Intermission: Observations from a
(somewhat) Serious Illness and
Hospitalization
Posted May 7th, 2017
By Glenn Ward
Everyone who is admitted to a hospital will have a story unique to them, as mine was unique to me. I’d like to tell you a heroic tale about the triumph of the human spirit in the face of adversity, but I don’t have such a story and I don't see the point in making one up. Instead, I’ll tell you the true story in which a confused man wanders through both an illness and the experience of being a hospital patient, only to wonder afterward just what it was all about.
1. The Night Side of Life
In Illness as Metaphor, Susan Sontag wrote “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
In high school, I knew a fellow student who drew comic strips about things going on in her and her friends’ lives, and once she showed me a comic strip she’d created of me and my best friend, in which we had been admitted against our will to the Lakehead Psychiatric Hospital. The point of her comic strip was that, once we got there, we discovered that we liked being there and decided to spend our lives shooting pool and playing cards in the hospital’s recreation facility without any responsibilities to anyone or anything. It was a bleak judgment, on her part, of my friend's and my present and future lives (although we thought it was apt at the time), but we still appreciated that she’d gone through the effort and I recall that I kept the cartoon and proudly showed it off to everyone I knew (except for my family, of course). After all, this was the early '70s, and many teenagers like myself were reading Ken Kesey and Kurt Vonnegut and Joseph Heller, and we entertained romantic notions of mental illness and especially out-and-out insanity, and the thought of being committed to a mental institution, and actually adapting to such a life and making it work for us, would admit us to a rather exclusive club. Also, as in most families, my family did not escape the consequences of mental health issues and, as my wife's family would say, "the apple doesn't fall far from the tree". Later, I did volunteer work at the LPH, and spent a couple of hours each week taking patients down to the recreation center, and I no longer found the comic strip, or the notion of spending my life in an institution, amusing anymore.
I read Sontag’s book a few years after high school and, as usual, especially in that period of my life, I was confused about just what message I should take away from it. At that time of my life, I naively believed that everything I read should provide a meaningful message that would help mold me into a better, or at least more aware, person. I was working on my undergraduate degree (in Science, go figure) and found that Sontag’s emphasis on the negative power of metaphor seemed to be out of date already (for God’s sake, I thought then, no one other than a lit student even reads the authors she’s quoting). Furthermore, I wasn’t sure just what she was advocating for patients. She seemed to think it a good idea that patients take a more active role and resist the pressure to embrace tired metaphors to describe their illness, but it seemed to me that some metaphors could be helpful to a patient in their resistance to a disease. Furthermore, she seemed to come back over and over again to the notion that metaphors were a bad idea because of their role in making patients somehow feel responsible for their illnesses. Wait a minute, I thought, people are often responsible for their illnesses: why shouldn't they feel that way? And what about the role of taking responsibility for one’s health, especially when it came to nutrition, exercise and preventive screening? Was it wrong to assume that one was responsible for one’s diseases? I realized that I was going to have to expend serious mental effort to understand the message in Sontag’s book, and what Science undergrad had time to do that?
What I did take away from her book was the latent meaning: the idea that having a serious illness was somehow a broadening experience, in spite of my changed view of the idea of being a mental patient. I knew that Sontag had written the essays that became Illness as Metaphor while being treated for cancer, and so I believed that her experience of being seriously ill helped in some way to mold her thoughts and ideas (perhaps she said so herself, but I can't recall after all of these years). Even the fact that she was clearly a good writer and a incisive intellectual seemed to be, to my limited mind, at least partly the result of her experience of being seriously ill (in my self-centered world, I assumed that the first book by her I'd ever read must therefore be the first book she ever wrote). I was in my twenties and I was healthy and I was seeking out the new and exciting, and I knew from many of the other books I’d read, whose authors struggled with various health problems, often throughout their lives, that my life wouldn’t be complete – my intellectual and emotional development wouldn’t be finished – unless I’d visited that other kingdom. As is common among the young, I didn’t know then that development is never done, and that I am developing still, in my 50s, and that I’ll be developing until the end.
Likely, this viewpoint was due to my state of inertia and the fact that little else was happening of any importance in my life (as my wife's family would say, "the grass is always greener where you water it"), but I remember rather wistfully wishing back then, at certain moments anyway, that I could get seriously ill for just a little while and thereby discover what is was like to become a citizen “of that other place”. I wanted to visit the kingdom of the sick, but only visit. Could I just visit for a while without any long-term negative consequences, like a modern day Hobbit returning with all his limbs intact from Mordor? Scars would be okay, scars could be a mark of the experience (especially large surgical scars that people around the swimming pool would quickly notice), but could I have no long-term consequences more serious than scars please? After all, a universe schemed in absurdity should be more than able to give me an illness that left me scarred but otherwise fully recovered.
What serious illness did I have any chance of acquiring? Active tuberculosis, Sontag’s main historical example, and a very common disease among writers and artists until quite recently, was no longer feasible as an illness for a middle class Canadian, (although its mutations into drug resistant forms mean that it’s heading for a comeback, so it may be too early to cross that one off). Even if I could get TB, however, times had changed. Since the late 19th century, as she pointed out, people of the civilized parts of society no longer came from far and wide to visit friends with active tuberculosis, swooning over how beautiful and peaceful they looked in their translucent skin and how fragile they looked while they coughed discretely into embroidered handkerchiefs, saying profound things to mark them as blessed repositories of insight and deeper comprehension and acceptance of their premature fate. In the 20th century, people in the developed world with untreated active tuberculosis had become the new lepers, dumped unceremoniously into the same category as those stricken “others” living in filthy poverty in the poorest countries on the planet. While people once associated TB with creative, sensitive people such as Keats and Kafka, today the most well known sufferers of the past may be the assassin Gavrilo Princip or the dentist-turned-gunfighter Doc Holliday, and this leveling of lonely sufferers of TB now leaves them with the choice of seeking treatment and be cured. Even the dictates of absurdity had their limits, and so TB was off the table.
That left cancer, Sontag's other main example, as my most preferred possibility. Yes, there was always cancer, the crowned glory of diseases. I didn’t want to have a terminal form of cancer, of course, but having a serious but potentially treatable kind of cancer would mark me forever as having ventured into that forbidden kingdom and returned intact. If someone asked me to tell them about myself, I would have a response that would leave them respecting me as someone who was clearly superior to them in insight and intellect, just as Sontag's experiences made her superior to this poor student.
The main obstacle to my youthful aspirations was that I was born into a working class Canadian family in the 1950s and grew up healthy, which was not surprising for someone born in the early days of that incredible period of working class prosperity that ended by the mid-70s. I was born with a club-foot that required some corrective surgery, but that wasn’t a real illness. In fact, before the surgery, it made me walk with one heel never actually touching the ground, giving me a certain bird-like gait when I walked bare-footed, so I would classify it as more of an example of the power of absurdity granted me by my universe, more of a joke than an illness, certainly unworthy of its own kingdom. Also, I was hospitalized due to a case of osteomyelitis when I was six but I was too young to understand the seriousness of it at the time. Other than those two examples, I almost reached my seventh decade before I acquired any illness that would present to me new experiences and the scars of a surviving visitor to the other kingdom.
Later, I taught undergraduates who were studying to become members of various health professions, and a new side to my longing to experience the other place emerged. I felt that, by teaching about illness and disease, I was a bit of a fraud, like a life-long bachelor trying to pass as an expert on marriage, or a childless person trying to pass as an expert on child-rearing. It’s not that bachelors can’t have a basic understanding of married life, or a childless person a basic understanding of child-rearing, or a healthy person a basic understanding of illness. But can they have more than a basic understanding, an understanding that equaled that of those who were married, who did have children, who had suffered from a serious illness? If so, then someone's personal experiences wouldn't matter for their development and, as someone who'd spent much of their life trying to experience new things as if they were building blocks for development, I couldn't accept that. But why would having an illness be valuable in the development of someone who taught, among other things, the scientific understanding of illness? One answer, perhaps, goes back to the quote attributed to Stalin (paraphrased in this case): “a single person with a disease is a tragedy: a million people with a disease is a statistic”.
2. Statistics and the Individual
Statistics. Always statistics. As a scientist, I treated statistics as the spectacles through which I could see the reality of illness, or at least one version of that reality, so my outlook was based upon the statistical analysis of large collectives of cases while individual cases, which rarely fit the statistical norm, were deemed unimportant at best, and misleading at worst, for understanding the true nature of illness (as my wife's family would say, "as useless as tits on a bull" ). I would discuss the relative strengths of the “population approach” versus the “biomedical approach” with my students and, at least in class, I made sure to stack the deck in favour of using statistics to study populations as the best way to really understand illness. My training banished the individual as an subject of study. Even today, when I am looking for information on a health issue, I tend to skip the case studies and look to the statistics-based research on large groups of subjects.
My students, on the other hand, because of their basic decency, often focused upon the experience of relatives or close friends who’d died or been very sick, and many of my students had themselves already suffered from major illnesses such as childhood cancer or kidney disease or type I diabetes, etc. A small number were recipients of transplanted organs, and at least one of my students died of a sudden-onset illness within weeks of graduating. As a result, it took all of my meager powers of persuasion to convince my students to ignore those individuals in favour of groups and populations whose intricacies can only be understood through statistics. As usual in my life as an instructor, I feel that I failed much of the time. Perhaps I was right to fail. I always thought that the best teachers were the ones with the ability to learn from their students, and so perhaps they were right, and I was the one who didn't understanding the best way, or at least an important way, to understand illness. My students understood illness at the level of human empathy and human kindness, a level that I'd forsworn as a tool for true understanding.
Yet, I still believed, at some level, that I would benefit from the experience of being seriously ill, of being an ill individual. Was this a form of survivor's guilt? After all, when you know young people who are kind and generous and smart and capable, as my students definitely were, you feel somewhat guilty when you see the fates dealing them an unfair hand when you were never required to suffer like they are required to suffer. Did I feel that being an ill individual would then qualify me to be guilt-free?
The word subjects is an especially appropriate term to describe individual cases in the study of disease, because of the grammatically dual nature of the term. In grammar, the subject can be a noun signifying a being that usually does something, feels something, wishes something, and so is somehow in control, at least as long as the noun is the subject and not the object. As a verb, though, subject indicates the act of exerting power or influence over one’s self or others. In other words, it can represent both the act of control and the act of being under control, and this latter meaning is often the meaning used in science; a meaning that many fear can dehumanize the subjects of that prodigious body of research into health and illness.
In the late 1990s, the British Medical Journal published a debate about the use of the term research subjects versus research participants, and many good-intentioned people advocated for the replacement of the word subject with the word participants in published scientific research. This, they believed, would hasten a new era in which research would be a collaborative effort between all the participants. According to these people, calling research subjects by a new name would lead the charge to the new era. However, in my experience, this name change hasn't led to a new respect for the views of research subjects (as my wife’s family would say, “it's just lipstick on a pig”). It doesn’t have to be this way, of course, and some researchers have always made an emotional investment in their subjects. However, there is always a danger of being too emotionally involved, as that could mark a scientist as having gone native, followed by a limited future in research in which one’s colleagues will shake their heads sadly and say “he had a great career ahead of him but he just got too involved in his subjects”.
Anyway, I'll get my meandering creek of a mind back to the point of all of this (as my wife's family would say, "sounds like someone left the gate open again"). Perhaps my earlier curiosity about the experience of being seriously ill, and my background in the statistical approach to understanding health and illness, combined and were integrated into who I was when I entered the hospital. Rather than experiencing a core shift in my outlook on life, or my outlook on anything really, I found myself detached, like Camus’ Meursault, seeking out and studying my sensations more than actually feeling them. I became my own subject to be studied, so to speak. While I was worried a bit when I first entered the hospital (and who isn’t?), by the end of the first day I felt more and more assured that the kind doctors and nurses would do their best, and that nothing terrible was going to happen to me, and I became surprisingly (to me at least) passive about everything. I'm not sure if anyone who has taken on the role of hospital patient has carried more baggage into the role than I have.
So I became a subject in many ways. Subject to the decisions of others, content to leave my fate in the hands of the ones who seemed to be in charge. Subject to my own interpretations of what I was feeling and thinking. Was my self-examination of what I was experiencing making the act of experiencing less profound? I’d been a scientist long enough to expect Observer Effects and Expectancy Effects as I reviewed my feelings, so I confess to remaining unsure of exactly what the experience of being seriously ill and being hospitalized should entail. In other words, the notion of my illness as a formative experience was vastly overblown: as a growth experience, my illness left a lot to be desired. Perhaps it was due to the nature of my illness: after all, it's hard to find intellectual and emotional growth in a story about an intestinal abscess leaking fecal bacteria into one's peritoneum (I haven't done a web search on this, but I doubt that many major literary or artistic works center around such a problem). Instead of a growth in my insight and intellect, I came out of the experience with a brain that didn’t seem nearly as sharp and insightful as it was previously. I don't believe that I grew at all because of the experience and, after a few weeks, I found myself starting to forget that I’d even been ill. As my wife’s family would say, “life is simpler if you plow around the stump”.
Of course, I didn't realize at the time that this was just the first chapter in the story of my illness, and that the real development would occur in the coming chapters, and it would be a development that rendered everything before it simply a poor imitation of a life-changing event. As my wife's family would say, "be careful what you wish for".