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The Authors Corner – Illness As Narrative (Extended Interview)

December 23, 2019

(music playing) Ann Jurecic: I’m Ann Jurecic, I’m an associate
professor in the English department and I just finished a book called Illness As Narrative.
The book is about this phenomenon that anyone whose walked into a Barnes and Noble and looked
in the health section may have noticed, which is that there are hundreds and hundreds and
hundreds of books that come out, pretty much every year that are personal narratives about
illness or disability or dysfunction of some kind, physical dysfunction of some kind and
they’re incredibly popular, that people buy then, they read them, people write them, and
what’s surprising for someone who studies literature in the 20th century is that these
books didn’t always exist. it wasn’t the case in the mid 20th century that a lot of people
were writing memoirs of illness, so one of the questions that struck me is that where
did they come from? Why are we so interested in reading them now? Why are so many people
interested in writing them now? That was really what got me started thinking about the topic
for this book and then once I got started I realized there wasn’t a single easy answer
to that question, there were many answers to that question and this concatenation of
events, cultural events and social events that came to together to sort of create the
conditions for this coming into being. The main sort of juxtaposition that I have between
the 1980 flu, where all over the world, 50 million, more than 50 million people died
of the 1918 flu, yet that is virtually absent in English and American literature, and then
you move forward 65,70 years to the AIDs/HIV crisis in the US and literally tens of thousands
of texts emerge from people’s experiences at that moment in time, so what happened in
that space during the 20th century that all of the sudden made it possible for this new
kind of literature to sort of, to take hold and grab hold of people’s imagination. So,
one of the many things that happened was a real change in medical institutions and the
medical profession itself. The 1918 flu, I think people who know more about it now than
maybe they did 15 years ago, but it was a pandemic, global flu and it hit in one of
the late years of World War I and spread globally. There were fewer records kept, one of the
things we do now is that more soldiers, American soldiers, in the war died of the flu than
died of battle injuries. It was and we really don’t have a good record worldwide about how
many people died. I said more than 50 million, but some estimates go up to 100 million people
worldwide, and it’s an inconceivable number of people that we’re talking about, and then
you say, well, surely there are novels about that and stories about that, and as far as
I could find, there was one novel written by Katherine Anne Porter called Pale Horse
Pale Rider and that takes the flu as its centerpiece and elsewhere it’s in the background but it’s
really not much there, so we don’t know very much at all about what the experience of people
was in and around that pandemic because all we have are numbers. We don’t have the stories.
One of the biggest changes came in the 70’s with the Women’s Health MOvement. Women were
suddenly, through feminism and the 1st wave feminism or 2nd wave, discovering that their
reproductive health was their own, and their bodies were something that they should understand
and have choices about. Out of that movement came an enormous number of new feminist stories
about reproductive health, about breast cancer, about child bearing, and so it was a real
sort of radical, it was part of the radical changes of that wave of feminism and that
I think is part of what led to the openness to these stories that came then a decade later
with the AIDs and HIV crisis. So those are three sort of touchstone moments for the development
of these narratives in the United States. People were writing private letters sometimes,
but there weren’t, as I said, people weren’t writing memoirs about the experience and I
mean I think a part of that was that acute illnesses like cholera and like the flu and
like typhoid and other things, and tuberculosis, they were much more mundane experiences. We’re
talking about an era where none of these diseases were treatable. There were no vaccines, people
didn’t know ahead of time that it was coming. Now we get warnings about which flu strains
are, you know, in the air this year, and you know, we’re talking about a time when people
didn’t know that at all, and before 1870’s, didn’t even have the concept of bacteria,
right? So, the kinds of ways that people thought about them were mythologized, right, they
didn’t have any kind of basis in science but there was also I think much less acceptance
of personal narratives about these things because they were’t things you talked about
and I think that may have been in part because they were frightening. We went from an era
of family practice and doctors who would visit people’s homes and visit them there and see
them there and who knew generations of the family because the doctor was in town and
knew the grandparents and the parents and the children and the children of the children
to moments where we go into our doctor and if we’re lucky we have 11 minutes to talk
to the doctor and our HMO or whatever. One of the things that happened in that period
is that people’s stories, their life stories as well as their body stories, there’s no
time for them anymore, so they get sort of shunted off to the side and it just seems
as if those stories have to be told. One way or another they have to come out and one of
the ways in which they came out in an era when storytelling or even writing stories
and printing stories was relatively cheap is that they started to appear in publications
and magazines and then books and now online, everywhere online. In the book itself, I focused
on memoir more than anything else, but not to the exclusion of other forms, so there’s
places where I’d look at the occasional novel or even a poet here or there but mostly I
was really interested in the shaping and how people tell their own stories, stories of
embodied life. One of the things that I find about academic books that I love is that they
tend, and it’s with the fact that I’m writing about narrative, is that they tend to have
a narrative arc, that there’s a beginning, there’s a middle, and there’s an end, and
I wanted to figure out a way in which I could write a scholarly book that would touch on
a lot of different topics, but that would in fact evolve and develop, and so I started
with the historical story of where did these narratives come from, how did they develop,
and why do they matter? So that seemed the place to open up the big questions with at
that point. I knew that I wanted to deal with Susan Sontag, who’s probably as a writer is
more responsible than anyone else for drawing people’s attention to the relationship between
literature and pain. I borrowed from her pain in the title of my book. She has a 1970 book
called Illness as Metaphor and that book sort of really writes about how literature has
created dangerous mythologies about illnesses like tuberculosis and cancer. I’m taking a
slightly less critical view of what literature can do in my own book, but I wanted to write
about her and the arc of her career and the real transformations in her thinking about
how to represent the suffering of other people. She started the very beginning of her career
believing that, again, believing that empathy and sympathy was really impossible to communicating
photograph. That was her real concern, photographs of suffering, photographs of war. By the end
of her career, though, she was writing novels and she said the reason she wanted to write
novels was to make people cry and it was because she also said photographs haunt us, narratives
can make us understand. In her early work she was an essayist in Illnesses is Metaphor,
she was making the argument, what she refused to do in Illness is Metaphor, is she refused
to tell her own story. It turns out when she was writing that book, she was in fact being
treated for breast cancer, but she didn’t tell that story. It was an anti-narrative
in many ways that book, but by the end of her life she had gotten around to this point
where she really wanted to sort of work with, how do we tell stories about these things
that will in fact bridge distances and differences, so she was the center of my book, and then
I wanted to class in the classroom with questions about how do we teach people to read in ways
that will make them receptive to this book? In between, I have chapters about risk and
pain and theories of literary criticism. One of the chapters in the book is about pain
and there’s a theory in cultural studies that has been around since 1985. Scholar named
Elaine Scarry wrote a book, a wonderful book, famous rightly famous book called The Body
in Pain, and the theory that she has is that pain is unspeakable, that especially the pain
of torture, and that was her primary focus at first. The pain of torture destroys language.
It takes you to this place that’s anterior to language. And so, pain becomes a place,
or an experience to come back to empathy, for which one can never have total understanding
or total empathy because the interior life and suffering of someone is inaccessible,
her theory goes, unless you have language. So, for many many years, this idea that pain
destroys language had currency in the literary critical world, but when you sit back and
you look at the narratives that people are writing explicitly about the bodily experience
of pain, one of the things that you can see immediately is that they’re not outside language.
Some things may be, torture for instance may be, Scarry’s their ways that language can’t
name pain, and I get that, alright. That idea that something can precisely identify it so
that everybody can always understand exactly what someone meant when they used this word
with regard to pain, but narrative is something different from naming. I think that you can
see all over the place these narratives, these stories of pain that are invitations to understanding.
They’re not claiming to name pain, they’re just opening a door to understanding and sort
of creating this, creating a character and a story arc that helps people to begin to
understand them. So it was a real eye opener for me, who as a graduate student was trained
to read Scarry’s text and believe that she’s a women, that this was the case, and then
to realize that pain often opens up a narrative perspective or literary perspective instead
of shutting it down and that’s really important for people in my field ot understand. And
for doctors, it’s also really important to understand that naming isn’t going to happen.
Story can happen, and that opens up the chance for asking questions and inviting more engagement.
If for instance one of the techniques that physicians and nurses will use in a hospital
setting for instance, to ask about someone’s pain is to say, they’ll come in and say where
is your pain on a scale of 1 to 10, if 1 is no pain or 0 is no pain and 10 is the worst
pain you’ve ever felt, and a person can give them a number and that’s an automatic gauge
for, they have a sense of they want to hear something below 5. That numerical way of gauging
pain is easy and quick, but it’s not, it doesn’t give you a sense of the full human being in
that bed or what that pain means to them, and all the sort of complications that can
open up out of the fact that that pain may mean something, may have a meaning that’s
so much more powerful, even than the physical sensation itself, so in that way perhaps that’s
what we’re getting at this idea that there’s a limit to the understanding that can come
through the quick and easy, I have to be in and out of this room in 30 seconds kind of
way of gauging whether and how somebody is in pain. The main reason to write the book
was to get people to pay attention to this form and to think about its cultural importance,
and if that’s what happens, I think that that will has the potential to enrich both literary
studies, which hadn’t been paying much attention to narratives in illness, and also to, medical
humanities and medical education, where attunement to the way in which people tell their stories
and the language that they use to tell them I think is also really important, so those
would be two fantastic outcomes. Thinking about who would read the book, anyone who’s
interested in literature, and especially interested in literature that’s being written now in
the late 20th century, early 21st century, I’m excited that the books that exist at this
intersection between literary studies and maybe the medical humanities, so a lot of
the feedback that I’ve gotten on a lot of the reviews that I’ve gotten so far have been
in medical humanities journals, so I know that there are physicians and medical educators
who are also reading this book, and it’s nice to be able to get feedback from a range of
people. When I prepared, when I wrote this book, I was reading out, far outside of my
discipline, so it’s nice to sort of get a sense that the book too might be reaching
beyond the discipline. The last chapter of Illness is Narrative where I’m writing about
pedagogy and I know I opened up questions in that chapter that I didn’t quite answer
to my own satisfaction, so now I’m working with a colleague Richard Miller on a book
called Habits of the Creative mind which will be a book for writers and writing teachers,
about how to access one’s curiosity and creativity as habits of mind that need to be practiced
in order for students to really take hold of their own educations, so I’m in the thick
of that right now and really excited about it. (music playing) (music playing)

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