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Examining the Inner Life of the 'Lonely Patient'

In his new book, Dr. Michael Stein uses the stories of patients, including that of his terminally ill brother-in-law, to explore the personal side of sickness. Stein, a professor of medicine and community health at Brown University Medical School, discusses The Lonely Patient: How We Experience Illness.


Other segments from the episode on February 6, 2007

Fresh Air with Terry Gross, February 6, 2007: Interview with Elif Shafak; Interview with Michael Stein.


DATE February 6, 2007 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A

Interview: Elif Shafak, author of "The Bastard of Istanbul," on
being tried in Turkey for denigrating Turkishness, her fascination
with language, and women's roles in Turkey

This is FRESH AIR. I'm Terry Gross.

My guest, Elif Shafak, faced three years in prison for comments made by
characters in her novel "The Bastard of Istanbul," which has just been
published in the US. Shafak is from Turkey, where Article 301 of the penal
code makes it illegal to insult Turkishness, and for those Turks behind this
law, one of the most egregious ways of insulting Turkishness is to use the
word "genocide" when describing the mass killings and deportations of
Armenians by Ottoman Turks beginning in 1915. Shafak has acknowledged that
her novel tackles a political taboo, quote, "what we in Turkey call the
Armenian question," unquote. One of the characters in Shafak's novel uses the
word genocide.

"The Bastard of Istanbul" tells the story of two families, a Turkish Muslim
family in Istanbul and an Armenian-American family in San Francisco. Shafak
says the novel is about the tension between the need to examine the past and
the desire to erase it. Shafak was acquitted of violating Article 301, but a
journalist who described himself as an Armenian from Turkey was found guilty.
That journalist, Hrant Dink, was assassinated last month. Now many Turkish
writers and intellectuals, including Elif Shafak and the Nobel Laureate Orhan
Pamuk, find their safety threatened. It's unsafe for some of them to publicly
discuss what happened to the Armenians in 1915. I spoke with Elif Shafak

Elif Shafak, welcome to FRESH AIR. What was the significance in Turkey of the
murder of Hrant Dink?

Ms. ELIF SHAFAK: I think the best way to understand that is to look at
Hrant's funeral. It brought people of all sorts of ideological backgrounds,
people of all walks of life, ethnicities, religions, were there, and it was a
very poignant, moving experience. Everyone was chanting, `We're all Hrant.
We're all Armenian," and Christians and Muslims buried him together.

GROSS: What was he tried for before he was assassinated?

Ms. SHAFAK: He was tried several times for insulting Turkishness. He was an
outspoken critic of lots of things, but basically he was someone who wanted to
bridge the gap between Armenians and Turks. I think he wanted to be a bridge,
and he believed that these two communities had much more in common that they
wanted to recognize because of politics. And he very much believed in the
need to empathize with the others.

GROSS: What does this mean for other Turkish intellectuals and writers and
journalists who are independent thinkers?

Ms. SHAFAK: Well, I think in Turkey, ever since the late Ottoman era,
intellectuals, intelligentsia has played a very fundamental role in terms of
triggering social transformation. This is the case right now. It was the
case in the past but of course after Hrant's assassination, everybody is very
nervous and lots of--I mean, not lots of, but several writers and
intellectuals have been given police protection. Right now everything is
quite tense, and we--the investigation is still going on. It's still too
early to talk about, but the government's taking the investigation very
seriously and, hopefully, everyone who is culpable will be brought to trial
because of this.

GROSS: Would you describe Article 301, which is the law that Hrant Dink was
tried under and you were tried under?

Ms. SHAFAK: It's quite ironic, actually, because Article 301 was part of the
reforms process. I mean, it was introduced as a positive step, as a
progressive step, in terms of bringing the country to EU standards. And when
compared with the older articles that were a stumbling block in front of
freedom of expression, it was in itself a step forwards. Nevertheless, the
problem with Article 301 is that it's quite vaguely formulated. What does it
mean to insult Turkishness?

GROSS: Right. It prohibits public denigration of Turkishness. What...

Ms. SHAFAK: Right.

GROSS: What does that mean?

Ms. SHAFAK: Right. But what exactly that means, I mean, nobody's quite sure
of, and that's where the problem lies because it's so vaguely formulated. It
is open to interpretations and therefore misinterpretations. So that's the
problem with the article. But in addition to that, what some civil groups
within civil society, groups with more ultranationalistic tendencies, have
exploited this article in order to silence critical minds, in order to bring
critical minded people to court. So the article is open to exploitation. And
that was the biggest problem with it.

GROSS: You were the first person charged with violating Article 301 because
of a work of fiction.

Ms. SHAFAK: Right.

GROSS: What were the parts of your novel that came into question, you know,
that were accused of insulting Turkishness?

Ms. SHAFAK: I mean, my case was a bit surreal. Until today, Article 301 has
been used to bring various people, various journalists, editors, publishers,
even translators, to court for denigrating Turkishness. So in that regard, my
case was yet another one. But in another sense, it was quite unusual because,
as you said, this time it was a work of fiction and, more precisely, the words
of fictional characters that were seen as a problem. Basically, some of the
Armenian characters in my novel "The Bastard of Istanbul" say negative things
about Turks or the history of Turks and Armenians, so those words were singled
out and used as evidence that I was denigrating Turkishness, and that was
quite surreal.

GROSS: And let's talk about some of the things those characters said.

Ms. SHAFAK: There are some Turkish characters in the book who have a
negative opinion of Armenians, and there are some Armenian characters in the
book that have a negative opinion on Turks that the book, the novel, is
composed of multiple characters, you know. There are many different
characters. One of them, for instance...(unintelligible) some point
talks about the 1915 events, massacres and deportation of Armenians, so that
paragraph has been cut out and used has evidence.

Let me give you another example. At the beginning of the book, there's a very
vivid character called...(unintelligible)...Zehila and she's walking on the
streets of Istanbul. She's very angry, you know, furious, and she's swearing
at the rain, at God, at everything, including the Ottoman dynasty for once
upon conquering Istanbul and then sticking to the mistake.

So that paragraph has a certain, you know, level of humor in it, but the whole
paragraph has been singled out, and I was accused of denigrating, belittling
our ancestry. So it wasn't only the Armenian characters in the book, but each
time a character said something negative about our past, that was singled out
and cut and used as evidence.

GROSS: Now, the prosecutor in your trial said he saw no grounds for
indictment, but a judge reversed that and you were indicted and tried anyways.
And how did you finally get off?

Ms. SHAFAK: Well, we went through several stages. At first, there was an
interrogation and that was dropped, and we were happy. I mean, I thought I
was off the hook, to tell the truth, because the prosecutor concluded, you
know, there was no ground for that. But what happened was, this
ultranationalist group of lawyers, they took the case to an upper court and
somehow the upper court reversed the decision of the lower court, and the
trial was automatically initiated and that was quite unexpected, frankly. It
was a legal twist that I wasn't expecting.

GROSS: And were the charges finally dropped?

Ms. SHAFAK: They were. I was acquitted at the first hearing.

GROSS: Now you didn't go to the trial because you were about to, or had just
delivered your baby.

Ms. SHAFAK: I had just delivered my baby, yeah. I was at the hospital

GROSS: That must have made it even more surreal.

Ms. SHAFAK: It was. And I remember at some point, you know, I was in the
hospital room and I was watching TV, the case was all over Turkish media on
the Turkish channels, so I was watching a group of protestors burning my
picture on the street, and on the one hand, you see such violence, such
hatred; and on the other hand, you're in this hospital and babies are born
every minute, you know. There's optimism, there's hope, there's faith. The
dark side of life, the bright side of life, you know, it's always side by
side. That was quite surreal. I mean, the whole experience was very, very

GROSS: Now, the group behind these trials is called the Unity of Jurists.

Ms. SHAFAK: Right.

GROSS: It's an ultranationalist group.

Ms. SHAFAK: Right.

GROSS: What do they stand for?

Ms. SHAFAK: What makes me sad is they're a very small, you know, limited
number of people but sometimes, especially people in the West, think that they
compose--they represent the whole Turkish society, or the majority of Turkish
society. I don't think that's the case at all.

Let me tell you my experience. This novel came out on the 8th of March, the
International Women's Day, because it's a book in which women played a very,
very, you know, fundamental role. And ever since the day it came out, it
became a best seller in Turkey, it was read, circulated, and discussed freely.
It sold more than 120,000 copies to this day, and I had a tremendous positive
feedback from very different segments of Turkish society. So my general
experience with the readership in Turkey has been quite positive.

But then, after three or four months, like a backlash coming, this group sued
me and, because of that, I was interrogated and brought to trial. But what
I'm trying to say is Turkish society is composed of different voices. And
this group is only one among many voices. They do not represent the majority
of the society.

And, frankly, my opinion is they are targeting intellectuals and writers
precisely because they want to stop the EU process. They have made it very
clear that they're against Turkey's EU membership and they would like to see
the country as a more insular place, a more xenophobic, you know, nation
state, a closed society. That's what they would like to see happening, so I
think we're not the real targets there. The real target is Turkey's EU

GROSS: One of the real controversies, and something that's gotten several
people into trouble, including yourself, in Turkey, is the question of
whether, in 1915, Armenians were killed by Turks in which has often been
described as a genocide. And what's--you know, there are many Turks now who
deny that that happened, and so the whole question of history is at stake
here, and the meaning of history for Turks and Armenians is one of the
subjects of your book. Can you talk a little bit about how you see Turks and
Armenians having a different sense of history during that period? Or a
different sense of the importance of remembering history.

Ms. SHAFAK: Right. When I set to write this novel, I did not want to deal
with macro questions. You know, that wasn't my starting point. My starting
point, you know, was the very simple fundamental duality between memory and
amnesia, and I think that's an important duality for individuals, as well as
for collectivities for societies. It intrigues me to see how Armenians,
especially the Armenians in the diaspora, how they tend to be past-oriented,
memory-oriented. Whereas, when you look at the Turks in Turkey, that's not
the case at all. We are more future-oriented. And in some ways, we are a
society of collective amnesiacs. So it's not only 1915 that we are unable to
talk about but the whole past. For many people in Turkey, history starts in
1923, the day the Republic was established. That is the beginning, and
anything that might have happened before then is of no real interest. I mean,
people have lost their connection, their sense of continuity with the past.

GROSS: Why did you want to go there, you know, to go to what is perhaps the
most controversial question in Turkey and deal with it in your novel and deal
with characters who are facing it?

Ms. SHAFAK: As I said, my starting point was this duality between memory and
amnesia and, basically, I was dealing with one simple, fundamental question.
If the past is gloomy, is it better to know more about it or is it, you know,
preferable to know less about it and to let bygones be bygone and be more
future-oriented. I think that's a very central question not only for, you
know, societies, but also for individuals. And maybe my own childhood was my
inspiration because my childhood was a bit gloomy, too, and that was a
question I asked myself, you know: Is it better to probe it, to know more
about it, or shall I see the past as a completely different country and be
more future-oriented.

GROSS: My guest is Turkish novelist Elif Shafak. Her novel "The Bastard of
Istanbul" has just been published in the US. We'll talk more after a break.
This is FRESH AIR.


GROSS: My guest is Turkish novelist Elif Shafak. Her new novel, "The Bastard
of Istanbul," was a best seller in Turkey, but it was also accused of
insulting Turkishness, which is a crime under Article 301 of the penal code.
She was tried and acquitted.

Your new novel "The Bastard of Istanbul," among other things, deals with
out-of-wedlock sex and abortion. Now, in writing about female sexuality in a
secular-but-predominantly-Muslim country, what were some of the issues that
you faced? I mean, for instance, in an essay, you asked the question, `How
could a Turkish woman novelist approach eroticism and sexuality in her
writing?' I mean, how did you answer that for yourself?

Ms. SHAFAK: I think the Turkish case is quite unusual, and it's very
interesting because we have a tradition of state feminism. And this sounds
like an oxymoron, but this is precisely what happened in my country. With the
establishment of the new Turkish nation state, creating a new Turkish woman
became one of the biggest ideals, one of the biggest goals of the reformist
Kemalist ideology, and they introduced lots of legal reforms to accomplish
that. On the one hand, it was great because more and more women were able to
enter into the public space and to be visible in professions like lawyers,
doctors, you know, you name it. But on the other hand, women's visibility in
the public space was possible when they defemininized themselves, and I think
that's very important. And in addition to that, the state was above
everything, so, I mean, it was a feminism introduced by the state and
controlled by the state.

To this day, when women are talking about those reforms, they say, for
instance, `Ataturk gave us our rights.' Or, `The early reformists gave us our
rights.' Now when you say, `The state gave me my rights,' that's something
else than saying, you know, `We women earned our rights by an independent
women's movement.' It's a big difference because in the former, you are
grateful to the state, and when you're grateful, you can't question it
anymore. I think what we need is an independent women's movement in Turkey.

GROSS: So do you think that women ended up having to publicly desexualize

Ms. SHAFAK: Right.

GROSS: order to have the freedoms?

Ms. SHAFAK: Right. And in time, this created a tradition. Even today in
the intelligentsia, I can see this pattern repeating itself over and over
again. The best way to ensure that a women is respected by her brains rather
than, you know, by her work, is for her to age as quickly as possible. I
don't think it's a coincidence that in non-Western societies or in societies
like Turkey, women age very quickly, especially, you know, women who want to
prove themselves with their work, because when you're old in the eyes of the
society, that's OK, then you have no connection with femininity, with
sexuality any more. And people respect you more. So to become old in the
eyes of the society is safe ground, but when you're young and when you're a
woman, that's not a good combination in the eyes of the society.

What I have observed is, women intellectuals, women writers, have developed
different strategies to deal with this patriarchal pattern. They either try
to age themselves very quickly or they try to defeminize themselves, and I
think these are different strategies to cope with the same problem.

GROSS: What was your strategy?

Ms. SHAFAK: Well, I try not to do either, you know. I try to follow a
different path, which I see as the Sufi path because, you see, although
sexuality is repressed, at the same time, we also have, in the Middle East, in
the Islamic tradition, a very rich literature in which sexuality and pleasure
and delight is venerated, is praised, and there's a huge literature, you know,
a big history behind that. So my path, my strategy, has been to dig into that
literature and to bring back those roots in which delight and body and
sexuality and especially love has been praised and emphasized. I like that
literature. I like that tradition very much and I think it's time to remember

GROSS: Elif Shafak is the author of "The Bastard of Istanbul," which has just
been published in the US. She'll be back in the second half of the show.

I'm Terry Gross and this is FRESH AIR.


GROSS: This is FRESH AIR. I'm Terry Gross, back with Elif Shafak. Her
latest novel, "The Bastard of Istanbul," was a best seller in Turkey, but it
also led to charges that she denigrated Turkishness, which is a crime under
Article 301 of the penal code. She was tried and acquitted. The charges came
from tackling a subject which she describes as a political taboo in Turkey:
the mass killings and deportations of Armenians by Ottoman Turks beginning in
1915, which is described by many journalists and historians as genocide.
Shafak's novel also deals with sexuality, abortion, and pregnancy out of

You've written that you had two grandmothers, one who believed in the religion
of fear, the other the religion of love. What were their differences between
how they approached life and how they approached love?

Ms. SHAFAK: Right. You know, my point is, sometimes Islam is seen as a
monolithic whole in the West, as if it is composed of one single
interpretation, or as if it were something static. That's not the case at
all. There are different interpretations of Islam. There always have been,
and I have experienced this, you know, firsthand in my childhood. There was a
time when I grew up with two different grandmothers. The mother of my father
was a woman whose interpretation of Islam was much more based on the element
of fear, so her god was like an omnipresent celestial gaze always watching you
from above and writing down your sins, and I learned to be afraid of Allah
from her. It was the Gelal side of God, a more masculine God.

But when I came to this other grandmother, her world--her interpretation was
quite different. It was a world full of superstitions. You know, you could
always negotiate. It was more fluid. You could always flow, and it was based
on love, not fear. At the first glance, these two women belonged to the same
age group, they are coming from the same society, from the same culture, both
are Muslim, but their interpretation was completely different. And I think
the difference between a more orthodox interpretation of Islam and the more
heterodox or Sufi-based interpretation of Islam, is very much alive today as
it was in the past.

GROSS: Well, you've described yourself as attached to Islamic as well as
Jewish and Christian mysticism. What do you mean by that?

Ms. SHAFAK: Well, if you're interested in mysticism, it means you're always
traveling in the--you're trying to transcend the boundaries between religions
because the Sufi's someone who is after the essence of religion, not the
outside appearance, but the inside, to the very essence. And when you're
after that essence, there's very little difference between religions. I'm
very interested in Sufi thought, in Islamic mysticism, that tries to look at
the inner meaning, not the outside appearances.

GROSS: You wrote your new novel "The Bastard of Istanbul" in English, and
you've described the Turkish language as having been purged when the modern
Turkish state was created. Are there aspects of the Turkish language, the way
it's spoken now, that you find to be inhibiting or not quite what you need to
express what you want to say?

Ms. SHAFAK: I wrote my first five novels in Turkish, but in a Turkish which
is replete with old words, Ottoman words, expressions, and especially Sufi
words. And that was a surprise for many people because they were saying, you
know, `If you're not older than, you know, 60 years or if you're not a
conservative person, this is not the language you should be speaking.'

In Turkey, what we did was to Turkify the language to get rid of words coming
from Arabic origin or from Persian origin, and I think, in time, our
vocabulary shrunk and when our vocabulary shrunk, our imaginations shrunk
rapidly. When we lost the words, we lost the meanings, the cultural heritage
that they carried with them so we didn't only lose the letters, we lost--you
know, there's a huge cultural loss there and I've always been very critical of
this. I think when we're learning a new language, like when you're learning
French or German or English, you spend more time, more energy, money for that.
But you see your own language, your mother tongue, as a given, and you don't
spend any energy for that.

So my approach has been just the opposite, and that's maybe because I had to
spend part of my childhood abroad so I could never take my language for
granted. And every time I came back to Turkey I had to spend more time for
it, and I had to realize that language was not a static thing, you know. You
might lose your language. That fear of losing my mother tongue made me more
sensitive to this question in time, and I've started to study dictionaries,
Ottoman dictionaries. So, today, my Turkish is very rich, precisely because I
feared losing my Turkish as a child.

GROSS: So when the Turkish state was created in 1923, certain Ottoman words
were purged from the language, you say, and you've been trying to recapture
some of those words. Can you give us an example of a word or a phrase that
you think is really rich that you've used even though it was basically written
out of the language after 1923?

Ms. SHAFAK: Well, one, you know, very crucial example for me is colors and
hues. In modern day Turkish and can, let's say, use 10 different words for
colors, but we have lost the shades in between because most of those shades, I
mean the names for the shades and hues in between, let's say between yellow
and red, were coming from Persian origin. By taking out those words, you're
losing the shades.

What I'm trying to say is we lost the nuances of the language, and I've been
very critical of that. But basically, people used to criticize me for, you
know, my passion for Ottoman words and then they criticized me more when I
started writing in English because they saw it as a cultural betrayal. The
thing is, language is a very politicized theme in Turkey. Culture is a very
politicized arena in Turkey.

But basically, although these two things might look very, you know,
disconnected, for me they're very much related, because at the root of
everything lies my passion and my love for language. Language, for me, is not
a tool. It's not an instrument. I don't think I'm a writer who uses
language. I breathe inside language, I write with and within language. So it
is the labyrinth of language that makes it possible for me to imagine to
write. That's crucial for me. I'm in love with the letters, like a Jewish or
Muslim mystic is in love with letters, with the meaning, with the miracle
behind letters. That's a fascinating experience for me.

And to this day, I think, I do not have to make a choice between English and
Turkish. There are certain things I'd rather write in Turkish,
especially...(unintelligible)...I find it easier to express in Turkish, but
maybe certain other things I'd rather write in English because English is the
language of precision. If you're looking for the precise word, it's out
there, the vocabulary is immense. It's amazing. It's a more mathematical
language for me. So depending on the theme, depending on the story, I might
choose to write it either in Turkish or in English.

GROSS: You said that you can't write anything with an ironic tone in Turkish,
that that would be hard for you to do. You turn to English if you want to say
something ironic.

Ms. SHAFAK: Right. Because--it's a bit difficult to talk about this, but
the tradition of irony--I mean, we have a very solid tradition of black humor,
but black humor is not irony. Black humor has a very specific target. Or, we
have a very solid tradition of political humor, but other than that, irony,
making fun of yourself, not only of the world outside, this carnivalesque
tradition in which the writer turns herself, the whole world upside down,
that's more difficult to do in contemporary Turkish. I find that easier to do
in English.

But basically, for me, and I think people who are, you know, grown up
bilingual, or who have been traveling, commuting between different cultures,
might agree with me. Every language brings you a new zone of freedom, a new
zone of expression. It's a very existential journey. It's not only a
linguistic journey. I have, for instance, met various middle class or upper
class Turkish women who can never swear in Turkish because of the way they
have been raised. You know, they always need to behave like good women in
Turkish, but when they're speaking English, they can swear freely because it's
OK to swear English. Every language gives you a new zone, and I find that
experience, that discovery fascinating.

GROSS: You faced trial in Turkey because of things that you said in your new
novel, "The Bastard of Istanbul." An Armenian journalist in Turkey was killed
by somebody who objected to things that he wrote, and now there are many
Turkish intellectuals and writers who are facing related threats. When you
decided to become a writer, did you think that bravery was going to be one of
the credentials that you'd need to be a novelist? Courage?

Ms. SHAFAK: No, I didn't think--that never occurred to me. And you know,
when I look at myself, I am not a brave person at all. Just the opposite.
I'm a person who has lots of anxieties, lots of fears. But the thing is, I
think I'm curious. I just like to ask questions. When somebody says, you
know, `Don't transcend this frontier, this is a mental frontier,' I'm curious
about what's beyond that mental frontier. So curiosity's my guide, not

GROSS: Well, do you feel like you're becoming a courageous person even though
you don't think of yourself as being that way?

Ms. SHAFAK: No. I really don't see myself as a courageous person. The only
thing I can tell is, when I'm writing fiction, my personality changes, you
know. It is as if you're using a different part of your brain, because when
I'm writing, I'm following a story. I'm just following the footsteps of the
characters as they shape themselves. So it's a completely different psyche.
It's very different than who I am in my daily life. When the book is over,
when the novel is over, I'm a more anxious, more timid person. I wish I could
always be the person I am while I'm writing.

GROSS: Well, I wish you the best and I thank you for very much for talking
with us.

Ms. SHAFAK: Thank you for having me.

GROSS: Elif Shafak's novel "The Bastard of Istanbul" has just been published
in the US. She divides her time between Istanbul and Tucson, Arizona, where
she's an assistant professor of near-Eastern Studies at the University of

Coming up, we talk about the experience of illness.

This is FRESH AIR.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Interview: Dr. Michael Stein, "The Lonely Patient," on how chronic
illness is a lonely experience, and becoming a doctor

When Michael Stein was a young doctor and his brother-in-law Richard was dying
of cancer, Stein wished he had a better vocabulary with which to discuss the
emotional experience of pain and sickness. It was something he came to better
articulate and understand as he became a more experienced doctor. Now he's
written "The Lonely Patient: How We Experience Illness," a look at illness
from the perspectives of patients he's treated. Through their stories, the
book examines four feelings stirred by the experience of illness: betrayal,
terror, loss, and loneliness. It's Stein's first work of nonfiction. He's
written four novels. He's a professor of medicine and community health at
Brown University Medical School, and he heads HIV clinics in Rhode Island and
the Dominican Republican. Let's start with a reading from "The Lonely

Dr. MICHAEL STEIN: (reading) Pain often comes as a surprise. Because it is
usually limited, because it is almost always finite, patients are not
overwhelmed at first but instead are angry. With the slow discovery that it
can become chronic, that one can slide without transition into what the
novelist and memoirist Harold Brodkey called "a gray, oily uncertainly lit
sleeve of almost complete pain, the sense that the body is betraying one
increases." There is the experience of pain and the knowing that it will
continue. Surprise turns to disbelief, then anger and rage and finally
depression and despair. There's something appalling about waking every
morning knowing that pain will soon return, that it is close and coming fast,
that one will be alone with it for another day, unable to stop it. There is a
descent toward resignation and helplessness.

GROSS: That's Dr. Michael Stein reading from his new book, "The Lonely

You know, I think for somebody who's really suffering, you know, there's your
doctor, who can, like, hopefully help with some of the symptoms, but it can
lead to such a kind of existential crisis, particularly if a patient is almost
at war with their body because they're so angry at their body for betraying
them. And at some point, I think it's probably hard to tell whether you need
like a philosopher, you know, a clergyman or a doctor.

Dr. STEIN: Yeah, what I'm trying to do in this book is try to capture
the--what it's like to have an illness and live through it in real time, and
it's difficult for every patient to put into words their thoughts, and I've
tried to provide here some sort of emotional vocabulary for patients. But
frankly, when you don't know what's coming next--you're not sure whether
there's going to be good news, you're not sure whether there's going to be bad
news, you just don't know--I think it leads to a very complicated state where
sometimes you're fearful and sometimes you're passive, sometimes you're
selfish and self-absorbed, sometimes you're bitter. It's very complicated,
and patients often take it for granted when they walk into my office that all
illness is knowable. All the explanations will be apparent. And of course
they should think that to some degree. They wouldn't come to see a doctor if
they didn't believe that their doctor would make their best attempt to know
about their illness. But the fact is that illness is not all knowable, that
what I tell patients is often agonizingly--agonizing for me and for them--it's
agonizingly imprecise.

GROSS: So much of your book is to try to capture in words the sensations of
illness, and I'm sure some of your patients are really, like, quite verbal and
can describe really well what it is they're experiencing, what the problem is,
and I would imagine that helps you understand the problem and better treat it.
But I'm sure that a lot of your patients are not as verbal and have a more
difficult time describing to you what it is that they're experiencing. Can
you talk a little bit about the difference between treating verbal and
nonverbal patients?

Dr. STEIN: Well, I think it's more than being verbal and nonverbal. I think
that there are some people who are not particularly curious about their
illness. Even if they could speak about it, they don't want to speak about
it. That speaking about illness is complaining and people are brought up not
to complain, and they know their doctors will reward them for not complaining.
They don't want to speak of it because speaking of illness, complaining,
brings bad luck. Maybe they're superstitious and they may not speak about

But there are certainly people who don't experience illness or don't share
their illness very much through words and there're people who are ill who
won't or can't tolerate introspection, who go through the process of illness
in other ways. And there certainly are people like that, and that's just
fine. People are different, and we have to approach them in other ways. We
look for their gestures, we look for their face. They sometimes bring
companions who they speak to in private and we use the information that their
companions bring. We have to be very careful listeners but, although I do
think that the more people speak about these difficult feelings--their horror,
their anguish, their losses--the better the chance of reducing some of their
loneliness, some of the loneliness of illness, I don't think that, as you've
said, speaking about illness is universal. There are certainly different
styles of coping. But I do believe that, whatever the style of coping, that
illness brings on loneliness and that loneliness is not a neutral emotion.
Loneliness is a form of suffering.

GROSS: You allude to something in your book, you know, that your father died
in an emergency room when you were 13 years old. I guess I'm wondering what
your memory of that is and how it's affected, if at all, your--how it affected
your interest in becoming a doctor, or the way you practice medicine?

Dr. STEIN: Well, it's certainly been a theme in the novels that I've
written. As you know, I've written four novels, and the idea of loss is one
that comes up for me again and again. I think that the loss of my father at a
young age--he was relatively young and I was, as you said, 13--was certainly
instructive to me. I had no--he'd been ill for a while at that point, so I
had had some knowledge of the medical system. And the medical system back
then was a little more primitive than it is now, but it certainly engaged me
and, of course, wanting to be a doctor believe--has involved some belief that
you can save people, and I think that theme in my life of wanting to save
people probably derives from wanting to have saved my father at that young

GROSS: My guest is Dr. Michael Stein. His new book is called "The Lonely
Patient." We'll talk more after a break. This is FRESH AIR.


GROSS: Let's get back to our conversation with doctor and writer Michael
Stein. His new book, "The Lonely Patient," is his first work of nonfiction.

As we've said, you know, your new book is about describing illness from a
patient's point of view. Has your work as a doctor and your work as a writer
affected how you deal with your own, you know, your own bouts of sickness or

Dr. STEIN: Well, I'm as terrified as the next person. I mean I, you know, I
know, I know what's coming and in some ways that's frightening in itself. A
lot of terror is about anticipation as well as the discomfort and pain of
procedures and things, as well. I've been fortunate to be relatively well at
this point, but I am absolutely as vulnerable to all of the things that I
describe in this book as the patients that I describe. And I think that, in
some ways, that makes it easier for me now. Does that come from writing?
Now, writing is a procedure. When you write a novel or you write a book what
you're trying to do is understand intimate relationships and you're trying to
understand what a person who's not you is feeling, and I think that that
experience of being a writer is, in some ways, similar to being a doctor, and
they probably both inform the way I deal with my own illnesses. But I'm a
baby, too.

GROSS: You know, you're very interested in people's descriptions of their
illness and understanding illness from the patient's point of view. But are
there times when you feel like a patient is, like, exaggerating their symptoms
and, you know, overplaying it for whatever reason, and you have to recalibrate
what you're hearing?

Dr. STEIN: Well, you know, I think that doctors and writers do sort of
detective work, that what we do every day is listen for people's lies and we
listen for people's secrets. And that's what's in novels and that's what I
see in my office, that I sort of sometimes think of myself as a spy with a
polite expression. And, you know, I'm really--you know, I'm paid to be
skeptical. Now, I'm also paid to be sentimental and I'm paid to be tender,
but I'm paid to be skeptical, and to try to make sense of what a person's
telling me. And if they're embellishing and they're trying to take me in a
different direction than the facts seem to indicate, I need to be alert to
that. I need to be both sympathetic but aware because my job is to tell
myself and then to tell them a story that makes sense, and that's what I need
to do. And if they're telling me a story that doesn't make sense, I'm going
to need to understand that better.

GROSS: What impact do you think it has on your, you know, like, world view to
always be hearing stories of illness and suffering? I mean, do you get a
sense that, you know, pain and suffering are inevitable? I mean, certainly,
death is inevitable, but being surrounded by pain and suffering all the time
and absorbing all of those stories and writing down those stories, does it
make you feel, you know, any more kind of fragile and anxious yourself?

Dr. STEIN: You know, doctors hear many good things, too. It's not all
sadness. I wrote a line in the book, I think, that says something like, `I
come to work each day expecting sadness,' and that's true to some degree that,
you know, people are only going to come in and see me when they're in trouble
and there's something that's happening to them that's incoherent or dreadful,
and they're full of dread and it is hard to be in the presence of that all the
time because it threatens to overwhelm the patient and threatens to overwhelm
me, but my day is also filled with people who are coming in who are grateful,
people who are getting better, people who have recovered from something,
people who want to tell me that they were able to play with their kids again.
It's not all bad news, and that's the wonderful part of the job is that we
expect sadness but sometimes we get many other things.

GROSS: Well, I want to thank you very much for talking with us.

Dr. STEIN: Thank you very much for having me.

GROSS: Dr. Michael Stein. His new book is called "The Lonely Patient: How
We Experience Illness."


GROSS: I'm Terry Gross.
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.

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