TERRY GROSS, host:
This is FRESH AIR. I'm Terry Gross.
In spite of all the advances of modern medicine, the human body still poses mysteries that have no obvious solutions or even explanations. My guest offers her own condition as an example. Siri Hustvedt is the author of the new book "The Shaking Woman, or A History of My Nerves." She's a novelist who's had several inexplicable episodes of violent shaking. It's not epilepsy. It's not panic attacks. And during a seizure she can still think and speak clearly.
Hustvedt also has a long history of migraines. One of them lasted a full year. She writes: Neurological and psychiatric illnesses seem to attack the very source of what one imagines is oneself. Her memoir is in part about how her migraines and seizures have affected her sense of self. Her book also investigates her condition from the perspectives of psychology, psychiatry, neurology and literature.
The second time she had a seizure, it was while giving a speech. Her husband, the writer Paul Auster, was in the audience. So we asked Paul Auster to join us for the very first part of the interview.
So Paul, I'd like to start by asking you to describe the first time you saw Siri having a shaking seizure. What did it look like? What was your experience of that?
Mr. PAUL AUSTER (Writer): Well, I knew it had happened once in Minnesota, but I wasn't present. And then about six months later, Siri and I were invited to a literary festival in Key West, Florida. So it was early 2007, January. Siri had written a piece about her shaking. It was actually the kernel of the book that has now been published, and she wanted to give a lecture about this.
There was a large crowd in the hall, a few hundred people, and she got up to begin speaking, and out of nowhere her body started to shake. And I'm not saying tremble - these are not tremors - this was violent, almost epileptic, seizure-like movements. Her arms were flapping. Her legs were - seemed to be knocking together. But what was so uncanny about what I was seeing was that she was able to go on speaking. It seemed that what was happening from her neck down was very different from what was happening in her head. So she gripped the podium very tightly and went on talking and said - and this is where it got really bizarre - I'll get to the shaking in a minute.
(Soundbite of laughter)
Mr. AUSTER: Because there were people in the audience saying, she's having a seizure. And there was a lot of alarm. I myself was so terrified to see her in this condition. I was sitting next to Ian McEwan, the English novelist who was at the festival as well, who's an old friend. And I leaned over to him, I said, I have to go up on stage and take Siri off 'cause this is horrible. And Ian, cool Englishman that he is, just said, no, no, I think she's going to be okay. Give her a minute or two and let's see what happens.
And it is true that by gripping the podium and continuing to speak, she did settle down. And by the middle of the speech, she was pretty much under control. But it was a horrifying thing to see in someone you love so much, in public no less. And I'll never forget it.
GROSS: Well, Paul, thanks for that description. We'll let you go now so that I can talk with Siri. Thank you.
Mr. AUSTER: Okay, great. Thank you.
GROSS: Well, Siri, now that we've heard your husband Paul Auster describe what it was like to watch you, tell us what your experience was of having that seizure onstage.
Ms. SIRI HUSTVEDT (Author, "The Shaking Woman or A History of My Nerves"): It's hard to describe how surprising it is, for one thing. It comes out of nowhere. And the first time it happened I opened my mouth to speak, and suddenly my whole body is shuddering violently. I had index cards in my hand, my arms were flapping, my legs were shuddering so hard that I thought I was going to fall over. It's a very dramatic physical event.
But what was fascinating and has always been fascinating about this for me is that my cognitive abilities, in other words, my thoughts, my ability to talk continues. I don't feel cloudy or anything. It's simply that my limbs have gone out of control.
GROSS: And your mind, being cognizant at the time, must be thinking, make it stop, how do I control it? And of course you can't control it.
Ms. HUSTVEDT: You can't control it at all. In fact, I just clung to the podium to keep myself upright. And I did say to the audience, well, you know, I'm going to discuss this shaking problem and what it might be later in the discussion.
GROSS: I love the way you postponed it until later.
(Soundbite of laughter)
Ms. HUSTVEDT: So I said, yes, you know, I'm getting to it if you'll just bear with me. And fortunately, it did subside and one of the strange questions is: Did it subside because, you know, these stress hormones were ceasing to rush through my body and that was triggering this seizure-like activity? Or did the seizure just last for only a short time?
GROSS: How many times has this happened to you?
Ms. HUSTVEDT: It's happened four times. And I began to think that I was having some kind of hysterical seizure activity. In other words, that I had no control over it, but that it was maybe completely related to some emotional drama inside me that I had no awareness of. Especially because the first time this happened was when I was giving a speech about my dead father, at a memorial; they were planting a tree in his honor at the college where he had been a professor. And I thought, oh my goodness, you know, this is coming out, you know, some unconscious emotional conflict, and what's going on?
However, later I had a seizure when I was climbing a mountain. I think I hyperventilated and it triggered a seizure. So that seemed to suggest that it's not only emotional material or fear of public speaking that initiates this.
GROSS: You've also had severe migraines most of your life and you suspect that it's connected. You write that people with migraines are often prone to other peculiar sensations and to sensitive nervous systems. In your 30s you say that you started to get this strange tingling in your arms and legs with shocks of varying degrees going up and down your limbs and your face. Do you think all of that is connected? That and the seizures?
Ms. HUSTVEDT: I have a feeling that it is. I don't think that neurology can explain exactly how these are related. They do know some things. For example, that if you have either migraine or epilepsy, you have a much greater chance of having both of them. In other words, there has to be some kind of connection, but they're not certain how that works. It does seem that something like migraine is inherited, that there's a strong genetic component to it, and probably with epilepsy as well.
Although I have to say, I - epilepsy too can be triggered by emotional content. I read, after I had finished the book, a wonderful little medical story about a man who has epilepsy and he has a seizure every time he lies.
(Soundbite of laughter)
Ms. HUSTVEDT: It's amazing.
GROSS: So, what kind of difficulty have you run into getting a diagnosis for your seizures when it doesn't fit any of the symptoms of known illnesses. They've ruled out epilepsy. It doesn't seem to be stage fright. It doesn't fit any of the official illnesses and disorders. So where does that leave you?
Ms. HUSTVEDT: Well, it leaves me, I think, with the fact that I do take beta blockers, or Propranolol, every time I have some public event. And this seems to inhibit the seizing activity. So that's a good thing. So that leaves me at least with a crutch. The interesting thing about this is that there are a lot of illnesses that are either misdiagnosed or seem to fall outside the categories of medicine. That's simply a truism.
I feel that my journey and part of the writing of this book for me was a sense of mastering not the illness, not curing it, but being able to think very clearly about what had happened to me and also saying to myself, this is part of you. This is not only part of your story, but it belongs to your nervous system. It may never go away. And it became very important for me to own it, to take it into myself as part of myself and not as an alien invader.
GROSS: Well, let me quote something that you wrote. And this is actually in a New York Times article that you wrote a couple of years ago about migraine. You wrote: Chronic headaches are my fate and I have adopted a position of philosophical resignation. I am aware that such a view is resoundingly un-American. Our culture does not encourage anyone to accept adversity. On the contrary, we habitually declare war on the things that afflict us, whether it's drugs, terrorism, or cancer. The very moment I stopped thinking of my condition as the enemy, I made a turn and began to get better. I wasn't cured. I wasn't forever well, but I was better. Metaphors matter.
Can you talk about how you tried to, instead of, like, conquering and fighting whatever this affliction is that you have, just kind of trying to accept it and why you think that made a difference?
Ms. HUSTVEDT: Well, I think for one thing, acceptance, even physiologically, has a calming effect on the body. In other words, if you are in a state of resignation or acceptance, you're less tense than if you're going to war. And I think with a number of illnesses, this is probably a somewhat healing factor. At the same time, I think, you know, diagnosis is really a way to abstract an illness from a person. And that can be quite easy, say, with a cancerous tumor that can be removed or with the measles that come and go. You have spots and then the spots leave you.
With neurological illnesses, it's much more difficult to separate the illness from the person. And I do note in the book aspects of personality that seem to be very strongly related to the nervous system, including religious feeling, the need to write. Certain temporal lobe epileptic people get something called hypergraphia, which means that they just have to write a lot. And this is probably part of Dostoyevsky's story as well. So I think where the nervous system begins or ends, and personality, these are very complicated questions.
GROSS: My guest is Siri Hustvedt. Her new memoir is called "The Shaking Woman, or A History of My Nerves." We'll talk more after our break.
This is FRESH AIR.
(Soundbite of music)
GROSS: If you're just joining us, my guest is writer Siri Hustvedt, and her new book, "The Shaking Woman, or A History of My Nerves," is a memoir about how she's coped with an unusual shaking seizure disorder that she developed a few years ago, as well as a long history of migraines. And it's a kind of medical, philosophical, introspective look at what it's like to live with this mysterious disorder and try to make some sense of it.
Well, you know, you say that once you wanted to make peace with your nervous system instead of, like, being in this constant state of combat, fighting it and worrying about it, you needed a deep reset. What was the reset button that you used?
Ms. HUSTVEDT: Well, I think it has to do with these questions of who we are, what we are. I think very much we all have a story that we tell ourselves about ourselves. We are always building narratives out of memory all the time. And those narratives are probably not exactly the truth. Memory is not something that is perfect. It's an imperfect business. But we need some kind of narrative in order to live with ourselves.
And the narrative that I was trying to construct for myself, the reset button, if you will, is that this story of illness is one, first of all, that's not killing me. I have to say, that's a good thing so far. And - but it's also a story that is not altogether horrible and negative. And I do think that aspects of my nervous system that have given me a lot of trouble, certain kinds of hypersensitivity, have also been an aid to me in my work as a writer and novelist. So there are often two sides to what appears to be a wholly negative story.
GROSS: Okay. So you know, you're talking about the story you tell yourself of who you are when something's gone wrong inside, with your body.
Ms. HUSTVEDT: Yes. Yes.
GROSS: So when something goes wrong, your narrative kind of becomes, I'm scared, I'm vulnerable, maybe I'm kind of a freak 'cause no one can even diagnose what this is. So how did you get rid of that tape loop in your head?
Ms. HUSTVEDT: Well, I think possibly because I had suffered from migraines for many years and they are chronic, I don't believe they're ever going to go away, that maybe in some sense I was slightly better prepared than someone who had never had any neurological problems. But I think, you see, this question of, you know, vulnerability is very important because everyone who gets sick feels vulnerable, whether you have the flu or whether you're diagnosed with some, you know, terrible ongoing illness.
And I think that it's very easy to feel victimized by illness. But you know, everybody does have - is ill at some point or another. And how we think about the illness, even if it's chronic, it seems to me, is essential to how we live with it. And so my search here was to try to find a sense, a narrative, a story that I could live with and I could say at the end of the book, I am the shaking woman. She is part of me.
GROSS: One of the things that has helped you with the pain of the migraines and the uncertainty of the seizures is biofeedback.
Ms. HUSTVEDT: Yes.
GROSS: Would you explain what it is and why you think it's been helpful?
Ms. HUSTVEDT: I will. I had suffered a migraine for a year. This is a long time ago.
GROSS: A year-long migraine.
Ms. HUSTVEDT: A year-long migraine. I was very ill. I was ill all the time. And finally the doctor put me in the hospital at Mount Sinai in New York, gave me Thorazine, which is an antipsychotic medicine - heavily sedates you. And I was supposed to be in for 10 days. I actually continued to feel the migraine under this huge drug. And I left after eight days. Then the neurologist, who I think was quite tired of me because I refused to respond to any medicine, suggested biofeedback.
Biofeedback is essentially monitored meditation. You are hooked up with electrodes to a machine and the more tense you are, the faster this machine beeps. So when you are very tense it goes beep, beep, beep, beep, beep, beep, beep. And the more you relax, the slower the beeps. And when you're extremely relaxed, or as the psychologist who taught me how to do this called it, Buddha-land, the noise stops.
Well, it took me about eight months. But I really trained myself to do this. And I can warm my extremities now by doing this deep relaxation. And also take away some of the pain of my migraines. So that's been a genuine tool for me.
GROSS: And it's maybe given you some sense that you can control the nervous system that always seems out of control.
Ms. HUSTVEDT: That's right. I think the sense of control, even a little bit of control, or even being able to have some intellectual sense of what's going on with you, all of those are helpful.
GROSS: Being a writer, naming things must be very important. For you, finding the word that best describes something? And there isn't a name for the seizures that you have 'cause the name isn't epilepsy, the name isn't panic attack; no one really knows what the name is 'cause there isn't a diagnosis yet. The title of your book is "The Shaking Woman, or A History of My Nerves." 'Cause the closest you've come is to saying, yeah, I'm the shaking woman. Do you wish that there was, like, a name for it so that you could say, I have this - this is the problem?
Ms. HUSTVEDT: I think there is comfort in naming. And most of us feel it when we're diagnosed with something. We say, oh, that's what it is. Either relief or fear response, whatever. But it's kind of nice to have it framed. Part of what I was trying to do in the book was to show how frail many of those frames, boxes, categories that we have are. In other words, there is no single, absolute answer often for many illnesses. And what was called something in the 19th century is called another thing in the 21st. And it doesn't necessarily mean that the 21st century explanation is superior to the 19th century one. So I am in a way creating ambiguities inside the book. I wanted to show how hard it can be with all diagnostic categories.
GROSS: So you were saying that before public speaking appearances now you medicate? You take a medication that's basically like a beta blocker, like in...
Ms. HUSTVEDT: Yes. Yes.
GROSS: Which a lot of people take for stage fright.
Ms. HUSTVEDT: Absolutely.
GROSS: So if you don't mind my asking, did you medicate before the interview that we're doing now?
Ms. HUSTVEDT: Yes. I'm fully medicated.
(Soundbite of laughter)
Ms. HUSTVEDT: I did. I have Propranolol in my system, which I think, you know, shuts down these eruptions of stress hormones, which I have a feeling are, you know, putting me into seizure mode. And so I am completely beta blocked talking to you.
GROSS: Well, I want to thank you very much for talking with us.
Ms. HUSTVEDT: I had a great time. Thanks for having me. I really - I had fun.
GROSS: Siri Hustvedt is the author of the new memoir "The Shaking Woman, or A History of My Nerves." You can read the first chapter and see how Siri Hustvedt spells her name on our Web site FreshAir.NPR.org.
I'm Terry Gross and this is FRESH AIR.