It was a rabbit hole of reading I went down on “day whatever” recovery from covid. My daughter and I shared a joke that she is homeschooling me as she works through her Political Science University program.
It was Cultural Studies (Canadian Women Studies), a paper on “Feminism, Disability, and Transcendence of the Body”. On the very last page, “references”, I, one by one read each source that had done some research on body/soul/illness in one way or another and contributed to this paper. I came across the below on another site “The Sound of Water” and I hope you enjoy the reading as much as I did…………..
Do We Make Ourselves Sick? By Ken and Treya Wilber
From New Age Journal, Sept. 1988
Here’s a provocative counterargument to the trendy notion that we cause and can cure our own illnesses.
By Ken and Treya Wilber
Ever since Shirley MacLaine went out on a limb and described her newfound spiritual powers, the slogan “we create our own reality” has become something of a self-help panacea.
Clearly, a strong sense of personal empowerment offers a healthy alternative to a passive fatalism about life, a point convincingly argued by Yale surgeon Bernie Siegel in his bestselling book Love, Medicine and Miracles. However, in recent years a more extreme interpretation has taken hold in the alternative health field, a belief that we are personally responsible – on a conscious or unconscious level – for everything that happens to us.
This idea is touted not only in MacLaine’s work, but also in a plethora of self-help books, perhaps most notably Louise Hay’s You Can Heal Your Life, a surprise bestseller that made it onto The New York Times self-help list. Hay, who says she used this philosophy to cure her own cancer, holds that “we are each 100 percent responsible for all of our experiences,” “we create every so-called ‘illness’ in our body,” and “when we really love ourselves, everything in our life works.” This unqualified assessment of human healing potential, apparently based on interpretations of metaphysical ideas such as karma and reincarnation, would be an understandable comfort to those facing serious illness – unless, of course, they fail to think themselves well.
In the following conversation (adapted by the author from several past interviews on the subject), Ken Wilber, an expert in transpersonal psychology, offers a more sophisticated – and perhaps more compassionate view of the role we may play creating and healing our own, illnesses. Wilber, the author of eleven books and some two hundred articles on spiritual and psychological subjects, has not relied solely on scholarship in forming his provocative theories: Just ten days after his 1984 wedding, his Wife, Treya, was told she had breast cancer.
In an accompanying piece that begins on page 54, Treya, the co-founder of The Cancer Support Community in San Francisco, describes how she came to see her illness not as a spiritual punishment, but as an opportunity for spiritual growth.
The authors at their home near Boulder, Colorado: “Life is too wonderfully complex,” says Treya, “and we are all too interconnected – both with each other and with our environment – for a simple statement like ‘you create your own reality’ to be literally true,”
A conversation with Ken Wilber
There is a popular “new age” notion that illness is something you have deliberately but unconsciously brought on yourself to teach yourself an important lesson. What do you think of that?
Like most new age ideas, I find that to be a rather narcissistic notion, in addition to being simply wrong.
You’d better elaborate on that…
The “new age stance,” as I have come to see it, is largely defined by its narcissistic, grandiose, and omnipotent fantasies. And one of these grandiose fantasies is that, if we want to, we can “visualize” disease as going away and the disease will simply go away.
But sometimes that does happen
Sometimes that does happen, definitely. And, in 99 percent of the cases, it doesn’t. You have to account for that vast majority where it doesn’t. And any careful examination of this field shows that that vast majority is shot through with magical or wish-fulfillment thinking. “I can think my disease away.” That’s pure fixation on the magical level.
But I don’t see how you can say that. You already have admitted that at least sometimes – even if in just 1 percent of the cases actual healing happens because of visualization, for example. Therefore, if it can happen, I would be an idiot not to at least give it a shot. That’s not wish-fulfillment or magical thinking. That’s hard-headed and completely rational thought.
Everything you say is true. That’s not quite what I’m talking about. You are talking about the genuine but rare instances – I don’t know if it’s actually 1 percent or 5 percent or 10 percent, but we all agree it’s fairly rare but definitely real nonetheless – you are talking about those rare instances in which apparently, the mind can initiate a direct and immediate healing response through, say, visualization techniques. That’s not at issue.
At issue is the notion that, unless something is spiritually wrong with you, you should be able to do this all the time. And that if you can’t, you should feel profound guilt. You have brought this disease on yourself, you see, to teach yourself some sort of lesson, and if you get that lesson, then in all cases you should be able to cure the disease by thinking it away, by visualizing it away, poof! And that “poof” is pure magical thinking.
O.K. I see the distinction.
And that magical thinking, which is narcissistic and grandiose, has a troublesome downside. Namely, if you can’t think the disease away, then you really are spiritually rotten – you should feel profound embarrassment and guilt and shame. New age types gather around you and say things like, “Well, what are you trying to teach yourself with this disease?” You might have, say, eye cancer, and they’ll say, “What are you trying to avoid seeing?” Or you might have a broken leg, and they’ll say, “Why are you avoiding standing up for yourself?” Or you might have a headache, and they’ll say, “Guess whose sixth chakra isn’t opened?” Or you might have some heart problems, and they’ll say, “Why are you avoiding God’s love?” And all of this is completely magical, narcissistic, infantile, new age nonsense.
There is no support whatsoever for this type of thinking in the world’s great mystical traditions. The only support for this type of thinking is in the mind of the four-year-old, where magic rules and narcissistic ordering the-world-around is king. That’s its fundamental support.
You know, I thought the psychiatrists pretty much had a corner on the guilt market, until the new agers came along. What the new agers managed to do, with regard to diseases physical in origin, was to not just misinterpret them as psychological in origin, which the psychiatrists could manage, but to go one step higher and interpret these diseases as spiritual in origin, as “lessons” you are giving yourself.
The psychiatrists didn’t believe in soul and spirit, so the highest they could go, and the most guilt they could induce, was on the mental level. There would be a substantial amount of iatrogenic [doctor-caused] guilt, but because it was only half way up the great chain it was in some ways limited and its damage contained.
By great chain you mean…
The Great Chain of Being – a hierarchy of matter, body, mind. soul, and spirit – or we could say physical, emotional, mental, and spiritual dimension, with spirit being both the highest dimension of being and the ground or reality of all dimensions of being. As Huston Smith has pointed out, the Great Chain of Being is the central core of the perennial philosophy, or the world’s great wisdom traditions.
So how does this relate to new age guilt?
The new agers acknowledge the existence of soul and spirit – their version anyway – so they can extend the guilt to infinite proportions: All the way up to soul and spirit. And that’s exactly what they have done. I call it neotrogenic guilt – guilt caused by the new age mentality. You create your own reality, your thoughts are in control of the entire world, and, thus, if you get a disease of any sort, you have caused it. You have given yourself this disease, whether it be a cold, anxiety, a broken bone, gout, cancer. or the flu.
But, you know, the new agers really believe that stuff.
Yes, I know, and it’s so unfortunate, so tragic. Because, one, it really is wrong; and, two, it kills people. I mean that literally. By thinking that all disease has its origins solely or exclusively on the spiritual level, you actually and completely cease looking for causes on the physical. And therefore you give up or bypass or fail to take advantage of physical-level cures, which are, in fact, the only ones that are going to work for genuinely physical-level diseases.
I know a lot of new age types. Well, my entire generation is new age to some degree – I’m new age to some degree – it was an occupational hazard of the ’60s. Anyway, many of these people are now at the age where they are starting to face serious illnesses, such as cancer.
And, if having cancer is not devastating enough, they have the added burden, the neotrogenic burden of thinking they have somehow brought this thing on themselves, that they somehow are spiritually rotten to the core. Never mind that arguably the three most important and enlightened figures of our time – Sri Ramana Maharshi, Suzuki Roshi, and the Karmapa – all died of cancer. Your cancer is proof of spiritual rottenness.
And then, worst of all, the new agers think they should try to cure the cancer with just visualization and meditation and psychotherapy. Those can be very important adjuncts, but they are not cures, because they address the wrong levels.
And the people who use just those approaches, only those approaches, unfortunately, they die. They were killed by the new age, by this insane idea that I create my own reality, that only spiritual causes are
operative in the world, that I should be able to order the world around in thought, that physical-level
cures are a source of shame and weakness.
This whole new age position can be historically demonstrated to be an unconscious offshoot or derivative of such movements as Christian Science. which itself was a misinterpretation of the New England Transcendentalists, Thoreau and Emerson. It mistakes the correct notion, “Godhead creates all,” for the narcissistic notion “Since I am one with God, I create all.” That’s very wrong.
That position makes two profound mistakes, which both Thoreau and Emerson would have strongly disagreed with. Namely: one, that God is an intervening parent for the universe, instead of its impartial reality or suchness; and, two, that your ego is one with that parental god, and therefore can intervene and order the universe around. Those are both fundamentally and profoundly wrong; and the particular new age notions that we mentioned, consciously or unconsciously based on them, are equally wrong. And that wrongness, very sad to say, can kill you.
I see. That’s frightening. Now, if I understand your position correctly, you also are saying that many diseases of, say, the spiritual level also can have a physical component, and that component should be treated with physical-level interventions, in addition to all the higher-level techniques and so on. So you should tackle any disease with a multi-leveled approach.
Yes, exactly. There are almost no “purely one-level” diseases. Even a predominantly physical-level injury, say, a broken bone, has emotional and psychological and sometimes even spiritual ramifications. And many, I would even say most, “higher-level” diseases have physical or lower-level components. In fact, many diseases that once were thought to have a purely spiritual or psychological origin, we now know have major physical or genetic causes – for example, gout, alcoholism, cancer, diabetes, manic depression, panic disorders, even certain phobias. All of these diseases once were ascribed to moral weakness. And now, alas, are ascribed by the new agers to spiritual weakness.
So, in addition to iatrogenic diseases, we now have a whole new battery of neotrogenic diseases. And at the top of this list is death. Second is infinite guilt. Third is massive low self-esteem. Fourth is wheat grass juice poisoning.
I agree with most of what you’re saying, but I want to try to salvage the few grains of truth from the new age approach. I mean, you have agreed that visualization, for example, might actually be curative, or at least help in the cure, of at least 1 percent or 5 percent or whatever of some diseases. Now, this seems to me to be very important. Could you discuss that?
O.K. In the Great Chain of Being, we have both “upward” and “downward” causation. With regard to disease, upward causation means, in essence, and with regard to disease, that a lower level is mostly causing the disease, and this is infecting or disrupting the higher levels as well. For example, if I have chronic mononucleosis, which is accompanied by physical fatigue, this is going to dispose me to mental depression, and in some cases actually cause it. That’s upward causation.
Downward causation is simply a higher level causing a disease on a lower level, or at least significantly contributing to it. For example, Type A mental behavior has been implicated in physical heart disease. Or, as another example, it now is widely known that mental or emotional depression can directly depress the physical immune system. Thus, depression has been moderately but significantly correlated with increased rates of colds, flu, cancer, and so forth. In other words, mental depression might increase your chance of getting a cold by, say, 5 percent. Same with cancer.
Now, that is not, by any stretch of the imagination, the same as saying your thoughts directly caused the cancer. That is simply not true. First of all, you have to have a physical base that already is primed or genetically loaded for cancer. Second, you need a whole series of physical-level risk factors, such as smoking or repeated over-exposure to the sun. Third, you need a physical-level failure in the immune system to recognize the cancer proliferation. This can be due to genetics, to vitamin deficiency, to free radical proliferation, and – in maybe 5 percent to 20 percent of cases – this factor might be contributed to by psychological or mental mindsets, mostly depression.
So the mental factor is maybe 20 percent of the third factor, or 20 percent of 33 percent. That’s roughly 7 percent. So I’m saying that, roughly, genetics is 20 or 30 percent, risk factors are 20 or 30 percent, immunodeficiency is 20 or 30 percent, and mindsets (as part of the latter category) might be 10 percent or so. Now 10 percent is important, and you’d be a fool not to take it into consideration. But mindsets are not the sole or major causes. And they certainly aren’t some sort of “lessons.”
So there is no such thing as a “cancer personality”?
No. And there is no credible evidence that there is. What has been shown, more or less across the board, is that there is only one “mood” that consistently has an effect on health or illness, or the immune system in general, and that is depression. Depression, as the name implies, depresses your mood, and it depresses your immune system – to a slight but not insignificant degree. And, therefore, research shows it might play a 5 or 10 percent role in increasing your risk of colds, flus, or cancers. But that doesn’t mean there is a “flu personality” or a “cold personality” or a “cancer personality.”
If all the other risk factors are not in place, you can be significantly depressed for years and you simply will not get cancer. You see? This whole notion of a “cancer personality” is a horrible thing to do to a human being. Tuberculosis used to be ascribed to a “consumptive personality.” Read Susan Sontag’s Illness as Metaphor.
I should point out that this is not just academic to you. Ten days after you were married, you found out your wife had cancer. And you’ve spent much of the last four years helping her fight her cancer. And I take it you used this multidimensional approach?
Yes, but it wasn’t that I had this theory and told my wife, Treya, what to do. She looked into the situation very thoroughly and arrived at the same conclusion herself start with the physical. She did surgery, radiation, and chemotherapy – then added emotional, psychological, and spiritual work as adjuncts.
But it was tough for her; she, like most of our generation, was a new age type, so in addition to cancer itself, she had to deal with “new age shame” and a lot of new age friends who were really trying to help, bless them, but they kept asking her what she was trying to teach herself by giving herself cancer. Their hearts were (and are) in the right place, but on this particular issue, their minds were out to lunch.
I still have a few questions about downward causation and its role in healing and illness. How exactly do you see visualization, for example, helping to strengthen the immune system? Granted, it may have only about a 10 percent effect, but that is still an effect.
Yes, and in a tight election 10 percent can make all the difference in the world. Even 1 percent can. So of course I recommend this as an adjunct for physical disease treatment. Also, if your disease actually is originating on the mental level, then visualization might be one of the direct and immediate remedies itself, and not just an adjunct, because it also originates on that level. For example, if you have low self-esteem, due to psychological and not physical causes, then visualizing yourself as capable, lovable, and competent is an appropriate and fairly quick cure; it’s a decent same-level cure.
But trying to cure a physical-level illness by using mental-level techniques, such as visualization, can be a problem because by themselves they’re just too slow. You see, upward and downward causation are sometimes quick and immediate, but when it comes to disease they are rather slow and laborious. They have to go “up” and “down” the Great Chain, and they are dampened and absorbed by that movement. For example, you might have to have a Type A mental set for thirty years before it finally works its way down to the physical and gives you a heart attack. This is not something that is going to happen overnight, or even in a year or two or five.
Well, the same is true of most mental or attitudinal cures for physical illness, or cures by downward causation. They work – it just takes a decade or so, usually, and you just don’t have that kind of time. So you want to intervene directly and immediately at the actual level of origin, using same-level techniques, elements, and therapies. Then, as an adjunct, you can use secondary techniques on all the other levels that are involved or implicated in the particular disease in your case.
How do you see visualization having an effect on the immune system, no matter how slowly it might work?
Well, if you look at our expanded version of the Great Chain, notice where in the hierarchy “image” occurs: matter, sensation, perception, emotion, image, symbol, concept, rule, and so on. Image is the lowest part of the mind, putting it directly in touch with the highest part of the body. Image, in other words, is the mind’s direct connection with the body – its moods, its impulses, its depressions and its elations.
Images are the missing link between mind and body. And, as research has suggested, images also are plugged into the body’s immune system. Images are not totally in control of the immune system; it’s simply that they have an influence, a moderate but not insignificant influence. Images, therefore, are exactly the point in downward causation that the mind actually and concretely touches the body.
And because we can consciously control our images to some extent, we can consciously have a modest amount of influence on our immune system. This is true. If you want a really good book, sane and balanced, on this topic, I would recommend Imagery in Healing, by Jeanne Achterberg-Lawlis.
So, if you are confronted by a disease in a friend, say, how do you proceed? This friend comes to you and says, “I’ve got such and such symptoms.” What do you do?
Well, it varies tremendously, of course, depending on the individual and the circumstances. But, as a general answer, I would say this: When you are looking for the causes of a particular disease, start at the lowest level and work up. That’s one of the few hard and fast rules I have. And the reason is: If you go even one level too high, if you ascribe the actual cause to any level higher than it is in fact, then you will generate guilt in the person. Moral guilt.
Moreover, you will prescribe an inappropriate or too-slow-acting cure for the disease. In other words, in addition to the original disease, you will have afflicted this person with a second disease, an iatrogenic or neotrogenic disease. These sometimes are more fatal than the original.
So start at the bottom. Exhaust the physical possibilities and the physical-level cures or techniques. Do this first, and do it exhaustively. Play the materialist for a while. Then move up to the emotional – to the confused feelings and impulses and fears that might be contributing to the problem. And look for ways to work these out, to express bottled-up emotions or, conversely, restrain your acting-out tendencies.
Then move up to the mental – to all of our beliefs and myths and stories, sometimes false and distorting and plain mean and vicious – and work with those. In particular, learn to replace these beliefs with more positive mental “affirmations.”
Then move to the spiritual, and look at your whole approach to spirit or godhead. Is it still infantile and childish and narcissistic? Do you think God is a big parent who rules over this world? Do you think God is punishing you with this disease? Do you think you are giving yourself this disease as a lesson? Do you think you create your own reality, that your ego can order the universe around?
To the extent you can, jettison those infantile beliefs – they once were appropriate, but no more – and replace them with a more genuinely contemplative and mature approach to spirit, spirit as the reality and suchness and luminosity of all that is, not as a punishing or rewarding parent. The view of God as a punishing parent is a seed for a particularly vicious downward causation that, over the years, can slowly poison all levels, So maybe you should take up an authentic meditative discipline.
Earlier you said something about using illness as a metaphor.
Yes. What I said was that it is not true that, for example, cancer is something you are giving yourself in order to learn some sort of lesson, and that you had better spiritually straighten yourself out. If you accidentally inhale radioactive plutonium, for example, you and 99.99 percent of the people who do so are going to get lung cancer. I don’t care if you have spent your entire life reading A Course in Miracles; you are going to get lung cancer.
There’s no spiritual lesson here. I mean, don’t inhale plutonium. Fine. That’s no spiritual lesson: that’s a simple piece of concrete information.
But – and here’s my point – no matter what the actual cause of whatever disease you have, or no matter what level that disease primarily issues from, you always can use your disease as a metaphor for the things about your life you wanted to change anyway, or should change anyway.
The disease, in that case, can be a real spur to take creative action in your life, to change or improve things such as – going up the chain – your diet, your exercise program, your mental attitude and outlook, your spiritual relationships and practices. Diseases don’t have to have a mental or spiritual cause to spur mental or spiritual action, action that would be a good idea anyway, whether or not you were sick.
So, in that sense, disease can be a real opportunity, and it can be an opportunity without your having to lay a guilt trip on yourself. In other words, disease is not caused by a lesson you are giving yourself, but, if you choose. You can turn disease into something to learn from, or something to motivate you toward more balance and harmony in your life.
So, for example, you might get hit by a truck and break your leg, and use that occasion to learn to slow down, or take up meditation.
Yes, exactly. Your mental or spiritual set did not cause the truck to hit you – it’s not a lesson in that sense. But there might be some mental or spiritual things you should be changing in any case, and you can use that sickness as a metaphor, a symbol, and a spur to change them. You might say, for example, “I’m going to choose to see that truck hitting me as an example of life running over me, and I’m going to try to take more charge of my life, using diet, meditation, etc.” Or you might have cancer, for strictly physical reasons, but use it as a spur to be more compassionate toward others who are in pain. You did not get cancer because you lack compassion, but you can use cancer to develop compassion.
But, what about the notion of karma? Wouldn’t karma say that, in fact, you got run over by the truck because of past karma? In other words, your past actions, your karma, actually did cause the truck to hit you? It’s your karma.
Well, yes and no. This is an enormously complicated topic, and can’t be dealt with in passing. But I can say this: With regard to illness, it is true that the Hindus and Buddhists and Gnostics would maintain that
any illness you have now, or in this life, is a product of past karma in your past lives or past actions, actions that are carried in your “continuum,” your “eternally indestructible drop,” your soul. This karma will have to come to fruition; it necessarily will have its effects.
The idea of karma-which I think is essentially correct – is that you have to experience the results of your own actions. Your actions will have results, and these results will come to fruition. Maybe not in this lifetime; but it will happen, sooner or later. And much illness in this lifetime therefore is ascribed to past karma, or evil actions in past lives whose impressions still remain in the soul and, in this lifetime, exert a downward causation that comes to fruition in various diseases.
If you have killed someone in a past life, that killing, because it is an ontological offense against the moral grain of the universe, is going to have a correspondingly bad effect on the structure of your very soul. It will come to retributive fruition, and you will pay – usually, it is said, by a short life riddled with disease and illness. Now, whether or not you believe the exact specifics of the Buddhist and Hindu notion, I think the overall idea is absolutely correct. This is simply a notion of “conditioning” on the spiritual dimension. “As ye sow, so shall ye reap.”
So, in that sense, illness is your own doing.
Well, not quite. First of all, there are all sorts of karma – not just individual, but also collective. If you end up at Treb1inka or Dachau, it’s not necessarily only, or even predominantly, your bad karma. It’s mostly Hitler’s and Himmler’s and Heydrich’s. If major industries dump carcinogenic toxins into your environment and you get cancer, it’s not primarily your bad karma. It’s theirs. And so on. In other words, all diseases have causes or are a result of karma, but the karma is not always yours and therefore may not be your fault or “your own doing.”
And, anyway, the whole notion of karma as described by the Buddhist or Hindu spiritual traditions has an intent that is exactly the opposite of making you feel guilty. The point is this: We all have karma, and we all have a fair amount of bad karma, karma that has to come to fruition before we can achieve any sort of enlightenment or make any sort of higher spiritual progress. In other words, each of us is going to have to grab enough courage to face past actions and experience their results, and this, in many cases, will involve going through difficult illnesses and discomforts.
But, once a major illness actually happens to you, a more useful response might be, to use my wife’s particular wording of it: “Congratulations, You are finally burning off a major chunk of the negative karma that afflicts us all. We will all have to go through this sooner or later, because we all have ‘sinned,’ we all have substantial negative karma. But you are doing this right now, and that is admirable! Again, congratulations!” You see the difference?
Night and day.
And the really important point about karma and illness, as Kalu Rinpoche himself has pointed out, is this:
Illness itself does not generate new karma. Illness is the fruition of karma, the burning off of karma, You should be delighted that this is finally happening! Illness doesn’t generate new karma or more karma, but – and this is very important your attitude to illness can generate new karma.
So, if you are accepting of illness, if you see it as an important evolutionary development, if you don’t see it as some sort of punishment from God or some sort of wretched lesson you are inflicting on yourself, then illness can be a relatively positively event. Illness then can be an occasion to burn off past karma, to right some imbalances that have crept into your overall system, to spur yourself to make the types of higher changes that you should be anyway, and thus to introduce a little more harmony into your life.
Illness doesn’t generate new karma or more karma, but – and this is very important – your attitude to illness can generate new karma.
When Bad Things Happen to Good People
– A compassionate response to illness. By Treya Killam Wilber
Five years ago I was sitting at my kitchen table having tea with an old friend, when he told me that, some months earlier, he had learned he had thyroid cancer. I told him about my mother, who had surgery for colon cancer fifteen years ago and has been fine ever since. I then described the various theories my sisters and I had come up with to explain why she had gotten cancer.
We had a number of explanations, our favorite being that she had been too much my father’s wife and not enough her own person. (For example, had she not married a cattleman, we speculated, she might have become a vegetarian and avoided the dietary fats linked to colon cancer.) We also theorized that her family’s difficulty expressing emotions had played a role. We were probably influenced by Woody Allen’s line, “I don’t get angry, I grow tumors instead.”
My friend, who obviously had thought deeply about the implications of his illness, then said something that shook me deeply. “Don’t you see what you’re doing?” he asked. “You’re treating your mother like an object, spinning theories about her. Other people’s theories about you can feel like a violation. I know, because in my case the reasons my friends have come up with about why I have cancer have felt like an imposition and a burden. I don’t feel they’re offered solely out of concern for me. Rather, the thought of my having cancer must have frightened them so much they needed to find a reason, an explanation, a meaning for it. The theories were to help them, not to help me, and they caused me a lot of pain.”
I was shocked. I had never looked at what was behind my theorizing, never speculated about how my theories affected my mother. Even though none of us in the family ever told her about our ideas, I’m quite certain she sensed how we felt. That kind of climate, I realized, wouldn’t encourage trust or openness, I suddenly saw that my attitude had kept me distant from my mother during the greatest crisis of her life.
Since that conversation with my friend, I have been learning to become more compassionate toward people who are sick, more respectful of their integrity, more kindly in my approach – and more humble about my own ideas. I now see it was really fear – unacknowledged, hidden fear – that motivated me to believe the universe made sense and that its forces were more or less within my control. In such a reasonable universe, staying healthy would be a simple matter of avoiding stress or changing my personality or becoming a vegetarian.
But I soon had the opportunity to find out – in a personal and painful way – that life is not that simple. Less than a year after this talk with my friend and just ten days after my marriage to Ken, I discovered I had breast cancer.
When my mother was sick, my theorizing was motivated by fear and a desire for self-protection. When I got cancer myself, my theorizing initially was fueled by the now-popular idea that we create our own reality, a philosophy that in my case generated primarily feelings of guilt and failure for getting sick. It also implied that if I somehow could find “the cause” of my cancer I should be able to root out the mistake, cleanse my past, change my future, and thus cure myself.
Probably everyone who becomes ill, especially when he or she is young (l was 37), will struggle with questions such as, “Why did this happen?” or “How was I responsible?” These can be helpful issues to raise, especially if we tend to deny responsibility for our lives or feel like victims of fate. But I have found that such questions are helpful only when asked without judgment, and only when the answers are taken lightly and recognized as probably only partially true.
I feel certain I played a role in my becoming ill, a role that was mostly unconscious and unintentional, and I know that I play a large role, this one very conscious and very intentional, in continuing to work with this disease. In the last four-and-a-half years I have had two rounds of surgery, six weeks of radiation, and eight months of chemotherapy. I’ve seen a psychic healer, a Philippine healer, a hypnotist, and an acupuncturist. I practice meditation; I’ve been in therapy; I practice visualization and do imagery work. I take mega vitamins under a doctor’s supervision and am currently on a metabolic enzyme program. I exercise daily and am very careful about my diet.
My experience has been at once frightening, challenging, and rewarding. Above all it has taught me a great deal about what kind of help from others truly helps, and what kind is actually harmful.
What I have learned has proven invaluable in my work helping cancer patients at The Cancer Support Community (CSC), a nonprofit organization I started in San Francisco with a close friend who also had cancer. Now almost two years old, CSC provides support groups, educational programs, and special events for people with cancer and their families – all completely free of charge.
The decisions I have made in the course of my illness have not been easy; I know the decisions all people with life-threatening illnesses have to make are among the toughest we ever face. I have come to realize I never could know in advance what decision I would make if I were faced with anyone else’s difficult choices. This knowledge has encouraged me to be genuinely supportive of whatever choices others make.
A friend who was a great help to me during chemotherapy, who made me feel beautiful even when my hair fell out, recently said, “You didn’t choose what I would have chosen, but that didn’t matter.” I appreciated her for not letting that come between us during what was clearly the most difficult time of my life. Then I said, “But you can’t know what you would have chosen; I didn’t choose what you think you would have chosen. I didn’t choose what I thought I would have chosen either.”
I never thought I would agree to chemotherapy. I had tremendous fears about putting poisons into my body and about the long-term effects on my immune system. I resisted until the very end but ultimately decided that, despite its many drawbacks, chemotherapy offered my best chance for a cure.
There have been many times during my treatment when I have envied people who have more faith in mainstream medicine, people who do not have to deal with the avalanche of doubts about traditional medicine or the flood of unproven, nontraditional alternatives that I live with daily. Part of me wants to try everything that might help, but I simply do not have the time, energy, desire, or money to pursue each new suggestion.
When decisions about treatment options loom ahead of them, people want information. They may want to know about alternatives or need help researching conventional therapies, Once they’ve chosen their treatment plan, however, they usually don’t need more information, even though it may be the easiest and least threatening thing to give.
They don’t need to hear about the dangers of the radiation or chemotherapy or Mexican clinic they’ve chosen, a choice usually made with great difficulty after long deliberation. Coming to them at this point with new suggestions about healers or techniques or therapies might only cause confusion, might make them feel you doubt the path they’ve chosen and thus fuel their own doubts.
It didn’t help when a friend warned me of the dangers of the radiation treatment I was having; I was already well aware of the dangers and was struggling with my fears daily. It was not helpful when people warned me that worrying about a recurrence might make it happen, or when they pressed me to think positively. I needed to plunge into the depths of my fear, to face the truth squarely; only then could a genuinely positive attitude emerge.
I especially needed to be around people who loved me as I was, not people who were trying to motivate me or change me or sell me on their favorite idea or theory, And I needed friends whose definition of health didn’t stop at the physical level, friends who understood that true healing has to do with how each of us lives our lives on all levels, and that physical health is clearly no more important than emotional or spiritual health.
We’ve all heard stories about people who I have used a confrontation with catastrophic illness to change themselves radically, to turn their lives more toward service, to learn to treat themselves and others with I greater kindness and compassion, That is the sign of true healing, and it may or may not manifest on the level of physical health.
Sometimes I needed someone who would simply be there for me or hold me, someone who didn’t push me to emote or bare my soul or be honest about my fears. And sometimes I needed someone to be with me as I struggled with these fears, someone who could listen to me talk about pain or euthanasia or suicide or death without retreating into his or her own fears or pressing me to think more positively.
In trying to understand my own cancer and in working with others, I have come to see that the causes of cancer are many and varied, that they are different for each person and each situation, and that cancer is a complex disease we are only beginning to understand. It helps me to picture the causes of the disease on a pie chart where the various wedges represent genetics, lifestyle, diet, environmental influences, past medical treatments, social factors such as strength of social connections, and so on. We don’t know how large each wedge might be – we don’t even know how many there are – and the chart will look different for each individual and for each type of cancer.
Research indicates that one of these wedges should represent personality factors – ways of responding to stress is the favorite example. I certainly have found it helpful to be aware of this dimension, because it is one place my actions and my conscious choices can clearly affect my health. What is not helpful, and actually is harmful, is when I oversimplify a complex situation and believe the personality slice is the whole pie; ignoring the role other factors play.
In some cases, working on this slice making changes in your personality and attitude – can indeed be enough to tip the balance toward healing; in other cases, however, the outcome maybe already determined by factors such as the type of cancer or the stage of the disease at diagnosis.
I have come to see that life is too wonderfully complex and we are all too interconnected – both with each other and with our environment – for a simple statement like “you create your own reality” to be literally true. In fact, a belief that I control or create my own reality actually attempts to rip me out of the rich, complex, mysterious, and supportive context of my life. It attempts, in the name of control, to deny the web of relationships that nurtures each of us daily,
As a correction to the belief that we are at the mercy of larger forces or that illness is solely caused by external agents, this idea that we create our own reality and therefore our illness is important and valuable. But it goes too far. It is an overreaction, based on an oversimplification. In fact, I have come to feel that the harm caused when this idea is taken to its extreme – as it frequently is negates what benefits it otherwise may offer. Too often it is used in a narrow-minded, narcissistic, divisive, and dangerous way. I think we are ready for a more mature approach to this idea. As author Stephen Levine says, this statement is a half-truth, dangerous in its incompleteness. It is more accurate to say we affect our reality.
This is closer to the whole truth; it leaves room for both effective personal action and for the wondrous, rich mysteriousness of life.
It is difficult when someone who not sick asks me a question like, “Why did you choose to give yourself cancer?” They seem distant from me, safe in their wellness, sometimes even righteous. I don’t raise this question with people who have cancer unless they do unless it is something they worry about. “Why” questions too often lead to feelings of guilt and self-blame, to regrets about the past, to fierce resolutions about the future that only cause more guilt if broken.
More often than not it helps to move on from “why” questions to the “what” and “how” of the disease. When I look at what is happening now, how I feel about it, and what I can do about it, and when I help others do the same, we move away from blame and judgment into the present, where we can consciously choose how we want to live our lives.
In our Judeo-Christian culture, with its pervasive emphasis on guilt and blame, illness too often is seen as punishment for wrongdoing. Rather than approach life from the perspective that we create our own reality, I prefer a Buddhist approach, where everything that happens is taken as an opportunity for bodhisattva activity, for serving others. I can look at “bad” things that happen to me not as punishment for past actions but as my chance to work through the karma of the past, to cleanse the slate, to be done with it.
From a “new age” perspective I might be tempted to ask someone who’s ill, “What did you do wrong to give yourself cancer?” Whereas, from a Buddhist perspective, I’m more likely to approach someone with a life-threatening illness, even someone working with it in a way I do not think I would choose, and say something that conveys the thought: “Congratulations, you obviously have the courage to take this one on, the willingness to work this through. I admire you for that.”
When I talk to someone who’s been newly diagnosed with cancer, who has had a recurrence, or who is growing tired after years of dealing with the disease, I remind myself that I don’t have to give concrete ideas or advice to be of help. Listening alone is helpful.
I try to steer clear of the temptation to define imperatives for others, even imperatives such as “fight for your life,” “change yourself,” or “die consciously.” I try not to push people to move in directions I think I might choose for myself. I try to stay in touch with my own fear that I might one day find myself in a similar situation.
I find I must constantly relearn how to make friends with illness, to not see it as failure. I remind myself to use my own setbacks, weaknesses, and illnesses to develop compassion for others and for myself. I try to stay open to the many moments of humor and joy in life, open to the many opportunities for psychological and spiritual healing all around me, open to the pain and suffering that call for our compassion.
Aug 6, 2011 at 6:58 AM