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I Live a Disease-Threatening Life
When the doctor called to say that the biopsy had come back and that it was positive for cancer, my first reaction was that I felt like I was in the middle of one of those World War II movies where the Zeros are attacking the boat, the sirens are going off, and everybody is jumping out of their bunks and rushing on deck and all sorts of explosives are going off all over the place.
That was my initial reaction. And it was an accurate one, because this cancer had been undiagnosed (not that I hadn't tried) for over a year. So it had gotten into a very dangerous place, and I really did have to do something pretty aggressive and drastic about it.
But the thing is, you never know what's going to happen. You could have a car accident on your way to some wonderful healer. It's actually one of the basic Buddhist teachings. Part of the practice of one school of Tibetan Buddhism involves repeating the Four Reminders. One of the reminders used is; Death is real. It comes without warning. This body will be a corpse.
So it's part of my Buddhist spiritual practice to really understand that. It seems that human beings have a sort of automatic shut-off valve having to do with their own death, even though it's pretty much the only thing that's certain, except for our birth. The certainty of our death is the one thing that everybody ignores.
There's even the possibility that much of culture and civilization is organized to help us ignore death. So, from that point of view, a terminal illness can be very helpful to your spiritual practice.
By chance, the same evening when I first learned the results of my biopsy, a Medicine Buddha teaching was being offered. Part of this teaching is that when you have sickness, it's a great opportunity to take the karma of the sickness of other people. This is very different from the Western notion of getting sick, because it turns everything all round. Basically you imagine that your sickness is you taking on the sickness of all other people in the world who are suffering in the same way so that they can be free from their suffering.
The idea is to take any situation that occurs to you and make it part of your spiritual path. It's not just good situations that become part of the path, but any situation. So the situation of illness also becomes part of the path.
When later on I spoke with other Buddhist teachers, usually the first thing they would say was, "Well, you understand, of course that everybody has to die, that death is real." Rather than lead in with, "We can cure this and you'll be all right," or, "Say this and it will heal you," there was this kind of very bare recognition that, "Well, what do you expect? You were born, so you're going to die." Almost like, "Yes, what's the big deal?"
A little deeper than that is the idea that, You're lucky because it's good for your practice. You have time to prepare for this. Whether you are a Buddhist practitioner or not, if you are a human being you have time to prepare yourself. The usual notion in the West is, Oh, so and so is very lucky that they died in their sleep or they had a heart attack or a sudden kind of thing. But here's the idea that cancer is particularly good because you usually have some period of time to contemplate the whole thing and to work with it.
The first doctors that I saw all asked me, "Do you know what the percentages are?" The statistics for stage-four metastatic lung cancer, which is what I have, are not very good. And, once I found that out, when they would bring it up I would tell them that I wasn't interested in hearing about it. What good would it do me?
I don't see what value it would be to have someone say to me, "Okay, you have four months to live." And anyhow, I don't want to give that much weight to any one person's opinion, whether they're seemingly an enlightened spiritual person or a super PhD, MD. I'm not convinced that what they see in either case is accurate or even helpful.
Basically, my response to my cancer always is, I'm going to live until I die. Which is all anyone can do. Whether you tell me I have four months to live, or three years, or five years, or whatever, I'm going to live until I die.
I told one of my doctors, "You are also going to live until you die. You think that you know when I'm going to die. You don't even know when you yourself are going to die."
The Buddha pointed out that everything that is born will die. Death is real; it comes without warning. We don't know when it will come. And this body, this particular body, will be a corpse. Buddhism has always been very consistent in looking at that.
The first doctor I saw had the idea of doing a little treatment, palliative stuff, and then for me to go trek in Nepal or go play at St. Andrews' golf course in Scotland. Go play! The immediate feeling seemed to be that you've spent your life and haven't done what you really wanted to do, so now you should go play golf or go trekking in Nepal or whatever it is you really want to do.
And I told him that I had done what I wanted to do, more or less. And it's not like I'm now going to take a vacation. I've done with my life what I wanted to do, for better and for worse, with all the ups and downs. And I'm going to continue to do that. So what are you talking about? I'm going to fight this. And if I die fighting it, fine. I'm going to die sooner or later anyhow.
The doctor said, "Really, it's a philosophical more than a medical question. The question is whether you want to emphasize quality of life, or to be very aggressive in treatment." And that was sort of a code. What he meant was, if you do a lot of chemotherapy and radiation, which is what you would do to aggressively fight the disease, then your quality of life might not be very good, and you might just be making yourself sick and miserable.
And beneath that is the message that we don't really know, we don't really think it's going to work. We think maybe we could prolong your life for a certain amount of time, but prolong it in a way that's so disabling that the question arises as to whether it's worth doing, or perhaps we just do a little bit of treatment so you'll have four months of relatively pain-free and misery-free existence in which to go play golf or do whatever it is you want to do.
So my first decision with this oncologist was, which path did I want to take? Because he didn't want to take responsibility for either path, since he couldn't say to me, "If you do this radiation or this chemotherapy, you'll be better." For all he knew, I could go through all that and not get any better. But when he understood that I was willing to take the responsibility for my own treatment and to make that decision, he relaxed. When I said, "No, I want to fight this as aggressively as possible," he was able to acknowledge that that was my decision and help me do it.
Then there was the question of whether to do the radiation and the chemotherapy at the same time. There was some idea that the two can work together synergistically, that if you do them both at once, the effect is stronger, but at the same time, the side effects can be more serious. The statistics on whether it really was more powerful to do both at once were somewhat ambiguous.
My question was "Will the treatment kill me?"
He said, "No. Even if your white blood cell count goes way down, we can give you something that will bring it up; and if you get so sick you can't eat, we'll feed you through a tube; and if your hair falls out..."
Well, I didn't worry about that! Being a Buddhist and having your hair fall out isn't necessarily a problem. So I said, "Well, it seems that if I don't do something kind of drastic, the cancer is likely to kill me, so let's do it."
Both he and the radiologist advised me against doing the radiation and the chemotherapy simultaneously because they believed the side effects I'd be going through would not be worth what might be a slight medical advantage.
My Chinese-Jewish doctor, who was my advisor on this whole process, thought it was worth doing. So I was in the odd situation where my so-called alternative practitioner was recommending that I pull out all the stops of conventional medicine, and my conventional people were being much more cautious.
I decided to do it. I had to do something. It felt like something had invaded me. Of course, it was my own cells that were doing it, so there was also the idea that it was a part of me. Even so, my first response was definitely a warrior energy towards this cancer which I felt I had to fight.
I remember using visualization, particularly a kind of a Buddhist wrathful-deity visualization, and a wrathful mantra while the radiation was working on me, visualizing the cancer cells being destroyed.
I went for a massage after the first radiation treatment, and I was in kind of a state. Of course they were giving me steroids for the cancer that was in my brain, and I didn't quite realize their effect at the time, so everything was feeling more intense anyhow. I had been sleeping just a couple of hours a night. I was in Berkeley getting a massage, and this person who was massaging me took it upon herself to be some kind of healer. She said she could feel a lot of fear in me, and I said, "There's no fear in me."
She said, "If I could just make a suggestion: If you had more love in your heart towards your cancer, that would be a better thing."
And I rose and bellowed at her in a kind of rage, "No!"
She backed up against the wall, shaking.
I'm not coming to you for that!" I told her. Kind of like, F__off. I didn't say that, but there's this sort of New Age spiritual idea that you should love your disease, and while that can be appropriate at times, this was not one of them. I was facing something quite serious that was trying to kill me.
Once I was driving by myself and I put on a Hindu devotional tape. It wasn't mind-boggling or anything like that. But I just started weeping at a certain point. And that gave way to this tremendous explosion of anger and rage which came out. I just started screaming as loud as I could because I was in the car by myself, which for Americans is like a place of meditation and refuge, a cave, a confessional. And here I was driving down Nineteenth Avenue surrounded by everyone else doing their thing in their car. And I was screaming at the top of my lungs, F_ _ _ you cancer! F_ _ _ you cancer! Cancer F_ _ _you! I ended up writing a whole poem called, F_ _ _ You Cancer, and that was a very powerful moment for me, just to be able to express that feeling.
I was angry at this thing that had come and taken over my life. Or tried to take over my life. Another battle that goes on is making such a big deal of it and putting it at the center of your life.
For a lot of people dealing with cancer, or dealing with any kind of illness, it takes a tremendous amount of time and effort and energy. At different times, depending on how threatened you feel, it tends to take a central role in your life. It's like this whole other project added to the project of living in itself. Your life is kind of organized around this thing. That's a big shift; that's a big difference.
And that's one of the major things I resent about it. That you end up relating to doctors and hospitals and tests and taking medicine, and all this stuff assumes a central organizing principle in your life. I sometimes resent that. And then I remind myself that this is medicine I'm taking. But I resent it.
So that somehow has to be kept in check or in perspective because otherwise the disease has won in a completely other kind of underhanded way by taking over your life, by being what your life revolves around. It's not the central organizing principle of your life. The central organizing principle is what you make it. For me, it's awareness or Buddha-nature. My anger was more a rage at realizing how much it had usurped my life in demanding attention like some screaming two-year-old brat.
All these things, all these emotions, pass through your mind. The question is whether you allow them to become the determining factor of your action in this moment, and I think that's something that Buddhist training and study really helps with. There could be anger and still today I wonder about lawsuits against certain doctors who didn't diagnose me correctly.
When my doctor looked at the reports, he saw certain tests that particular doctors hadn't done, possibly because of insurance things. He said, "This is a real shame." He said he would have been angry. He asked me, "Aren't you angry?"
And I said, "I don't see that anger against these doctors is going to help right now in what I have to do."
I've found that it's not unusual to be under diagnosed. And now I can see that I was in some ways complicit with that because I too readily accepted their assurances. From what I have learned about the medical world, both conventional and alternative, I basically don't trust anybody. It doesn't mean that I don't work with people as closely as I can, but I don't assume that this person, whoever they are, knows the answer. Because it's clear nobody does know the answer.
I learned that the prognosis was considered not very good, statistically speaking. But I learned something else from a young doctor at Stanford, where I went for a second opinion. He told me, "Everybody says this is incurable. We have no way to cure this once it gets to this stage." And then he added, "Has anybody said to you that incurable does not necessarily mean terminal?"
I said, "No, nobody has mentioned that." And it was true that in my own mind when somebody uses that kind of language, I jump from incurable to terminal. He said there are lots of diseases that are incurable or chronic but can be lived with or managed and are not necessarily terminal. I was going to get a T-shirt that said, Incurable but not necessarily Terminal on it.
I had about six months of remission. Remission means, of course, that the instruments cannot detect anything. That's all that it means. Technically. And if that goes on for five years, supposedly you can relax a little bit more. So there was a period of remission.
When I was in remission, the image that came up for me was that cancer, or whatever disease it is, is like a rhinoceros. Like you are there and off in your peripheral vision is this rhinoceros with these beady, ugly, red eyes and leathery skin and tsetse flies buzzing around it, with one nasty horn, like an evil unicorn or something. And that rhinoceros is more or less peacefully chomping on the swamp grass. So as long as the rhinoceros is chomping on the swamp grass and not noticing you, you're fine and you're in remission, but at any moment the rhinoceros could look around and turn its head, and you might be making some sort of move that would attract the rhinoceros' attention, and at that point it goes crazy and comes at you. So you are always living with this pet rhinoceros, even when the cancer is supposedly gone or is in remission.
But before my period of remission, when I was combining radiation and chemotherapy, what they said would happen did happen. For a while I couldn't eat, and I was being fed intravenously, and I was also hospitalized for a few days because I ran a little fever, and they were worried about infections.
I had my Buddhist practice materials with me, and I was meditating during that time in the hospital. I wasn't meditating all the time, of course. I was also reading magazines, visiting with people, having needles stuck in my arm. But I always had my meditation practice materials right there. I had a picture of one of my Buddhist teachers and I had a representation of the Medicine Buddha.
I remember one particularly bleak moment when I was in the hospital and a nurse came in and said, "If your white blood cells don't come up, and it looks like they are not coming up, we're going to have to put you in complete isolation." That's where when anybody comes into the room they have to have gowns on and all that.
I remember thinking, "God, this is just what I was trying not to have happen, and now, by going against what everybody was saying, instead of dying of cancer maybe I'll just die of some stupid infection because I have nothing left to fight it with." And, it being a hospital, the main support for patients is a television set that's mounted up there in the room. So I turned the television set on.
It was about three in the morning. The dark night of the soul. I had turned the set on, and I was just watching some really stupid thing. I can't even remember what it was. It might even have been the Shopping Channel. I was feeling really bad, and then I just turned the television set off and started my meditation practice as well as I could. And that made a big difference. That was kind of a turning point. When I had reached this nadir, what I turned to, rather than entertainment, was practice.
A lot of people wouldn't have that choice at that point. Recently I was in Los Angeles, and just off the highway there is a large Virgin Records superstore that has this big sign that can be read from the freeway: If entertainment is your religion, exit now, exit here! That seems like such a perfect sign of the times. I don't think there was any irony there in that sign. That's basically what our religion is: entertainment. When you go into hospitals, what they have there for people is a television set. That's the religious, spiritual support people get. In every hospital room, that's there. Distraction. That's what kids have. If you are in the waiting rooms, that's what's going on.
My experience with spiritual practice is that quantity is related to quality in a certain way. The quality of your meditation deepens with the amount of time you actually spend doing it. I would say that facing death or living with a life-threatening disease probably works out to at least a couple of months in retreat time in terms of concentrating your mind.
This isn't a particularly Buddhist experience. In the eighteenth century, Samuel Johnson said, "The prospect of hanging wonderfully concentrates the mind."
When you are facing death, you start to look at things, and you know it's not a question of when I get this done, or when that happens then this will happen later. It's being here right now. And that's what spiritual practice seems to be about, continually bringing you back to the right now.
It didn't matter how long I was sitting in meditation, as long as I could connect with my practice, on the spot rather than necessarily going and doing something else. It doesn't change just because you have cancer. The same things happen as happen with anybody's meditation. You go in, you go out, you get bored, you have insights, you have good times, you have bad times. it's not a matter of the result necessarily. The meditation practice is the whole point; you're not interested in a result. It's very hard to describe. There is a sense of, not so much what's important, but what's unimportant, I think. You look at the world and see people suffering over such silly things or creating suffering in such ways and you wonder, "What are they doing? It doesn't make any sense."
It's not like when you get cancer you become something other than what you are. I still have habitual patterns and delusions and illusions, and I get sucked up into life. The deeper questions become, What does it mean that I am going to live until I die? What does living mean?
Allen Ginsberg called and reminded me of something that one of our Buddhist teachers had said to an acquaintance of ours who had had a really hard life and was about to undergo a liver transplant. Before he went in for the transplant, this teacher told him, "If you live, that's good. If you die, that's good. Both are good."
I don't want to make my death into the enemy. Because death is not the enemy. Death is part of us, it's part of our life. It comes along with birth. So, if death is the enemy, then we're really in a state of very extreme alienation from ourselves and the whole process of life and birth and death and everything.
So I think there's a lot of confusion there. Death is not the enemy. Cancer can particularly be seen as the enemy at different stages or at different points. But death itself, however it comes, or whenever it comes, is not the enemy. It's something to be embraced in a way, And that's really the true warrior's stance as far as I understand it.
When Samurai warriors went into battle, they carried a little purse containing the money for their funeral and everything that was necessary. If you go into a battle fearlessly accepting the possibility of death and almost embracing it, you have a much better chance of fighting well, and in fact of winning, than if you go into battle scared of death. I think a lot of Buddhist and spiritual practice in general is aimed at removing the fear of our own death. The fear of our own death is like the fear of our own birth or the fear of our own life.
When my recurrence happened, my doctor said, "Your disease is atypical. So I'm not sure how to treat it."
"What makes it atypical?" I asked.
He looked at me and didn't say anything. So I said "You mean it's atypical because I'm still alive?" And he shook his head, "Yes."
I've been very fortunate in terms of preparing for death because one of my teachers has given instruction for a yogic way of dealing with death. If you're trained in this way, then you continue your practice during your death. The way to train for it is really no different from training with your meditation in life. It's not like there's some big, secret, complicated, yogic things to do when you die; you simply continue your meditation practice at the moment of death.
I asked this teacher a question about pain killers -- would it be better not to use them and so on. He laughed and said that shouldn't be a problem, For one thing, if you are feeling a lot of bodily pain, it's harder to practice and concentrate. Actually, when the body and mind separate, there is so much general confusion and chaos in that moment that it would be very difficult and not even very useful to keep your consciousness.
Our Buddha-nature has survived so much. Through countless lifetimes it has survived the fires of hell, of drowning, God knows what. Buddha knows what. It survived. So a little morphine isn't really going to affect your Buddha-nature; don't worry about it.
I've found that to be a useful teaching. The idea is that Buddha-nature is unborn and therefore undying. So to practice with that as the ground, and that as the path, and that as the fruition seems to me the best thing to do.
Death is a very personal kind of thing. Everybody has their own death. When you realize how personal it is, you know that, for each person, death in some way seems a continuation of their life. People tend to die in somewhat the same way that they have lived. If somebody has lived by sweeping everything under the rug, then they might prefer dying with the complicity of everybody saying, "Everything's going to be okay. don't worry, you'll be out soon."
Death is not the enemy. Everybody has their own death, and to treat death as the enemy is to be in a state of complete alienation from your own life. If death is the enemy, then everybody is ultimately afraid because they will lose that battle. When people battling cancer or any disease see death as the enemy, they feel that they have failed in their fight.
It's a tragedy for people to have that put on top of all of the suffering and the struggling that they are going through, to feel that they have failed and didn't do enough, didn't do the right thing, that they didn't eat the right low-fat foods, that they didn't drink enough wheat grass juice, that they didn't uncover their shadow side, that they didn't go psychologically deep enough, that they didn't quit smoking. That they didn't meditate enough, have positive enough thoughts, all the endless guilt-tripping that people can get into.
The fact is that no matter what we do, no matter how much we do everything -- as the Buddha said -- everything that is put together will come apart. Everything that is born will die. And there's nothing wrong with that, that's part of the way things are. Meditation is partly about realizing the mind, that it is beginningless and therefore endless and open and luminous and has been called deathless. But that has nothing to do with what happens to the physical body. The physical body does die. And that death is not in any way a failure. It's a logical culmination of our life.
Of course there's fear, but there's nothing wrong with fear. We keep having these ideas about what is spiritually correct, and that's really unfair to people. If I'm afraid, then I'm afraid. So what? Who's making out the report card?
Investigate fear, go into it. Don't be afraid of the fear but, rather, be curious. Be exploratory. How solid is it? It feels very solid, obviously, because people freak out about it, but if you lean into the fear and investigate it, you know what it is actually made up of. It's made up of these physical sensations, which, when you direct awareness or attention to them, tend to lessen or dissolve. It's made up of projections into the future about what's going to happen or what's not going to happen. So the arising of fear, if you have a spiritual practice, actually can be a very powerful kind of aid to the whole spirit, to your practice. You can use your illness or any situation as an aid to practice. There's nothing that will occur that cannot be seen in that way.
One of the Buddhist practices that has been emphasized by teachers to me again and again has been tong-len, which is to breathe in your own situation or your own fear or your own pain and fully feel it, to take it in and not try to push it away, but then to breathe out a meditative calm and extend that to people you are close to, whom you love, who are undergoing the same kind of situation, like people in my cancer support group or people I know personally who are suffering more than I am and are really struggling. And from there, the practice is to try to take in the suffering of all sentient beings who are struggling with disease and illness and the fear of death and doctors and insurance companies. The whole thing.
The idea is to bring all of that in and to breathe out a sense of calm and equilibrium and confidence to everyone in that situation, so that you have a very real feeling of what's going on. It's not just abstract; it's your own suffering. It's the suffering of people you know very intimately. But it's also not stuck in that. There's a much more open, wider, huger vision of what the whole thing is about, of what the practice is about, that leads to the development of compassion, the continual opening of the heart. That's kind of the flip side of fear, which is contraction. The other side of fear is an expansion of the mind, which is, again, beginningless, endless, completely open, luminous, empty, wonderful, awesome, the ordinary mind.
Emotionality is much closer to my surface now. I am moved to tears much more easily because I think if you really take in what it's all about, it opens up your heart, it opens up your compassion for other people.
I remember very soon after I got my diagnosis when I didn't know whether the radiation to the brain, which is actually the most dangerous thing, was really working or not. I was on my way to a bunch of doctors to get second opinions, and on the way I passed a man who was standing on the street. He had a sign that read, "Vietnam vet with AIDS. Please help."
And somehow as I passed, I looked right into his eyes. Even though I was in a car and he was on the street corner, it was one of those things where our eyes kind of locked, and because of the way the traffic was going I just kept going. I felt so much empathy with him. With the suffering of everybody in this world, he was one particular moving, touching instance of it, and I went around the block and stopped the car.
He had seen me, and then he saw me drive on, and then when I came back he recognized me. I got out and I gave him $20 or something like that. And he just embraced me and said, "Thank you, brother." It was very powerful.
At this stage it seems that my disease is something that I have to approach in a different way; it is something I have to be able to live with.
The doctor started talking about managing the disease. My first actions were very aggressive, and, considering the stage of my disease at that time, that was appropriate. But when it came back to a lesser extent and in a more limited area and wasn't immediately threatening my life, then it seemed that the way to approach it was with some kind of accommodation. In other words, to manage it, to keep it down.
Although I am still taking lots of anti-cancer things, they are more of the complementary, Chinese kind, rather than the toxins of chemotherapy. Instead of trying to destroy the tumors, I find myself in a different phase where I have to learn to live with cancer and somewhat to exist with it. I have also added spiritual practices that emphasize more the purification and strengthening of my own body and my own cells. It is more like imagining transformations of the cancer cells into healthy cells rather than obliterating them.
People argue about whether you should be aggressive or healing in your visualization, and I think that, at different times, different strategies are appropriate. It's not one kind of thing. It's more like, I'm in an ongoing relationship with this disease now. Maybe something will come up which will be a cure, but until then the strategy is to figure out how to to exist with this and how to keep it down to a level where it's not life-threatening.
The other day I had a thought that I don't have a life-threatening disease, I live a disease-threatening life. My life is threatening my disease, rather than my disease threatening my life. Threatening in the sense of keeping it from taking over. This is how I feel now.
Rick Fields is a Buddhist practitioner. He is the former editor of Yoga Journal, a contributing editor to Tricycle, and the author of How the Swans Came to the Lake, A History of American Buddhism. Portions of this chapter originally appeared in interview form in the Fall 1997 issue of Tricycle: The Buddhist Review.
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