Alice Flaherty joins a growing population of physicians who are
writing on medical and other matters with the intention of demystifying
mysteries of the medical realm and making understandable the bio-medical
view of life. That group includes doctor/writers like Oliver Sacks,
Rafael Campo and Jerome Groopman.
Alice Flaherty is a neurologist at Massachusetts General Hospital.
She also teaches at Harvard Medical School, from which she graduated
in 1994, and lives in Cambridge with her husband, Andrew Hrycyna,
and her twin three-year old daughters and is working on at least
three or four new books. She has recently published The Midnight
Disease: The Drive to Write, Writer's Block, and the Creative Brain.
As this story goes, Alice Flaherty could not stop writing after
the deaths of her premature twin boys. In the midst of her inconsolable
grief, she awoke one morning compelled to put everything she thought
about in writing—a spell that lasted about four months. With
the birth of her twin girls, her writing compulsion reoccurred.
Her bouts with what has misleadingly described as postpartum
mood disorders* led Flaherty to investigate what is clinically
referred to as hypergraphia and its well-known opposite, writer's
block.
In a recent
interview Alice Flaherty relates, "Hypergraphia stems from
an internal drive, from a love of the work, not from external influences
like money, fame, or spirituality…That's true of bad as well
as good writing...I feel joy when I'm writing well. I have my bad
days, and I'm terrified of writer's block. But in the end, the joy
of finding even one good verb makes it all worthwhile."
In our conversation below, the good doctor and I talk about bravery,
Van Gogh, neuroleptics, the Mind Body problem, her earrings and
the cover of her book. And more.
* Laura Miller has misleadingly referred to or misdiagnosed Flaherty's hypergraphia as "postpartum mood disorders." In spite of that, there
was something useful in Miller's essay — the reference to
the "tiny genre of books written to explain the nonexistence
of other books," one by Marcel Benabou and the other Geoff Dyer's Out of Sheer Rage: Wrestling with DH Lawrence.
Robert Birnbaum: Is there a condition called “reader's
block”?
Alice Flaherty: There is certainly an inability
to read, which would be alexia. A lot of people who will
come to me with complaints of being unable to read, some of them
actually think they have brain damage. In most cases, what they
have are attentional problems, of course.
RB: If I say to you that I have
read your book, for example, and I can answer many common-sense
questions to indicate that I can recall it, and then I tell you
that I don't know if I understood much of what was in it, would
that be a form of reader's block?
AF: No, that would mean I wrote it badly.
RB: [laughs] No — okay, maybe.
AF: It might — there are many things in a differential diagnosis.
RB: I shouldn't have used your book. It distracted you from my
question. What I mean to say is, I believe I have comprehended to
a reasonable standard the content of a book, and yet if I am asked
to synthesize it, to say what it's about, to incorporate or process
it into the way I think, I can't do it.
AF: I sort of answered facetiously, but I think I know what you
mean. For instance, if I take the 19th century Russian novelists.
Most of them I can read, I can write an essay about it. I can get
an A or whatever. But I know there is something about Russian, 19th
century men I do not get.
RB: [laughs]
AF: And yet my husband, who is of Ukrainian extraction
— he goes to a Chekov play and comes out and says, "Yes!
That is what life is." And I'm like: "Life is not being
really desolate in a country summer house when you are bored."
I just don't connect. There is that emotional disconnect—
especially in a novel – [it] can be a huge part of that reader's
block. Now on a more conceptual level, you start worrying that there
are some absolute standards, where you say "You just don't
understand this." But I don't think that's what you are talking
about. I think some people read my book, for example, and the emotional
disconnect is that it is very painful for them to think of literature,
of writing literature, as this product of this disgusting organ
with the consistency of toothpaste. And half of me knows exactly
what they mean.
RB: I was amused by your statement in The Midnight Disease
that
"All works of the spirit are made with corrupt bodies."
AF: Yeah, well, some people jump on me with that, saying, "Oh,
my God! Catholic girlhood!" and so forth.
RB: [laughs] You seem to get it from all sides.
as this product of this disgusting organ with the consistency
of tooth paste.
AF: You don't have to necessarily think the flesh
is corrupt to be deeply troubled by or have issues with the mind-body
problem.
RB: Let's see: your occupation is to apply to
problems, that frequently have not been approached this way, a bio
medical model/solution. You are trying to explain a thing that many
people want to say is mystical and not a biological issue. Hypergraphia
is a condition where someone writes uncontrollably?
AF: Almost. It takes a lot of effort to control. There are degrees.
For some people, it is completely uncontrollable.
RB: Specifically about writing? It's not a generalized condition?
AF: Hypergraphia is. But I think the temporal lobe controls equivalents
in other fields. For example, Van Gogh was hypergraphic, but also
a hyper-painter. He turned out more canvases than —
RB: One every thirty-six hours?
AF: Yes. Now, we say it was his style —
RB: And in the case of Isaac Asimov, who wrote 477 novels in his
life — I'm skipping around, sorry.
AF: I think it's all related. You could say, maybe he [Asimov]
did it for money. But a lot of people would love to do that for
money and just can't. I think he enjoyed — I don't know too much
about his work— he seemed to think it was important, took pleasure
in it. And so I do make this distinction between people who do write
or paint for internal motives as opposed to people who are doing
it just because —
RB: Milan Kundera calls that condition —
AF: He calls it graphomania. He is actually talking about
people who do it for fame.
AF: To be heard,: for people to read them, and those are probably
pretty alike. All of us are guilty of both. If you are truly just
hypergraphic, you never bother to get published. It takes a lot
of work, and it's not the same process.
RB: [laughs] Right. Trying to get published is more like robbing
a convenience store: a lot of aggression and anti-social behavior.
AF: Yeah. It's also a way of justifying and proving to others you
are not crazy. You may be hypergraphic and say, "Well, if I
can turn this into a book, then I have transformed myself from a
nut into an author."
RB: I was struck by the notion in your book that there are people
who feel that studying creativity is "intellectually unhygienic."
Who are these people?
AF: To be fair to scientists — they do dismiss many problems that
way — it has been one of the benefits of the scientific method:
they have focused on solvable problems. What that means is that
someone spends their [sic] entire life working on the nervous system
of a leech — which, on the one hand, is incredibly trivial,
but on the other hand, is at least solvable, and then because science
builds on itself, someone can work on the nervous system of something
more complicated. So, scientists have learned that you have to beware
of the big questions because you are just going to bust your balls
on them. And the only point I would make is — not that it's a stupid
thing to worry about, but: finally some of these questions are getting
manageable, are starting to be approachable, and you don't have
to be as afraid of them as we were in the '50s or whenever.
RB: Does that also reflect a more general anti-science bias? Or
fear?
AF:
We were just talking about the biases of scientists, and now you
are talking about the bias of other people against science —
which is obviously also reasonable —
RB: Right.
AF: It [bias against science] definitely exists. Part of the reason
is that the science courses in high school are boring, and nobody
wants to have anything to do with it ever again. It is not something
your brain is really built to do. Our brains are really built to
deal with emotion — or at least a lot of us are. Or at least
the ones that don't go into science. [laughs] So then, people don't
want to read a story about some needy astrophysicist because it
is probably going to be about how uptight he is and how he can't
get a date. I am being a little glib.
RB: There is a lengthening list of writers who are so skillful
and prove that there are good, compelling stories in science, and,
as there are stories everywhere, there is narrative potential in
every field of endeavor. I read a story in the New Yorker
years ago about tomatoes —
AF: There is a story everywhere, but most people like to read stories
that are just about them.
RB: [laughs]
AF: People who have more breadth will read about
tomatoes or someone with schizophrenia or an astrophysicist, but
most people like to pick up the memoir that is about their story.
They are the people who come up to me after the talks — I
don't want to make fun of them; they are often very interesting
and intelligent — but they like my book because they had similar
experiences.
RB: Well, good. Tell me how you start a book like this? What is
the starting point?
AF: For this particular book?
RB: Yes.
AF: It's just like little fragments start and
then they start — I don't know if congealing or crystallizing
is more appropriate — and I just write down a lot of notes,
and then I start rearranging them, and some of the notes are bursts
of inspiration. Others of them are more connecting things, more
mechanical. And then it just kind of gets bigger and bigger, and
I reorganize a lot.
RB: Is the decision that you want to write a book
the first thing?
AF: No.
RB: Is it that you are writing things and then
things start to shape up, and it could be an essay or a journal
article, some form of prose?
AF: Yeah, it starts as writing. And then afterwards — I have
a file, which is of essay ideas. It has 112 things in it right now.
One of them has kind of swollen, to be the next book that I am working
on. Another one is in the wings. Another one just was accepted by
Houghton for another book. And one I wrote — and there is no way
it's ever going to be published because it's a biography of someone
who is very alive, who would have a fit. What happens is they —
RB: I am supposed to ask you who that person is?
AF: Yeah, but I am not going to tell you.
RB: [laughs]
AF: Hi, you know who you are if you are reading this. So, it's
like one just keeps growing. Two of them were battling for a while
to be the next book.
RB: Is there a novel in any of your files?
and say, "Well if I can turn this into a book, then I
have transformed myself from a nut into an author."
AF: To me that [points to The Midnight Disease]
is because I was not quite sure what was real and wasn't when I
was writing it. I actually grew up only reading fiction. And I never
was one — those non-fiction kids. But the last novel I was
interested in writing was when I was in college and [long pause]
I don't know. I don't have any — I'm probably too self-absorbed.
If were going to write about anybody, either it would be —
RB: You are self-absorbed when you are writing; are you self-absorbed
when you are being a doctor?
AF: No, it's actually the only time when I am
not. That's one of the things I love about medicine, is —
they [patients] are so much more caught up in their illness or their
emotions than I am, usually; that's a great way to be able to experience
someone else's lives [sic] when they are being, in general, much
more honest than we tend to be in our daily lives. People sometimes
say, "How can you stand working in the ICU, people are dying
everyday and you have these family meetings?" Last month there
were two young mothers who had cerebral bleeds, whose daughters
were 12 and 6, respectively, and had a dream the month before that
their mothers were going to die. And then the daughter, of course,
felt incredibly responsible. Just to figure out how to help the
families deal with that, it was heartbreaking, but it also was engrossing.
And there were actually things that you could do to help the families
that, to me, seemed really straightforward — because I see
this, like, twice a week — and they [the family] had never
thought it might be good to tell the — one family didn't tell
the daughter — this is the mother that got better and did
fine — they didn't tell their daughter that her mother was
in the hospital. They told her she [her mother] had gone shopping.
For like two days? The daughter is going to figure it out, obviously.
So I said, "No. It might be easier for her — because
she must know something is wrong — to just explain she is
in the hospital."
RB: Is this part of your responsibility as a physician?
AF: I don't know. It's just what I did. I don't really care.
RB: Right.
AF: No, I am just supposed to make sure her sodium was correct
or whatever.
RB: The question comes from my having recently talked with another
physician writer who felt very much under the gun because he was
very personal and empathetic with his patients.
AF: Maybe it's because he is a male or something.
Frankly also, I have a very supportive chairman and I don't —
RB: [laughs]
AF: She doesn't mind that I talk to the patients
about — she is fine with that. I am not under a lot of pressure
to go through people rapidly. But I think part of it is being male:
you are taught not to talk about things like that. I certainly have
had male doctors tell me — who had witnessed interviews, "Well,
you spent to much time letting the patients talk." Bullshit,
you know. The patients are here; they know they are not going to
be cured. They just want to tell you their story. [laughs]. Which
is not entirely true. I do see the residents who are under a lot
of pressure to just keep people's sodium adjusted. They don't have
time for that. And so I do try to remind them that actually that's
not going to help as much as making sure the daughter doesn't spend
the next ten years thinking she killed her mother. [For] A lot of
them, it clicks…
RB: This does take me to the personal…the central, stunning
thing that resonated for me, after I closed your book, was part
of your story — and I don't know if you absolved yourself
— you felt responsible for the death of your first set of
twins. And so did the obstetrician.
AF: Uh-huh, yeah. It's funny because no one has ever talked to
me about that passage. I think they just don't want to deal with
that. Um, I know that it's a classic mistake people make —
mothers who lose their kids or anybody who feels responsible —
they feel responsible when the other person dies. I see it all the
time in my patients — an elderly wife, who's been ill for
10 years, finally dies; they feel they did it. And it's a classic
kind of psychiatric flaw, thinking you have control of your life.
It [knowledge otherwise] doesn't stop it from happening when it's
you. The sad thing is that insight is useless. And uh, I also thought
that this obstetrician — I don't think I said this in the
book — there was no way he was ever going to say, "Oh
that was terrible, that that happened," and so forth. Because
he was really upset about it, and in his case there was a little
bit more of a mechanical, "I did it — I'm a bad doctor,"
kind of thing. I don't know; I don't think I answered your question.
RB: Well, uh, I don't know if there is an answer. I found it to
be a very startling and brave admission. I don't know what your
answer would be. I brought it up because I was very moved by your
mention of it.
AF:
Well, thank you, but — you know the words: brave — okay,
you are going to get a kind of tirade —
RB: [laughs]
AF: All the scientists come up and say, "You are so brave
— you write that in the book." And what they mean is that
I was in a psych hospital. And for them, that's a very risky thing
to write — which it was. At the time, I was just writing about
something that happened because I thought it was relevant. I didn't
especially think I was being brave. Partly, I was kind of buzzed.
I wasn't really planning, "This is a good idea." You make
me feel like I have leprosy, or whatever.
RB: I seem to be withstanding your tirade, don't I?
AF: No, no, I am in the middle of it. It's more
a cloud of ideas than a tirade. So then, people in writing...writers
say, "Oh wow, that's great, the dead baby stuff, that probably
tripled your sales." [laughs] They don't put it quite that
coarsely. From their point of view, the human angle is very interesting
and important, and it wouldn't occur to them to think it was brave.
RB: That's crap. Artists and writers are not necessarily any more
ethically enlightened than anyone else. That response sounds like
someone has become more, uh, "professional." I think it's
a very brave thing to consider, whether you published those thoughts
or not.
AF: The third thing is that, when I was writing,
I really didn't have a choice; I was just writing it. And then a
lot of times when I look at it, I think there are parts I wish I
had written in a different frame of mind. Obviously, because my
frame of mind kept alternating, I would write it and then un-write
it, write it and un-write it.
RB: I get that if you wrote it today it would be a different book.
AF: Yeah, it would be more boring.
RB: Your approach isn't with a structure in mind. This brings us
closer to my difficulties — well, they aren't difficulties,
unless I am being totally narcissistic — I don't know what
I did and didn't understand, but maybe your characterization of
this book as your “novel” suggests that what I was closer
to were the narrative, descriptive stories and the brain physiology,
the lobes and areas where different aphasia are located, and other
science, reminded me that I am a bad student. And, also, I don't
think that was the point of the book.
AF: The part that was my point I almost had to do sketchily enough
so that it's not so useful. The point is that the people who are
having writing problems, who have writer's block — and I get
a bunch of patients that — they can approach their problems very,
very differently and in a way that would be much more useful for
them. I had a patient yesterday. A very talented writer who has
had ECT [electro-convulsive therapy, shock therapy], who has felt
herself completely losing the ability to find words since then.
In my evaluation, it became pretty clear it wasn't any cognitive
effect of the ECT; it was that she was still depressed. But also,
the things that she was doing to get out of her writer's block were
counter-productive. The willpower thing, where she would force herself
to sit at the desk and make herself feel even more worthless and
miserable and [then] a vicious cycle would build up. When in fact,
she was on the wrong anti-depressants; she was not doing things
like working in the morning, which was, according to her, the best
times for her to work. And when she did change drugs, she never
did it systematically, with respect to thinking about her writing.
It was always about side effects, dry mouth and stuff. So just reorienting
how she thought about the problem actually gave her new ideas, so
she had a different approach to eliminating things. In the book,
I couldn't exactly say, "You should try Wellbutrin if you are
in this and this and this state.” But there are actually rules
like that, that often work. And that's why all the brain stuff is
relevant.
RB: I wasn't saying it was irrelevant. There is no super-theory
of causality here. What you are doing . . . because you are a writer,
you have a great deal of anecdotal knowledge. Coupled with a great
deal of scientific-medical knowledge, that allows you to run through
the variable causes very quickly.
I love about medicine, is they [patients] are so much more
caught up in their illness or their emotions than I am, usually,
that's a great way to be able to experience someone else's
lives when they are being, in general much, more honest than
we tend to be in our daily lives.
AF: I think it is two things. I think it is what
you say, a lot of it is anecdotal, and it's having an idea of what
are useful techniques to try and how to try them so that you don't
zip by something that might actually be helpful.
RB: Because you have tried them.
AF: Right. Believe me, it helps to know. [both
laugh] And patients usually respond when they sense that you know
what you are talking about. The woman I was talking to is a psychiatrist
and has tried all the drugs she gives her patients. The other thing
is — and it didn't come out in the book because I didn't figure
it out yet — I do think there is an overarching theory, which,
to the average reader, is probably not relevant. They just want
to know what to try. There is a sense in which — there is
a frontal temporal interaction — is ninety degrees to the
old left brain-right brain theory — which emphasizes different
things in creativity: it emphasizes the role of motivation and emotion.
It kind of downplays this right-brain, holistic-visualization stuff.
It tells what drug and electrical and magnetic treatments might
be relevant and so forth.
RB: Might be relevant?
AF: Studies exist that show that they probably are relevant —
preliminary studies.
RB: Do we have science for the connection between emotions and
reasoning? Or do we dismiss the model?
AF: That's a very hot area of neuroscience right now —the
neuroscience of emotions. Antonio Dimasio has been very effective
in showing you really can't separate emotion and reason too well,
and when you have people with frontal lobe lesions that cause emotional
deficits, they no longer have judgment either. They screw up their
business careers and make what, for all the world, looks like cognitive
mistakes but in any other sense, really, are emotional.
RB: Is this discovered at an autopsy? When are the lesions identified?
AF: The case that I am thinking of, the person had like a big sledgehammer
to the frontal lobe, so you didn't need an autopsy. Now people with
depression who have frontal lobe deficits, you have to use a functional
brain scan to see them.
RB: Lesions are shown by brain scans?
AF: Lesions you can pick up by a regular MRI or
even a cat scan usually, and then there are also a lot of neuro-psychiatric
tests or different types of frontal lobe lesions which you can see
in a patient who has a hole in his frontal lobe, or you can actually
see it in people when they are depressed. They start behaving as
if somebody came and whacked them in the head with a hammer —
and the phenomenon I talk about in the book, cerebration, where
people approach the same problem the same way over and over again,
is common in depression, although in a higher level way, as it is
in people who have had strokes, for example.
RB: Tell me about separating the lobes — which is used to
reduce certain kind of seizure activity.
AF: The studies done by Roger Sperry in the '70s — the two
halves of the cerebral cortex are basically mirror images, and they
are connected by this band of white fibers called the corpus
collosum. Basically they would cut them with a knife. Sometimes
they would cut a lower bundle, and then the left and the right halves
couldn't connect, couldn't talk to each other. People could do pretty
much do everything they could do before except if you presented
them stimuli that would only go to one hemisphere, you figure out
—
RB: How do you know what affects which hemisphere?
AF: They knew, for instance, that the right half of each eye, the
right side of the retina only projects to the left [hemisphere],
and if the brain is connected still, then it goes to both — otherwise
it goes to one side. They would give them stimuli that only went
to one side. If it was a word and it went from the right eye to
the left hemisphere, you could read because the left hemisphere
controls language, but if they did it on the right, they couldn't
read it—that's proof that language is a left hemisphere function.
So then they started experimenting with what the right hemisphere
could do and found that it was much better at visual spatial processing
and stuff. But a lot of the right hemisphere functions are not nearly
as precisely controlled as language. Language is the only one that
is really, really specialized.
RB: This is, of course, about me. You touched on verbal language.
And you reproduced a portion of the Watergate transcript to show
the way we speak in dialogue is understood by who we are speaking
with, when it is reproduced in text it is a whole other thing, with
gaps and awkward repetitions. This suggests there is more to conversation
than words. Some people are wonderful storytellers and can't or
don't write. Is verbal skill an identifiable brain function?
AF: The difference between writing and speech is really fascinating,
and it's not well worked out. There is not a whole separate writing
area. It does seem to be a parasite on the speech area. With the
major exception of the anguilar Giris, which is involved in dyslexia,
transferring visual images to auditory images. But that is not all
that is going on. The question is why? One thing that makes people
write and not speak, is they are shy and afraid to speak and if
they are very concerned about getting their words exactly right—because
you have a chance to rewrite. Or if they don't trust their memory.
The temporal lobe, which is so involved in the desire to write,
is also the lobe that controls memory. And writing was this desire,
originally, to aid your memory. Did you see that movie Memento?
The protagonist had a sense that everything was slipping away, that
he had to tattoo the words on his skin — that is a vivid image
of the need to write and preserve, that helps drive a lot of memoirs.
RB: You talk about this instinct…urge…obsession…disease…need
to write. [interrupted by AF's beeper] What do you think of hyperlexia
[obsessive reading]?
AF: The first thing I think is this is really getting to be ridiculous. I mean there is a term for hyperlexia —
RB: [laughs]
AF: There are so many sufferers who are actually pretty happy with
it. The real phenomenon actually is kids who read but can't speak.
When you start thinking about what's going on in the brains of people
who just read passionately, compulsively — I remember in graduate
school, I had to have a book with me on the elevator. It was only
six flights, but I couldn't waste that much time. I had to read
these little essays by Michelle — I forget whom — anyway,
they were very, very short; they were like one elevator ride in
length [both laugh].
RB: There is a book — a compendium — of these sanctioned,
officially recognized conditions and diagnoses.
AF: They are definitely recognized. I didn't make these up.
RB: Yes, I know. I am thinking about when homosexuality was classified
as a psychiatric condition in the '70s, in the big book of diagnoses.
Anyway, here is a real life example. I walk into the post office
a few weeks ago, and the clerk at the counter is reading a book.
I say, "Boy, it's really beautiful to see someone reading a
book in public." He says, "I have to read five books a
week, whether I like it or not." I was a little trepidatious
about going further. Could he go to his health plan and qualify
for a disability?
AF: No. In a case like that, the way the condition affects your
life is so variable. It's very rare that something like that really
disables. [laughs]
RB: How much of the making the book do you involve yourself in?
Meaning you have written the text, now there are production issues
and (cover) art decisions and the outreach/marketing?
AF: Well, my husband is an editor, and he kept saying to me over
and over again, "They will not let you have any role in the
cover. Leave the cover alone. Don't bug them about it. You can't
have any role in the cover, you are the author." He stressed
this to me. Unfortunately for him and them, my first book was a
neurology textbook, and the cover didn't matter very much. I had
a very lovely, forgiving editor, and he said, "Design your
own cover, we don't care." So I had a ball. And so, there was
no way I was not going to try to mess with the cover.
RB: [laughs]
AF: Luckily for me the designer, Michela Sullivan, who I thought
did a great job — I just loved it — this [the writing
on the dust cover] is actually her husband's journal. He writes
so fast that even he can't read them, and then he just throws them
away. So she has a hypergraphic husband — it was perfect.
I tried to mess with everything I could.
RB: You wore your favorite earrings in the author portrait—
AF: I only have one set of earrings.
RB: Since you are wearing them today, I would have guessed they
were your favorite. [laughs]
AF: I guess they are my favorite. That [the blouse in the author
photo] used to be my only interview blouse until it got so faded
the shoulders were a different color. So this one is the new one.
And they [my clothes] have to be something I can bike in.
RB: So you favor the Bernard Shaw reason for choosing writing as
a profession — you don't have to get dressed up for clients.
AF: Right, it doesn’t require new clothes. For my first book
I had very precise ideas about the type setting for each page because
I wanted it to be as small as possible, and this is a hypergraphic
characteristic. Writing in the margins and —
RB: So if you saw in an art book, one word on a large page, that
would be painful to you?
AF: No, I can deal with it if it is the right type set [face].
RB: [laughs]
AF: I have problems when words get stuck in my head or if they
are too big, like on the side of a truck or a billboard. I can't
get them out.
RB: Like a song.
AF: I have that problem, too. Neuroleptics [anti-psychotic medications]
take that right away.
RB: Which neuroleptics?
AF: Haldol, Rispridolm, Stelllazine, Nazine, and Thorazine.
RB: As a neurologist, you can prescribe medications?
AF: I can, and I do all the time.
RB: I thought this was the realm of psycho-pharmocologists?
AF: It is. But there is no rule that says that they are the only
people that can prescribe them. For instance, you can even use Thorazine
for hiccups — GI [gastro-intestinal specialists] people sometimes
do. For instance, 80% of my patients have co-morbid psychiatric
conditions.
RB: Co-morbid?
AF: Have both psychiatric and neurological conditions — because
it's the same organ, you know.
RB: But the difficulty — I got this part, I think —
is making the connection?
AF: It depends on the system. Sometimes it's very easy. For instance,
one of my patients has Parkinson's Disease. [She also] Has a condition
called Pseudo —— Palsy. She laughs or cries very inappropriately.
She will cry when it's funny and laugh when it's sad and not feel
any emotion. It's actually not a psychiatric condition because she
a ———- of the motor behavior, the motor behavior of emotion.
That is actually caused by the deep brain stimulators she has for
her Parkinson's Disease. She came and said, "Look, I am at
the golf club, and I have this little giggle I can't control. What's
with that?" We found out if we change her settings in her brainstem,
which is not a psychiatric area, it's a motor behavioral area, we
could get rid of her giggle.
RB: We call it a 'giggle' because we associate — 'giggle'
is not a scientific term. It's something that we interpret.
AF: You would have a difficult time not calling it a giggle.
RB: No, no — I am saying where do we give the sound an emotive
value?
AF: It's like saying jaundice is not yellow.
RB: The real life use of the word came before all this science
therefore when we say 'giggle' we invest with an emotion. How is
the sound we call giggle inappropriate?
AF: I could make up a Latin name for it. It's like saying right
lower extremity rather than right leg. It doesn't add anything.
I think I understand your point, though. Again, in Parkinson's Disease,
many people's first symptom of this motor disorder is depression.
Their emotion slows down in a way that is similar to the way their
leg is about to [slow down]. The reason is that the emotion and
movement pathways in the basal ganglia, the parts of the brain affected,
are right next to each other. We treat the movement problems, we
usually treat the depression, and it doesn't come back. But sometimes
it does, and they're stuck with both. So it is true that to get
an absolutely precise “scientific” depression, as the
definition of depression, it can be difficult. It's actually not
so easy to do it with Parkinson's either. I can say, "This
person has a tremor," but there are different kinds of tremor.
I can say, "He walks slowly." But how slowly? I look at
someone and think they are Parkinsonian, it's a gestalt and not
a blood test.
RB: That makes it sound to me like diagnosis is an art, not a science.
The judgments that you make are anecdotal, based on your vast experience,
and measured against your knowledge of the facts, the science of
it. If I recall correctly, what we found worthy about physicians
was the ability to diagnose and interpret a medical history. Not
the ability to order a bunch of tests and stabilize the sodium level.
AF: I am not going to argue with your point because I don't really
care if I am an artist or a scientist. All I want do is know how
to make that person — not necessarily even make them feel
better — because they might not want to feel better, but get
what they want.
RB: For the purpose of this conversation I am not trying to convince
you. I am suggesting that when people read your book and talk with
you, however they resolve it, they question, "What is this
woman, and what do I call what she has written?" Is The
Midnight Disease a rigorous scientific text, written in language
that the layman can understand, or is it as you called it, a novel?
[AF's beeper goes off] Saved by the beep.
AF: I do feel like I don't want to make the distinction. When I
talk to a general audience versus talking to scientists, with the
general audience I don't really bother to defend why I am explaining
my motives and my personal experiences. With the scientists, I know
have to justify why I am even talking about the personal. But I
also want to say, "You should be telling your motives when
you talk. It's there, driving your talks, too." And there really
isn't that much of a distinction between a supposedly impassionate
colloquium and something public.
RB: I had mentioned to you I had spoken
to Rafael Campo. What is your response to his calling himself
something other than a doctor/poet — a healer?
AF: He used the word 'healer,' and that to me
— partly because I see so many bipolar patients who are actually
wedded to their illness. This is a little off on a tangent. The
notion of a healer is a little bit patriarchal — like you
are going to make that person better. A lot of times they don't
want to be better, and they have goals for their lives that are
different from the traditional medical goals — I'll just say
that as an aside. He obviously has a lot of conflicts about, as
you expressed, people who want him to be there for them emotionally,
and he feels that pressure everyday and may not have the time to
do that a lot.
RB: I have the sense that he makes the time.
AF: As much as he wants to, he obviously does because he has these
great anecdotes about his interaction with the patients.
RB: You've already said that you are lucky to have a supportive
department chairperson. Is she unusual, or is she standard for the
profession?
know how to make that person—not necessarily even make
them feel better—because they might not want to feel
better, but get what they want.
AF: She is pretty unusual. You should be interviewing
her. It's not that she is especially open to emotional issues with
patients. She has a lot of theories, but she doesn't have theory
about everything.
RB: String
theory has been called that.
AF: I have a friend who is a string theorist. I stop up my ears
[both laugh]. Speaking about not wanting to know about the lobes
of the brain.
RB: Which brings me back to what I am trying to understand —
I mentioned to you my difficulty with the science of your book —
doesn't every discipline, every neurologist, every string theorist,
every ethicist, every mechanic, every cook, will walk out of their
habitat in the morning and look at the worlds in very specific ways.
Perhaps there are these contrived communities, and somehow what
you are bridging is this "intellectually unhygienic" thing
called creativity. People don't really want you to do that. Connection
with the science removes the mystery, the mythology, and the narrative
interest. If it's all figured out, then —
AF: My personal experience of people I have helped, say with writer's
block, is that it didn't matter how I did it. It still feels great
when your thoughts takeoff — you feel like you have divine
energy, and it doesn't matter if it came from getting up early or
exercise or using a light box or taking a pill or having some big
helmet on your head with magnets in it. It still feels divine.
RB: I asked a young writer yesterday what it feels like to write.
She said she finds her life so complicated and she is always thinking
about so many things, and when she is writing she feels this great
feeling of being present and connected to only that. I guess it's
hard to repeat that on command. There is another part of writing
which is called revision, editing, shaping the text. Is there a
feeling for that? Or a condition connected to that?
AF: I don't think as many people have editing phobias. I suppose
truly hypergraphic people never edit, and there is actually a study
of schizophrenic poets that what distinguishes them is they don't
want to edit. They are very rigid about what they have written.
But for most people, to have a first draft makes it much easier,
and that's what writing programs try to get you to do, work something
out and then fix it up. There are times when you can generate text
and times when you can't, and actually editing is very pleasant
at that point.
RB: So schizophrenics lack the ability to redraft or edit?
AF: Yes, I would guess, and it's not just schizophrenics. There
are a lot of elementary school students who feel the same way. There
are some people who can only edit; they are very good at being critical
and can't generate texts.
RB: Is The Midnight Disease finished?
AF: The strategic thing for me to do would be to continue in this
theme from a research point of view. I have research experiments
going on now at Harvard, and I am refining the theoretical model.
But from an emotional point of view, once I finished a book, it's
outside of me; it's dead. I don't have any interest in writing Midnight
Disease II, or Dawn Disease or whatever it would be.
That's how I feel about stuff, [long pause] I can always think I
could have done that differently, but this is not my book anymore.
I sold it to the publisher. Except I get obsessed with the cover
and things like that.
RB: Well, good, we'll talk again.
AF: Great.
© 2004 Robert Birnbaum
Images by Red Diaz/Duende Publishing