Cancer: A Search for Meaning
By Raj Maheshwari
I know that you know that you are a good person. I am too.
We don’t lie, we mean well for others, and we are selfish only to the extent that it doesn’t hurt others. We work hard, pay our taxes, do housework, take kids to Saturday morning activities, and help our friends. We feel tired, never have enough sleep, no time to read that book or to see that friend -- we do it all for a better future. Frustrations of present day life become easier to live through with the promised future of that new house, those vacations, the accolades.
You have always known that pain and suffering is part of life. You have read in newspapers and listened on news about thousands of people suffering and dying in India in the current pandemic, hundreds of people dying in America during the hurricane Katrina, more than a million people displaced in Bangladesh during the recent floods; you feel sorry for them. You also know about the kids dying daily of malnutrition in Africa and the human ravages of civil war in Syria, you feel deeply sorry for them too, but you had become numb to all this a long time ago. You have always thought that these things happen to other people, people who are either not able to take care of themselves or somehow are to be blamed themselves for not taking precautions. This would never happen to you because you are not like them. This is how I always felt too.
But then suddenly one day my doctor looked at me in the eyes and said solemnly, “I am sorry, you have an advanced cancer!” For a moment it was like putting my bare hands in the fresh snow, all goes numb. The brain rewinds and repeated what had just been said, once, twice, thrice, before the tears started to trickle down the face. How can it be? It is not supposed to be. It can’t be. What about my future!
As a doctor I was given the credo early on that work hard now and you will get to rest in the future. I worked hard, though I always thought I could work harder. I tried to be a good husband and father, though I always thought that I could do better. I relished time with friends, played tennis, went cycling, though I always wanted to do it more often. A young family, early career Psychiatrist, more training, rigours of a challenging job, and ambitions for the future – my present was full, but I was living for the future. Though I felt tired and was always scrambling for time, I was buoyed by the everyday opportunities of helping others, understanding the complexity of minds, a sense of purpose, others’ reliance on me to be there, and the promises of an accomplished future. I believed that my work, family, and friends provided me with three pillars for my stability, each of course wanted more of me and I had to constantly try. Present felt like a constant juggle, but the future offered a successful and secure existence where I could follow my interests in art, reading, writing, walking, reflection.
Bad things happen to people all the time, irrespective of age, race, culture, or status. When something bad happens to us collectively like fire, flood, famine, or epidemic, we tend to share the pain and loss, support each other, and try to move on. But when something happens just to us, individual us, then often the first question we ask is – Why me? Why this happened to me? Life threatening disease or accident, both tend to evoke such question, curiosity, perplexity. With accidents, we search and find some external cause for the event, search for the answer lies in the external world, we don’t need to look for other explanations. But a life threatening illness can dumbfound us. Our usual logical ways of cause and effect often does not apply. Even with illnesses where we do know the high risk factors like smoking and lung cancer, only 10-15% people with heavy smoking would ever get cancer. It becomes even more complex in people who do not carry the usual risk factors and yet get the disease, or people who are apparently healthy and bam! one fine day the doctor finds some random anomaly which turns out to be a cancer.
The fact that we all would die is an ever present knowledge in all of us, but most of us keep it buried in our minds, while we engage in the activities of everyday living. This fact only appears in the consciousness when we are forced to face the reality of death, either when some loved one dies or we ourselves are threatened, often to recede back in the darkness of mind ones the immediate threat is over. Everyday concerns and preoccupations of living means we are constantly trying to address the problems which most urgently demand our attention or offer some rewarding promise for the future, contemplating death and dying is not on the menu list for the most.
But then something like Cancer hits our life, and it becomes the only concern and preoccupation.
Our current medical knowledge tells us that cancer happens to 442 people per 100,000 every year. Cancer is the cells of our own body gone rogue, attempting to take over the normal functioning cells, and bringing the body down in the process. All for no purpose. It is the ISIS inside our bodies. Studies have successfully identified various risk factors for individual cancers, like smoking for lung cancer, viral infection for liver cancer, or sun for skin cancer, but it can still happen to entirely healthy individuals with no known risk factors, and people with multiple known risk factors can remain unaffected for their natural lives. It tells us that out of 100 smokers, 10-15 people are likely to get lung cancer, 90% of all who develop lung cancer are smokers, but it does not tell us why the other 85 people didn’t get the cancer despite smoking or why the 10 people who never smoked did develop cancer. In other words, it is like the risk of being in a car accident, bad drivers are more at risk, but even the safest driver is at risk when he gets behind the wheel. It can happen to any of us.
In the last half a century, medical science has made significant advances in developing treatments for these various cancers. We can perform most complex of surgeries, replace old organs with new transplants, offer radiotherapy, and have many chemotherapy agents to fight against these zombie cells. However, these treatment options come with a long list of caveats, likely side-effects, possible complications, and ‘no-promises’ prognostic forecasts.
The next question I asked my specialist, while tears were still rolling, was “how long do I have?” It was not a question to gather the facts, it was a plea to a higher authority for redemption. Mind having regained the capacity to negotiate, making an offer to accept the diagnosis if the promised future is restored. Hoping it to be a de-tour rather than change of destination.
Medical science is based on collecting and classifying observations in a meaningful manner to inform us about the causation, progress, and prognosis of the diseases, while also finding treatments. It is a group based model, which cannot take into account individual differences in the causation or experience of illness. It tells us that taking low dose aspirin would reduce the chance of cardiovascular problem by 10% in some people, it can’t tell us whether you will be the one to benefit or not. Prognostic forecasts in cancer can best be taken as a rudimentary weather forecast indicating it to be cold weather in Australia in June, which may be true for someone living in New South Wales or Victoria, while a Queenslander or Western Australian may still be enjoying lukewarm 28 degrees. The net survival rate with treatment for Stage-1 liver cancer is 78% over 1 year, which gradually comes down to 20% for a Stage-4 cancer (https://www.cancerresearchuk.org/health-professional/cancer- statistics/statistics-by-cancer-type/liver-cancer/survival). But no Liver specialist can tell you what difference the treatment could make to your life expectancy. These treatment studies are done on groups of people with common malignancy, but other individual features may differ as much as the temperature in Sydney and Cairns on a June afternoon, and you can never know which end of the response you would fit in. Even if we were to take a group of people with as many similar characteristics as possible and give them the same chemotherapy treatment, would they all have the same response? The answer is No. Even with all things being equal we show an unpredictable individual response to the cancer treatment, and then there are all those people who have defied all prognostic odds and continue to live.
So what is that ‘individual’ bit that plays such a significant role in whether you will get cancer and how you would respond to it? When you are faced with cancer this is what matters the most, “how long do I have” or “how do I beat this”, not how long on average did the group of people in that Spanish study lived with this cancer. Medicine has no answer for it, and this frightens us.
In the times of uncertainty and fear we look for certainties and assurances. When death comes knocking we inevitably turn towards family, religion, spirituality, God. It was introduced to me as soon as the doctor left the room, when my parents announced with calm and confidence, “you don’t worry, God will make it right.” God and religion still remain the go to place when we are faced with the fear of dying, not just our own mortality but also of those we love and cannot bear loosing.
Medicine has a fundamental difficulty in accepting death. It approaches death as ‘we haven’t found its cure yet’, using tests and investigations as the means to constantly keeping the hope alive. To maintain its scientific robe it remains aloof to the central human concerns of fear, hope, beauty, weakness, striving, suffering, virtue. Fear of dying is not fear of death, it is the fear and pain of losing that hoped for future, pain of separating from people we love. Once you die, you are there no more, but in the process of dying you experience the fear and pain of not seeing your children grow, to play with your grandchildren, to finish that project, to go on that planned dream holiday, to do all that in the future. It is the fear of being forgotten. Would anyone remember me once I am gone?
Once ‘I’ die, ‘I’ will be gone, forever. It is the fear of having had no meaning to our existence, and thus dying a meaningless death. We are trained to look for moral in every story, to take key points from every lecture, to take minutes at each meeting, to weigh pros and cons for all decisions. When we look back, most of us are struck by the ordinariness of our lives. It does not matter whether you are a housewife or a successful doctor, the only life we know is the life we lived, and it feels ordinary. Our accomplishments of any given day are always overshadowed by our desire for more from tomorrow, such that in the rear-view mirror we only see the dust from the road much travelled. All along we hope to someday find some special meaning to our existence, doing something extraordinary, making some difference, to become immortal, if not physically, at least in people’s memory. When you have cancer that hope is gone. We want someone to tell us what did our life mean, so that we can die a meaningful death.
Every culture and religious tradition has its roadmap to help their members cope with pain, suffering, and grief. The common attempt has been to not let suffering be seen as meaningless, instead to accept it as a bitter pill in the service of living a better life, or a better afterlife. Later that day when a friend asked me, in an attempt to offer me some comfort, if I was spiritual -- I drew a blank, I hadn’t given it a thought since I was a teenager.
We all are born in some family, some culture, race, country, religion, however, our relationship to these is highly personal. Some are happy to accept the faith and beliefs handed down by the families and carry it forward, while others rebel against the traditions and prefer to discover their own faith and allegiances. Often the foundations of our relationship with religion are laid early in life through witnessing family rituals and teachings, and some might even argue that it is carried in our familial genes. However these are not fully formed belief systems, it develops over time, submitting to either the wider group’s preferences, or by rejecting the prevalent theory of faith. Preoccupied with our everyday living most of us have distanced away from organized religion and religious institutions, much of what religion, faith, or spirituality means for us remains unexamined. Yet when Cancer hits, this is where we turn to find some meaning.
We only think when we are confronted with problems. John Dewey (1884)
Hinduism is considered to be the oldest extant religion. It came into early existence around 4000 years ago and then gradually developed over time. Considering its age, it perhaps has had to deal with these existential issues far more than other religions, and not surprisingly it does offer a highly developed thought system regarding life and death. As I discovered, Hinduism considers that we all have a soul or spirit inside us, called as ‘atman’, which is eternal and our true self, separate from our ego or false self. This soul, considered as a servant to God or even identified with God by many, passes on from one life time to the next, inhabiting a temporary body in each lifetime. The body can suffer, but the soul can remain detached from the material world of pain and pleasure. You are not your body, instead the soul is your spiritual self, which passes on with you. So when you die, you are only letting go of your temporary body, while your real self, the soul will pass on to the next life form, thus maintaining the cycle of reincarnation (cycle of life and birth). However, the soul does not pass on as a blank slate, it carries the imprint of the actions from this lifetime as your ‘karma’, which have influence over the quality of life in this and the future lives. Karma prescribes to the law that every action has a consistent reaction, good or virtuous actions according to one’s dharma (one’s virtuous duty) will have good reactions while bad actions will bring adverse effect. Hence, Hinduism urges to focus on one’s spiritual health, connection with God, which even if neglected during the lifetime, can be redeemed by one’s devotion to God during the final stages of life. Although Hindus believe in the multitude of representations of God, most Hindus believe in one Supreme God, a single transcendent power. There is an extended flexibility in how individuals may approach this God, as the Lord Almighty, a lover, a parent figure, a friend, a beautiful woman, a child, an angry god or a ferocious goddess.
Apart from the consequences of one’s karma (this or past life), Hinduism also offers a more systematic theory to explain unexpected personal events based on the widely followed ancient principles of Vedic (coming from the ancient texts of Hindusim called Vedas) Astrology. It relates to the Vedic understanding of celestial events having an influence on every person’s life experience and different stages of life, even on specific attributes and qualities of the person, through planetary rays, based on the positioning of 9 Grahas (Sanskrit word, which can be taken as English equivalent to planet, though they are not physical entities) in the person’s zodiac map at birth and at any given point in life. These Grahas are divided into two groups, according to their desirable and not so desirable attributes, and each have their specific meaning and significance. The ancient observation of the relationship between the movement of planets and variations in individual’s experience gave rise to this field of study to explore these variations in order to anticipate challenges in life and comprehend their meaning. (ref: http://www.vaastuinternational.com/astrology2.html). Although still practiced widely among the followers of Hinduism, it is not exclusive to this religion; this practice was also noted in Chaucer’s Canterbury Tales from 14th Century, as he describes the Doctor among the contingent of the pilgrims,
For being grounded in astronomy,
He watched his patient closely for the hours
When, by his horoscope, he knew the powers
Of favourable planets, then ascendent
(ref: The Canterbury Tales. Geoffrey Chaucer. Translated by Nevill Coghill. Pg 14. Penguin Classics 2013)
Practitioners of this ancient science can offer techniques based on specific rituals of prayers or use of specific gems or stones to moderate the effects of undesirable planetary positions, thus providing a complimentary way of healing, or at least limit the individual suffering. Like most ancient practices, this body of knowledge is based on observation and experiences over the millenniums, practiced by selected few who devote their lifetime to study it, and followed by millions of sufferers looking for some divine meaning in their suffering and hope to survive it.
Faith is the common cornerstone for all such ancient practices, another point of convergence for all religious teachings -- to surrender your-self to a higher authority who may have the knowledge, wisdom, or divine means to hold your hand in the unending dark tunnel of fear and uncertainty. It is trust in a higher authority to guide us when we have lost sense of direction, becomes our GPS, like an Australian trying to find his way through the Sahara desert for the first time. Faith helps in symbolizing what otherwise feels overwhelming and unbearable.
Sceptics don’t have access to the truth, door to this wisdom is open only to believers, while the modern science is expected to gradually catch up. Belief is not an end in itself, but as a means to understand; unless you believe you will not understand Foundations of Christianity were laid down 2000 years ago when Jesus of Nazareth urged his students to go around villages and towns in Palestine, spreading the message of the Kingdom of God, while also paying special attention to the sick. Healing of the sick was the cornerstone of Jesus’ teachings to his students. Dramatic acts of healing, exorcism and other miracles form a significant part of the account of his work. However, the horror of his death and its later interpretation by his followers instilled the ideas of suffering and death at the very core of Christian theology.
Christianity offers that the humans have forfeited the right to immortality through their very actions, the original sin of Adam and Eve in the Garden of Eden became the pronouncement on all their descendants: the sins of fathers are visited on the children. “The wages of sin is death” (Rom 6:23), thus making death an universal fate. “Therefore as the sin came into the world through one man and death through sin, so death spread to all men” (Rom. 5:12). Suffering in Christianity is a means for the soul to seek rebirth and resurrection, and thus by forsaking impurities one seeks a closer bond with God.
Although it offers a version of harsh and punitive God, Christian scholars argue that the God is good and he made all things good, amongst that is also the free will of rational creatures, to make a choice of good or evil, but the abuse of this free will to transgress the will of God is the primary cause for suffering, illness, and death. However, pain and suffering is also the time when we are closest to God, because at that time we are most receptive to his message (Lewis). Thus it sees suffering and death not only inevitable, but also an essential step towards one’s spiritual journey of becoming close to God.
Elizabeth noted five stages of grief – denial, anger, bargaining, depression, and acceptance. These are not necessarily linear or in the same order, and not everyone goes through all these stages. Some people can revert back to the same stage multiple times over, like feeling angry every time one has to face a relapse. However, broadly these stages are commonly observed by people going through grieving process as they progress from the initial reaction to a slow acceptance of the reality through reflection, support, and knowledge. The notion of someone almighty powerful who has control over where we are helpless permits us to externalize our inner anguish, express anger without fear of retribution, and offer amends in return of comfort and hope. Internal mechanisms we all employ when faced with unbearable or unacceptable reality, until we find some way to accept the painful reality. For Kübler-Ross, a Swiss psychiatrist, through her work with terminally ill patients many, this painful reality remains unacceptable up till the very end, and surrendering to the higher almighty power remains the only source of comfort.
John Dewey, a prominent American philosopher of 20th Century, in his essay ‘Kant and the Philosophic Method’ (1884) argued that when faced with a threat to our existence and uncertainty we tend to employ two strategies, either appeal to the higher forces in the universe for help, or we seek to gain control through investigating the world. In the former strategy one leans towards the religion and bargaining with the Gods, while the other strategy leads to scientific and philosophic enquiry into the nature of uncertainty enabling what can be modified, accepting that life is inherently unpredictable and risky.
Freud, the founder of psychoanalysis, saw religion as a barrier in our ability to accept the reality of pain and suffering. He asserted that “... the pronouncements of religion promising men protection and happiness if they could only fulfill certain ethical requirements (have) ... shown themselves unworthy of belief. It seems not to be the case that there is a Power in the universe which watches over the well-being of individuals with parental care and brings all their affairs to a happy ending ... Earthquakes, tidal waves, conflagrations, make no distinction between the virtuous and pious and the scoundrel or unbeliever.” (Pg 205, as in the Question of God)
Freud considered that we all developmentally carry an ambivalent feeling towards our father, affectionate and submissive but also hostile and defiance. Religion offers the God as the father-substitute, or more accurately a superior father, towards whom we approach with similar ambivalence, longing for him and hope for protection on the one hand, defiance and fear of punishment on the other. These ambivalent feelings are resolved by attributing positive feelings towards God and the negative towards the concept of devil.
In contemplating life without spiritual beliefs, Freud reflected that we would be confronted by the full extent of our helplessness in the face of pain and suffering, without the reliance of care and protection of some higher power, eventually knowing that there is no help, we would learn to endure them with resignation. His only advice was to endure the suffering with resignation. Incidentally, Freud suffered with cancer of mouth for the last sixteen years of his life and had to undergo around thirty operations, resulting in a metal prosthesis in his mouth with persistent pain and breathing difficulties. He eventually persuaded his physician to give him a fatal dose of morphine at the age of 83.
For many, the reality of pain and suffering also proves to be an awakening experience to push us out of the everyday mode of thinking (how things are) to a more ontological mode of thinking (that things are), from a logical distant observer of the world to a change- enabling engaged part of the world.
Buddha is said to have left his royal destiny in search of the Enlightenment after being confronted by the suffering of an old man, a diseased man, and a decaying corpse. He was unsettled by the transitory nature of life and inevitability of suffering and death, which motivated him to search for a way to relieve universal suffering.
In contrast to other religions, Buddhism does not offer any theory regarding the origin of the universe or the nature of the creator, instead it focuses on the issues of life, death, and suffering enshrined in the Buddha’s teachings of the Four Noble Truths concerning the nature, origin, and cessation of suffering. Buddha taught that all existence is suffering, caused by one’s attachment to life, lust, hatred, ignorance, and delusion, which can be ended by following the Noble Eightfold Path – right understanding, right thought, right speech, right action, right livelihood, right effort right mindfulness, and right concentration. Freedom from suffering can be achieved by aspiring for calmness of soul by detaching oneself from the individualistic focus on desires, individuality, and suffering, through meditation and studying Buddhist teachings. It does not consider death as the end point of life, instead it sees the soul as a guest inhabiting the body, which then passes on to other lives. The body and mind are inherently interlinked, and the suffering is caused by the human desire of controlling the body in the process of dying. In terminal cancer, one loses control over the body, but mind can remain clear by the practice of meditation. It encourages to meditate on death to develop a realistic perception of the present reality, and accept change as a fundamental aspect of existence. To accept the transitory nature of life and suffering as an inevitable part of life.
There is a considerable overlap between Buddha’s teachings and the Stoic philosophers. Philosophy as an investigative study into the fundamental nature of knowledge and reality has long been interested in suffering and death. Epicurus, a prominent Greek philosopher from 300 BCE, believed that the root cause of human misery is the omnipresent fear of death. Stoicism, 3rd century BCE philosophy emphasized the path to happiness was in accepting the moment as it was and not be controlled by the desire for pain or pleasure, thus to maintain equanimity towards both life and death. The Stoic philosophers (like Zeno, Cicero, Marcus Aurelius) believed that learning to live well is learning to die well, and that, conversely, learning to die well is learning to live well. Epicurus also challenged us to consider that even the soul is mortal, so why fear death if nothing remains after death, contrary to most religious traditions which believe in the idea of soul as a comfort from the anguish of nothingness after death. Philosophers like Nietzsche and Schopenhauer encourage us to see death as also an opportunity to re-evaluate life. Nietzsche’s advice to “Become who you are” and Schopenhauer’s counsel on following good conscience as the ultimate goal rather than the unsatisfying pursuit of wealth and reputation, provide alternative focus to life until death; a focus that does not rely on a supreme authority or the promise of afterlife. Irvin Yalom, an existential psychotherapist, in his book Staring at the Sun explored the philosophical idea of Rippling as an antidote to the fear of meaninglessness of one’s life. He encouraged his patient’s to see their life’s work – social, scientific, personal, financial – as having a rippling effect on other’s lives, contributing to their happiness and wellbeing, even when individual contribution remains unacknowledged or unapparent. Like a tree offering a fruit that would bring joy to a child’s face, even though the child may never come to know the tree.
Dr Shaun Matthews in his book Journeys in Healing interviewed people who had survived the diagnoses of terminal or other life threatening illness by exploring spiritual and other complementary means to restore health. He discovered that the common themes were to keep an open mind for different models of healing, to see illness as an opportunity to make the changes you have long desired in you and the world around you, and not to focus on the time left instead on the quality of what is still ahead of you.
In the recent decades with increased scientific and life-style focus on traditional Eastern practices like yoga and meditation, the new-age complementary medicine movement offers another source of knowledge. It emphasizes on the power of inner thoughts and attitudes to bring about dramatic changes in physical health. Its star proponents like Deepak Chopra and Joe Dispenza argue that by replacing negative emotions, habits, and attitudes with positive ones, we can rewire the brain, which can bring about lasting changes to our physical health, including healing ourselves from chronic or life-threatening illnesses. This transformation is usually aided by mindfulness meditation, yoga, mentoring, prayers, and ayurvedic remedies. Although the validity of the healing claims through these methods is widely contested, the significant underlying message is to be proactive about your own healing and to mentally want to get well. This compliments the religious, secular philosophical, or psychological view, by adding personal agency to accepting the illness and optimizing the time that is left through focusing on God or on one’s quality of life.
Irrespective of which frame of thinking we lean towards, cancer does force us to pause, gives us permission to have time and space to focus on ourselves. Death may be a one time event, but going through a terminal illness is a process. It reminds us of our forgotten vulnerabilities and the ever present awareness of death. In those silent pauses, we have an opportunity to understand our self, as part of the creation of bigger whole, foster the spiritual dimension of our health; we are more receptive to seeing ourselves linked to our environment as our body becomes sensitive to every meal we eat, the weather outside, the sounds of the nature, the unpredictable effects of the medicines. We are no longer the independent functioning invulnerable machines, who can pick and choose what we attend to, who we speak to, or racing towards the future. We become vulnerable and we have little control. We have to depend on others around us, we have to acknowledge restorative potential of a sunny day, we have to open ourselves to the healing power of those tiny herbs which were unnoticed all our lives. Process of healing requires time to love ourself, to accept ourself.
If we reverse our Initial question – Why me? – to – Why not we all? Our complex bodies need balance to optimally function, which happens all the time in the background while we sleeping, eating, resting, working, away from our consciousness. It is so easy to be out of balance, why don’t we all fall sick, why don’t we all get cancer? It is indeed a wonder of nature that our body and mind knows to take care of itself even when we are focused on future. We know of our vulnerability, but we keep it hidden from ourselves, fearing that we can’t function with this awareness. People recover from heart attack, but can’t recover from the fact that they had a heart attack, suddenly faced with hidden vulnerability, now can’t function, die of this shock, this grief of being vulnerable.
Whether we believe in the existence of God or not, as we open ourselves to the world around us and within us, it is a step towards our spiritual journey. It can take a form in seeking closeness to God, rebuilding relationships, joining an art class, writing a book or continuing to pursue what matters most to you ‘Now’. What strikes me is that it is very difficult to capture the issue of illness, distress, pain, loss, death with any one lens, because it is hard to make meaning that is both intellectually and spiritually satisfying. We need variety of lenses, variety of languages, vocabulary – literature, religion, spiritualism, science, philosophy. Human knowledge is never contained in any one profession, “and truth comes somewhere all above them.” (Breath Becomes Air)
The idea of death has the potential to bring meaning to our lives -- life to death, or is it death to life? If we were to draw a log map of our thoughts throughout the day, most of the lines would stretch between past and the future, with present being only a pitstop. When under stress, past gives us the ready dictionary to interpret our present feelings, ‘this always happens to me ... he always does this to me ... I can’t do this’, while future offers the ‘only if’ promise – ‘only if I can be with a different person ... only if I can get more money ... only if I can be a better player.’ This promise of ‘only if’ is the driving force for most of us, and absence of it pushes us into despair. Until now I was living my life as if it is an ongoing preparation to the point where it will all come together and provide an overall meaning to all that I have done. Like reading a book with many characters and stories, working towards the end to see how it will all tie in together. Perhaps life is not like that, it is about a character, his story as it is developing, what I am doing now, is it meaningful or not. Sometimes an awakening trigger like cancer comes to remind it to good people, like you and me.
“You shall know the truth, and the truth shall set you free” (Gospel of John 8:32)