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

Transcript

• 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.