Question: What was your experience of living with your husband after his diagnosis?
Kay Redfield Jamison: I think that one of the many advantages of death accruing over a long period of time, in the case of my husband and with many people who have cancer or other chronic illnesses, is that you do have time to meet a lot of other people who are going through similar situations and one of the great delights of our life actually was sitting around in labs waiting for the results of tests and talking to other people who were waiting to find out whether their cancer numbers were going in the right direction or not.
I think it makes you very aware of just the acute pain and anxiety that people do go through. What I had not been aware of and what I was very interested in writing about was how extraordinary grief is. I mean people talk about grief as if it's kind of an unremittingly awful thing, and it is. It is painful, but it's a very, very interesting sort of thing to go through and it really helps you out. At the end of the day, it gets you through because you have to reform your relationship and you have to figure out a way of getting to the future. And grief does that. I was interested in the difference between that and depression because I had gone through depression and I thought that I might well get depressed again after Richard's death and I didn't. The similarities were interesting but the differences were to me far more interesting.
Question: Is it possible to live a full life after a fatal diagnosis?
Kay Redfield Jamison: Well I think first of all I think most people do in a funny sort of way. I think one of the things that you're not prepared for, I was not prepared for, was how exhausting it is to be the person -- I was the only person who took care of my husband and I loved being able to spend time with him and so forth. But it was tiring and I'm like a high voltage, high energy person and it was exhausting. I think that that's a really unfortunate side of that, but we counted ourselves blessed to have the time together actually. When you look at people who lose someone through a heart attack or suicide or an accident and they haven't the time to spend, we were very blessed in that respect and I don't think either of us ever took that for granted. And also we both were really busy, Richard in particular was well-known scientist and was always going off to meetings and giving papers and so forth. We both were zipping around like crazed weasels. At some point we just couldn't and didn't and wouldn't do that anymore and as a result we had just a lot of time to sit around and read together and talk and go out to movies and be with friends. It's not like he was sick all the time; just gradually make incremental changes in how he was able to get around.
But it was, it was for the most part delightful. We actually had fun. You don't lose the person; that's not true for people who have dementing illnesses or people who progressively really get so weak. But in our case, we were lucky he was able to enjoy life actually until very near the end.
Question: What was the last day with your husband like?
Kay Redfield Jamison: I think we both knew that it wasn't going to be very long before he died; that was clear from all the scans and his general deteriorating health, but we didn't have a sense that it was going to be that soon. We did. We had a wonderful last day; we had a room where we just sat and read. I used to -- he was very dyslexic and so I used to read to him. We just did. We talked and we had very meaningful talk about -- he was a scientist and he was concerned about how he would never understand the science of the disease schizophrenia that he had studied all of his life. He would never know what caused it, he would never know the treatments that came out, he'd never know the genetics of it. And this was for a scientist who's very curious, very painful for him and it was as close to seeing him very upset about things as I'd seen him, and yet after talking about it and so forth and talking about the nature of science and medicine.
And somehow it came back to being his usual actually quiet, optimistic self and it was a wonderful time we had. Yeah. I wouldn't trade that for anything in the world.
Question: Were you able to say goodbye?
Kay Redfield Jamison: Not really. Not anything other than a sort of in a symbolic sense because he got very sick, very fast and was in the ICU and unconscious, so there was no way of saying good-bye to him. I said certainly said good night to him the last night that he was in the hospital, but I didn't think he was going to die and he didn't think he was going to die. So there was no kind of final thing. When he did die and when I had the—all of life support removed from him, yeah, those kind of incredible private moments that you don't know about until you go through them of saying that kind of final farewell to someone you've been with for 20 years. It's—but I think again—and it was awful, it was painful and sad, but it was also the sort of thing—there is an intimacy to dying that he and I used to talk about. That you just don't know until you're with somebody. You have this incredible closeness and vulnerability and sense of whether or not there are going to be arguments or discussions here that are fought, we are going to take care of one another.
Question: Was it difficult to write the story of your husband’s death?
Kay Redfield Jamison: It was by orders of magnitude the hardest thing I've written. “An Unquiet Mind” wasn't hard to write in terms of the actual writing of it. With “An Unquiet Mind” it was extremely hard to decide to write it; there were a lot of things that made it difficult to go public and that was very anxiety-producing. But writing the book that I wrote now, nothing was the same. It was difficult; it was really hard. It was hard writing and it was hard to decide to write it, but it was necessary.
Question: Why was it a necessary book to write?
Kay Redfield Jamison: I think because I had written “An Unquiet Mind,” it was—that book I saw very much as a combination of advocacy and for mental illness but also trying to describe what the experience of bipolar illness was like. In my experience, with my own family, even though my mother's a deeply empathetic, wonderful woman, she had no way of conceptualizing what mania was; for example, what I felt like when I was manic or suicidally depressed. So it was a descriptive book and with this book, with “Nothing Was The Same,” this was really I think more along the lines of an elegy, which is a very, very different sort of thing. With writing a memoir about mental illness there have been a lot of memoirs in the last ten years, 15 years, but elegies have a history of thousands of years.
It's a wonderful aspect of grief that it is so much a part of the human condition, that it is so universal, that people have written about it. So it's a very different kind of writing, it's a very different kind of thinking.
Question: What’s the difference between depression and grief?
Kay Redfield Jamison: I mean, in some cases, some people do get depressed in the middle of their grief and they really need to be treated for depression. But what I wanted to do was make the distinction, as many people have, is that grief is fundamentally a healthy sort of thing; it's human, it's not a disease, it's nothing you want to medicalize. You don't want to treat it away, you don't want people to suffer unnecessarily, but you certainly don't want to take away the experience of that kind of re-establishment of a relationship. And depression, the experience is unremitting for the most part. I mean, it's not like you don't get very much of a break from depression. Grief is different. Grief is much more tidal; it comes and goes. Anybody who has grieved knows and will describe that just being swept by a wave of grief. You think that you're over it, you think you're to the other side, and then all of the sudden you get blindsided by a wave of grief and each one of those waves of grief I am convinced serves a good function in the mind and heart, in the terms of forcing you to have to see somebody in a slightly different light. Each time is a slightly less painful.
Depression is just unremitting, it is much more disruptive of sleep, it's -- you're much more likely to be impaired intellectually with depression. It just goes on and on and people think about suicide. Grief can respond to the environment. It can respond to solace. One of the things that's pretty interesting is that literature does help. I think that when you're depressed, you can't concentrate long enough and well enough to read for the most part; some people can, but by and large people -- that's one of the first things that goes, is the capacity to read meaningful literature. With grief, that's not true. For a while you can't read, but then you really are amenable to solace. From friends, from family, from colleagues, from the rights of church, whatever it is, music, poetry, and in my case, I turned more to literature and I found it immensely helpful.
Question: Which authors were helpful to you as you grieved?
Kay Redfield Jamison: Well, I had read Tennyson's “In Memoriam” when I was 17 years old, in high school, and I had a psychotic depressive break at that time. I read him and I stood in awe of his capacity to capture that rhythms of life. The despair and the regeneration and the hope, and I suppose that there is something in Tennyson, and I turned to him after my husband died, that you read this and you're in the process of somebody who has been wrecked by pain. There is none of the kind of tidying up, it is agonizing pain and he doesn't make any apologies for that whatsoever. And he goes over -- it's a poem that was written over nine years, and over the seasons; “Christmas to Christmas to Christmas,” and the tolling of the bells and each time there is a different tolling of the bells, each time there is a different aspect to the Christmas season. There is something in that, to me, that captures grief. Each year it is different.
Question: Is grief a physiological, treatable experience?
Kay Redfield Jamison: I don't think grief of grief in a medical way at all. I think that I and many of my colleagues, are very concerned when grief becomes pathological, that there is no question that grief can trigger depression in vulnerable people and there is no question that depression can make grief worse. All those people you really want to treat, but overwhelmingly people will do well by grief. I mean, it's the furthest thing from a medical condition; it is a human condition, it is from literally the first death, someone mourned. That wasn't sick, that's our capacity to appreciate that -- what we are missing. So I think it's a terrible thing to think of it as in anyway as pathological; it can become pathological. Again, I think that I just came out with a respect for grief that I never thought I would have.
Question: How do you pick up and move forward after losing a spouse?
Kay Redfield Jamison: With incredible difficulty. I think the initial days and weeks are protected a bit by shock, that society tells you there are certain things you have to do; there are certain legal things you have to do, there are certain—the funeral, all those things. The arrangements that keep you kind of occupied up to a point. It's those devastating moments when you start going through clothes and letters and correspondence and keys and all those private things that were someone else's that you learn different things. It is deeply private, there's no question about it. I think that people understand up to a point but nobody can understand because for each person that loses that person, the memories are idiosyncratic. You are the one that remembers what your relationship was and that is incredibly private and you are the one who recognizes the things that you'll no longer have, that you're going to have to do things on your own. They are just—you just can't rely on someone's support and love, you're going to have to do it yourself.
I think one thing is just to recognize up front that it's going to be really hard and, secondly, that other people can be really wonderful. If you've got good friends, it's great. And also, again, to reach out for solace because I do think you can get solace; sometimes through music, sometimes through religion, sometimes through reading, sometimes through friends, but usually through friends and family.
Question: What is it like to share your loss so openly?
Kay Redfield Jamison: Well, it's very odd and one of the things that I wrote about in my current book was the experience of going public in “An Unquiet Mind” and the public and professional repercussions of that, the loss of privacy. One of the things that was very hard for me, aside from the professional aspects of talking about having been psychotic and having tried to kill myself and realizing that I was going to face my colleagues in academic medicine, was that I was really brought up like most people who really [keep] your personal life private. And I was brought up in the military and I'm an Episcopalian and those things don't make you very likely to put your private life out there and I was brought up in a family where you kept—a really warm family; I love my family deeply, but you sort of got a grip and you didn't talk.
My husband, oddly enough, who was a very reserved man, was the one who really pushed me about “An Unquiet Mind” because he said—I said on the one hand I'd had all these reservations of privacy and professional things and on the other hand I thought it was the right thing to do as an advocate that people needed to talk about these things. He studied schizophrenia and he treated people who had schizophrenia and he said, "You know, there is an obligation to do it and I will back you, and of course it's personal, of course it's private, and of course it's going to be excruciating for you." For the first 30 or 40 times I got up and talked about my manias and depressions, all I could think of was my grandmother with her white gloves and her hat and I would just be mortified. I was thinking, "What am I doing talking about this? How could I possibly talk about having tried to kill myself? How could I do this?"
And yet, you know, at the end of the day, you do it because you hope that it will help. It will be one part, one small piece, in making people more comfortable about it. If people can talk about having breast cancer, why can't people who have mental illness talk about mental illness? Until we're able to do that, we're not going to be treated with the same kind of respect for our diseases as other people. And my husband saw that absolutely clearly. And actually a fair amount of the first part of the book is about how he dealt with my own illness but also how he encouraged me and I think that's where the role of other people—nobody has a disease alone, you have a disease with other people around you and I was very fortunate in having this particular person in my life.
Question: When did you first realize you were manic depressive?
Kay Redfield Jamison: Well I suppose it's funny, it's a little like the waves of grief. I think you have waves of awareness and one of the things that I found with grief was actually -- I was well prepared for it by the cyclicality of my manic depressive illness because I was used to things coming and going and so forth. So I think that my awareness of having bipolar illness really—I was 17, I got very, very depressed and I was psychotic and I didn't have any energy and I was totally—I just—but I didn't have the words. People didn't talk about it at that time and people certainly didn't have the words “bipolar illness” or “manic depressive illness.” So I just was terrified. I had no idea what had happened to me and I was very frightened and I was frightened it would come back, but I got well and then I did what everybody, or most people do when they get well, I sort of put it behind me again. Then it would come and hit me again and again.
So I knew there was something wrong. I started to see a Psychiatrist, tried to see a Psychiatrist when I was in college and I ended up just running away and I couldn't tolerate the idea of doing that. But then when I was—I took out my degree and I joined the medical school faculty at UCLA, I became ragingly manic and very psychotic, hallucinating, delusional. I didn't have any choice. It's the great advantage of having an illness as severe as mine is that you are automatically brought in to the medical care system. If you have—as long as it was milder, I could kind of get by with actually without to face what I was—the severity of my problem. I knew the person I wanted to see, it was somebody I had trained with. He was my clinical supervisor and I had seen with patients and I had seen that he was tough and smart and compassionate and humanize, but also knew science and medicine.
So I went to him terrified and he was just absolutely firm in his diagnosis; he just never wavered and he just said that's the way it is. But he was kind about it, but he didn't back off from it and he was a great Psychotherapist. So one of the things I've tried to do in my professional life, like a lot of my colleagues, is to emphasize that medications just aren't enough for many people with these illnesses because, exactly what you are saying, how do you become aware of an illness. You become aware of an illness by understanding yourself and understanding the meaning that that illness has in your own life, symbolically and, more importantly, quite literally.
Question: What was it like to be psychotic?
Kay Redfield Jamison: Well, I primarily have been in the psychotic [state] when manic, which is not uncommon with mania, and it's been mostly when I've been manic it's been a very exhilarating sort of thing, including the hallucinations. I've went around the solar system, I went to Saturn in my mind's eye. I went through star fields. It was a glorious sort of ecstatic experience, which is frequently the case with mania. When you think about a lot of the great religious ecstasies is a very manic quality to that and a very grandiose as they tend to be very universal, cosmic, related to everything is related to everything. But I also had some very bad ones. I've been hallucinating myself as dead or just covered with blood. Mania can be as terrifying as it gets. It is certainly as insane as one gets and so it's frightening when it gets out of control, but there are periods of mania when it can be extremely attractive.
Question: What were your depressive states like?
Kay Redfield Jamison: In depression, your capacity to feel just flattens and disappears and what you feel is pain and a kind of pain that you can't describe to anybody. So it's an isolating pain, a completely isolating pain. It's for people with bipolar illness in particular, it is a deadening lethargy coupled with an agitation and restlessness at times, but it’s the sense of having no energy, no interest, no passion, no life.
So, for me, like everybody else who gets severely depressed, there comes a point when you say, "OK. If I can't feel, if I can't care, if I can't think, I can't concentrate, I can't remember, I can't read, if I can't love, where am I? Who is in there? Where is the humanity? It's gone." And the pain is agony, it just is unrelenting. In my case, I had stopped my medicine, my lithium, and I had gotten wildly manic and then I got paralytically depressed for 18 months. There was not a time during those 18 months that I can remember feeling OK. At some point I tried to kill myself. I think, again, it's very hard to describe the kind of pain that goes on in severe depression because it's just the words are not there.
Question: Why did you finally turn to medication?
Kay Redfield Jamison: I, quite literally, woke up from a coma, from having tried to kill myself and it was very clear to me what my psychiatrist had been saying for years. The choice is not between a drug that has side effects or not, life is not ideal. Yes, your drug has side effects and yes if you don't take it you're going to die. And I—that had been clear to me, but there is something really crystal clear about actually nearly dying. I have not, since I emerged from my suicide attempt, there has not been a day that I have not taken my medication.
Question: Could you have coped with manic depression if you hadn’t been a doctor?
Kay Redfield Jamison: It's hard to say. I mean, I had the advantage, as I said, of having been treated by someone I knew was a superb clinician. Most people don't have the advantage of being able to evaluate their doctor in advance. So, that I think was a huge advantage and particularly since, in my particular illness, one of the worst things that can happen for a certain kind of severe bipolar illness is be given antidepressants, is that my psychiatrist knew better and didn't do that or only for a very short term and very controlled periods; very, very short and only once or maybe twice. So I am very fortunate in that respect. I would never say how fortunate I was. On the other hand, there were real difficulties because I was constantly concerned about losing my license, somebody finding out, so I didn't go into a hospital and the California Commitment laws were such that I could keep out of a hospital and I should have been in a hospital. I should have had ECT and I now have Advanced Directives written out for my doctor and my family that say, "This is what I want done. If I get severely depressed again, if I get manic again, I want ECT, I want to be treated at John's Hopkins, I want to be treated by the following doctors. I do not want the following medications. I do want the following medications." All the things that you know we encourage people to do in advance, I do. But at that time, it wasn't really possible.
Question: How do you identify manic depression?
Kay Redfield Jamison: Again, it's hard. One of the things that has been great over the last ten years or so are people a lot more educated about it, particularly young people. I spent a lot of time on college campuses because it is an illness that hits young. I am just staggered by the amount of information, not all of it accurate, but a lot of information that people have, much more than their professors and their administrators do about these illnesses, particularly about depression. I think that one of things, you know—for example, at Hopkins we have a very active program that goes out into the public and private schools in Baltimore and Washington and now across the country and just teach people the symptoms of depression. Just in a very straightforward way say, "These are the symptoms, really treatable illness, important that you are treated early." Matter of fact and so forth. Teach the teachers. Teach the parents; parents learn all about these mondo bizarro diseases that nobody gets and they don't learn about depression, which is what is actually most likely to hit one of their kids.
So I think there is more education out there. With bipolar illness it is more complicated because it often gets tied up with alcohol and drug abuse, agitation, problems with behavior that people don't necessarily associate with psychiatric problems.
Question: Are anti-depressants over-prescribed?
Kay Redfield Jamison: Well I think that—a couple of things. First of all, I am a huge advocate of prescription drugs given wisely and for the right reasons and the right diagnosis and also psychotherapy. I think psychotherapy saves lives and is hugely meaningful and I think that one of the unfortunate aspects of prescription drugs working well is that people tend to think that's enough. Usually it's not enough; sometimes it is. There is no question in this day and age that I think there is a lot of over-prescription. From a public health point of view, still the overwhelming problem is that people are not treated enough for depression; depression remains under treated. But are there certain zip codes, education levels, areas of the country where people are medicated if they are just a little volatile, little moody-broody, series of bad days, break up with a relationship? Yeah. There are and it's outrageous. I don't think anybody would defend bad practice and it's against gets along your earlier question about medicating grief or medicalizing grief. It's the same thing. It's the last thing you want to do is be medicating people because, a, there—these drugs do affect the brain. Now, they affect the brain in a lot of good ways as we're finding out in terms of regenerating parts of the brain that are damaged and it's important to put it in the perspective of both mania and depression are very toxic conditions to the brain. They are really bad for the brain and most of the medications are really pretty good for the brain, but for sure they're definite pockets of society where people are just over-prescribed.
Question: What is the relationship between creativity and depression?
Kay Redfield Jamison: I think that for thousands of years people have made the observation that there are certain kinds of extreme depressive states that seem to be more likely to produce philosophers, people in the arts, unusually brilliant scientists. In modern studies, a lot of modern studies have born that out, that there is a disproportionate rate of mood disorders, of depression and bipolar disorder in highly creative groups in the arts, sciences and so forth. I think that that's a real phenomenon. I think that the changes that go on in the brain when people are mildly manic, the experiences of extreme states, the kind of experiences that people then go on to write and create about. All those things I think are reasonably well documented. It's controversial but it's actually the studies are almost all in the same direction.
That doesn't get away from the fact that these people, a lot of these people who are highly creative also had very miserable lives and I try to point this out when people start romanticizing mental illness, is that Byron and Van Gogh wanted to be treated. Byron traveled with doctors. Van Gogh admitted himself, finally, to the hospital. They were in agony, in pain, and suffering. So it's not a romantic life; it may look romantic from the outside, but if you read their letters and their correspondence with friends, it's not anything wonderful. Many of them died young by suicide and the rate of suicide is also way disproportionately high in these highly creative groups. It's the last thing you want is people dying young, dying prematurely in any event.
So I don't think it has to be a choice between being creative and being on medication. In this day and age, we've got a lot of a wide variety of medications and psychotherapies and people are kept at much lower doses than they used to be. It used to be in the early days of lithium, people were really tanked up on lithium so that I think it really did have an affect.
Question: What’s the most common misconception about suicide?
Kay Redfield Jamison: I think people don't understand how intimately tied suicide is to mental illness, particularly to depressive illness and bipolar illness. I think that there is a tendency to see suicide as a reaction to a bad event in ones life and you read the papers and you see that somebody had a financial reversal or broke up with somebody or didn't get into graduate school or whatever it is, and that is presented as the explanation and nowhere it is mentioned what shows up on the psychological autopsy is a person who had depression from the time he or she was 13, they used alcohol, they were impulsive. All the things that we know go in to suicide.
Question: Why is suicide so prevalent among college-aged students?
Kay Redfield Jamison: Well, it's partly prevalent because there are relatively few things that kill people that are that young other than car accidents and suicide. It's also—there is a very interesting relationship between age and suicide and bipolar illness, for example, that under the age of 30 you're just much more likely to kill yourself. A lot of people with bipolar illness who were over the age of 30 unfortunately killed themselves as well, but you're much more likely—and some of it is the protuberance itself may be a little bit more variant. People are more impulsive and they get slightly less impulsive as they get older and the impulsiveness interacting with the depression is particularly devastating and lethal, potentially lethal. But it's also the case that these often kids who haven't been accurately diagnosed, haven't been medicated properly, aren't in psychotherapy, so they—or if they are, they've stopped taken their medication because medication non-compliance is more likely to occur earlier on in the illness.
So you have all these terrible things that conspire against young people.
Question: Are there policy changes that might help people to cope with suicide?
Kay Redfield Jamison: Well, I think that—I mean, until recently, of course, there was no parody, there was no pretense of insurance coverage or treatment. So in a way you could get up and you can talk until the cows come home and you say, "These are the symptoms of depression. Get a second opinion. Do all the things you know that are..." But if people can't afford it, it's meaningless at some fundamental level and I think actually the current administration is very dedicated to doing something about coverage of mental illness and I think they are also very aware of how costly it is to society at a human level and at an economic level. I think they are very intelligent about that. I think Internists and GPs are much more aware of the relationship between depression and cardiovascular disease, for example. So depression is being taken much, much more seriously than it was. For a long period of time, psychiatry as a field didn't have much credibility and a lot of that was brought on my psychiatry. Now, there is so much more science, there is so much more credibility to our understanding of the brain and treatments.
So, I think things are changing. At the college level, a lot of the same things. A lot of kids don't have the insurance or the insurance runs out very quickly, they don't have enough sessions. I spent a lot of time talking to college administrators and students about this and it is very frustrating, or they are sent on medical leaves which really means in many instances don't come back until you've proven that you're well. It's a real catch-22. So it's a devastating time and I think that people just need to be more informed. It's a treatable illness. You have no excuse for not getting treated and you have no excuse for not putting your wing out and showing compassion and understanding.
Question: What keeps you up at night?
Kay Redfield Jamison: I think probably death; the idea of death. Not the idea of, the reality of death. Of frittering away time that I shouldn't be. My husband was somebody who did not fritter away his time and I respected that enormously. I was much more just wandering around, going to the zoo, and so forth. And then some ways it's just different styles and different ways of thinking, but I'm very aware, since he died, that it's easy to let time rush by and I don't want -- I didn't want to feel like I haven't done what I could do.
Recorded On: September 30, 2009