Dobrynya Nikitich, a great Russian dragonslayer. Close-up of the painting Bogatyrs (1898) by Viktor Vasnetsov.
When I started drafting this post, I included a long list of my recent encounters with the medical and health insurance bureaucracies. I’ve deleted all those specifics—you don’t need them because you have a list of your own. Everyone does because virtually everyone lives embedded in bureaucracy. There are very few walks of life where a person doesn’t have to deal with red tape and forms on a more or less constant basis.
Just stop and think how many forms you have filled out in the past year, and how much of your life that has taken up. Then add on the time you’ve spent on hold or dealing with some low-level “customer service” rep on the phone or instant messaging, and the sad truth of these many wasted hours comes clear.
As a person with a chronic illness that is likely to shorten my expected lifespan, I have always chafed at this set of circumstances. While I understand the need for much of it—the driver’s licenses, the voter registration cards, the building permits, the medical histories—I have always grown very impatient with needless bureaucratic obstacles.
But today while I was thinking about this issue, I happened upon some good news for me: Life expectancy for those with Type 1 diabetes has improved greatly in the past couple of decades and for those of us born between 1965 and 1980 is only about 4 years shorter than those in the general population. When I was diagnosed in 1972, it was a whopping 15 or 20 years lower than average. Maybe I am no longer justified in my impatience.
It would be fascinating if someone would do a study about what diabetics do with those extra years we now get to live. I suspect that a goodly portion of it will be spent waiting in doctor’s offices, hassling with health insurance providers and third-party billing profiteers, shuttling medical records from one doc to another, and filling out paperwork related to treatments and benefits.
What I also fear—for all of us caught up in this increasingly bureaucratized world—is that we will turn more and more to fantasy as the antidote.
Because even the word “bureaucracy” is really boring, right? Who wants to even discuss the issue when every one of us has some version of it in his or her own life. Who needs more?
I have a theory that the rise of genre fiction (and movies and gaming and so on and on) has to do with the concomitant rise of bureaucracy all around us, even through and in us. We are living in ways that it’s truly unacceptable to live—inhuman ways that denigrate us. Not that we are living in squalor—perhaps the trappings of comfort and leisure (the TVs, the cars, the iPads, the flights to Paris) allow those of us in the middle class to ignore these cold wastes of time. After all, desperate living and working conditions, hunger and illiteracy, dysentery and violent repression all continue the world over, and are worse than mere bureaucracy.
Perhaps it is fitting, then, that we don’t answer the bureaucratic inhumanity with the rally or the march or the strike. These methods seem to have lost their effectiveness to a great extent anyway—people march and rally and strike, and the powers that be wait them out. Our “first-world” problems don’t seem to deserve that kind of outcry. When it’s attempted—as in Occupy Wall Street, which I greatly respected as an attempt to bring attention to these and related economic issues—the result is moderate and the fun-poking is huge. The reaction of much of the bureaucratized population to the Occupy movement was “Get a job.” No matter how unjust the implications, that tone has been common.
For the middle class, then, the main protest activity seems to be a retreat into fantasy. Fantasy seems to be something that almost everyone can get behind, no matter one’s political party, no matter one’s income level, no matter one’s level of education. Whether it’s interstellar space exploration or misty dragon-filled castles, whether it’s pretend wars where everyone can be a paintball hero or perfumed spas staffed by buff young men who will oil and rub one’s muscles, whether it’s in book or movie or video game or cosplay form—almost everyone seems more interested in an alternate world than the one we actually live in.
Never in my life have I seen a more prescient film than Brazil. It’s a film I will admit that I didn’t enjoy watching—it’s an ugly film and hard to follow. But the world that it presents—where the only escape from the bureaucracy is in a fantasy where the main character takes on armor and the wings of an angel—seems to me more and more like the world I live in now.
And I think that Brazil anticipates the way in which more and more extreme reliance on bureaucratic thinking about fitting in, strange self-fulfilling forms of meaningless success, pursuit of superficial beauty at any price—these things all lead us not to rethink our own world and its possibilities, but to fall back on hope in the magical.
The real horses are starving due to drought. It’s okay, though, because we can pretend that Dobrynya Nikitich and other dragonslayers will ride in on their beautiful steeds and save the day.
This strategy is fine with the powers that be, with those that impose further and further bureaucratic strictures. It is a great opiate. It lets everyone off the hook. It’s the religion without the requisite belief or morality. Win-win, I guess.
I’m sure that if I can only convince myself I have some angel wings somewhere, those waits in doctors’ offices and on hold won’t bug me so much. Until, of course, the end of the fantasy.
This month marks the 40th anniversary of my diagnosis with Type 1 diabetes. Other than my trumpeting this fact to a few people (and here on the blog), there will be no fanfare. I find it more seemly that way, even though that doesn’t mean I don’t want to talk about it. And it’s not that diabetes survivors are never honored—the Joslin Clinic in Boston has a program to give certificates at the 25-year mark and medals at the 50-year mark, and last year they celebrated a fellow who had achieved 85 years with diabetes. It’s just that most people who become medalists have to nominate themselves.
Even the term “diabetes survivor” seems funny. We don’t think of it as a terminal disease, even though diabetes kills more than breast cancer and AIDS combined. Most people, in fact, have a lot of misconceptions about diabetes, especially Type 1. I’ve already written about that, years ago, in Sweet Invisible Body. The title of that book comes from the very fact that you can live with diabetes and pass for (and even be) healthy most of the time. Many people never see the disease. I even hesitate to type the word “disease” instead of “condition.”
Some years ago, I faced this issue in a different way. I was doing scholarly work on three writers with serious early-age chronic illness—Katherine Anne Porter (TB), Carson McCullers (rheumatic fever and early strokes), and Flannery O’Connor (lupus). I encountered two distinctly different sets of academic communities that were relevant to my work—one was Medical Humanities (and its sub-set Literature and Medicine, perhaps best represented by the journal of that name) and the other was Disability Studies.
Those titles speak volumes. The Disability Studies community was formed mainly by those with disabilities who desired to be recognized in all their complexity and diversity. The Medical Humanities, on the other hand, focused more on physicians, nurses, and their traumatic encounters with patients’ illnesses or how the humanities might teach humanistic values to numbers-oriented medical personnel. The trouble for me was that I didn’t conceive of myself as disabled, and I wasn’t a health-care provider. I wanted a community of those involved in “Illness Studies” or some such. In spite of the fact that people have been writing literary work about illness for as long as literature has existed, there was no such thing.
Although I have kept an interest in both fields, it’s no surprise that the work in Disability Studies was a lot more directly touching to me. I was closer myself to being disabled than to being a physician, and I was tied to the “patient’s” perspective. So for a number of years I participated in online Disability Studies discussion groups. Of course, these groups did not base membership on whether or not an individual was disabled, but there were sometimes discussions of what counts as disabled. I recall a generous openness in terms of various levels of ability, both physical and mental, and a sense that disability of some sort or another is in most people’s future if not their present. I remember that one person commented to the effect that those who exclude themselves completely from the category are disabled by their own ignorance about it.
In a book called The Wounded Storyteller: Body, Illness, and Ethics (1997), Arthur Frank pointed out that this same logic holds in terms of illness as well as disability. The end of the twentieth century saw an enormous rise in chronic or treatable-but-never-cured illnesses. Diabetes is like this, and cancer has become more this way as treatments have improved. And now, through genetic testing, we even have the ability to diagnose illnesses that aren’t even manifest. Invisible illness has shaded over into virtual or nearly nonexistent illness.
This is why the distinction made by my recent commenter on the “Just Crazy, Not Sexy” post is important. She noted that, though I objected to cancer guru Kris Carr’s “claims to have cured an incurable cancer with self-help and alternative therapies,” Carr “is well aware that she has cancer still” but “believes that her diet is keeping the cancer inactive.”
Remission is indeed distinct from cure, and I should have been more precise, even though I think that the overall impression given by Kris Carr is that of illness banished pretty much entirely. What’s fascinating about Carr is the extent to which it is convenient for her to have cancer with no symptoms and no effects of her illness. In other words, she does indeed have knowledge that she has an underlying condition that could one day affect her health, but right now it doesn’t.
This goes to show that illness does have something to offer: part of the mythology of illness is that it can make one wiser (if it does not make one bitter and therefore evil). Carr claims the wisdom, however, without the pain and suffering that supposedly lead to it. In fact, her claims cut in opposite directions: Carr has the imprimatur of serious illness, but she also has the success of triumphing over that illness and restoring her own health. It’s a powerful combination that attracts many followers even though it is full of contradictions. There aren’t too many people who can stay in that position for long—a couple of years ago I wrote an essay (next to last in this e-book on The Patient) about the “Dying Professor” (Randy Pausch) who stormed the world with his optimistic reaction to a diagnosis of pancreatic cancer, only to succumb the following year. People mostly quit paying attention to him after he was truly ill. (Or they respected his privacy, if you will. Actual illness is ugly and therefore largely hidden.)
I think one reason why someone like Kris Carr has such appeal is that many people still want to think of illness as a temporary situation rather than a permanent situation or marker of identity. In spite of the fact that Frank identified us as living in a “remission society” more than twenty years ago, where illness is almost the norm, there has been no rise in “Illness Studies” and little formalizing of what it means to live as a subject of medical intervention and awareness of the body’s limits for years on end. For many people illness still seems to be short-term—they catch a cold or get a bacterial infection and are definitely ill, but soon enough their good health is restored. That’s the model of our medical world—illness properly treated ending in cure.
In 1999, when I published Sweet Invisible Body, the Guardian published a large (and very negative) article about “malady memoirs” that the author characterized as “malingering” and trivial besides. The author didn’t mention my book, but it was one of about twenty whose covers were reproduced above the article. As an example, the article’s author wrote a satire about an in-grown toenail. That, I thought, is someone who really thinks everything can be cured. That is a healthy person, someone in whose eyes illness is simply an uninteresting transient weakness or something to be hidden. Such reviewers are common, and they judge illness memoirs with a broad brush rather than making distinctions between good writing and bad.
Even many who are ill or who understand the value of examining such experiences prefer the stiff-upper-lip mentality or the “it’s a blessing in disguise” mentality more than something more complex. One of the main reasons they do, I believe, is because they are rewarded for it. It is not the depressed or symptomatic sick person who gets on national TV. Randy Pausch—because of his cheerfulness not because of his illness—gained many privileges, such as visiting with his idol Sting and tossing a football with the Pittsburgh Steelers. Kris Carr—because of her insistence on a can-do attitude not because of her asymptomatic illness—has become a self-help brand-name. The Make-a-Wish thing seems appropriate to me for ailing children, but there is a strong push for a trip to fantasy-land for adults as well, as long as they “deserve” it by being upbeat.
One thing that it’s important to note is that plenty of avowed healthy self-help gurus give us the same basic message that Kris Carr does, only they don’t have the added value of supposedly having overcome cancer (even if in the fine print it’s only “remission”). The cancer’s remission is added “evidence” of the effectiveness of her self-help recommendations.
Why does it matter to me that Kris Carr isn’t symptomatic, that she hasn’t actually experienced much sickness over the years she’s been building her cancer guru empire?
The status of someone in a particular identity category is something we grapple with every day in the field of creative writing. Male writers write women characters, and black writers write white characters, and vice versa. Sometimes fiction writers even use a first-person narrative voice for a character completely unlike him- or herself. We reserve and defend the right to do so. That is what imagination is for, and much good writing takes this kind of imaginative habitation of another life. The best of such efforts, of course, produce great literature suffused with empathy and near clairvoyance.
Yet I believe it does take a sense of responsibility to inhabit a different kind of persona—it is not something to be done in a cavalier fashion. That is why even fiction writers do a lot of research. That is why it’s a perfectly legitimate criticism of certain macho male writers that their female characters are flat and inaccurate. That is why I was so ecstatic and relieved a couple of years ago when one of my students (a young white twenty-first-century male) wrote an honors thesis that was a novel set in the 1930s with an African-American main character, and the African-American historian on his committee said, “I don’t know how you did it, but you really nailed it.” (He did it, I note, by a deep desire to understand, not by a desire to use, usurp, or pretend.)
In memoir writing, this issue is perhaps just as complex and vexed though in different ways. In spite of many naysayers like the Guardian reviewer, memoirs about chronic illness continue to proliferate. I’ve read a lot of them, and sometimes I even sympathize with the Guardian reviewer because a lot of them are poorly written with little insight. In fact, even supposedly literary ones tend to be characterized by a kind of rah-rah boosterism or tried-and-true emotional answers. James Frey’s infamous A Million Little Pieces, which was, after all, essentially a story of overcoming the illness of addiction, turned out to be a false memoir. Some of us suspected it was before the scandal hit—because his story of curing himself of alcoholism seemed way too easy.
As a person who writes fiction as well as nonfiction, I think frequently about identity and identity categories. Certainly, the fact that “it really happened” is never enough to justify a piece of writing. Many in the world of memoir-writing, including me, also support the use of the imagination in writing them. But it’s all too easy for us to ridicule the many slavish readers who thought that Frey offered them hope and a method for overcoming their ills and then became naively furious when he turned out to be a fraud. Yes, they were naïve. Yes, there is often an unfortunate confusion between self-help books and memoirs. But he’s the one who was a fraud. Both fiction and nonfiction should be more truthful than the bull he sold.
So, what is the distinction between imagination and fraud? The two are often closely tied, and many terrific writers are known as frequent fabulists in daily life as well as on the page.
What, in fact, constitutes a truly inspirational story? Do such stories always need to end in triumph?
As a person with a long-lived illness who encounters frequent and ever-increasing symptoms, but who manages to hold death and more severe disabilities at bay for now, I have to answer in a certain way. I have to say that for me Samuel Beckett’s narrator in The Unnameable, sums it up well: “I can’t go on. I’ll go on.” This is the balance of emotional honesty, and it is based on genuine experience, not what sells. It also, it seems to me, reflects a deeper optimism than “I’ll go on” by itself would. I also have to say that imagination is distinct from fraud, and that there is such a thing as emotional honesty in whatever genre.
It’s the difference between a discreet poisoning and a mere threat, between a stomach ache and gold-bricking. It’s the difference between what is there that we can’t see and what isn’t there at all, at least not yet. It is a tricky little devil to put a finger on.
A few weeks ago I missed my plane to Vermont. I arrived at the airport an hour and a half before my flight, but it took me 45 minutes to check my bag (though I already had a boarding pass) and another 45 at security. In spite of the fact that I told the security folks that I was going to miss my flight, they insisted on taking me aside and testing my insulin pump for explosive residue. I ended up racing down the terminal in a pair of flimsy sandals definitely not designed for running, and I missed the flight anyway.
I’ve had some serious foot pain since, and I found out a couple of weeks ago that this stems from an inflammation in my foot caused by the beginning stages of arthritis exacerbated by my dash down the terminal. The doc showed me the X-rays, and the joints in my middle toe of my right foot no longer line up. I am in the process of buying a lot of new well-padded shoes, and I’ll probably have to accommodate this condition for the rest of my life.
Bummer. I was pretty annoyed with the airline and TSA for putting me in this predicament, but then I realized that at least the pain they caused me got me to the podiatrist before I ignored this condition any further.
I thought back to last fall when I was teaching my 100-student course one night a week and would end up being on my feet for a good, solid four or more hours every Thursday evening, usually after an already long day of crisscrossing campus to other classes and going up and down four flights of bare concrete stairs to my office. I would often be in terrific pain when I got home, but didn’t pay much attention. Too much else to think about.
I’m grateful for another even more important aspect of this pain in my feet, and that is… well, that I feel pain. You see, diabetics often lose feeling in their feet because of nerve damage caused by the disease. The good news is that I don’t have neuropathy; I can still feel my feet and pain in my feet. Otherwise, I might develop a truly horrible condition common to diabetics. (And let me warn you, don’t check out the links unless you have a strong stomach and won’t hate me for inflicting this on you.) This condition, Charcot joint, might start with small orthopedic changes like the ones I have, but many diabetics end up with severely degraded and fragmented joints and even wounds from the rubbing of their malformed bones in their shoes. They may not feel anything happening in their feet until it is too late to do much about it. This is one of the causes of diabetes-related foot amputations. I have lived almost my entire life with some dread of this kind of thing.
So, while I’m certainly not happy to have this arthritis diagnosis, I am also grateful to my body for its functional nerves, and I’m glad I found out in time to stabilize my feet and treat them better. This is just one example of how we should pay attention to our pain rather than dismissing or ignoring it. Whether emotional or physical, it is often trying to tell us something we need very much to know.