The world breaks everyone and afterward many are strong at the broken places. . . .
—ERNEST HEMINGWAY, A Farewell to Arms
Compared to what we ought to be, we are only half awake. Our fires are dampened, our drafts are checked, we are making use of only a small part of our mental and physical resources.
—WILLIAM JAMES
THIS CHAPTER INTRODUCES you to what I have learned since Love, Medicine and Miracles about exceptional patients and how to become one. The word “exceptional,” however, creates a fear in those people who have so little self-love they don’t think of this quality as something they can aspire to. Becoming your true self may sound more accessible, and means the same thing. The truth is, you’re all lovable and exceptional. I’m an authority figure and I’m telling you so.
You started out life as a fertilized egg, when a particular sperm and egg met to become you. As was discussed earlier, somewhere within that fertilized egg there was a set of instructions, a blueprint, a path laid out to guide you and show you how to achieve your full potential and uniqueness before you let go of the Tree of Life. Biologically, it is your destiny to be similar to every other being on this earth in your basic composition, at the same time that your DNA makes you as unique as your fingerprints. That is why every drawing I look at, every dream or life story I hear, every disease I see is different, at the same time that they share certain collective themes common to all humanity. God gave us all certain gifts, but it is up to us to decide how to use them in such a way that even the Being who gave them to us will look down one day in admiration and say, “Hmmm, I never thought of it that way before.”
There’s always room for expressing our uniqueness and love and changing the world with it, no matter what our position in life. I saw on the news a New York City subway conductor who sent out poetry, love and messages of good cheer over his loudspeaker system instead of the usual “Stand clear of the closing doors.” A bus driver in Santa Monica looked in his rearview mirror and saw two men pull guns. He stopped the bus, went to them and said, “I love you” and sang “You Are My Sunshine.” They put their guns away and have been riding as monitors on his bus ever since. These people are true originals. So are you—if you will simply learn to express your originality. Share your life with those who are also on the journey and you will change the world. If you don’t like being a bus driver or a subway conductor try elevator operator—and realize we all have the opportunity to love and heal others. It’s even easier if you have a trapped audience.
Discovering the ways in which you are exceptional, the particular path you are meant to follow, is your business on this earth, whether you are afflicted or not. It’s just that the search takes on a special urgency when you realize you are mortal. Healer Barbara Ann Brennan says in her book Hands of Light that health, from the point of view of the healer, “means not only health in the physical body, but also balance and harmony in all parts of life. The process of healing is really a process of remembering, remembering who you are.” To remember who you are means rediscovering your path. This is a chapter about people who have done that—exceptional people.
As you read about them, you will realize that, whether they have cancer, lupus, multiple sclerosis or AIDS, all people who have dared to defy the statistical odds against them tell some version of the same story. If their stories had nothing in common, then maybe we would say that these people were just lucky or had errors in diagnosis, spontaneous remissions, weak AIDS viruses, well-behaved cancers and all the other euphemisms that doctors use when they don’t understand something and simply refuse to see it because it confronts their belief system. These people do share something. They all are manifesting the same basic qualities: peace of mind, the capacity for unconditional love, the courage to be themselves, a feeling of control over their own lives, independence, an acceptance of responsibility for decisions affecting their lives and the ability to express their feelings.
Few of us live up to the potential of our own uniqueness. In fact, for many of the people you will be reading about, it took their illnesses to put them on the path to self-realization. Their bodies had to get sick to make them aware they had stopped living their lives. They had wandered from the path and something had to awaken them. This gets us back to the ideas of Russell Lockhart, the Jungian psychotherapist, who would substitute the word “individuation” for “self-realization,” or “remembering who you are”:
Perhaps cancer [and I would say that the same could be said of any illness] is an experiment in the creation of greater personality, urging it on to the frontier of its existence, in order to constellate there the meaning and purpose of one’s destiny previously denied. Jung said, “It was only after my illness that I understood how important it is to affirm one’s own destiny.” And it was after his illness that his most creative work was done, by his own admission.
. . . Sickness can be a road to individuation, holding within it the confused mass not yet transformed. Sickness pulls consciousness to ever deeper recesses of the self.
As a woman in one of my workshops said recently, some of the most exciting opportunities of our lives come cleverly disguised as insoluble difficulties. My friend Joe Kogel, who had a malignant melanoma and used this experience to help heal his life and cure himself, calls this the “Kogel Effect”—meaning that the worst things in your life have within them the seeds of the best. Joe reminds us that the Chinese symbol for crisis includes the signs for both danger and opportunity.
We’re used to the idea of disease as a punishment or a failure—but a gift? Think about what I call spiritual flat tires, and you may begin to understand what I mean. Something that happened to a friend of mine recently reminded me once again that nothing is good or bad in and of itself.
This gentleman has a farm. He loves the old-fashioned way of doing things, so he doesn’t have any mechanical equipment and plows his fields with a horse. One day as he was plowing his field the horse dropped dead. Everyone in the village said, “Gee, what an awful thing to happen.” He just responded, “We’ll see.” He was so at peace and so calm that we all got together and, because we admired his attitude so much, gave him a new horse as a gift. Then everyone’s reaction was, “What a lucky man.” And he said, “We’ll see.” A few days later the horse, being strange to his farm, jumped a fence and ran off, and everyone said, “Oh, poor fellow.” He said, “We’ll see.” A week later the horse returned with a dozen wild horses following it. Everyone said, “What a lucky man.” And he said, “We’ll see.” The next day his son went out riding, because now they had more than one horse, but the boy fell off the horse and broke his leg. Everyone said, “Oh, poor boy,” but my friend said, “We’ll see.” The next day the army came to town taking all the young men for service, but they left his son because of his broken leg. Everyone said, “What a lucky kid,” and my friend said, “We’ll see.”
We too have to learn to step back and start saying, “We’ll see.” Instead of judging the events in our lives as good, bad, right or wrong, we must recognize that of itself nothing is good or bad, and everything has the potential to help us get back on the universe’s schedule. This does not mean that we have to like what happens, simply that we must remain open to the uses even of adversity. A disease may serve as a redirection—or, as I often describe it, a reset button (which starts you up again the same way the reset button works on a jammed garbage disposal). Which reminds me of something that a man at one of my exceptional patients group meetings said: “I’m here because my ‘We’ll see’ button got me through the night and my reset button is waiting to be pushed.” If you remember very little else from this book, remember those two words.
When you learn to live your life with a “We’ll see” attitude, you will understand how it is that disease can be considered a gift. You will know why it is that people asked to describe their illness have called it a beauty mark, a wake-up call, a challenge and a new beginning. The beauty mark was a malignant melanoma, the wake-up call was breast cancer, the challenge and new beginning can be anything from amyotrophic lateral sclerosis to lupus.
Now when I tell an audience of five hundred people with AIDS that they have a gift, they don’t throw shoes at me or get up and run out yelling “What are you telling us?”—because they know. They understand that illness can help heal their lives, that it can bring new meaning to relationships with lovers, family and friends. In some cases it has enabled critically ill young men to find love in a home from which they had been rejected because they were gay. It has brought a community together to love and support each other. And so they do say, “My disease is a gift.” That doesn’t mean they don’t wish to be well, but that they wouldn’t give up what they have achieved because of their illness.
Does it take courage to be open to this kind of healing? Sure. Do I have the right to tell you your disease is a gift? No, I do not. The gift is yours only if you choose to create it—as I’ve seen thousands of others do. Listen to the people who have lived the experience, and realize you are the source of your healing.
In the midst of chemotherapy and radiation treatments one woman took time to write me: “I consider my cancer to be such a blessing because through it we have learned so much about how to handle our lives, how to speak out our feelings to each other, how to throw away the junk forever and have more contentment in our lives.”
Almost identical sentiments were expressed by a man in an AIDS group:
If I beat this disease, AIDS will be the best thing that ever happened to me because it has been a gigantic, cosmic kick in the ass. It has made me ask, Who are you? What is your life? Are you happy with who you are and what your life is? Sometimes when I say that it comes out sounding like I reduced AIDS to an EST seminar or something. But however it sounds, that’s how I feel.
A twenty-two-year-old man who, with the aid of his doctors, is healing himself of brain cancer, says:
I’ve learned to live. I love living. I love my family, my friends, my job, everything. And everyone. Every day I wake up and I feel alive! At peace. . . . Please excuse this outburst, I get carried away sometimes.
I’ve been dealing with cancer for more than a year now. I’m almost glad I got it. It’s changed my whole outlook on living. I live from day to day. I make the most out of every day.
Stephen Levine, author and counselor, who has worked with hundreds of sick and dying people, once met someone who told him that cancer is the gift for the person who has everything. She was a beautiful fifty-year-old woman who had had a double mastectomy and she got up at a workshop to explain what she meant:
Three years ago, I was graced with cancer. I looked my whole life for a teacher, and it wasn’t until I got cancer that I really started to pay attention to the preciousness of each breath, to the momentum of each thought, till I saw that this moment is all. All my other teachers gave me ideas. This caused me to directly experience my life. When I got cancer, it was up to me to get born before I died.
Feelings like these may be hard to believe in if you haven’t personally experienced a serious illness—or even if you have, A young medical student I had worked with was in an automobile accident that left her paraplegic. She said in a letter to me that she now knows her paraplegia is a gift to her—but “I can’t believe I’m really writing this.” And yet it’s the message I hear all the time. Why? Because the great lesson people learn from life-threatening illness is the difference between what is and is not important.
Love is high on everyone’s list of the important things. In the face of illness, this can sometimes mean healing a marriage gone bad, at other times letting go of one that is beyond repair and going on to new things. A woman who had cancer wrote me a letter describing how she arrived at the decision to seek a divorce after her diagnosis: “I felt, at the time I came down with breast cancer, that I could not live another moment without the love I had so craved my entire life. I felt that love was more important than my next breath of air.” After her surgery, as she records in a diary she sent me, she committed herself to life and love:
I am going to regain my positive attitude toward life, enjoy every day as if it is my last, and have a beautiful love affair. I need to make love and I’m going to do it. . . . In the oddest possible way, this experience has lifted me up out of my despair and isolation. . . . I only hope I can have the strength and will to walk with confidence into the new light that has been shed on my dark road. . . . Human love is the most important thing in life.
Within the year she had a new husband and a horse—the latter “a present I have waited for every Christmas of my life since childhood. I finally got it! A person should never give up hope. . . . I find a difference in myself: I am not willing to settle for less than the life I desire. . . . I realize the value of living and incorporate that realization into my daily life. . . . I want to live!”
This letter reminded me of a woman at one of my workshops who said that when her doctor told her she had cancer and would have to have a mastectomy, she decided to get a divorce too—and give up a tit and an ass! This is much healthier than deciding you’re going to make your marriage work if it kills you.
On the other hand, disease can be the catalyst that enables some couples to find the life and love they need within their marriages. A husband and wife came to my office and when I asked them each to describe his disease, the wife said she saw it as a blossom, an opportunity for growth, the husband said it was eating him up alive. Now when for one it is a blossom and for the other it’s a destroyer, you know these are two people who need to communicate better—and the miracle was that from then on, in the time they had left together, they did.
He had been a man who never expressed his needs but kept everything inside of him where, as he said, it was devouring him. But after that conversation in my office things were different. As his wife explained when she told her story several years later at a workshop, this previously quiet, unassertive man started speaking up about his needs as they headed to the parking lot—and he didn’t stop. First he told her exactly where he wanted her to bring the car to pick him up, then he told her what route he wanted her to take to get home, how fast she should go, and how to get him from the car into the house with the least possible discomfort to him.
That night they stayed up all night talking about their life together, going through a lot of garbage, as she put it, and a lot of wonderful things too. The next night he insisted that she sleep in the narrow hospital bed with him, even though his doctors had said he needed his rest and should sleep alone. Then he asked her to bring in all of his close friends so that he could pick one of them to mount what he called his halos—beautiful concentric mahogany rings he had carved and gilded in earlier years, as part of his work as an artist. Not long afterward he died beneath those golden rings, with the sun pouring in through the windows and his wife at his side, whispering to him that he would be with the angels. The days they had together after they finally learned to listen to each other were a gift to both of them, one that they might never have had without his illness.
The closing of a piece that appeared several years ago in the New England Journal of Medicine is typical of what I call “last paragraphs”—the place where you see the summing up of what a person has learned and accomplished through the experience of illness. These last paragraphs all sound alike, which says to me that the process of healing one’s life is the same for all of us, in that we are all members of the same species. Surgeon Robert M. Mack, in his summation of what having cancer has meant to him, says:
I am very grateful just to be alive. I am very glad to have been permitted to learn to live with, rather than simply die from, my cancer. Mostly, I am glad to measure my life not in terms of what it once was or what I might have wished it to be but in terms of how wonderful it is now. I am glad to recognize each day as a splendid, unforgettable miracle, a wonderful gift for me to savor and enjoy as fully as I can, and when my days are no longer nourishing and good, I hope that I can simply let go and allow myself to rest in peace.
A woman in a self-created remission from ovarian cancer writes of the joy she too has discovered in the simplest daily activities:
What an experience having cancer is. My whole life will be different for it as long as I live, and, yes, I am one of those who wants to live to be a hundred. An exceptional nurse at the hospital told me to “live each day to the max.” Do you know what the max turned out to be once I was up and around again after two surgeries in five weeks’ time? It was hanging up laundry in the sun with a cat rubbing against my leg.
Finally there are the words of a woman who has done many years of self-healing. When I first met her about eight years ago she had extensive breast cancer and was using a walker; now she is teaching school and running workshops: “I imagine someday I’ll die of cancer. I don’t know what I’ll die of, whether it’s cancer, a heart attack or a car crash. I don’t really think about it any more, I’m too busy living my life.”
Some people discover through illness strengths they never knew they had. One woman passively suffered through nineteen years of treatment for musculoskeletal illness until the day her doctors told her that she would have to be on “heavy-duty painkillers” for the next two years, after which they would consider whether to do hip replacements. She knew that she could not accept this fate, and when she happened, on that very same day, to see me on television, she decided she didn’t have to. When the program was over she walked on her canes down to a bookstore where she bought my book, then devised her own healing program based on works by Norman Cousins, Joan Borysenko, Dr. Steven Locke, Dr. Herbert Benson and me—although even holding a book was so painful she would have to read for ten minutes and lie down for an hour afterward.
I am no longer on any medication, I walk three miles a day, work out four times a week, and my family and I have our lives back—a whole new life together. Last week I was in China and walked straight to the top of the Great Wall. Within me there is a peacefulness and a joy and a great confidence in what the human spirit can do.
I know that this is all just a process—there is no cure, this is a conditional gift—one that I hope to work and grow with for the rest of my life—my new life. . . . At times I felt, how much easier to lie in bed and take a pill than to be here in the struggle—but how much greater the reward—and the joy to come.
Again I am reminded of the words of the Twenty-sixth Psalm, “Examine me, O Lord, and try me.” Disease is surely one of the ways in which we are tried by life and offered the chance to be heroic. Though few of us will win Olympic gold medals or slay dragons, disease can be the spark or gift that allows many of us to live out our personal myths and become heroes.
Disease can be the catalyst of change for people whose entire lives have been spent denying their own needs. A woman who was an abused child and later an abused wife writes of all the things she has been able to achieve now that she has accepted her mortality.
I was given my death sentence two and a half years ago when I was sixty-two. . . . My life since then has improved one hundred-fold and I have enjoyed my life more than ever before. I have traveled widely, I have visited thirty or more museums, I go away for weekends of dancing, swimming, flirting, etc. and most important, I have a wonderful boyfriend who takes me out to dinner and the movies and with whom I have a fulfilling sex life.
I make plans for the future. Wonderful things are happening in my family—weddings, births, etc.—and I expect to be here for all of it. I am an active member of a cancer support group and have been able to help several people. I could probably continue working but I don’t want to waste a minute of my precious time. I have always wanted to be a teacher so now I am a volunteer tutor in high school and also in the library’s adult literacy program. . . . Incidentally, my recent CAT scan showed a slight reduction in the size of the cancer. . . . My doctor said, “These things happen sometimes; we don’t know why.” I said, “I know why. I made it happen.”
People find God, too, a God who is an enduring part of their new found identity as spiritual beings. This was the experience of a woman who recovered from breast cancer over ten years ago. She felt so strongly about the importance of the spiritual issues in her recovery, and was so determined to help the medical profession understand that aspect, that she eventually wrote a master’s thesis exploring the psychology of six women who had gone through the breast cancer/mastectomy experience.
The pattern common to all these women was that recovery, which the medical profession views as a return to the predisease condition, was in fact a transformation into something new. In my experience, the disease often opens one to a spiritual reality previously unrealized.
The sense of our mortality and our reason for being stares us in the face. What is real? How can we do something real before we die?
In that moment the long trip from head to heart occurs and the intelligent, loving light shines on our path and lights our way. We contact something that goes beyond all our previous experiences and are aware of an order in the universe that includes darkness and disease. However, it is all spiritual and part of life and leads us to a rebirth and reawakening to a new reality. When one reawakens to this potential in each of us the resources that come with this are incredible. We know we can survive events that are full of pain because we have a constant source of renewal.
Cancer, death or loss are not the issue but love and healing are and we finally see that in the pain lies the opportunity to love and care even more. As Mother Teresa has said, the greatest disease of mankind is the absence of love. There is only one treatment for that, to let in the loving light and to heal your life.
And another letter from Susan, the woman from a family background of alcoholism and suicide, who has suffered for years from scleroderma:
I am growing so in a spiritual sense that it makes it all the more worth it to hang around this world. Had I not grown so spiritually I would have left a long time ago, saying who needs this grief. Which is what I think life is about on many, many levels. For me it is like sitting in a garbage heap, but oh the light I can see . . . . One thing I love about growing in the spirit is that it is eternal and you never really stop.
A lot of people call me up and say, “I learned I have cancer. I want to start a group to help cancer patients.” Then they go on about how they’re going to save everybody else with cancer. They’ve got missionary zeal. What I always say to these people is “Stop. You’ll wear yourself out saving everyone else. Go to the mirror. Look in it, and save the person you see there. That’s your client.” I do this because people who have cancer, as well as many other diseases, tend to be people who have always put others first. They need to be liked.
But co-dependency is a disease and an addiction. These people usually don’t do well unless they make changes in their lives and learn to save themselves before saving the world. Sometimes this means learning to stand up for yourself and your own needs by saying no to family and friends after a lifetime of saying yes, which is particularly hard for some women to do. I can see how much Bobbie’s example means to the women at our workshops when they see her “making me better.” Many women and some men have thanked her for being there, showing them how two people can interact and still love each other. One woman learned to do this in her own family after she became ill and realized that she couldn’t continue to be the “perfect” wife and mother she’d always tried to be until then:
I have become more assertive with my family. I have tried to teach my four children to be responsible for themselves and not to be so dependent on their mother. They are learning quite well. My husband is having more difficulty adjusting, but I do know that if I am to stay alive and well, I can not go back to being the pleaser, appeaser, “little woman.” So I wait for him to accept the changes.
I heard poet Robert Bly share a story of three brothers who go out in the forest to chop wood. Each morning one stays in the cabin while the two others are out gathering wood. One day a dwarf appears at the cabin while the oldest brother is there alone and asks to share what’s left of their breakfast. The brother says “Yes.” The dwarf starts to eat but drops his food and asks the brother to pick it up. When he bends down the dwarf hits him on the head with a club. The next morning, the middle brother is left alone in the cabin, and again the dwarf comes by, asks for breakfast, drops it, asks the young man to get it for him and clubs him when he bends over. The third morning the youngest brother is there, and the dwarf appears and asks if he may eat something left over from breakfast. “Yes,” he says, “there’s bread on the table. Help yourself.” But when the dwarf drops it and asks the young man to get it for him, he says, “No, if you can’t handle your own bread you’re not going to survive. You pick it up.” And the dwarf then thanks him and asks him if he would like to know where the princess and the treasure are.
The point of the story is, please, give others responsibility for their problems: Let them learn to hang on to their own bread and take care of themselves. They will grow—and you won’t get clubbed. In fact, they will thank you. The children of the lady who wrote the letter, for example, will be grateful for having learned independence and for having as a role model a mother who has learned to express and take care of her own needs, because these personality traits get passed on from generation to generation—just as the opposite ones do.
Take the example of Ray Berté, who was diagnosed with “terminal” cancer in 1977 but couldn’t understand why his disease had gotten its start in his voicebox, since he had never been a smoker. The event that opened his eyes to the meaning of his disease was a terrible crisis with his fifteen-year-old son, Keith. After hearing of Ray’s terminal diagnosis, Keith suffered a hemorrhage from a blood vessel in the roof of his mouth. He had to have surgery eight times in six days before it finally stopped bleeding. As Ray recounted the events that followed:
I understood something then. After Keith’s surgery everyone kept saying the kid was tough! They said it was just fine that he never cried, even after he’d found out I had cancer. Suddenly this gave me gooseflesh because I realized that Keith had learned a macho message from me. He kept his feelings inside, and then they literally burst out of his mouth. My son was almost destroyed.
Once Ray realized what had happened to his son, he held him in his arms and gave him a “live” message, telling him that it was all right to express his feelings and ask for help when he needed it. In the process of helping Keith, he helped himself, for he realized that he too had always kept his feelings inside. This was the lesson that he had learned only too well from his father, who was always telling him to shut up. In fact, he began to realize, his inability to verbalize his feelings meant that they had gotten stuck—in his throat. His cancer now made a certain terrible sense to him.
Ray used this new understanding to make profound changes in his life. Once a man who prided himself on controlling his feelings, he gave himself the same “live” message he gave his son and decided that he would no longer be destroyed by keeping things inside: “I cry. I trust my instincts. Everyone should.” With his “terminal” diagnosis nine years in the past, and a life transformed by the experience, he proclaims: “If the cancer comes again, I’ll fight like hell again. But I’ve already beaten it, because I’ve blossomed into a new person.”
Part of Ray’s blossoming was learning how to ask for the help he needed. People want to help, but often they don’t know how, and they may withdraw from you as a result. Don’t let that happen. Tell them what you need. If you’ve never spoken up about your own needs before, you may be amazed at the reception you get.
This was certainly the experience of one woman, a social worker, who wrote me a long list of the things she had done once she discovered her husband had cancer. Many of the items on her list, which is too long to quote in full but every word of which is useful, focused on how she asked for and got the help she needed from family, friends, colleagues, even her husband—and herself. For, like the person with the illness, those helping to care for him must also learn how to reach out for what they need. We all, sick or well, must learn to live the same message.
My experience was clear: people couldn’t wait to show their love! Some just wanted guidance on how best to do that. All I had to do was communicate my situation and people took the opportunity to be human and loving.
Asking for help when you need it can be a good thing not just for yourself but for the people who are asked. I heard of a social worker with cancer who did an inventory of the practical ways in which people could help him. He sent it to all the people in his life, asking everyone who received it to get together and share the tasks. The people he asked were so honored and felt they had learned so much that they still get together every year for a community lecture and party.
Another woman formed an official “healing network,” made up of friends and family as well as medical and psychiatric professionals. She relied on them for everything from child care to chauffeuring, errand-running to massage, medical research to transportation. (I provided the surgery.) Two years after her successful recovery from advanced breast cancer, she interviewed the members of her network for a research paper in support of her candidacy for a master’s degree in counseling. How did they feel about having been part of the network? “Honored,” “grateful,” “great [because] it meant you felt close to me,” “better than just sitting scared,” “lucky to be part of the experience. I felt that it nourished me. . . . I had a great sense of feeling included, feeling needed, feeling a part of something which was a large part of someone’s life.”
You will discover that once you share your pain, it makes it easier for others to share theirs. One young woman, a teacher with breast cancer who had not revealed this at school, had to ask for a ride to an ECaP meeting when her car broke down. The principal offered her a ride and she discovered that he had been operated on by me. The next week her car was still in the shop so she asked another of her colleagues for a ride, and when they started to talk it turned out that he had cancer too. Soon they had a group therapy session going at school. People who have given rides to members of our exceptional patients groups have been known to keep coming to the meetings long after their passengers no longer felt a need to attend. “I still need to come,” they say.
Some of us are taught early on to keep quiet. That happens when parents don’t respond to our cries, or respond negatively. If we don’t learn the lesson as infants, then we may be taught it shortly thereafter, when we are told to be “good little soldiers” or “big girls.” I see people like this all the time—they do drawings of themselves in boxes, because they feel trapped. If we are raised that way, it can be very hard to break out and give voice to our feelings. One woman sent me a poem on that theme called “Shh, Listen”—with the comment that it had taken her years to learn to do what the poem asked:
| listen | to who |
| to yourself | I can’t hear my voice |
| shh | |
| listen | to who |
| to yourself | no one will love me |
| shh | |
| listen | to who |
| to yourself | |
| you’ll love yourself | what about the others |
| shh | |
| listen | to who |
| to yourself | |
| do you scream | no, not in years; I have to again |
| go ahead | will it be all right |
| yes | |
| listen | to who |
| to yourself |
As the poem says, you must listen to yourself, hear the sounds of your inner voices. Only then can you learn to sing your own song, as Larry LeShan puts it—or scream your own screams. This has nothing to do with selfishness. It is self-love and self-esteem, not selfishness, and in the end these qualities will allow you to give more to the world as well, as you discover your own way of loving that world.
If you listen to yourself, you will also be able to make decisions about your health care that are right for you. This can be difficult, however, if the very qualities that contributed to your susceptibility to illness prevent you from trying to fight it on your own terms. The woman who got a new husband and a horse in the year after her cancer diagnosis noticed during her hospital stay the extremely repressed, often submissive nature of her fellow breast cancer patients. One of her room-mates came out of anesthesia to discover that she had had a breast removed, without her doctor having made it clear to her ahead of time that that was a possibility. The first she knew of it was when she returned to consciousness. “Since then, she has not been able to cry; anger, rage is all she feels. She is a warm, soft person. So many of these people are shy and kind. I wonder at all that is kept inside, not released—where does it go? What does it do to the human being?”
Very observantly, this woman intuited from what she saw of her roommate’s behavior what people like Russell Lockhart and Arnold Mindell have theorized about people with cancer—that the cancer, being a kind of growth gone wild, lives something of the life that is unlived by those with repressed, constricted personalities. It is almost as if the absence of growth and excitement externally leads to its internal expression. All that energy that is kept inside seems to fuel the cancer, for it has no place else to go.
Participating in your own medical care can be the first expression of yourself and your energy. You will want to form a team with your physician and play an active, responsible role in your treatment, getting second opinions, making choices and becoming the expert only you can be about your life and your disease. Don’t let your doctors be the only experts on your case. It isn’t their life, and experts don’t know everything. This was the point of a letter from a man who had been cured of his lymphoma with a very aggressive form of chemotherapy, which none of his doctors had chosen to tell him about:
After several medical consultations, I learned that the proposed “standard treatments” . . . had a recovery rate of one half that of the new protocol developed, tested and recommended by the National Cancer Institute. I also learned that the reason many physicians were reluctant to use or even recommend the latest protocols was in part due to the increased risk of side effects to the patient. Most doctors, understandably, would prefer to see the results of ten and fifteen year studies before administering a new and advanced protocol that does not have the benefit of many years of testing. . . .
It can take hard work to investigate every option. If you don’t feel up to doing it yourself, ask for help from family and friends. Of course not everyone will feel that such a thorough investigation is necessary, and in many circumstances it is not. But for some people it is the best way of maintaining a feeling of control. For the man who wrote the letter, an attorney accustomed to “fighting battles,” as he put it, anything less than being fully informed about all the options available to him was not acceptable. He goes on to recommend, as I do to many patients, that anyone wishing to research all his options begin the search with a phone call to the National Cancer Institute’s hotline number: 1-800-4-CANCER. There are also hotlines for nontraditional therapies, and when appropriate you can become informed about them too. I don’t make my patients’ choices for them; I can only provide advice and opinions. If there’s one thing I’ve learned from my years as a surgeon, it’s that we must all find our own route to healing. I can only be a facilitator and share with you my knowledge and feelings.
I recall being at a conference where someone stood up and said he’d listened to people who had gotten well with radiation, chemotherapy and a variety of diets and other alternative techniques. He didn’t understand how it was possible that all these things worked, because they seemed to contradict each other. I said to him, “It’s the body that heals, not the medicine.” Each person’s body makes use of different healing agents. You have to decide which ones are right for you. That’s why I do so much work with symbols and drawings, trying to help my patients discover their true feelings about the different therapies available.
At an intuitive level, there is in each of us knowledge of what is therapeutic for the individual. Not everyone dealing with lymphoma, for example, would make the same choice as the man who wrote the letter. Even if presented with the same information about all the options, someone else might reject as too risky the chemotherapy that seemed promising to him. One woman I worked with drew her doctor giving her chemotherapy as the devil giving her poison. If that’s how you feel about your treatment, then you need to change either your therapy, your doctor, or your mind. (She changed her mind, once she was able to make her own choices instead of being pressured into them by her family and her doctor.)
One of the questions I ask people trying to decide about their therapy is “How would you feel if, after the course of therapy you are considering, your disease came back?” If the answer is “I’d be outraged that I didn’t do something more,” then that choice is wrong for you. You need to choose therapies you can live and die with. There should never be a moment when you look in the mirror and say, “Dumbbell, why didn’t you give yourself a better chance at getting well?”
However, you should never have the feeling that the treatment is worse than the disease. We are making choices about healing, not assaulting ourselves. To take a specific example, I’ve seen families where the wife of a cancer patient was making everyone eat a macrobiotic diet. One man did a drawing of this situation showing the kitchen turned completely upside down, his wife looking depressed because she’d spent the whole day preparing the meal, the children in the family looking miserable because they didn’t want it, and himself yelling “Why do I have to eat this garbage!” He would have preferred chemotherapy. Meanwhile in other families the macrobiotic life-style made everyone feel better about themselves because they were participating in a healing process.
While I know that some diets are healthier than others, I also think you have to do what feels right for you. A man with cancer who attended one of my workshops took issue with my having said that vegetarians get less cancer. In a letter, he explained his history:
I just can’t seem to let go of the fact that for eighteen years I was a vegetarian and natural hygienist and lived such a pure life (raw foods, exercise, meditation) and this should happen to me. In the Torah there is a saying that goes “Man plans and God laughs.” I once was on a radio program with Nathan Pritikin. We were debating the merits of which diet or way of life was better—his or mine. It wasn’t really a debate but a shouting match. . . . He said don’t eat nuts—I said nuts are a good source of protein. He said only eat the whites of the egg—I said only eat the yolk—etc. etc. etc. He died of leukemia. I contracted cancer. Two schmucks arguing over how many angels can sit on the head of a pin.
When he stood up in the workshop and asked what was the point of being a vegetarian if you could still get cancer, I told him that he’d eaten vegetables for the wrong reasons. The vegetables may have prevented him from getting cancer ten years earlier—I don’t know. But I do know that joggers and vegetarians die too. If you eat vegetables and get up at 5:00 A.M. to go jogging because you feel better when you do, that’s terrific. If you’re just trying not to die, however, you’re going to be damned angry when you discover you’re going to die anyway. That’s when you’ll wish you’d slept late and eaten an ice cream cone. The point is to find a life that’s enjoyable to you and live that life. It may be longer or it may be shorter than someone else’s life, but if it’s not a life you enjoy, you can be sure it will seem longer. Better to feel that our lives are “over much too quickly.” The important thing, as Joseph Campbell says, is to follow your bliss.
I would say the same thing about drinking and even smoking as about diet and exercise. Lately there have been articles about women who drink having more breast cancer. But you have to look at the life-style of these women—their emotional life, nutrition and childbearing history—not just their drinking habits. You also have to look at drinking in a cultural context. In many cultures where people live to be a hundred, there is significant alcohol consumption. Alcohol is part of their society, part of their enjoyment of life, but it is not abused or misused.
It’s been shown that married men can smoke three packs a day to the single man’s one without having any more cancer, which shows that it takes more poison to kill a lover. In fact, statistics show that single men earn less money, go to jail more often, have more illnesses, kill themselves at a greater rate and die at an earlier age. But when a happily married man pointed that out, a confirmed bachelor drew the only conclusion obvious to him: If he wanted to live a slow, lingering death, he could get married.
As Jung says, the shoe that fits one man pinches another. Only you can choose the way of life—or, in the case of illness, the therapy—that is right for you. So make the choices that feel right for you. You are the expert in your case.
At the same time, you need to keep an open mind and open ears, for there may be messages and options coming your way with something valuable for you. One woman who had fought and prevailed over her doctors on a number of other issues was equally determined about her decision not to have chemotherapy. She had read that Jimmy Carter’s sister, Ruth Stapleton, was going to try to heal herself of pancreatic cancer with faith, and she decided that faith in God would see her through her illness as well. The next day, however, she saw in the newspaper obituaries that Ruth Stapleton had died. That was message enough for her: When her family doctor pleaded with her to keep her faith but have the chemotherapy too, she finally accepted his arguments. He might have pointed out to her that no less a source than the Bible tells us medicine is a gift.
Sometimes, however, it may not seem like such a gift—when the chances of its being a success are small, and the time gained is going to be of poor quality because of side effects. As one woman wrote, about why she had chosen not to have chemotherapy and radiation treatments for her metastasized lung cancer: “The decision was so simple! The six to eight months’ time would surely be of better quality than the twelve to eighteen months with heaven-knows-what happening to my body and perhaps preventing my doing and saying what needed to be done and said. I had a lot to do, and not much time for doing it, so I had to stay in control as long as possible.”
She was decisive from the beginning, about this and everything else. “I guess my acceptance was rather quick. But any problem presented to me has always started my thought process toward what to do about it now, and where to go from here.” When she wrote her letter, almost five years had passed since her “terminal” diagnosis and refusal of medical intervention, and she was thriving, with no sign of the cancer.
How to account for her healing? She mentions what she did and what happened to her along the way but doesn’t single out any one from among the very large number of factors that might have made a difference. The most important factor, however, was that she knew what she wanted and was willing to accept the consequences, including the reactions of those around her. Her mother thought she should take the treatment the doctors were recommending. She gently reminded her mother that she had always been raised to make her own decisions. Acquaintances were horrified and expressed disapproval of what she was “doing to” her husband. Her husband didn’t agree with her choice, but stood by her, defending her position to others by saying “I can only tell you what Jean would say if you asked her.”
Medically speaking, what she did was to “build up” nutritionally. Probably more important than the food supplements and multivitamins were the changes she made in her emotional life. She developed a closeness to her husband, her sons and her daughter. As a result, “These have been the most interesting years of my life.” She reached out to people, both to give and take, and found many new friends, while renewing relationships with old ones. She appreciated the things friends did for her and forgave the ones who didn’t know how to help—the “beautiful cowards,” as she calls them. “They care deeply, too, but they don’t know how to say it, and they’re fearful of doing anything wrong. I learned about these people long ago, so I spoke the dreaded word first, giving them permission, in a way.” She attended a cancer support group at her local hospital and would like to continue going to offer her support to others, but stays away because she feels her unorthodox approach has given offense to some of the people there.
She gave away most of her household treasures to her children rather than having them shipped down to the new home she and her husband had recently moved to—not out of a feeling of hopelessness about the future but because “I had arrived, finally, at the realization that things are really not important.” She was almost converted by a born-again Christian but decided she preferred the beliefs she had developed herself over the years and “came full circle” back to them.
She also mentions that she quit her forty-five-year smoking habit on the day of her cancer diagnosis, which a nurse friend of hers thinks could have caused such a shock to her system that it “turned things around.” Or perhaps her body is creating its own hyperthermia treatment, she speculates, since her “entire body will suddenly become extremely hot, for no apparent reasons.” And there’s the fact that she’s “rather adept at avoiding stress and fatigue. Too much time is spent worrying over that which one can’t change.”
This woman is a walking catalog of healthy attitudes: She was definite about what she wanted in terms of medical care, she’s loved and loving, she has peace of mind, control over her own life, confidence in her own decisions, willingness to face the consequences, a strong personal philosophy, the belief that both life and death can be meaningful. She saw her illness not as a death sentence but as a door to life. At the moment, she’s too busy living to die. She ends her letter by saying: “I feel so good about myself, and proud of the manner in which I have ‘managed’ my situation, so far. . . . Thank you for reporting how it really is possible to maintain dignity totally, by choosing when to go on. I’m not even close to having to make the choice, but knowing that it is a definite possibility is a lovely thought, and I will try my best, when that time comes.”
One can find in this letter almost all of what my chiropractor friend Jeff Rockwell and his wife call the “Symptoms of Inner Peace.” As listed in his “Spinal Column,” they are:
Rockwell warns, “If you have all or even most of the above symptoms, please be advised that your condition of PEACE may be so far advanced as to not be treatable.”
One characteristic of people who have achieved peace of mind is their independence. They trust their instincts. Nobody can tell them what to think if their inner voices say otherwise.
Brendan O’Regan, whose spontaneous remissions study was mentioned in chapter 1, tells about a doctoral student doing a related study who placed an ad in an Idaho newspaper asking if anyone within a 300-mile radius had experienced a remission. Twenty-five people replied, which was quite a large number for such a sparsely populated area. As she started interviewing the respondents, she noticed that many of them were farmer’s wives who had in common a strong faith in their own judgment. When she asked one of her interview subjects how she had felt when the doctor told her she had a terminal illness, the woman simply said, “I figured that was his opinion.” “Would you like to say more about that?” she was asked. “Well,” she replied, “we’re used to being told all these things by all these experts from the federal government who come in and look at the soil. They say to plant corn over there, but when you do, nothing comes up. They say don’t plant it over there because it won’t grow, and you plant it and it grows beautifully. So you realize the experts don’t know everything. When the doctor told me I was going to die in six months, I said ‘What does he know, he’s only an expert!’”
It is interesting that, in the United States, the states with the largest number of people over the age of eighty-five are Maine, North Dakota and Minnesota. (And of those people, nearly 70 percent are women.) The point I would make is that these are states where the living conditions are not the easiest, and I think that people from these areas have had to to learn to be survivors from the beginning. They are independent, willing to take on life and used to providing for themselves. (I also believe that people in the smaller, quieter rural communities that are characteristic of these states tend to live lives in which their feelings stay near the surface; whereas people in big cities like New York find it necessary to build a wall around their feelings to protect themselves so that they can survive the pressure and the noise. The result is that those with the quieter life-style are more in touch with their feelings than those who have buried them deep inside.)
I can remember the first time I went to speak in New Hampshire, another state like those just mentioned. Although the community I was visiting was small, the local church was packed with hundreds of people. When I asked where they had all come from, and why, it turned out that many of them were from communities several hours away. One man said, “I have to travel two hours just to get my groceries, so why shouldn’t I come here to learn how to be responsible for my health and participate in my life.”
These people know they don’t have to die based on an expert’s opinion. Unfortunately many patients don’t know that, and they proceed to die right on schedule—or sooner—once the doctor gives them the statistics.
There was a wonderful magazine article on the subject of statistics by the evolutionary theorist Stephen Jay Gould, who was diagnosed in 1982 with a rare form of cancer known as abdominal mesothelioma. He begins with the Mark Twain quip about the three varieties of dishonesty, each worse than the one before—“lies, damned lies and statistics.” This he applies to his own diagnosis, which carries with it a median survival rate of eight months. But as an evolutionary biologist Gould knows that “means and medians are the abstractions . . . . variation itself is the reality. I had to place myself amidst the variations.” So he doesn’t just disregard the experts, he beats them at their own game by doing a much more sophisticated (and optimistic) statistical analysis of his chances on the basis of his age, the stage of his disease, the excellent medical treatment he would be receiving, and his own state of mind. In the end, however, he discards his own statistics as well, noting that statistics apply only when conditions remain static and that due to the experimental nature of his treatment, the conditions that apply to him are not static. Therefore, he concludes, in the language of the statisticians themselves, “if fortune holds, [I] will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.” I personally know several mesothelioma survivors who are supposed to be dead. So much for life expectancy statistics!
Dulcy Seiffer is another of these independent-minded exceptional patients who has rejected them. When the doctors told her she had only a 40 percent chance of surviving her ovarian cancer beyond two years, she didn’t really listen—though that didn’t stop them from telling her the bad news over and over. Then, by one of those “coincidences” that change people’s lives, a nurse put her and another woman in the same hospital room because they were both motel owners, and her roommate told Dulcy about ECaP. Writing to ECaP was the beginning for her of a healing journey that would require enormous amounts of determination and optimism in the face of many obstacles, including, of course, the bleak prognosis.
The first practical problem Dulcy had to face was how she could get the chemotherapy treatments she needed and still be able to return to the home she loved in St. Croix, where she and her husband had their guest house. The local hospital was not equipped to handle such a complicated regimen, so Dulcy took matters into her own hands. She interviewed nurses until she found one who was willing to be trained over the phone by an oncology nurse in Boston, where she had had her exploratory surgery. Then she and her husband arranged to have all the paraphernalia and drugs she needed shipped in from Puerto Rico every three weeks.
Using ECaP tapes as her inspiration, Dulcy made ten of her own visualization tapes, “figured out methods to raise my red and white counts, and made tapes of exercise programs for sick days and for well days. Being an artist helps the creative turnout.” At the time she wrote her first letter to me, less than a year after her diagnosis, she was already confident that her tumors had disappeared, because “when I do my ‘heal yourself’ part of the meditation, my army of tiger white cells zoom all over my body but they can’t locate any tumors any more.” When she went in for more exploratory surgery some weeks later, her intuition was confirmed—not a sign of anything, “after only eight chemotherapy treatments and a lot of meditation and holistic endeavors.”
Dulcy also saw a psychiatrist who used hypnotism to help her deal with her fear. “He’d tell me ‘You’re going to get well. Soon, you’re going to find out you’re cancer-free.’ I’d come out of his office feeling sure I was going to win.” Love, in-coming and out-going, helped too. “The hardest thing for me to do was to love. I’m not a soft, loving, huggy person. . . . But once I found that I had enough self-love to want to take care of myself and listen to all of my own needs, I found that other people gave me more love and support than I could ever have dreamed of.” Dulcy enjoyed a remission of almost three years before having a recurrence, after what she called a hell of a year, during which she said she had allowed work and family stresses to get to her. But Dulcy is a fighter, who has used her recurrence as a catalyst to get herself to deal more effectively with her family problems through psychotherapy and membership in a group. She’s also continuing her meditations, using those middle-of-the-night sessions of sleeplessness that most of us complain about as an occasion to listen to an inspirational “Nite Tape” she prepared for herself.
It takes a lot of courage to say no to the experts and their statistics, but I see people like Dulcy all the time. One day, at a lecture I was giving, a gentleman came up to me and handed me his card. He was an executive at a publishing firm, but he looked so terribly ill that I never thought his card would be of any use to me. I’d have been surprised if he survived more than five or six weeks.
Five years later I was in a small rural community giving a lecture, and who should walk up to me but this same gentleman, looking perfectly healthy. He had six of his townsfolk in tow and told me he had brought them because what I had said when he’d seen me five years before had meant so much to him. After hearing me speak, he’d quit his support group, which was only depressing him with the bleak pictures the members drew of their lives. Then, as part of the visualization program he started for himself, he gave a name to his x-ray machine and started talking to it, telling it that it had to heal him. His doctor thought he was crazy, and his wife was so upset that she had to see a psychiatrist. But here he is, years later, inspiring us all.
One woman wrote to me: “My oncologist had just told me I’d live about a year. After I fired him, the first thing I told my new oncologist was ‘I’ve just fired my last doctor. So please keep your guesses to yourself because I will beat this thing.’” And she did—in the process of redirecting her life, for she didn’t just fire her oncologist, but (as she put it in her letter) her husband as well.
The people who probably have the toughest battle fighting off the doom and gloom predictions of the experts are PWAs (people with AIDS). Michael Callen, the editor of a handbook called Surviving and Thriving with AIDS: Hints for the Newly Diagnosed (from which Steven James’s rules were quoted earlier), has written an article about his own experience. He begins by telling about how a friend’s six-year-old son, who hadn’t seen him in several months, asked if he were dead yet. That’s how prevalent the idea is that AIDS is invariably fatal, Callen remarks—even six-year-olds have picked it up.
Our Surgeon General thinks so too. I’ve told him, as I’m telling you, that it doesn’t have to be—we kill people by saying a disease is 100 percent fatal. There is then no hope. I’ve asked him to come to one of our workshops to find out for himself, for an increasing number of long-term survivors are beginning to call this “expert” opinion into question. So are some of the health care professionals who work with PWAs and who have a much more hopeful view than the one presented in the media. Callen quotes New York physician Nathaniel Pier, who has a large AIDS practice, as saying: “There’s a serious bias in the medical literature as to what’s being reported, and it’s giving people a distorted picture of what is going on with AIDS. They’re not seeing the people who are doing well, the people who are surviving long, the people who have good quality of life, because these people don’t go to medical centers and therefore they don’t get papers written about them.”
When they do get written up, in articles like the one in the New York Times entitled “AIDS Mystery: Why Do Some Infected Men Stay Healthy?” there is never any consideration of possible psychosocial factors. This particular article includes coverage of such factors as “virulence” (maybe the AIDS virus in these men is a “nice” one); genetics (maybe some people are just born without susceptibility to the virus); and immunity (maybe there is “something unusual” in the immune systems of some long-term AIDS virus carriers that allows them to remain well). The fact that Dr. George Solomon and Dr. Lydia Temoshok are engaged in a psychological study of long-term survivors, and the idea that there might be factors that AIDS patients could do something about, as opposed to factors like genetics and natural immunity about which they can do nothing—these considerations go unmentioned.
Yet in their ongoing study, a number of potentially valuable factors are listed that could inspire PWAs to new efforts in their own behalf. These factors include:
Not only are the psychiatrists and psychoneuroimmunologists often ignored in articles about long-surviving PWAs, but personal testimonials from survivors like Michael Callen are never cited. Callen’s assessment of what makes for a survivor is very close to Solomon’s:
If I had to describe in one word the common characteristic of the PWAs I interviewed, it would be grit. These people are all fighters: opinionated, incredibly knowledgeable about AIDS, stubborn, and passionately committed to living, they work hard to stay alive. And they are all involved in the politics of AIDS—some by becoming publicly identified, others counseling or operating hotlines. Politics can be an antidote to the self-obsession that comes with AIDS. To realize that there’s someone worse off, whom you can help, is an incredible relief—and maybe even healing.
Whether it’s political or personal, a sense of purpose can do wonders for your health. I’m reminded of a story that Elisabeth Kübler-Ross tells of a critically ill woman who was in the hospital and begged the doctors to help her survive long enough to attend her son’s wedding. If she could just get to the wedding, she said, it would be all right to die right after that. So they infused her and transfused her to build her up. The day of the wedding all her intravenous lines and tubes were removed. She was dressed up and made up until she looked beautiful, and off she went to the wedding. When she returned to the hospital, everyone was expecting her to stagger onto the ward, lie down and die. Instead, she came back on the ward and said, “Don’t forget, I have another son.”
There’s a wonderful term that was shared with me by a man whose wife I was taking care of—“roundtrippers.” “Don’t worry,” he said to me one day. “My wife is a roundtripper, and I know she’ll make it.” When I asked him what a roundtripper was, he explained: “When I was in the service and we were caught in a foxhole without supplies or ammunition, we would only send out the men we knew would come back. You could always trust them to do what was necessary, so we called them roundtrippers.”
Purpose, like hope, is physiologic. It makes for roundtrippers. Health psychologist and counselor Jeanne Segal writes that a student who was working with her in a program for cancer patients did a survey to determine whether there was a statistical correlation between selfless service to others and survival. The answer, Segal says, was a resounding yes! This confirmed on the physical level what she had observed on the psychological level when she was working with a family service agency. There her clients seemed unresponsive to the kind of counseling she had been trained to do, until she discovered a United Way office downstairs from hers that needed volunteers. Whenever she could make no progress with her clients, she would send them downstairs to enlist as volunteers—“and guess what? My clients got better fast! Even borderline individuals improved markedly. Their grasp on reality, self-esteem and purpose for living improved as they gave of themselves in unselfish ways that felt good to them.” Volunteers live longer and have fewer illnesses.
Physicians are too rarely aware of their patients’ need for purpose and meaning in life, so they often don’t know how to account for dramatic improvements in their patients’ conditions. However, I know there’s always a life story behind the change, some kind of existential shift. Recently I received a letter from an oncologist telling me that a woman with extensive breast cancer, whom we had both cared for, had returned to his office five months after he had sent her to a nursing home for hospice care—and that he had “never seen her looking so well!” No further comment by the oncologist was made. I told the medical student who was working with me to call the woman and find out her story, because I was sure there would be one. The woman told the student that when she got to the nursing home, she found conditions there so unbearable and depressing that she led a revolution among the other “inmates” to insist that they receive better treatment. She spent time talking with the staff about the tenderness and love the patients needed, and she transformed the place. Then she felt so good that she went home and bought herself a new car!
For some people, the challenge of their illness is part of what gives their lives a purpose, as they find new paths to healing and love. One remarkable woman wrote to me about her struggle to rehabilitate herself after a car accident left her a partial paraplegic. “Not Giving Up” is her credo: “The one thing I have found out about this area is, there are too many unknowns. Impossibilities are continually turning into possibilities. I have always felt our bodies and minds can do more to promote our healing than they are allowed or encouraged to do. Tapping into that source is the key.” Having been told by her doctors that all she can do is “hope for a cure,” she remains determined to take a more active role in her healing. In fact, she was writing to me for suggestions about how she could do visualizations to reverse the paralysis in her spinal cord. Again, “F” is not for failure, but feedback and fighters. She is setting up a challenge, not an opportunity to fail.
Sometimes one of the things that gives people a sense of purpose is the challenge to do the things they love despite the obstacles of illness. I think of John Calderhead, a young man I’ve been corresponding with, who had a leg amputated in March 1983 due to a sarcoma. He’d been a skier since he was seven years old, and he’s now back up on the slopes again, skiing competitively in events for the disabled. “I skiied before the operation, so why should I not ski afterward,” he told a newspaper reporter. Here’s a man who doesn’t accept limitations.
For another man, it’s the love of the Talmud. Rabbi Aaron Soloveitchik, whom I read about in the New York Times, suffered a stroke several years ago when he was sixty-six. Despite being barely able to walk, every week he commutes from his home in Chicago to a rabbinical class in New York in order to pass on his knowledge of the ancient Jewish texts. “Do you know what it’s like to tie my shoes? It’s as difficult as parting the Red Sea . . . I’m in constant pain. But when I give a shiur [class], I don’t feel it as much,” he says.
Some people just seem to have limitless amounts of courage and joy. It might be said that their purpose is to teach us how to live. I have a wonderful letter from a woman who wants to share the story of her father-in-law’s life:
Mr. Wood contracted the three worst kinds of polio thirty years ago. He was given at most ten years to live at that time and was and is still paralyzed from the neck down. He is in an iron lung at night and his wife has provided for all of his care at home. During these thirty years they have raised seven children, the youngest of whom was born shortly after he became paralyzed. He has seen all of his children graduate from high school. Until the last year or so, he was an active mouthstick artist and has sold many oil painting and countless note cards. He has paintings hanging in our state capital.
Mr. Wood has always maintained an interest in life and greatly enjoys lively conversation with company who come to the house. He doesn’t view himself as less fortunate than others. Instead he displays great compassion for other people. He always has something interesting to talk about and has a way of drawing conversation from people.
A few years ago he purchased a late model red convertible and during the warmer months he spends as much time as he can riding around the countryside and visiting family. His wife comes along and they hire a driver/mechanic to take him and of course they have to pack up all of his gear and respirator.
This man has determination. He has a purpose in life and he is an “exceptional” person or, as you say, an “exceptional patient.”
To be exceptional doesn’t always mean having to perform extraordinary feats, however. It’s your attitude about living and loving that makes you exceptional, not whether you can ski one-legged, create mouthstick paintings or heal yourself through visualization and meditation.
A woman came into my office one day with multiple sclerosis. Her accomplishment was that she had taught herself to walk again, because she had an infant at home and wanted to learn to walk before her child did. What courage and beauty! I’ve known so many incredibly inspiring and awesome people, each one someone who has found his or her own way of being exceptional, of being strong at the broken places. The varieties of exceptional behavior are endless. Find yours.
In the words of Max Navarre, one of the contributing editors of Surviving and Thriving with AIDS:
If you have never loved yourself, never really loved yourself, gently and unconditionally, now is the time to do that. Love yourself, forgive yourself, and at the same time, know that there is nothing to forgive. Love other people, and let them love you. You’ll never be bored. Unconditional love can do some amazing things, and it’s a real safety net. And we can do amazing things when we know that we are safe. Miracles happen every day.
One of these miracles is the love that Max Navarre was talking about. It’s love that makes us immortal in the only true sense of the word. I’ve been on many television programs and had people in the audience stand up, angry, and tell me that one of their family members had fought bravely for life and died anyway, despite doing everything that an exceptional patient is supposed to do. I understand the pain of that. I know that these people want their loved ones back, and that often the people who died would have liked to continue to live and be well. Being an exceptional patient doesn’t mean that you can live forever. None of us will.
What it does mean is that, if you choose to be exceptional and confront life’s challenges, after you are gone your loved ones will go on living with a fullness, not an emptiness. Yes, there will be grief, but not emptiness. I have spoken around the country at memorial services held by family members of those who have died. And these people are living memorials to their loved ones, because they bring something back to the community, a way of sharing what they have learned about life from the individual who died. It is wonderful to see this happen because it means that life and the message of that person’s life have continued.
What we’re talking about is taking on the challenges of life, not living forever. Again, it is Evy McDonald who has so beautifully summed up the changes that heal lives, and sometimes cure diseases as a by-product. Evy says that in the months following her “death sentence” she made the following changes in her inner experience of reality:
When you affirm your life in this way, you give everyone who comes in contact with you a gift, and you find your immortality in the love you leave behind. Where there has been no love and no life, however, there’s only a terrible emptiness after death. Exceptional patients don’t leave an emptiness; they leave the examples of their own lives and the love they’ve inspired in those around them.
Let me now present you with a list of things I would like to see you do every day to help you become an exceptional human being. In this way you will heal your life as well as the lives of others, and possibly cure any afflictions.
Now that you’ve read this list you see why so many people prefer having operations. Only a truly exceptional human being will take on this work. Once you do all of these things, however, you find that you begin to live more and more in the moment, and life becomes a series of moments that you are in charge of. Then joy will enter your life and you will be in heaven without dying.