The meaning of illness

Dear Friends,

Summary

I’m embarrassed to be delinquent in posting my weekly blogs. The reasons are manifold: tiredness, nothing novel to say, brain-freeze, postponitis, etc. I’ve been humbled to have received a number of “dunning notices” from readers of these random essays. Forgive me for the former. A sincere “thank you” for the latter.

I’ve been surprised to have become discombobulated about what I considered an insignificant side-effect. It surprised me by its impact on me; greater than I’d anticipated. Some weeks ago, the cumulative effect of the chemotherapies I’ve been undergoing started manifesting themselves through a gradual loss of taste and smell. Now, just as Thanksgiving and the Christmas holidays are upon us, everything I eat seems to taste like unseasoned mashed potatoes. It shouldn’t be a big deal. The effect of the deterioration of my taste cells should simply validate that the chemo is working. Its evidence, after all, that the chemo is likely to be doing the same thing to any fast-growing cancer cells that remain in my body. But the timing of the loss of taste seems particularly inconvenient with the arrival of the holidays. It is during the holidays that the particular culinary smells of the house and kitchen typically evoke so many fond memories. Missing the fullness of those sensory recollections disappoints me more than I expected it would. To make matters worse, my nurses tell me to expect that this condition will persist through to the end of my chemo, 3 months hence.

As I’ve been traveling through my process of confronting cancer, it is difficult not to wonder “What is the meaning of this illness?” It may be the right time for me to gather a couple of my personal perspectives. Though there are many, I’m only going to examine the meaning of my illness through two.

Detail

From a purely medical perspective, my illness can be understood as emerging from only a handful of sources:

Natural Internal Processes. The body ages in ways we don’t completely understand. Some cells apparently have some sort of time switch that, when activated, causes them to begin losing their ongoing “liveliness.” Or the switch simply lets the cells die. Some cells, such as those that constitute our hair follicles might lose their capacity to create or pass on coloration with the result that our hair turns white. Some degradation of other cells may affect our resilience, strength, vision, taste or hearing. Since our bodies are comprised of bacterial organisms by the millions, a change in the balance of those organisms internal to us can be a cause of illness.

External Causes. Another source of illness might be external. Some of our cells may mutate due to cosmic rays from the sun. Whenever we go through the security scanners at airports we receive bursts of energy that can harm our cells. When we board a plane, the flight path brings us closer to danger by our altitude. Even on terra firma, our cells can be damaged when we stand too close to a poorly sealed microwave oven. There are many things in our civilized urban environment that expose us to etherial energy waves. Other toxins to which we are exposed are preservative chemicals in our food or ingredients in the plastics in which our food is increasingly packaged. Contaminants in our air and water can damage our body through external sources.

Psychological Causes. There is increasing evidence that our state of mind has an influence on our health. Stress manifests itself, physically, in headaches or backaches. Stress can also change our moods. These effects are being increasingly studied (not least by our daughter, Krysia, who has taken a particular interest in this arena). Emotions and mood appear to have a strong correlation to health; especially on the rate of recovery from illness.

Social Causes. Moods are affected by realities beyond individual control: by not having a job, by living in a relationship that is harmful. The list is long. There are things we can do but we must be willing to actively confront the source of our problems. Even if individuals are willing to go through such a process, they may find it difficult (or even impossible) to change their situation to eliminate the conditions that damage them. The process can be rocky and painful for many.

To answer the question of the meaning of illness, the medical profession examines these alternative sources of illness and attempts to understand disease better. This has proven to be no small endeavor. Equipped with today’s sophisticated capabilities and tools, scientists and researchers drill down to ultimate structures in microbiology. As they do so, they seem to constantly uncover deeper underlying levels and incredibly complex micro-relationships. These hidden relationships seem to be at the heart of life. Yet what, at the molecular (or even finer) level can be defined as the source of life continues to be elusive to the scientific researcher.

At the other end of the spectrum, science also explores the organism that is our body and mind within a macro-context. There, science examine personality and social structures, hoping to identify what makes us individuals. All our relationships, family, society, culture, have an influence on us as individuals. Scientists are discovering that the macro-dynamics are equally as complex as the deconstructionist micro-examinations.

In the end, defining the meaning of illness in our lives—within an exclusively biological context—seems confoundingly elusive.

___________

Religious persons might explore the question of the meaning of illness from a different perspective.

The vulnerability of the created being. Religious believers often conclude that the source of life is embodied in individual beings. For some, the source of life derives from a Life Spirit. The nature of the Life Spirit is not easily identified, but is concluded to exist from the logic of Faith. For others the source of life is personified in—and discerned through—the form of various deities. Animists believe in the inherent liveliness of the world in which we participate. They ascribe various levels of “life” to all the objects we discern in the world around us. Monotheists define the source of life simply as “God”. God cannot be completely understood by mere mortal mental capacity, but spiritual scholars have enlarged our understanding of a Creator God who is, at once, intimate and present in each of our lives.

What seems to be common to all religious believers is an awareness, not merely of the animating influence of life, but of the essential personal and social imperatives that derive from living. They also recognize a sense of life’s vulnerability. It is that vulnerability that gives rise to patterns of behavior (and mis-behavior). Abstract considerations distill to the practical questions of how one individual, me, lives my life. Religion encourages me to confront the question of how my life (or my sins) impact me or the world around me, if at all. How do my individual choices and actions relate to illness?

One way religion invites us to view illness is through our human capacity to choose. Health requires us to become aware of the effects of our choices on ourselves and on others. Religious insight seeks to help individuals learn to make positive choices. Religion asks us to master our ability to choose, and exhorts us to choose wisely. Every day, we make choices along a wide panoply of spectra. We may be counseled to examine these decisions by religious advisors.

The relation of illness to the freedom of choice. There is considerable literature about the human freedom to chose. It is a challenging behavior to understand. Some contemporary studies question the very notion of whether or not we even possess freedom of choice. The question has been examined for millennia. Ancient Sufi wisdom-seekers took up a study that focused on the traps that lay in the path of choosing wisely. A contemporary form of that practice of the Sufi meditations has come down to us, today, as the enneagram mandala. Working one’s way, consciously and without anxiety, through the structure of an enneagram, an individual begins to recognize patterns of his or her own existing behavior. The goal of the study is greater awareness of self. A further goal is to become more aware of how one can become enthralled (to be a thrall of, or a slave to) to patterns of behavior that somehow contradict or inhibit our becoming free and fully human.

What the Sufis attempted to understand is akin to that to which the Buddha eventually aspired. Buddha came to practice abstinence and abnegation of the self for similar reasons the Sufis sought to rid themselves of barriers to fullness. Buddha sought to become un-enthralled to those aspects of the world (inhibitions and attractions, both) that surround us and falsely tempt us away from our true nature.

Christian writers have concluded the same. Saint Ignatius counsels his students to adopt a radical detachment: “We should not fix our desires on health or sickness, wealth or poverty, success or failure, a long life or a short one.”  The model for Christians is the life of Christ. His life is grounded in trust in God the Father, living a coherent life inspired by the Spirit, and conveying justice, mercy and charity to all who deserved it without claiming anything in return. The living of such a life is sufficient, unto death.

Perhaps because they preceded the rise of science, religious widom-seekers have enriched us across the millennia by uncovering how we are to relate to the world around us, to our fellow human beings in this life, and to our communities and societies. Men and women across the ages have passed on insights on how we form ethical and moral lives. They sought, over and over, to comprehend human life as derivative of the ultimate source of life. They have consistently been guided by the “how?”  we can fully participate in creation. In such a cosmic context, illnesses (spiritual or physical) are understood in a different way, not exclusively biological. What, then, is the meaning of illness in such a broad context?

Through my blogs, I’ve explored a growing awareness of various fears I possessed about which I was previously only dimly aware. Composing these blogs have heightened my attention to the physical (and perhaps psychological) effects of my chemotherapy. I’m drawn by scientific, medical perspectives to concentrate, analyze, and attend to myself in ways in which I was not altogether accustomed. They are ways that are clearly informative and important. They all contribute to my participating in managing my health so that I can more properly assist the specialists and care-givers that have studied and researched the biological illness it is their job to cure.

To look at my illness, alternatively, from a religious perspective is instructive. I’m immediately confronted by the reality that I do not possess my life. I did not cause it. I did not ask for it. I was never in a position to chose to accept life or not. I cannot deny it. My life is a gift. As such, I can glory in it. I can celebrate it. I can live it with passion and joy. I, myself, can share it with others as my own gift. What is startling is that life defiantly resists being rejected. Life, by its very nature, appears to be indestructable, buoyant, optimistic, and forward-evolving. In such a context, my illness is a part of my life.

Perhaps I am well advised, under these circumstances, to learn to ignore my illness. If it is a part of life, it is not appropriate to respond to illness with self-pity. I am capable of letting it becoming a source of detrimental over-concern; too dominant in my thoughts and actions. I don’t want that to happen. In another way, my illness presents an opportunity. Experiencing its effects lets me understand more clearly my own fallibility. Illness can challenge me to think more deeply about time. It may encourage me to reflect upon (to use a phrase from a confessional prayer) “what I have done and what I have failed to do”. Illness may encourage me to live in the now. Thinking of the ultimate effect of a life-threatening illness may direct me to recognize how fleeting is the time I inhabit this body and this world. Meditations of these kinds can help me become more empathetic with those who really suffer in this world. I can exercise ways in how my discomforts can be put to better use to ameliorate or lighten the load that others bear. I can gain practice in being more sensitive to those around me: those who are my care-givers, and mainly those who are my lovers (for it seems altogether too easy to take my lovers for granted and to expect that they share my personal perspective [which they can’t, for they have their own]): my family, my spouse, my offspring, my extended family.

If the meaning of illness is linked to the fact that it can assist me to deepen virtues that are already a nascent part of my life… If my illness can sharpen my detachment, hearkening to the advice of mystics, buddhas, Sufis, native American shamans, and all those who have been passing their wisdom from generation to generation to me… then my illness is not as fearful as it is instructive; perhaps even welcome in such a context.

—–

I’m not certain I can integrate such disparate approaches as quickly as I wish. I only recognize that it is helpful to spend some time within the framework of religious teaching, allowing spiritual insights to mix with physical insights to which I am exposed through the field of medical theory and practice. Mixing both perspectives exposes me to exhilarating lessons that either, alone, might not convey. Together they enrich my chances to live a more attentive human created life from this point on, until the transition of my life through death. Understood through these broader reflections, my death, after all, is inevitable. It will be something I will experience, irrespective of whether the transition is caused by my cancer or by my being accidentally run over by a streetcar, or by the cessation of my breathing at night, or by my being trampled to death by a startled stampeding elephant. Any one of those real possibilities will occasion my death. More likely, some other cause will inaugurate the transition of my life into wherever or however it will manifest itself in the life that persists and may follow this one.

Reflecting on both the medical and the religious dimensions of my cancer allows me to experience it in richer and broader context than would be possible if I possessed only one perspective from which to think about it. In this state of mind, I apologize, anew, for not keeping up with my weekly postings, especially for those who have been interested in them, and who may have employed these missives as a means of identifying that I’m still well and proceeding with personal awareness through this surprisingly rich process.

 Chet

Ingrained habits die hard

Dear Friends,

Summary

Its a natural inclination for me to want to learn as much as possible about my illness. My attitude is obviously shared by others. It is certainly reinforced by my immediate community of friends. Folks have been referring me to cancer bibliographies and have been sending scanned articles from medical journals for me to read. Others have sent reference books for me to add to my reading pile. I’ve welcomed them all. It appeared irresponsible of me not to conscientiously get to “know thy [my] enemy.” Lately, I’ve been wondering if the nature of knowledge has changed so much in my lifetime that I should master new techniques to keep up with the growing corpus of knowledge, even in my “little corner” of cancer maladies. But what may be required of me, might in fact be different from adopting new searching and filtering techniques. I may need to understand my role differently, and vest myself with an entirely different attitude about learning and the nature of applied knowledge in my case.

Details

Siddartha Mukherjee’s The Emperor of all Maladies: a biography of cancer, was published by Scribner just last year. Its a book well worth reading for sheer enjoyment, whether one is a cancer patient or not. In his comprehensive work, Mukherjee (a Stanford grad now on the faculty and on the clinical staff at the Columbia University Medical Center) sets the context for his “biography” with a historical overview of what is known about the incidence of cancer in human beings. In the doing, he relates numerous fascinating vignettes of individual researchers, practitioners and patients over the historical record of the disease. Descriptions of interventions and protocols are provided with unstinting candor. The author doesn’t shirk from explaining how the experience of physicians confronting this confounding disease led, sometimes, to bizarre conclusions and deadly methods of treatment. But he reinforces an optimistic belief that—inexorably, and despite sometimes laughable dead-ends—each historical step led to insight and improved understanding about the disease and its effective treatment. Of particular interest to me was the author’s explanation of the intricate web of institutional collaboration and the eventual governmental coordination of cancer research in the United States. In the section of the book that deals with these institutional relationships, Mukherjee describes the grass-roots social advocacy movements that emerged just decades ago, and the ultimately political maneuverings on which funding for cancer research depends.

I found interesting, as well, the several professional medical journal articles I read. Some described, in meticulous dispassionate detail, minute elements of cell structure; others, the various observed processes of metastasization; still others, the elusive chemical traces of the spread or curtailment of cancers. The articles that documented the efficacy of particular chemotherapies to thwart cancer waywardness filled me admiration. Highly sophisticated methodologies are presently employed to study what might be happening in the body as various chemicals are deployed towards their targets. As I read, it became abundantly clear (were it not sufficiently obvious from the very beginning) that I could no more play “catch-up” with the varied specialties involved in my treatment than I can, today, maintain my car in top running condition (my vehicle being less complicated, by far, than my body.)

The first automobile I could claim as “my own” was a four-cylinder Ford “Consul” my Dad had acquired, who knows where, at fourth- or umpteenth-hand for my use. He hoped, I know, that I’d take an interest in helping him dismantle the engine, replace the compression rings on the cylinders, adjust all the timings, and put everything together again to make the engine purr. More challenging (his eyes lit up at the prospect) was taking apart the comparatively simple transmission, replacing the broken teeth of the multiple interlocked gears, with their minutely-calibrated slip-rings, with new ones (some of which he manufactured himself). The car my Dad purchased was a junkyard wreck. The car he restored was a beauty to drive and to behold. After the mechanical overhaul was complete, it even sported a shiny metallic blue paint job. Fortunately, some of my Dad’s joy in making broken things right, has filtered down (who knows by what genetic mechanism?) to his grandson. My son, Michał, occasionally purchases worn-out milk delivery trucks on eBay. He flies to retrieve the carcasses and shepherds them home, where he lavishes enough attention on their repair and restoration to incorporate the trucks into the small fleet of vintage milk-delivery trucks he operates on the San Francisco Peninsula.

The point of this nostalgia is that there was a time, in my lifetime, when automobiles were fixable by their owners. Monica’s Uncle Bob took apart and put back together again in working order, an assortment of broken mantle and wall clocks, much to the amazement of all who knew him (and much to his relaxed satisfaction). I, myself, could competently change the spark plugs on my Consul, complete with properly adjusting the firing gaps on the plugs before replacing them into their cylinders. The mastery of these useful skills depended, in large part, on access to instruction manuals and books. Mechanical devices (like the relatively simple automobiles of my young adulthood) have evolved into the computerized and mother-boarded vehicles of the present. These no longer come supplied with owner’s manuals. If one grows up with the concept that maintaining vehicles is an owner’s responsibility, one easily translates that attitude towards one’s own body. I’m writing about cars, here. They are entirely crude metaphors—but useful ones—to explain what has taken place in the acquisition and mastery of scientific knowledge during the same span of time.

The history of Science—particularly in recent decades—is marked by astounding growth in better understanding the world we inhabit and how it works. Even so, our knowledge is sketchy, at best. Acquisition of scientific knowledge, in my lifetime, has been catapulted forward, however, by communications technologies. These allow massive amounts of data to be stored in a form that allows future access, without requiring prior knowledge about what might need to be retrieved, nor for what purpose. Dauntingly complicated (except, perhaps, to their programmers) software tools have been designed that enable professional collaboration. What has replaced individual competence is, today, the leveraging of insights and experiences of multiple researchers and clinicians (wherever in the world they may be.) What has replaced the owner’s manual, is retrievability of highly beneficial statistical and evidentiary data from patients like me (wherever such data happens to exist… even in a “cloud”). What has replaced the adjustable wrench, is computer-assisted laboratory and clinical equipment of incredible dexterity and sensitivity. As the result of such leveraging, scientific knowledge is expanding geometrically, rather than at the slower linear progression that may have characterized it in the past.

Changes like these in the volume of data and the specialization of discipline have considerable practical consequences for patients like myself. What I know, that is actionable, is precious little (even with respect to my 2001 automobile). My participation in my recovery requires extremely little knowledge of me of the kind I became trained to seek throughout my life. As a percentage of the the growing corpus of knowledge about cancer, my own experiential bit is an ever-diminishing miniscule. Neither can I consult an “owner’s manual” and pretend to be the professional engineer my Dad was (or the armchair physician I might have hoped to have become through my reading.) Nor can I deny my vulnerability (and here’s the rub), by claiming to be able to comprehend anything at all about what is happening with respect to my medical problem. I cannot know all that specialists know, even though I know they don’t know as much as they will know in the future. I cannot know all that generalists know, because I know they know less than the specialists do about the systemic interactions of chemotherapies, cancers, ecologies, personalities, families, and communities. I am left with possibly evaluating the overall positive direction in which protocols for treating cancer are developed. That I can study. I can also look up the statistical success rates of the interventional techniques that are employed at various institutions. But both of these are far removed from the disease, itself. The information consists of distant indicators, at best; and can be misleading, at worst.

What, then, is the nature of my participation in my recovery?  It must be different from the time-honored “study and ‘know’ thine enemy”. My Dad had some clues for me.

My Dad deliberately invoked sensus communis as something august (which is why he invariably used the Latin term) and essential (which is why he repeatedly exhorted me [sometimes with frustrated exasperation, I must admit] to employ it in and throughout my life.) Common sense, as he saw it, depends on a knowledge of self, coupled with a practical command of how the world works. It demands attentiveness. It expects one to predict what to expect, ask pertinent questions, evaluate hypotheses and, gradually, accumulate wisdom. Common sense was, to my Dad, a corollary to “book-learning” and equally important to it. Applying common sense is similarly useful in evaluating when and how to trust others upon whom one increasingly needs to depend in this more complicated and interconnected world.

My reading has informed me about the sophistication and complexity of cancer research. What my reading hasn’t done is educate me in how to be a patient. Nor does my reading help me come to terms with the fact that—like it or not—being a patient is precisely (and exclusively) what my role is. I think I envisioned my role to be more. I think I felt if I could at least absorb enough of the literature, it would objectify my cancer. That would enable me to deny that the place where “the dread disease” found a stronghold was actually within me… in my own body. Common sense admits to two realities. First, that I’ll never know enough about my illness to speak authoritatively. (Although I may get away with it if I use the proper tone of voice at a cocktail party at which there are no medical persons present.) Second, that I can only participate in the cancer-knowledge community as a patient.

To play my role as patient constructively, I need, first, to be highly attentive to my recovery. Then, I need to be entirely willing (perhaps even eager) to accurately share my experiences of side-effects, reactions to therapies, responses to treatments in as alert a manner as possible. I must be compelled that my experience will contribute to the dataset of knowledge on which some future progress might be made. I must take my role seriously, but under no circumstance exaggerate or denigrate it. Such an orientation forcibly changes my attitude for the good. Neither should I second-guess my care-giver’s decisions; nor am I merely a helpless bystander in the face of my ignorance.

Accordingly, what I will report on my next visit to the Cancer Clinic next week is that my chemotherapy has been—thus far—kind to me (though, I trust, not so kind to my cancer. That yet remains to be seen.) Many foods taste metallic. I fear I may smell “chemical”. My normally regular circadian rhythms of bathroom visits for elimination have become unpredictable. Various degrees of diarrhea are common. Feelings (perhaps imaginary, caused by my being worried about it) of neuropathy seem to exist in my toes. Oddly, I experience a sharp disabling pain of 15-45 seconds’ duration, every time I take food or drink into my mouth after not having eaten for a period of half an hour or so. (This side-effect has been reported by one other patient in my Cancer Clinic.) The pain is centered beneath my ear lobes, about the point where my jaw hinges and where, apparently, several salivary glands are located. Other than these entirely manageable effects, I feel physically well. But I am paying attention to anything else I can dutifully and accurately report.

If I cannot be more than a patient, I can be an active, attentive patient. I can take pride in that.

Chet

Related

Mukherhjee’s Book on Amazon