LIVING WITH ILLNESS
with NAOMI REMEN, M.D.
JEFFREY MISHLOVE: Hello and welcome. I'm Jeffrey Mishlove. We live in an age when scientific medicine has enabled many individuals to live, sometimes for decades, with illnesses that once would have killed them in a short time. Our topic today is "Living with Illness," as opposed to dying from illness. My guest, Dr. Naomi Remen, is a transpersonal psychotherapist, a former pediatrician who gave up medical practice in order to specialize in the spiritual and psychological aspects of living with chronic illness. She treats patients who have cancer and other long-term illnesses. She is also the medical director of the Commonweal Cancer Help Program in Bolinas, California, and is the author of The Human Patient, which won the Medical Self-Help Book Award in 1981. Welcome, Naomi.
NAOMI REMEN, M.D.: Thank you.
MISHLOVE: You know, illness is something that is so overwhelming and frightening to people. I think many people, and I must say including myself, often feel that getting sick is the worst possible thing that could happen.
REMEN: Well, you know, as I told you before we began, it happened to me thirty-seven years ago, and I've had major surgery seven times. I have an incurable illness. I was told by my doctors when I was fifteen years old that I would be dead by the time I was forty, and of course I've been dead now for twelve years.
MISHLOVE: You look beautiful, as a matter of fact.
REMEN: Why, thank you. That unnerves me. I think that my illness has been brutal and difficult and cruel. I think it also has brought into my life a great deal of the richness and the meaning that I have now, which I might not have had without it. So it's a little bit of a paradox.
MISHLOVE: Well, there's something about confronting tragedy, confronting these things that we fear so much, I suppose, that can bring out the deepest, the noblest, most elevated or sublime parts of ourselves.
REMEN: Also the smallest and most frightened. And I think that's what gets left out in the whole new-age theoretical approach to illness that it is this magnificent educational experience. What illness evokes from people in my experience is the truth, whatever that is, and it evokes the full range of human nature. And many people discover to their surprise that they have much more in them and to them than they had ever expected, and that life is more meaningful -- simply life itself, not this job or this appearance or this house that they live in -- but just being alive has value.
MISHLOVE: I imagine that one of the first issues that confronts people when they get ill is a sense of guilt, especially, as you say, with this sort of new-age attitude that you are responsible. People may feel, "Gee, what did I do to cause this?" And that I suppose could become crippling psychologically, in a way.
REMEN: Well, it certainly isn't empowering. And while many of us can do things to help ourselves, I think that the cause of illness is certainly shrouded in mystery. I mean, if you want to go towards the Eastern philosophy, the whole issue of karma arises. I see karma not as guilt from a former life, but an opportunity to do world service, an opportunity perhaps to refine the quality of our consciousness. And illness and suffering certainly do make us more transparent to the light. It really does work that way -- without our trying to make it work that way; it's a natural thing that happens.
MISHLOVE: Well, I guess in a philosophical sense it brings us closer to confronting ultimate issues of our existence, our meaning and purpose in life. And yet there's a tendency in our culture as well to not want to do that -- to brush away not only deep philosophical issues, but questions of life and death and illness. You know, we rather live in a more sterile kind of environment, I think, culturally, where we're not confronted by these things.
REMEN: Actually, I think more and more we are. I think people are faced certainly with decisions now that they never faced when I was young. My sense is that in the future there is going to be a great deal more testing of people, and I think we're going to have to learn more why we live -- you know, why is it that we want to live, and why does life have value?
MISHLOVE: Well, I suppose certainly with the advent of medicine, as I mentioned earlier in the introduction, people who once would have died quickly of many diseases now can live for a long time. And I suppose also with a whole new range of chemicals in the environment people are developing reactions and allergies of different types to these chemicals, which become chronic.
REMEN: Well, I think this is true. But I think there is something to be learned from people who are living with illness. And what we learn, what I've learned about it, is what are the human needs of us all, because these needs somehow become bigger when a person, let's say, has cancer. For example, we do the retreats at Commonweal, and I also see thirty people a week with cancer and talk to them one on one, and work with them around their feelings. We have been asking on the forty-six retreats that we've done, we ask people, "What is the hardest part of having cancer for you?" And people don't say the chemotherapy, they don't say the radiation, they don't say surgery. Sometimes they say bodily change. But almost everybody says the isolation. The hardest part of having cancer is feeling so isolated from other people. You know, I think that recognizing that belonging -- belonging somewhere, being accepted for who you are, knowing that your life matters to other people -- is a basic human need, not just of people with cancer, but of us all. And somehow many of us don't realize this. We don't realize how to make our lives healthy and worthwhile. We can learn something.
MISHLOVE: Well, I think there's a great deal of awkwardness around this whole issue. People don't know how they can help, and sometimes they feel, well, I can't help; it's better to do nothing at all. It often leaves people isolated for that reason. How can we help?
REMEN: Well, can I tell you a story? I have a wonderful client who is a young woman psychologist who has recurrent breast cancer, and she's a fine athlete. She used to run in the park with a very well known humanistic psychologist in Berkeley, and when her cancer recurred she couldn't run in the park anymore. And as she got chemotherapy, as she began to get better, she called up this man to run with her, but somehow he never returned her calls, and so she'd run alone. She'd see him there, and he'd turn his face away from her. After her chemotherapy was complete and she was up to her full strength, she was running one day in the park and she saw him, and she ran up to him and she said to him, "Dr. So and So, I just wanted to tell you that your not answering my calls and not meeting my eye when we meet in the park here has hurt me, and I just wanted you to know that." They ran along for a while, and suddenly he turned to her and he said, "Gee, I thought that if I talked to you about it, it would make things worse." This is a therapist, a man who knows that pain shared becomes healed. So I said to her, "What would you have wanted him to say?" Obviously he was worried that he couldn't say the right thing to you. What would you have wanted him to say?" She said, "What I'd like him to say was, 'I heard it was a tough year for you. How are you doing.'" A simple human thing. What we forget is people have been helping each other with pain and loss and grief for thousands of years, and there isn't a right and wrong way to do it, there's just a caring. And the caring is what matters, not the words.
MISHLOVE: It's really just more a question of being there than what you say. Even if you kind of bungle your way through it, it's better than --
REMEN: That's right.
MISHLOVE: Sooner or later the heart connection will be there.
REMEN: That's right. You know, it's so sad that we don't realize that we are enough. Just our caring, our love, our concern, is enough. And you know, isolation not only is painful for people, but there's some evidence that it weakens the immune system -- that when we are together, when we are touched by other people, either physically or in our hearts and minds, somehow this mysterious thing, the will to live, actually gets strengthened in us.
MISHLOVE: Well, when people are dealing with chronic illness, is it the case that they sort of slowly fade away, that they get a little weaker, that their condition gets a little worse, that people have to watch this over a long time -- like the long goodbye, a very painful, slow, agonizing process? Is it like that?
REMEN: For a great many people, no. I mean, a lot of people get healthier with chronic illness, because they begin to consciously tend the life in them. Most of us take the life in us pretty much for granted, and we feed ourselves things that we wouldn't feed our pets, and we think the body can do things that it can't do. We treat it as if it's made out of cast iron, not as if it's something living. But what we don't realize is that it can do this rather remarkable thing called healing. It's a gift of the body. It's a biological gift. Sure, people do die, and in dying their greatness may become a great deal more apparent. This may sound like Goody Two Shoes, but I think it's a fairly common experience that if you're willing to be present with people who are very ill and dying, they may be able to teach you how to live better, and why to live, and to appreciate the quality of your life.
MISHLOVE: Now, I asked you a little earlier about how can we help, and I'm gathering from our discussion that one thing that can be very helpful is to be able to learn from people who are ill, because they have something to offer.
REMEN: In the same way that all life experience has something to offer. This whole business of illness as an educational experience in some ways misses the point.
MISHLOVE: You don't want to romanticize it.
REMEN: Exactly. Boy, I get so many people who come in to the office having been told by someone that what they're experiencing is such a blessing and a joy, and they've lost a breast or they have a brain tumor, and there's some kind of a denial of reality here. And yet that very same person, in meeting with that illness, may find within themselves and within the people around them something which they didn't know existed.
MISHLOVE: In other words, it's not just a denial, it's a denial only in the sense that it doesn't acknowledge that it's also very painful.
REMEN: Exactly, exactly.
MISHLOVE: To say that illness can be a great learning experience has a truth to it.
REMEN: Yes it does, but if you tell someone who's in the throes of pain and loss and grief and fear that this is going to be the most wonderful experience of their lives, you are denying the person who is standing in front of you, and you are invalidating their feelings. And from that place that person can't grow. That person feels that their pain or their fear, there's something wrong with it. And it's just human to be afraid.
MISHLOVE: So you're suggesting just kind of being there with it again. Then there's also, I think, maybe a trap on the other side, which is people who don't want to give false hopes, and don't want to say anything encouraging or comforting.
REMEN: You're really pressing on a big button for me. I think part of the false-hope issue comes around the need of, let's say, a health professional, or the need of a family, to protect a person who is ill against disappointment. The reality is, anybody with a serious chronic illness is very familiar with disappointment, and they probably have learned how to handle it a whole lot better than the person who's trying to protect them from it. In protecting people from disappointment by not giving them "false hope," what we end up often doing is giving them false despair. In my experience people can live with disappointment, but what people can't live with is hopelessness. I'm not talking about people hoping for cure. We all hope for something. Even at the point of death, we may hope for something beyond death. I mean, hope never is taken away from people. It's impossible to live without it.
MISHLOVE: Well, when somebody gets ill, I'm sure they're confronted with a whole range of emotions. Their mind must be spinning at times, and perhaps they go back and forth, people I have known, from moods of deep despair to sometimes sort of a very wonderful serenity and acceptance of their condition, and then back into despair. We hear so much about the role of emotions in healing and in living with illness these days -- you know, how anger can make you sick, and how humor can make you well. What's your experience of this?
REMEN: I think it's very sad that we're all looking for the quick and simple answer. It's almost like what's the bottom line? And my sense is, life isn't simple. Life is rich, complex, mysterious. I don't think there is such a thing as a dangerous emotion; I mean, that smacks of mind control. If anger is dangerous, then life is dangerous. If sadness is dangerous, then life is dangerous. My own experience tells me that anger can be a way for a person to engage with life. If I'm given a diagnosis like the one I was given when I was fifteen years old, and told that I would live until I was forty, and if I don't get angry, I may not love life enough to live to fifty-two, which I seem to have pulled off.
MISHLOVE: And you look like you're going strong.
REMEN: Hopefully I am. What I would say is this. All feelings have their truth in them. Anger to me is like a demand for change -- an unwillingness to accept being an invalid, for example. If someone is only angry, or if their anger seems to come not from what's happening to them, but from some long-ago event that they've never been able to heal, well, then they need to go and work on that anger. But anger itself is not dangerous for people, I don't think. As a matter of fact, it's the life energy itself -- maybe expressed in a way that's difficult, but it's life energy, it's good energy.
MISHLOVE: And how about depression and despair?
REMEN: Ah. Now, depression is not a feeling. Sadness is the feeling. And you know, sadness is one of the heart feelings. Love and sadness are the ones that connect us to each other. Sadness has some quality of compassion in it -- either for yourself, or for other people. Depression, however, I think is dangerous. And by depression I mean that kind of numbing that happens to people. You know, about, I would say, two-thirds of the people in my practice have cancer or Crohn's disease or epilepsy or what have you. Another third are health professionals and doctors and nurses, some psychologists. These are the very depressed people. They come in and they say, "I don't seem to be able to feel anything anymore. I feel numb. I feel separated from life, from people. People are suffering right in front of me. I feel like I don't care."
MISHLOVE: Which is sometimes an attitude we train people to.
REMEN: I know.
MISHLOVE: Especially health professionals don't get too involved.
REMEN: Well, it's a very interesting position. You want to walk the path with someone, and not get swallowed up in their position, because then there's nobody there to be the witness, there's nobody there to say, yes, you feel the sadness. There may be sadness; there may be also something beyond that. So the position one stands in with respect to another person is a very sensitive thing; and by the way, I think that the archetype of the wounded healer -- have you heard of that, Jeff?
MISHLOVE: Oh yes, certainly -- the shaman.
REMEN: Well, I think that's a fancy word, and I think that many people don't know what that means -- you know, the shaman. But when I talk to people in my practice about this, I say, "You know, both of us are wounded people; that's how you can trust me, because I'm wounded also. There are only wounded people. And because I'm wounded I know how it is with you, and you don't have to feel what you're feeling alone. I know how it feels to be this frightened or this alone or this despairing. And furthermore, my woundedness can evoke your healer, and your woundedness evokes my healer, and our healers can collaborate." It's not the way I was taught, which was that I have all the power and you are the person who comes to me for the healing. If we stand in right relationship, the healing is something that happens between the two of us. Both of us are healed. Neither one of us loses by that in any way. It's the nature of healing.
MISHLOVE: That's such a powerful expression of really being with that person.
REMEN: Well, yes. My sense is you miss life unless you're with the person in that way. How can I put this? When I was doing a more traditional thing, pediatrics, I thought it was my job to fix people, and I was very much into the success and failure of that. I was a good doctor, a good person, if I could fix someone, and a failure if I couldn't fix someone. And of course the kind of people I work with now would be the last people in the world I would want to work with, because they have chronic illness, not fixable by and large. And my sense is that there's something so much beyond fixing. Fixing is a strategy for lifeless things, you know.
MISHLOVE: We fix machines.
REMEN: We fix machines. We fix things that don't have in them the impulse towards wholeness that all living things have. When we fix something, we deny the life in it. Well, you've got me obviously on a roll; can I continue with this?
MISHLOVE: Yes, please.
REMEN: I'm going to say something. I'm not a feminist, but I am a person who believes that human beings need to be able to function from both the masculine sides of themselves and the feminine sides of themselves. Fixing is a masculine strategy. It's a doing thing. You know that symbol, that little circle with the spear on it?
MISHLOVE: The astrological sign for Mars.
REMEN: It's also the sign for maleness. If I relate to you from the male side of myself, if I fix you, you will feel the point of that spear, that little arrow. What you feel is my strength, and you feel small.
MISHLOVE: Like if I get a shot of penicillin, right?
REMEN: Like if I do brain surgery on you. I mean, you may be cured, but you feel somehow beholden to me, and I have the power. You feel the strength of my Mars-ness, but you're not in touch with your healing, which is what enabled you, really, to get well. If I relate to you in a more balanced way, from the feminine side of myself -- you know this one, that's Venus' mirror. I hold up the mirror to you, and you see reflected there your own strength and your ability to rise and become whole, out of whatever pain and suffering you happen to be in. My sense is, if fixing is the only strategy, that second option, for you to use your suffering to know your wholeness, doesn't even exist. And I believe that that's the most important part of all.
MISHLOVE: I gather this is part of your motivation for dropping out of the conventional world of medicine.
REMEN: Well, I believe in the conventional world of medicine. Let me say fairly, without the conventional world of medicine I would not be here talking to you. However, with just the conventional world of medicine I think I would have turned out to be an invalid. So there has to be a right and a left hand.
MISHLOVE: We have only a few minutes left. Let me just bring up one other issue. For people who are not healers themselves, but who are living with somebody who is sick, there must be some special issues for them as well.
REMEN: Many special issues. The husband of a client of mine said to me when I was giving a talk on living next to cancer, he said, "Tell the people that live next to cancer that they're the invisible heroes -- that all of our friends have called for two years asking about Susan; not one person has asked me how I was." It's a very, very powerful thing. But you know, the real healing is not done by health professionals; it's done by those of us who love people who are ill, who help them to see that their life matters to us, and give them the strength to deal with whatever they have to deal with. So the people living next to the people with cancer are the real healers.
MISHLOVE: And yet in being such a real healer, I get the sense that one either becomes wounded or becomes aware of the wounding that is already there.
REMEN: You mean in themselves?
REMEN: Hm. That's interesting. I'm just thinking of a poem. It goes like this: "I had a dream that honey bees were making honey in my heart out of my old failures. There is no wrong or right. Beyond the wrong and the right there is a field. I'll meet you there." I think that's what happens to people if they accept the illness of people who love them. They get beyond the wrong and the right to something that's true, and that's really important.
MISHLOVE: Yes. Dr. Naomi Remen, what a pleasure to spend this time with you.
REMEN: Thank you, Jeff.
MISHLOVE: I really have a sense from our conversation that the work of living with illness is a work of deepening, ultimately. That seems to be the word that captures it best for me. Thank you very much for being with me.
REMEN: Thank you for having me.