that we may never end now.
37:37So my question to you is how do we,
37:39that's like we go about giving
37:41attention and telling those stories.
37:46Well, I guess maybe we need a
37:47lot more writers in the world.
37:49I mean, you know, I'm glad you said that
37:50because it makes me because as I said,
37:51I'm, I'm wrangling with this sort of,
37:54is it, you know, where do you
37:56draw the line between taking
37:58advantage and telling a story?
37:59So I'm glad that you're very
38:01much in the side of, you know,
38:03stories need to be told and
38:04people's stories need to be heard.
38:11How do we tell more stories?
38:12Well, I guess the only answer to
38:14that is once you've qualified as
38:16a doctor, you'll have to become
38:18a writer as well and and share
38:20the share the burden with me,
38:26Anna speaking. So my question
38:29is where do you keep on,
38:31where did you get the idea for
38:33all of these different stories?
38:34Were they news articles?
38:35Were they piercing colleagues?
38:39Yeah. So I'm I'm a neurologist
38:41and my interest, epilepsy,
38:43is my actual kind of main main job.
38:47But I also as a a very,
38:51I see an awful lot of people with
38:52what we call psychosomatic disorders.
38:54So these are people with seizures for
38:56purely psychological reasons or paralysis
38:58for purely psychological reasons.
39:00And that was the subject of my first book.
39:02So I'm I'm very,
39:03very interested in how sort of psychological
39:06factors can cause physical disability.
39:09And I've noticed for a long time that,
39:11you know, there's very particular ways that
39:14we talk about these things In the media.
39:16They're always referred to as mystery
39:19illnesses, mystery outbreaks.
39:20Whenever I pick up a newspaper,
39:23I log on to a news station and I see
39:26mystery illness breaks out here or there.
39:29I just know.
39:29I just know that if I read it,
39:32it will eventually say something
39:34about this being more likely to be
39:36a psychological thing, you know?
39:37So we have this weird thing that
39:40that we call psychological things,
39:42mystery illnesses,
39:43because we still can't face them head on.
39:45We still can't quite admit to them.
39:47For that reason.
39:47I'm fascinated by the whole thing,
39:49how we talk about them.
39:51And therefore, on Google,
39:53I have alerts for mystery, illness,
39:55mystery, outbreak, mass hysteria.
39:59Nothing to do with writing this book.
40:01I already have alerts for those,
40:02So I know if something if there is some
40:05weird outbreak happening somewhere,
40:07I'm just interested to find
40:09out more about it.
40:10So I've been picking up on all
40:12these things for absolutely years.
40:14On mystery illness alerts on
40:15Google and not really with the
40:17intention of writing the book.
40:18But then when I decided to write the book,
40:20you know,
40:21I just had,
40:21I just had so many cases that I
40:24could write about.
40:25But then the problem was narrowing
40:26them down so that every case had
40:29to teach us something different.
40:30You know,
40:31so there are so many outbreaks of
40:37young women having seizures in school.
40:39There's just, there's just hundreds of them.
40:41There's, you know,
40:42at any point in time there's loads of
40:44these outbreaks and they're always
40:46reported as mystery illnesses.
40:47So as I had a big catalogue of them
40:50just because I'm interested and
40:52then I had to sort of figure out which
40:53ones would tell the stories best You
41:00talk about how about like welcoming
41:03these people where they can talk to it's
41:06going to be a service programming like
41:08why don't more about what the closest
41:12reaction is for like was it work as a
41:15doctor hoping that you help them or are
41:17they just happy to share their story.
41:19They know like sometimes being heard and
41:23sharing your story and wondering what what
41:27their reaction for either to go to go.
41:32Yeah. I think that I think that you know
41:34they did welcome me in part because I was
41:37a doctor because I think they're used to
41:40being visited by journalists etcetera.
41:42So I think when I contacted them I
41:44would imagine the fact that I was a
41:46doctor made me stand out a little.
41:47However, when I visited the communities,
41:51I was really, you know,
41:53they really didn't want anything
41:56from me but to tell tell the story.
41:59I I was holding myself back a little
42:01bit from giving them medical advice
42:03because I knew it wasn't my place,
42:05but they were.
42:06They were never asking for it,
42:08but they really wanted was, you know,
42:11because usually these people that I visited,
42:13they already had been through this
42:14for a long time and they had quite
42:16strong ideas about what was happening
42:18to them and what they wanted more
42:19than anything was was for that to
42:21be heard and for that to be told.
42:24So I didn't really encounter
42:26anyone who personally seemed to
42:28want medical advice from me,
42:30but I do think the fact that I was a
42:32doctor made them a bit more willing to
42:34talk to me because they had a sense that
42:36I would understand this differently,
42:38say than a non medical person.
42:41But no, I I mean,
42:42I I just got the sense they wanted to tell
42:45their stories and usually what I was to to,
42:48because I was sometimes
42:50uncomfortable with it,
42:51not knowing where the line was.
42:52You know, what I did most of the time was
42:55to ask people what do you want from me?
42:57Like if there's something really
42:59important that you want to say.
43:00If I'm writing about this,
43:01what is it that you most want me to say?
43:04And I still do that with anything
43:06I'm writing now.
43:07And I make sure that I know what
43:09they want me to say.
43:10So that even if we're not in
43:11agreement on everything that I
43:13know that I have made them their
43:14most important point for them.
43:16So I think they really
43:17wanted me as a storyteller,
43:18but as a qualified storyteller.
43:23Hi, my name is Emily.
43:24I'm community member.
43:25I'm not quite exactly sure how to
43:27ask this question, but I don't hear
43:30you saying the word validation.
43:31And so are they also looking for a
43:34validation that their perspective is,
43:37you know, is, is is worthy versus maybe
43:40a more Western medical perspective?
43:44And also I heard you say, you know,
43:47I understand logistically that it would
43:49be hard to have somebody, you know,
43:53looking at what you've written.
43:54But if they're looking for validation
43:56and they're looking for their story to be
43:58told in the way that they understand it,
44:01you know is there a role for you And I
44:03I have read the book the spirit catches
44:05you and you fall down which I think
44:08you know I haven't read your book.
44:09So I have some understanding of kind
44:11of how you know seizure or disorder
44:12you know could be understood and
44:14through blood and from different
44:16communities perspective.
44:17But I am wondering you know if any of
44:19your if any of the situations that you
44:21were in there were people wanting some
44:24validation that it was the way that
44:27they were you know that that there
44:28was some versus a a Western medical
44:32community. Oh yeah,
44:33I mean I think definitely not so much
44:37validation as people did not want
44:40to be disagreed with I would say.
44:42You know, so I think they had an
44:45expectation that I was unlikely
44:47to sort of you know so if a
44:50community believes that the.
44:52Well, I I visited a community in
44:54South America where they absolutely
44:56were convinced the HPV vaccine was
44:58responsible for an outbreak of
44:59seizures in 1000 girls and that
45:01was a very tense tense atmosphere.
45:05They didn't when I was there
45:07seek for me to
45:11to find evidence to prove them right or to
45:14agree with them so that they felt validated.
45:16But they most certainly,
45:18you know we had to dance very delicately
45:20around whether you know because I
45:22didn't agree with it obviously.
45:24So it I think it was like what what
45:26I've had to learn to do in clinic,
45:27which is respect their point of view
45:30but also try and suggest another point
45:33of view to them and agree to differ.
45:36But I think that no one was specifically
45:38looking for validation from me.
45:40But again, they were very
45:42most the groups I visited.
45:43They had very definite ideas,
45:45and they didn't need validation.
45:46They'd validated their own ideas.
45:48They were very, very definite.
45:52They didn't want me to kind of go out
45:54into the world and say they were right.
45:56They wanted to have their stories told.
45:58I didn't agree with them all the time
46:01because I didn't agree with them.
46:03For example, particularly on
46:04the case of the HPV vaccine,
46:06which seems to be harming the community
46:08by lowering the uptake of HPV vaccine.
46:12So we had to have very delicately
46:15balanced conversation where I I listened
46:16to their point of view and said I
46:18would put their point of view across.
46:19And in the book.
46:20What I tried to do is not not say this
46:23person's wrong, that person's wrong.
46:25These are all the reasons this
46:26I put people's point of view.
46:28I put my point of view,
46:29Let people make up their own minds.
46:32But no, I think, yeah, validation.
46:33No, I think they already had
46:35their validation from their own
46:36theories and their own groups,
46:38but they certainly didn't want me
46:40to dismantle their their theories.
46:48Thank you for coming to speak with us.
46:50I needed Ariel and then student.
46:52I saw on the back of your book one of
46:55the reviews compared to your novel.
46:56Oh, can you hear me?
46:57Or not? Really. Yes. OK.
46:58I saw on the back of your book one of the
47:01reviews that compared it to Oliver Sacks,
47:03the man who just took for a hat.
47:07I'm reading that book I thought
47:08was very interesting because
47:09at the time when he wrote it,
47:10a lot of what he wrote about this very
47:14unknown and it was very much presented as
47:17look at these amazing medical history,
47:20yeah, we have a lot of biological
47:23basis for some of the very reliably
47:25pinpoint the location of the we
47:28should something like, right.
47:31So it follows from my admittedly very
47:34inexperienced medical student point of
47:36view that at some point in the future,
47:38maybe we as a society will be able to do
47:40that as well for the situations we're not.
47:43Also, maybe we'll be able to.
47:45Yeah, yeah, basis.
47:48But we can still understand more
47:50the physical manifestations of the
47:52psychiatric basis and have more of a
47:55field of neuropsychiatry rather than
47:56neurology and psychiatric being distinct.
47:58I'm wondering if that's a nature
48:00that you can conceive of and have
48:03an idea of what that would look
48:04like or what it's time like,
48:07I didn't quite catch the end there.
48:09What was the question at the end,
48:11just whether that's a future.
48:13You can see about that.
48:14We all have an explanation. I mean, we
48:18we just have. So yeah,
48:19I mean first of all I mean any neurologist.
48:22I know a few neurologists who are
48:24riders and and they're all constantly
48:25compared to Oliver Sacks. Quite frankly,
48:27nobody compares to Oliver Sacks.
48:29I'm happy for them to put it on the book
48:31because the publicity people love that stuff.
48:34But is it truthful?
48:35I'm I'm not absolutely convinced.
48:37But I think that basically we we can
48:39look back at Oliver Sacks writing
48:42and just really admire the way the
48:44man sort of the way he understood
48:47how the brain worked before we had
48:49any of the technology to really
48:51let us know how the brain worked.
48:53And the way he dissected out his cases
48:54and the fact that we now know maybe some
48:56of the things he thought were wrong.
48:58Because medicine has moved on,
49:00I don't think detracts in any way from,
49:02you know, his amazing writing,
49:03particularly in the man Who Mistook his wife,
49:05Farhad.
49:06I know the things I'm writing about are all
49:10are massively there's just so much to learn.
49:15So there is no doubt in my mind that at
49:18some point in the future all of this
49:20will be dismantled and and perhaps you
49:22know any medical theory I might have in
49:25my book might might turn into a nonsense.
49:27Who knows.
49:27It's certainly possible because we don't
49:29have any great signs on this at the moment.
49:32I hope that as a book the stories
49:34will still stand and it's a little
49:36bit like this is how we learn.
49:38We we we tell stories and we make
49:40mistakes and we tell more stories
49:42and everything is slowly revealed.
49:44I hope that books still have value when
49:47the science moves on and we learn more,
49:50but we're very,
49:51very far away from understanding what
49:53I've been writing about in this book.
49:55You know,
49:56it's it's only in the 21st century that
49:58anyone has even tried to understand the
50:01neuroscience of psychosomatic disorders.
50:03Up until the end of the 20th century,
50:06it was still being, like,
50:07widely dismissed.
50:08So we're 1,000,000 miles away from
50:12anyone taking my book off the shelf
50:13and saying what a load of nonsense,
50:15hopefully.
50:16But basically,
50:18I think that I hope the book stands
50:20up through the stories when,
50:22when,
50:22when we understand the science
50:23better and some of my theories
50:25will turn out not to be correct.
50:26Thank
50:28you very
50:31much. I'm Grace.
50:32I'm a member student in the nursing school.
50:34And one thing I've been thinking a
50:35lot about in the past couple weeks,
50:37given the state of the world and
50:38our current events, is what we share
50:40kind of in our collective humanity.
50:42And I'm curious to know,
50:43as you travelled around the
50:44world to different communities,
50:45what feeds you saw, what folks shared,
50:48whether in their experience of their
50:50own culture or the institutionalized
50:52medical system or their own belief systems,
50:55that sort of.
50:56I haven't, I apologize.
50:57But how you drew those.
51:00Yeah, yeah, I mean, I I noticed.
51:03Well, there were things about every
51:06community that were the same,
51:09and then there were things that
51:10were completely different.
51:11So what was always the same was the way
51:15biology reacts in the context of, you know,
51:19conflict and stressful situations and
51:22and psycho psychosocial triggers the way
51:25the biology reacts in that situation.
51:28It reacts the same everywhere.
51:30So whether you live in an indigenous
51:32community in Nicaragua where
51:33you have no electricity,
51:35or whether you live in a
51:36sort of upstate New York,
51:38it doesn't matter where you live when
51:41you are faced with particular type,
51:42type of psychosocial stresses.
51:44Biology does the same thing everywhere.
51:47Also, the way the kind of thought
51:50processes people use to explain the
51:52physical things that are happening
51:54to them are very similar everywhere.
51:57You know,
51:58there's a lot the way people
52:00argue about their attributions,
52:02be it a spirit or a a poison or
52:05a government conspiracy that's
52:06causing their symptoms.
52:08Everyone sort of arguments and
52:11kind of belief systems at that
52:13level are the same everywhere.
52:15Where they all differed completely
52:17was in how they attributed what
52:19was happening to them and that was
52:21extremely culturally different
52:22between the different communities.
52:24So you know if you come from an
52:27indigenous community in Nicaragua
52:28where your or Guiana,
52:30where your beliefs are very spiritual,
52:33where they have a different kind
52:35of belief systems about illness,
52:37they believe that illness is something
52:38that is done to you rather than
52:40something that kind of comes from inside you,
52:43then they're looking for explanations
52:45that are spiritual outside themselves
52:47and then you know evil spirits etcetera
52:49make sense in those communities.
52:51If you live live in Kazakhstan where
52:54you've been under this oppressive
52:56regime for a really long time and
52:58where governments can't be trusted,
53:00well they can't be trusted anywhere now.
53:01But in Kazakhstan at the time you
53:03know they'd live with governments that
53:05couldn't be trusted for a long time.
53:06So they it made sense to blame
53:09what was happening to them on a on
53:12a malicious government.
53:13So I I found that the biology and
53:15the kind of thought process and
53:17the arguments people put forward
53:18around their symptoms were very,
53:20very similar amongst the people.
53:22People really don't differ biologically
53:24but culturally and how they think
53:26about what's happening to them and
53:27how they explain what's happening
53:29to them was was very different
53:31between the different communities.
53:32And it all made sense according
53:34to the governments they had the,
53:36you know,
53:37the health services they had
53:40everything made sense according to
53:42the lives they lived.
53:43And that's where they differed.
53:47Well, we're only have like
53:48a minute or two left and I
53:50guess, you know,
53:51if you have any final thoughts.
53:53But one of the things I think that
53:55summed up a lot of what you were saying.
53:57I for those of you who haven't read the book,
53:59I just want to say in
54:01addition to the content,
54:02which we spoke a lot about today,
54:04and grappling with the realness of
54:06whatever you call it, psychosomatic,
54:08functional, whatever you call it.
54:10I do think you didn't use the word validate.
54:13But there is a validation in
54:16this book that they're real.
54:18Even if something's not in a blood test,
54:20it can be real and the suffering is real.
54:22And I think you handle that beautifully.
54:26You also weave in narrative with medicine.
54:28Anyone that is thinking about,
54:30I was going to have you say
54:31what advice can you give?
54:32But that's always so trite and
54:33then it puts you on the spot,
54:34like if you didn't come up with
54:36a cute bullet point thing.
54:37But I'm going to tell you,
54:39study her book, study this book.
54:41Because you could see here's
54:42how you write a story,
54:43here's how you weave in the medicine,
54:46some of it, but not too much.
54:48Here's how you just went into so much detail
54:51and now let's zoom out and sort of explain.
54:54And then chapters relate back to other ones.
54:57She reminds you of what you've learned.
54:59So I would just take this
55:01and really study it.
55:02So that's my advice for people
55:04that want to start writing.
55:06And I want to quote something
55:07from your book that I think,
55:09I think it's just interesting
55:10for a medical audience to hear.
55:12And then you can sort of have
55:14a few last words on this.
55:15And this is one of the quotes
55:17that I just thought was wonderful.
55:19You write,
55:19I can't remember what chapter because
55:21I forgot to write the page number.
55:23Pathology is a fact independent
55:25of the observer.
55:27I'm going to repeat that pathology is
55:30a fact independent of the observer,
55:33but how 1 responds to symptoms is
55:37drawn from knowledge and experience.
55:40And I just felt that that's a
55:42wonderful lesson for future doctors.
55:44And if there's anything you
55:45would like to add in the final,
55:47whatever it is, 90 seconds.
55:49Yeah, I mean I I still,
55:51I think that people think we're going
55:52to move towards an era where you
55:55know artificial intelligence etcetera
55:56can can make lots of diagnosis.
55:58I'm sure technology and AI will help
56:00us a great deal in certain ways,
56:02but medicine will always be an
56:04art because illness for everybody
56:06is different and the interaction,
56:08how they tell their story,
56:10a machine cannot distinguish the
56:12difference between the sort of the
56:14quality of one person's story and the
56:16quality of another person's story.
56:18So I think that making a diagnosis
56:21will always depend on the sort
56:23of art of understanding stories.
56:24And I think that the making people
56:27better will always depend on the
56:29relationship between the patient
56:30and the doctor.
56:31So I think that, you know,
56:32medicine may change a great deal
56:33in the future,
56:34but those bits of medicine won't.
56:35Thank
56:38you. Thank you so much
56:39for your time. We really
56:42thank you. I wish I could have seen
56:43the audience. That was my one regret.
56:45I know. I don't know if we, I don't know.
56:48Everyone can, like, come up
56:50here. You can describe them
56:51to me later. I'm going to
56:54take notes. I'll take a picture. Actually,
56:55I will make everyone just stay there.
56:58I'm going to send a picture so she can
57:00see what this weird room was. And it's not
57:03equal dashed out, but I'm going to send it
57:06to you. All right. OK.
57:07Thank you very much. Bye,
57:32thanks
57:35for my
57:41name.