Professor Stoller’s Cancer Experience

Book Review: Stranger in the Village of the Sick

 

Professor Paul Stoller is an interesting man and he wrote a very interesting book.

Why is he an interesting man?

He wrote: As a child my parents immersed me in the culture of Judaism. I attended Hebrew school. As a young man, my graduate education assimilated me to the culture of anthropology. I learned how to write research proposals, conduct ethnographic research and “write up” the results. I have been a professional anthropologist for more than twenty-five years. When he was a young anthropologist Stoller went to Niger, Western Africa, to study the culture of the Songhay, the main ethnic group that form the Songhay Empire – one of the largest Islamic empires in history, sometime in early 15th to the late 16th century. The Songhay practises sorcery – the art of black magic or witchcraft and use supernatural power to heal or to control others.  Stroller was initiated into sorcery by Adamu Jenitongo.  Perhaps they are like bomohs or village shamans in this part of our world. Stoller wrote: In Niger, I learned to mix potions, read divinatory shells and recite incantations.

Why is his book interesting? 

Professor Stoller was diagnosed with lymphoma and has undergone chemotherapy. He came out “successful” after his treatment and he wrote vivid accounts about his cancer journey –  his fears, his pains, his worries and how he coped.

  • Stoller wrote: My own religious background, Judaism, gave me a set of abstract principles about the world in which I lived, but provided no concrete formulas for dealing with an unexpected and incurable disease. So Stoller had to rely on his sorcery knowledge that he learned in Africa to see him through his cancer experience. Being thrust into a new world that would change my life forever prompted me to think long and hard about my experience among the Songhay people of the Republic of Niger. In time of despair, over and over again, Stoller found comfort in the words and teachings of his long-gone Master, Adamu Jenitongo. At times, he heard Adamu whispering to him and telling him what to do.

There are many things in Stoller’s writing that cancer patients can learn from. The following (italic) are extracts from his book.

Diagnosis of Cancer

Professor Stoller was diagnosed with non-Hodgkin’s lymphoma in March 2001. He wrote:

  • In a flash, cancer had abruptly taken control of my life and forced me onto a dreadful new path that promised unspeakable pain and endless suffering. The terrifying prospect of a slow and unbearable death made me tremble. These frightening thoughts quickly transformed me into a powerless person.
  • I didn’t notice my surroundings. Like a zombie, I signed in, sat down and waited. I felt like a dead man walking to the gas chamber.
  • In that moment the world that I had known completely crumbled. My head, suddenly heavy and weary, sunk to my chest. I stared at the floor unable to move. Cancer, I said to myself. How could I have cancer? I had done all the right things: good diet, exercise, minimal stress. Would I be dead in six months?
  • Despite improvements in treatment and better rates of survival, a diagnosis of cancer is still perceived as a sentence to a slow and painful death.
  • Now I wondered if I would survive one year, two years, perhaps five. Ten years suddenly seemed like a life time. If only I could have another ten years.
  • My current circumstances had compelled me to spend quite a lot of time thinking about my life.
  • Cancer always makes you confront death. This unwelcome and unexpected confrontation quickly erodes the gender, ethnic and class differences that divide American society… social differences among university professors, construction workers, and secretaries quickly fade away. Cancer makes us involuntary kin in the village of the sick. 

Lessons from the Songhay

  • A fundamental lesson in Songhay sorcery is: One must make careful preparations and be thoroughly protected before undertaking a task – especially with respect to the physical and psychological disruptions that a serious illness can trigger. You expect to confront all sorts of trouble – betrayal , loss, and illness – along your path. Although you cannot expect to evade misfortune … you can try to be prepared for it.
  • Feeling confident about the outcomes of our choices gives us a sense of control over our lives – something that most Americans strive for. Most Songhay people see the world quite differently. They believe that they have little control over what happens to them … uncertainty, rather than certainty, governs their journey through life. Like many Americans, I have a difficult time dealing with ambiguous uncertainty. In our main stream culture, we prefer quick, clear, concrete answers to difficult problem. We’d like to believe that we are able to control our destiny. If we get sick, we expect a quick fix. How many of us are able or willing to jump into a fast-moving stream and let the current carry us to an uncertain destinations? Most of us would feel that we were being foolhardy if we did so.
  • No amount of denial, numbness, or work, though, could erase my awareness of the “undefined mass” growing in my abdomen. I longed to be more like the Songhay. Why couldn’t I let fate carry me away to some unknown destinations? Why couldn’t I live with ambiguous uncertainty?
  •  You have been told that you have cancer, an event that marks a point of misfortune. Events have compelled you to decide which path to follow into the village of the sick. You also know that you alone will bear the consequences of that decision. When I found myself standing on this point of misfortune… I desperately wanted someone – anyone – to tell me what to do. As Adamu Jenitongo would say, they must find their own way. They must choose which path to take and bear the consequences. Cancer patients must make the same fateful choice. That is the reality that the newly diagnosed cancer patient faces; it is a hard reality to bear.
  • Most Americans don’t like to think too much about death. Many of us can’t even accept inevitable changes to our aging bodies, a sign that life is finite, let alone the specter of death. In the world of sorcery, however, illness is ever present in life. In that world, illness is a gateway to learning more about life. As for death, it is your continuous companion.

Chemotherapy Experience

  • I spent hours reading about the side effects of chemotherapy, information that filled me with fear and anxiety. I geared myself up for body-wrenching nausea, bone-weary fatigue, and hair loss. I bought an electric razor to avoid excessive bleeding from a shaving cut – and a soft toothbrush to guard against painful mouth sores. I also read the literature about Rituxan – it, too, could cause serious problems – fever, chills and heart irregularities – especially the first time it was administered.
  • The best strategy, which I followed one day prior to my initial treatment session, was to get a buzz cut to reduce the psychological shock of being suddenly bald.
  • Cancer patients were also advised to use mild shampoos, soft hairbrushes, and low heat setting on hair dryers.
  • Mouth sores, tender gums and sore throat, usually occurred seven to fourteen days after the beginning of treatment. Each person reacts differently. Side effects also depend upon the drug combinations you get.
  • I had appreciated the phone calls and cards I had received from family members after the diagnosis. Their expressions of concern made me feel better.
  • As I prepared to go to bed … I realized yet again that cancer patients – me, in this instance – must live alone with a disease that their own bodies had produced.
  • I had to learn to live with cancer, but somehow not allow it to take over my life.
  • As the chemotherapy agents destroyed healthy as well as malignant cells … my body would throb, especially in the neck, shoulders and back. In time, my throat would burn. I might get sores on my tongues, cheeks and lips. Periodic fevers would make me sweat. Rashes might spread over my body. And just as my body had cleansed itself of the poisons that precipitated this misery, I’d once again have to drag myself to the Cancer Centre … I’d be hooked up for another treatment and another three-week cycle of side effects.
  • I now knew that my life would never return to “normal.” Cancer and chemotherapy treatments would leave their mark on me. “You can stop the chemotherapy anytime you want,” one of my friends asserted after hearing vivid descriptions of the side effects. “Yes,” I said, “but what’s the alternatives?”
  • In treatment the world slows down. You must sit for hours as the chemotherapy drugs drip into your bloodstream. The drugs make your body ache. They make you tired. You have to pace yourself. They force you to be patient. Patience is the password in the village of the sick. Cancer patients have no choice. They have to confront their weariness and make the necessary accommodations. It is a humbling exercise.
  • As I went through the last phase of chemotherapy, though, the going got tough – more bad than good days. I developed periodic sore throat. A line of painful mouth sores developed on the blade of my tongue, making it difficult to swallow. My bones throbbed, and I developed such pulsing pain in my right knees. Pain and restlessness made a good night’s sleep a gift to be savored. Numbness became more and more noticeable in my feet and hands. Hand and foot cramps froze my joints in painful positions.  …chemotherapy’s side effects were cumulative.
  • No formula can wash away the pain and suffering that comes with the diagnosis and treatment of cancer.

Lessons from the Songhay

  • I somehow managed to make it through the last six weeks of treatment…. In my dreams, I’d see myself seated next to my teacher in the shade of his conical straw hut. The world is patience, he’d say. The world is patience. Never before had I realised the importance of this adage.
  • Although my own middle-class suburban American upbringing had paved the way for my professional life, it had not prepared me for the pain and suffering of cancer. Instead, the wisdom of Songhay sorcery helped me to deal with the devastation that cancer brings to life. It calmed me in stressful situations. It enabled me to be patient in circumstances that provoked impatience. It gave me strength and determination in times of physical and emotional stress. And, as odd as it may seem, it showed me how to incorporate cancer into my life so that I could use it to grow both physically and emotionally.

Success – Remission!

CAT and PET scan results showed Professor Stoller was lymphoma-free. He was in complete remission.

  • How many years of good health, exactly? How long could I expect to remain in remission? You could be in remission for two years, five years. In some cases, people remain in remission for ten years. In other cases, the lymphoma comes back in six months. (Note: from the Internet, I learned that Professor Stoller is still healthy. His success is most outstanding. It has been 11 years now).
  • At the end of treatment, the side effects of chemotherapy drugs slowly fade away. The aches and pains dissipate. The mouth sores disappear. Your throat clears. The fevers fade away. Your appetite returns. Energy surges through your body. Even though you feel “normal,” you still think about cancer every day – if only a little  while.
  • When cancer patients enter the zone of remission … you are in a space between the comfortable assumptions of your old life and the uncomfortable uncertainties of your new life. You have long left the village of the healthy … Once you enter the village of the sick, you can never fully return to the village of the healthy.
  • Restoration of health does not make you a conqueror.

Lessons from the Songhay

  • If a Songhay develops a serious illness like cancer, he or she is likely to build respect for it. Respect for cancer – or any illness – does not mean that you meekly submit to the ravages of disease.  Following the ideas of sages like Adamu Jenitongo, illness is accepted as an ongoing part of life. When illness appears, it presents one with limitations, but if it is possible to accept the limitations and work within their parameters, one can create a degree of comforts in uncomfortable circumstances.
  • Remission can also be like a prison from which the cancer patient cannot escape. Confronting remission’s impermanence is not easy. There are junctures during remission that remind you what a delicate state it can be.  Once in remission, waiting for the results of regularly schedules CAT scan can become exceedingly stressful and can plunge you into depression. If the results come back normal, remission continues. If the scans indicate the return of malignant cells, you may need an additional, more powerful toxic treatment. You may even need palliative care to ease the journey toward your ultimate demise – a destination we all share.
  • My experiences in the world of Songhay sorcery have helped me to cope with the diagnosis of and treatment of lymphoma. What’s more, Adamu Jenitongo’s soft voice comes to me regularly in dreams. He reminds me to accept my limitations and remove resentment from my mind. He tells me to be patient in a world of impatience. He encourages me to be humble and refine my knowledge so that others might learn from it. 

Balance and Harmony

  • In Songhay philosophy, internal and external harmony enables a person to see life more clearly.
  • When you learn you have cancer, the world spins out of control. You are thrown into a world of medical procedures and inconclusive diagnoses. What’s more, you have to interact with technicians and medical professionals, many of whom can be insensitive.
  • You find yourself in the vortex of a whirlwind. No matter what kind of support you have from friends, family and professionals –  ultimately  you … must face your fate alone. No matter the degree of support that they gave, cancer patients must confront their illness alone.
  • Optimism, which can be learned, enables people to live longer, healthier, and happier lives, as compared with the experience of pessimistic people. Pessimism can lead to a sense of helplessness and trigger depression. Helplessness and depression, in turn, weaken the immune system, priming the body for serious illnesses and even premature death.
  • Being optimistic should not blind us from reality. You can be pessimistic, but not in a way that clouds your vision completely. Above all, you should attempt to be prepared to confront whatever life presents – pragmatic optimism laced with a practical pessimism.
  • I attempted to see things – including myself – more clearly. I attempted to prepare myself for what had appeared on my path. I read widely about my illness and possible treatments for it. To keep myself going, I tried to eat well and get plenty of sleep. I continued to write and do my work. I tried to enjoy my life. Although these measures did not wash away my worries about pain and death, they did sustain me through eight months of chemotherapy. They sustain me now that I’m in remission. And yet I realize that in the future I will face trouble for which I must be prepared. If the medical literature is accurate, it is only a matter of time until lymphoma cells reappear in my body. When that happens I will have to undergo more diagnostic test and more treatments. Despite the “darkness” of my future, I hope that my tempered optimism will enable me to enjoy the pleasures of good health for as long as I can.
  • Among the Songhay, clear vision also embodies a sense of humility. Arrogance, I have learned, can do a person great harm. The medical stance toward illness is militaristic. Illness is an invading force, a foreigner attempting to colonize the body. That alien force must first be subdued and then eliminated. Medical science has developed an impressive array of technological weapons to kill invading cells … which leads to the belief that we have the capacity to eradicate illnesses like cancer. In Balinese and Songhay society, by contrast, people have a more humble take on illness …. To respect the power of illness, which means that they attempt to incorporate it into their lives. If illness is incorporated into one’s life, people can use it to become stronger in body and wiser in spirit.
  • Cancer propels you down a difficult path on which it is important to be humble. If you are arrogant about life and believe that you can master illness, a disease, like cancer, can force you into a needlessly desperate corner.
  • The world of cancer is particularly fraught with war metaphors. We are fighting the war on cancer. Cancer cells attack and overwhelm healthy cells. Oncologists then send a sortie of chemotherapy agents on search-and-destroy missions. These agents destroy the enemy, but also kill healthy bystanders – collateral damage. These missions often result in heavy casualties. Although the technological marvels of modern medicine may make you the survivor of many battles, can you ever win the war? Adamu Jenitongo told me that one needs to respect illness as a part of life. If you respect illness, you can use it to develop your being.
  • Illness is a part of life; it lies within us and waits for the right moment to appear. The ideal for Songhay is to learn to respect the unalterable presence of illness and live with it. If you learn to live with illness, your being becomes stronger and stronger. The idea of living with an illness runs counter to major themes in American culture. No one wants to live with an illness. If we contract an illness, we want to conquer it.

Lessons from the Songhay

  • My teacher always said that there are many paths to well-being. I now understand more fully what that meant.
  • Confronting cancer is a frightening lonely proposition. How do you deal with your isolation? Songhay sorcerers have one suggestion; they say that you should diligently perform personal rituals. Each of us has his or her personal rituals. Doing certain things when we wake up or go to sleep may help to set the world straight and bring us a sense of calm. Where we are able to perform these personal rituals, they give us a good feeling … we can generate and maintain a measure of control over our lives. Engaging in personal rituals, of course, cannot guarantee a successful course of chemotherapy, but it can assure, I think, a certain sense of personal control, which goes a long way toward maintaining quality of life. Any cancer patient can engage in this kind of ritual …  you might recite a certain prayer or poem … that gives you comfort. You might wear clothing that makes you feel confident. You might bring music that sends you on a soothing dreamlike journey … They can bring you peace, so that you can be ready for what life presents on your path.

Finding Meaning in Your Cancer

  • Having been diagnosed with and treated for lymphoma forced me to reflect deeply about the meaning of my life. It is unthinkable to be grateful for a diagnosis of cancer. No one desires the pain and suffering that come with a serious illness. But once you’ve got it… why not incorporate it, as the Songhay would say, to bring to your being a deeper understanding of life’s forces and meanings? Cancer can be used, and my example is one of many thousands, to grow and change. 
  • Cancer compelled me to see myself – my being – more clearly.
  • As odd as it may seem, the unanticipated and devastating presence of cancer in my body opened a pathway to personal growth and development. It deepened my spiritual beliefs, refocused my professional visions and forced me to understand more realistically the symbiotic relationship between illness and health. In time, my experience of cancer toughened my body and strengthened my resolve.

What I Learned from Professor Stoller

I benefited a lot from Stoller’s writing. He showed me in words what it means to live with fear, in anxiety,  and what it was like to suffer pains associated with a diagnosis, treatment of cancer and even after the doctor had said you are cancer-free (really, cancer-free?).

For sixteen years, I saw how patients suffer from their cancer but I have not read any book that describes in detail their cancer experiences.  What Stoller wrote impacted me very much. It helped me to understand more about my patients’ sufferings – mentally, emotionally and physically.  As healers or caregivers, we experience cancer as a by stander – just from the outside, and we are not really involved. We assumed that we understand the patients’ sufferings – generally we don’t. We only learn about their problems through our “textbooks.” We don’t feel how they feel although we think that we know and care. The truth is – we are not supposed to be involved. The medical term for this attitude is detached concern.

These words that  Stoller wrote had made an impact on me: When I found myself standing on this point of misfortune… I desperately wanted someone – anyone – to tell me what to do. As Adamu Jenitongo would say, they must find their own way. They must choose which path to take and bear the consequences. Cancer patients must make the same fateful choice. That is the reality that the newly diagnosed cancer patient faces; it is a hard reality to bear. 

Here it was, an educated man – a professor of an American university, wanted someone – anyone – to tell him what to do.  He lived in America and had access to the best of medical facilities, why did he need someone – anyone – to advise him? It just shows how vulnerable we all are. I recall one patient who had cervical cancer. She did not know what to do after her diagnosis. Through the phone we talked to each other every day – and I was guiding her all the way. Even before going into the operation theatre, I had to talk to her to encourage her to take things easy. After the operation she called to say thank you and said that she benefited very much because I was there “by her side” all the way. Well, I took what she said as the usual compliment. After all, I thought, it is my job to help people. Let me put it right – this job is provided without any fee! But I still call it my job – perhaps social responsibility is more appropriate? However, after reading what Stoller wrote this responsibility acquired a deeper meaning. I felt more empathy for those who come to seek my help (which previously I called shopping spree) – for they are really lost and need someone – anyone, to guide them. I wonder, like Stoller – why don’t they go to the hospitals and consult the “real” professionals?

From this, it dawned on me that the role of CA Care has evolved to yet another level. Two days ago, two patients flew in from Makassar, Indonesia. They came to ask what to do. By right, they should have gone to see doctors in the hospitals, why come to CA Care? Their problem is they don’t even know where to go and what doctor to see! This time, I felt more empathy for them. I now realize that they are desperate and lost.  I have to be patient. They needed someone to guide them – like Stoller too. And these patients are far less educated than Stoller and they come from a much less developed place than America!

Last night, while I was writing this article, a lady with breast cancer called. She had undergone a mastectomy and wanted to know what to do next – to go for chemo or not to go. I told her not to panic or be in a rush to do things. Take it easy and ask her to come and see me with all the medical reports.  She replied: No, I am not afraid. I don’t panic either. I am glad that I have you to guide me from the very beginning. I am okay. Her words brought a different meaning to me – after reading Stoller’s book.

Professor Stoller benefited from the wisdom of his Master, Adamu Jenitongo. How could this be – a professor from America learning from an African bushman?  Listen to the wise words of Adamu: We all live on borrowed time. We should make the most of our borrowed time. To accomplish this feat, we need to pick our battles very carefully and exert our force when it is important to do so. A true sorcerer must not waste energy on needless battles.  You must avoid conflict as often as possible. When you do fight a battle, make sure it is an important one. Knowing when to fight is the mark of courage; it prepares you for battles worthy of your power.  Winning is not the goal of everyday confrontations. Cancer patients, old and young, male and female, have often learned to live with their illness and accept the difficult fact that death is part of life. Those lessons have enabled them to maintain their dignity and improve the quality of their lives. For me, that is the mark of courage.

I urged you to reflect deeply those words in bold. I for sure also benefited from this great, wise, 100-year-plus-old man, who came from the bushes of Africa.

Some Quotations

  • Given the realities of the American medical system, patients are often treated with insensitivity … “patients” must be “patient” for they have few rights and limited importance. Arthur Frank (The Wounded Storyteller) suggests that patients are subjects who are colonized by medicine.
  • Truth, I learn, is an unstable condition. To paraphrase William James, truth is like a check. It’s good only as long as there is money in the bank.
  • Skepticism has been central to the Western pursuit of knowledge. They tend to be skeptical of alternative medicine or nonscientific approaches to healing the body. It makes them cautious about diagnosis, a practice … that is laced with uncertainty and doubt. From within the village of the healthy, skepticism makes good sense; it has advanced our knowledge of and control over the world by leaps and bounds.  From within the village of the sick, in which death is our constant companions, skepticism fades away … you begin to wonder if skepticism is good for your body.
  • You look, but you don’t see. You listen, but you don’t hear. You touch, but you don’t feel – it takes a lifetime to learn how to “see,” “hear,” and “feel” the world.
  • You must earn knowledge. To earn it, misfortune must test your courage. Knowledge is greater than we are. You have to learn it slowly. You have to respect its power.
  • The Songhay realise that knowledge they acquired is borrowed and that their responsibility is to refine what they have learned and pass it on to the next generation. 
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