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How Can a Poor Man Stand Such Times and Live?

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I’m in a mood today where I am feeling angry about the rich getting richer. I’m not poor, so I can stand it and live on. But it makes me wonder why it is that some wealthy people (like Bruce Springsteen) and some middle-class people (like me) feel for the poor and wish for more evening out of income and opportunities, whereas others just get greedy.

I encounter this profiteering greed mostly through the arena of healthcare. I don’t have high-brow tastes—I don’t spend a lot of money on cars, or clothes, or jewelry, or furs (god forbid), or expensive vacations, or fancy wine, or recreational drugs, or makeovers, or the many other vanities that I’m not even aware of. I spend money on my health. I’ve been doing a lot of that especially over the past five years, as I’ve encountered several issues with my health.

To me, most of the time, it doesn’t seem as though it’s the physicians who are greedy. They may make a better living than I do, but they mostly seem still fundamentally upper middle-class in spite of (or because of) their BMWs in the parking lot.

But the corporate entities with which I deal make me crazy. Recent examples:

* Today I was told by Florida Hospital that I have to pre-pay more than $400 for a colonoscopy scheduled for next week. (It’s my first ever, and is enough to dread by itself.) My insurer told me that, no, a routine preventive procedure is covered at 100%. We (together) called the hospital back and were told that they charge for a diagnostic rather than routine procedure, even though the latter is what the doctor ordered. “Just in case,” the drone said, “they find something wrong.” So they are charging in advance for a service that I may or may not need and that the doctor didn’t order. How can that be?

Ultimately, of course, they will refund my money. But it will be in their coffers for six to eight weeks or more.

* I mentioned on Monday that my insulin pump company holds me hostage. Every time a pump goes bad, they send me an emergency loaner. But if I don’t buy my next permanent pump from them, they will charge me $3600 for 90 days’ use of the loaner. The pump itself is barely worth that much, as they send old, reconditioned ones.

They also constantly try to force me to sign up for automatic supplies deliveries and billing. But diabetes is not a condition where you take one pill every day for a stable dosage. No, use of insulin varies, and so use of supplies varies. I don’t want to get a new order until I need one. The customer service has become so problematic, however, that it now often takes more than a month between when I order supplies and when they arrive. Several times I have run completely out of supplies and had to call for an emergency overnight order. How can it be that I can get a book or a pair of shoes or some obscure piece of computer gear in two days, but it takes a month or more for vital, life-sustaining medical supplies?

* A few years ago, I was told by a dentist at Greenberg Dental that I needed a crown and perhaps a root canal. Both of these are procedures that my dental insurance was supposed to cover completely. But suddenly Greenberg told me that only their general dentists were in the insurance plan, whereas that those who do the root canals were not. So, I was forced to either pay for the root canal myself or find another dentist who would do it and then send me back to Greenberg for the crown, leaving several days in between when I’d have to walk around with a hole in my tooth. I did the latter, and it was then that Greenberg started adding on charges to the crown. First, they said it was a lab charge, but when I called my insurance, I was told no such charge was allowed. It took several days for Greenberg to back down. “We bill them this way all the time,” I was told. “People always pay it.” Not me. Eventually they took the false charge off the bill, but then they added another. This went back and forth while I had a hole in my tooth. Finally, I settled on a $30 overcharge for an item that had never been listed on any of the earlier estimates. It became clear to me that there was collusion between the health insurance company and Greenberg.

These stories are boring. Sorry. They accumulate and accumulate in my life. Even though they are boring, they make me angrier and angrier every time I encounter such practices.

Our health care system is just fucked up, plain and simple.

Even if you believe that profit is the best incentive for good medical care (I don’t but even if you do), the problem is that you can never talk to anyone who makes decisions. You get customer service representatives who spout platitudes, who tell you “that’s our policy” or “that’s just the way it is.” There is never anything they can do to change it. And there is never any use appealing to a sense of right and wrong or a sense of decency.

These people are paid to insulate the people at the top who are reaping all the financial benefit of these predatory and unethical practices. Every time I think of them, I think of Michael Moore. Michael Moore has his flaws, but, by god, he was right to go for the executives in Roger and Me and in Sicko. But notice that he could get at far fewer of them by the time of Sicko. (Roger and Me was released in 1989 and Sicko in 2007.) The wealthy protect themselves from the rest of us so effectively nowadays that there’s seemingly little we can ever do to affect their unconscionable greed.

And healthcare is just not like other, non-vital services and goods. Shopping is impossible or at least very inconvenient, if not dangerous.

I will encourage my gastroenterologist to establish a relationship with a testing center that has more responsible and fair billing practices, and to move his tests away from Florida Hospital. I will raise hell on the phone with the corporate shills at the front line of “customer service” just on the off-chance that, like politicians’ offices, they keep track of “customer reactions.”

It doesn’t seem like enough. I languish today in my inability to change the practices of an industry that affects my life all too much.

You can watch Sicko in its entirety here if you haven’t seen it already: http://topdocumentaryfilms.com/sicko/.

But at least watch the trailer to remind yourself that things have not improved since Moore made Sicko. In fact, the profiteering continues to rise, and the healthcare industry continues to use unethical practices that make it look less profitable than it is.

How do people get so corrupt? Why do our laws no longer protect us, the people, but only the powers that be? We live in dangerous, dangerous times.

The End of Illness: A Review

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We would all like to live to a vibrant old age, but this book's promises are overblown and ignore the inaccessibility of health care for too many.

I read this book with some eagerness, as I’m always glad to hear a whole-systems approach to medicine. However, I ended up being disappointed. I am sure that Dr. David B. Agus is a highly intelligent man who has made strides in his field of oncology, but I am unimpressed with the job that his ghostwriter did. The End of Illness relies very heavily on standard health advice—get plenty of sleep and exercise, eat whole foods, try to be less sedentary, etc. And even what’s offered as “new”—take baby aspirin and a statin drug after age 40, throw out your vitamin supplements, and wear comfortable shoes—are really not all that new. If you hadn’t heard about these debates and suggestions already, then you weren’t paying much attention.

That doesn’t mean that there aren’t good things about this book. I celebrate any physician who is trying to focus on preventive medicine and who believes in empowering people with information about their health. He is absolutely right that we need to do things differently in health care, and even in taking care of ourselves. He has some good ideas about what some of those things are. I do think his intentions are a step in the right direction. However, his orientation toward the wealthy and the celebrity aspects of his work lead him astray a bit. (Both Lance Armstrong and Al Gore endorse his book on the back cover, and Agus mentions several other well known people visiting him.)

This book is flawed in a few important ways and raises for me some questions that are relevant to our health care system in a way that Agus probably doesn’t intend. It reminded me of my constant (though usually low-level) mistrust because our medical system is oriented toward profit.

First of all, the entire first part of the book felt a lot like an infomercial for genetic testing. Dr. Agus admits that he is part owner of a genetic testing corporation, which he names, but that still didn’t ease my sense of having paid for a book that was a big promotion for his profit-making corporation. It was almost as if they sat around the corporate board room and asked, “How can we get more customers? Oh, let’s put out a book that is really an ad. We’ll have profits from the book AND more genetic testing customers.” It may also be that Navigenics is using the book to try to change the public attitude toward genetic testing, since it has recently been caught up in regulatory wrangles.

While Agus’s company is not a “bottom-feeder” or “scammer” corporation, as the regulatory article notes, it also doesn’t get the greatest reviews online. Even Wired, which generally supports the industry and introduced Navigenics as more user-friendly than others, noted that it is overpriced compared with similar companies. And most of us do not have health insurance that will help pay for it, nor do we have doctors that can interpret the information obtained. Dr. Agus’s fantasy of health care that is tailored to the individual based on genetic screening is both futuristic and out of the reach of most people financially (though obviously not of the likes of Armstrong or Gore).

Then, in his chapter on tossing out vitamin supplements, Agus notes two things: a) correlation is not the same as causation and b) animal and petri-dish studies don’t always apply to the whole human person. I couldn’t be happier for someone to say this. I have always had the sense that vitamin and supplement obsessions are inappropriate in this well-fed nation, just the same way the insistence on drinking bottled water is ridiculous and wasteful, when in the U.S. we have some of the safest public water in history.

Yet, as the book progresses and Agus turns to his causes, he uses the same kind of questionable study results as though correlation IS causation and as though animal and lab studies CAN be generalized to people. There are many examples, but, for instance, on p. 255, he uses a study of rats to claim that people need downtime. Now, I believe in downtime, but this study doesn’t prove its need for humans. He also does this with the issue of “positive” people living longer or surviving cancer longer—a chicken and egg question if ever there was one. And he notes in cavalier fashion that “study after study” shows that happier people live longer. Even if the research results were that clear, which they are not, that does not mean that the happiness causes people to live longer. This is a classic confusion of correlation and causation, which he criticized before. Maybe I’m missing something, and I certainly don’t have the same level of expertise at analyzing medical studies that Agus has. But, something is inconsistent here.

Lastly, Agus claims that we need to become personally responsible for our health, and I am certainly a person who has years of experience doing so. But taking good care of oneself and advocating for the right tests, medications, and other treatments can only go so far, and Agus hedges about the need for universal health care. While he does cite the brutal statistics involving our health care system (p. 296-297), he also states that “we need health-care reform at a much more basic and fundamental level before we can get to the financial end of it” (p. 279).

I think he has it backwards. In fact, Agus calls on all of us to gather our own health data and share it fearlessly and openly so that large-scale analysis of such data can be conducted. That is a great idea, but it is not likely to happen as long as the health insurance industry is able to disenfranchise any of us at a moment’s notice and as long as people are discriminated against because of their health standing, and, in fact, can’t get independent health insurance with certain pre-existing conditions. Agus notes that many corporate fitness programs do collect data anonymously and preserve individuals’ privacy. Would that I trusted that would always continue. But I know full well that those policies can change with the political climate. As long as profit is the motive for the health insurance industry, then some individuals will always have the potential to have their health information held against them. To assert otherwise is unrealistic.

In fact, Agus’s claim that if you do what he suggests, you can “live robustly to a ripe old age of one hundred or more” and “die peacefully in your sleep after your last dance that evening” (p. 2) seems way overblown. And this brings me to my Joyous Crybaby theme of authenticity. Why do people feel such a need to exaggerate their claims so, especially in the realm of health? Because I have a hard time believing that Agus really believes the exaggerated nature of his claims, my lack of trust is heightened. What, I wonder, does he really have in mind here? Do his goals really have to do with helping me live longer and better? Or is he more interested in promoting his genetic testing business and pushing for the establishment of open medical records for research purposes?

I know that there are some people who don’t feel those last two purposes would in any way conflict with a passionate interest in my own personal health. The right-wing argument about the “superiority” of the U.S. health care system is based on there being no conflict between the financial gain of physicians and the health insurance, medical device, and pharmaceutical industries, on the one hand, and consumer-patients on the other.

But this is demonstrably false, as the following relatively brief list of links demonstrates:

This rich list of studies and reports includes several that show physician denial about their own lack of objectivity in the face of profit motives.

Here is a terrific article about the corruption of medical research by the profit motive.

The government has had to step in repeatedly because of the failure of professional self-regulation.

Even within the field of medicine, the potential for corruption is acknowledged.

Even since regulations have been tightened regarding conflicts of interest, physicians are not accurate in their self-reporting.

And, even though individual research studies are now required to reveal any potential conflicts, the meta-analyses that most physicians rely on to stay current in their fields are not required to do so and often do not reveal such conflicts.

Questionable and patient-threatening research is reported in numerous sub-fields:

Diabetes drugs
AIDS drugs
Cancer
Cardiovascular health
Renal disease
and in the obtaining and use of body parts for research.

And in terms of the daily practice of medicine, even as far back as 1997, Harvard researchers reported conflicts between the profit motives of health insurers and patient care. These conflicts have only increased in the past 15 years, and they are likely much worse in HMOs.

If you want to talk about research that is definitive, the research about the lack of objectivity of privately funded researchers and physicians is what is crystal clear, far more so than the research about cheerfulness supposedly making you healthier. The evidence has been so undeniable and the results of these conflicts of interest so deadly that even anti-government right-wingers have not stood in the way of increased regulation and prosecutions by the Justice Department. Yet, in spite of decades of social science research that demonstrates profit is not the main motivator for creative and complex problem-solving (as summarized by Daniel Pink and mentioned on this blog before), our medical industry is still largely dominated by the assumption that wealth should be its main goal and that innovation will cease without scientists and physicians having the prospect of great riches as their primary reward.

I think that assumption is hogwash. I myself believe that most scientists and physicians go into their fields with a genuine desire to help humanity. And I believe that the industry emphasis on profits turns them into hollow and unhappy practitioners of half-science in the laboratory and half-medicine in the hospital. Certainly, if they can’t survive financially while practicing medicine compassionately, the financial reward grows more and more important. It is all, perhaps, that they are left with, and a sour reward it must be.

This is why I greet something like Dr. Agus’s book with such mixed feelings. He wants to help people—I truly believe that—but he ducks out on the hard issue of trust in a profit-oriented system. And, even though I will take a suggestion or two of his such as walking around while I’m talking on the phone, I can’t trust him and I don’t think this book will change people’s, and certainly not the nation’s, health outcomes.

A shorter version of this review was originally published on Goodreads.

What Comes After Valentine’s Day

Diego Velázquez’s portrait of Juan de Pareja, c. 1650, in the collection of the Metropolitan Museum of Art, New York.

“Are you ready to make plans for New York now?” Bruce laughs a little hopelessly as he asks.

I feel the panic rise in my throat like a hairball, even though we are lying in bed. He thinks that a trip is in order for me to meet with my new editor at Oxford and with my agent, who has been unwilling to give me the time of day. He thinks my new relationship with Oxford will make her take notice. And last year we missed making our usual annual pilgrimage to see our dear friends there because I’d had a brain hemorrhage.

Bruce loves the city, loves clearing away all travel challenges with his efficient handling, loves touring galleries, sitting in cafes, and walking the bustling streets, hour upon hour. He loves the atmosphere of culture and excitement that we just don’t have in the city where we live, which is a suburb through and through. He loves to fall into step with our friend Craig, their long legs matching in pace and rhythm as they talk about Kant or Hegel while John and I try to keep up behind them. He loves revisiting his favorite painting in the Met, Velázquez’s portrait of Juan de Pareja, and holding my hand while we stand in front of the soulful eyes of a man long since dead whose pain and dignity we can still feel. He and I both love that a slave could hold himself so proudly, undaunted by the injustices of his world.

Last time we flew to New York, however, my feet swelled so badly I had to get a new pair of shoes. Now I have been diagnosed with arthritis in my right foot. Now I have mysterious and as yet undiagnosed damage in the left basal ganglia of my brain. Six months of doctor’s appointments and tests later, and I still feel uncertain in the world. I want to stay close to home.

So I cry and tell Bruce that I can’t do it. Not yet, while I don’t know what the future holds. I tell him angrily because I am afraid. I tell him that I know he wants to travel—he wants to take me to Berlin this summer and to Kenya someday soon—and that he may have gotten a bad deal when he married me just two and a half years ago. It has not been a very romantic time since we got married, especially the past year and a half since the brain hemorrhage—and now all this.

“It’s okay,” he says. “I may just have to travel by myself.”

I know this is his attempt at letting me off the hook, but it makes me cry harder. It makes me angrier.

“Oh, great,” I say. “It’s not like I don’t want to go. Don’t you understand? I can’t physically do it. I can’t pound the concrete with you and Craig. I can’t stand for hours on the hard museum floor. I will be in agony if I try to do that. But being left behind doesn’t sound like that nice of an alternative.”

We lie silent for a few minutes as disability wafts over us in the air from the slowly turning ceiling fan.

It is a couple of days before Valentine’s Day, but the day after I have a lumbar puncture scheduled for an analysis of my cerebrospinal fluid. We have no plans to celebrate the love holiday. We both know that it is a marketing ploy, and we agree with efforts to knock back the Romantic-Industrial Complex. We have also each spent enough Valentines Days alone over the years to have experienced the whole thing as yet another competitive way for some people to feel superior to others—“I’m loved and you’re not. So I’m a better person. Hah.” We are aware of all of that, but we also are just tired and distracted by my health and other depredations of things we hold dear (like our lives’ work in higher education). These things put a damper on the mood.

Bruce is no Newt, but I am also well aware that the divorce rate is higher among couples where one member becomes chronically ill or disabled, and I am well aware that men leave disabled women more often than the other way around. I have also been rejected many times in my life, and I wonder whether Bruce wouldn’t be happier with a spryer partner.

“You may not like this idea,” he says, and I steel myself. “But what about seeing the museum in a wheelchair?”

It is not what I feared, but exactly what I’d been thinking about myself—ways to make things at least somewhat possible. Accommodations, I’d told myself, that’s the key.

“I like it just fine,” I say, and I hear Bruce sigh a little with relief. “I mean, it’s not thrilling, but I have no problem with having a chair to sit in while I look at paintings.”

“We can just take cabs everywhere,” he adds.

“I like it,” I say. “You know, that seems a lot better to me than your leaving me, either on all your travels or completely.”

“That never occurred to me,” he says. Even though this is only one of the reasons I love him, it is a big deal. Maybe one day it will never occur to me either.

Invisible Illness

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.

Smile or Die

Accusations of “hate” and “unhealthy” negativity are frequently made by those in the positivity camp against those who aren’t. It’s one of the ways that they shut down discussion and examination of the actual claims of positivity.

Yesterday, I got a new comment on one of my earlier posts—the one called “Not Sexy, Just Crazy.” The commenter accused me of “hate” because of my critique of those I see as promoting the false idea that positive attitude and vegan diets can be effective linchpins (all by themselves) of treating serious illness. On Thursday, I’ll take up an important distinction that this commenter made—that between cure and remission—but today I give you another wonderful RSA Animate video of Barbara Ehrenreich talking about how it is that positivity is often itself much more cruel than realism. In this video, Ehrenreich focuses on economic cruelty, but elsewhere she has addressed the issue in terms of her own experience with breast cancer.

I think that “hate” is much too strong an emotion for what I feel toward Kris Carr and those like her in the “heal yourself” and “be happy [whether you really are or not]” school of thought. However, this raises the question for me of what is actually deserving of hate. One reason why I don’t hate Kris Carr is that I don’t really know what she is thinking, and so perhaps she is sincere and perhaps she is deluding herself as much as everyone else. In that case, she certainly deserves pity more than anything near hate.

However, even though I reserve my hate for those who participate in less well-intentioned forms of harm (such as genocide and war-mongering), I do believe that those in the positivity movement often harm others and therefore deserve at least some kind of approbation. I think that group-think of most kinds is detestable, and I think that people who are so insecure about the “positive” path they are following that they can’t even hear or consider other kinds of paths, that they get furiously angry about anyone who questions whether or not their path is right for everyone…well, there’s just something supremely ironic about that.

I am bemused by all those positivity types who are so angry with me (and others) for not being one of them. They can tell me repeatedly that my anger isn’t “healthy,” but, whoa, they seem more angry than I am. That, I believe, is the result of false positivity—ultimate anger, disappointment, even cruelty and marginalization of others. Genuine positiveness is something else entirely.

Painful Positivity at the Gym

My Y uses these new computerized bikes, too. Photo by Mass Communication Specialist 3rd Class Joshua Nistas of the U.S. Navy.

Mindless positivity is rampant at the Y where I belong. It’s all part of the gung-ho, cheerleader/coach kind of thing that is supposed to help motivate us non-athletes to get in better shape and, more subtly, part of the prosperity gospel that implies that God wants us to be happy and healthy, not to mention rich. Recently, the YMCA changed its official name to just “the Y,” and I had a momentary hope that the more supercilious aspects of the Christian basis of the Y would abate. It was only momentary.

* * *

There’s one indoor cycling instructor who otherwise teaches a great class. But at the end of each one, she calls out to each departing participant, “Have a blessed day.” She says “blessed” with two syllables, and I cringe every time.

* * *

One day, another spin instructor surprised the class with a lecture on excuses. “We all have problems,” she said. “Your back or your knee or your whatever shouldn’t get in your way. You just have to push yourself beyond it.” I looked around the room at us middle-aged professionals mixed with the occasional housewife. “I don’t let my aches and pains get in my way,” she smiled. “So, no excuses. You’ve got to get out of your comfort zone!”

For a long time, it’s been well known that effective training takes sensitivity to where you are in the moment and is most effective when you push yourself only hard enough, not too hard. Haven’t these people ever heard of target heart rates or the ten-percent rule? I stared at the heart rate chart on the wall and wondered that no instructor in my spin classes ever mentions it.

I realized that most of these young-ish people who exercise several hours a day in their role as instructors simply think that most of us are lazy. They must get frustrated at not producing fitness “successes”—those who lose and keep off the extra pounds or who turn into ideal amateur athletes. But what I see is that their methods drive people away. The expectation of transformation is unrealistic. It’s hard to get past that sense of failure and just keep on muddling along at our distracted, so-so, not-top-priority way. Every January, I watch the result—the full classes that will gradually winnow down and then fill up before beach season with a whole different group. The Y will keep hounding us to bring in new members.

Last summer, in fact, I nearly became a total gym drop-out. I’ve belonged to the Y for several years, and have had some great instructors. But trends sweep the field of fitness just as they do other arenas, and lately one particular indoor bike company sold its bill of goods to my Y. These are sleek bikes with computerized screens, similar to the ones on the treadmills and Stairmasters upstairs. The old Schwinns are out.

Now in every class, we are constantly barraged with numbers. We are told repeatedly just where our RPMs should be. As a sometimes nod to the variability of our fitness, the instructors might say, “I won’t tell you where your tension level should be, but keep your RPMs up with the rest of us.” Others simply say, “Everyone should be running at 90 RPMs and a pressure reading of 14.” This is insane.

No doubt the numbers on the screen could be well used by individuals to compare their performance between one ride and the next, but the way the instructors have been taught by the company to use them, they create a Procrustean bike. They have eliminated one of the best things about previous cycling classes, which is their ability to accommodate anyone with any level of fitness. Our Y has already started designating which spin classes are “basic” and which are “advanced.” This is a totally unnecessary move and one that simply complicates busy people’s schedules. By golly, though, they have got to be using the technology in a high-profile way, and the only way to do that is to talk out loud about the numbers.

The bikes create a lot of these tail-wagging-dog issues. Spinning has for many years been done in dark rooms. The first time I ever went to a class, the fellow next to me told me that he’d managed to lose twenty pounds over the previous two years by sitting in the dark on the back row where no one bothered him. I myself enjoyed the darkness because it helped me concentrate on my own workout instead of watching what other people were doing, as is so often a problem in other kinds of exercise classes. Now, however, we are told that cycling in the dark is bad. Supposedly this is a general industry-wide discovery—“engagement is better”—but I recognize in it that one bike company’s influence. Their computer screens are not back-lit and can’t be used in the dark.

I have watched as the classes have become more and more dominated by younger people and the middle-aged people like me revert to the individual machines upstairs and drinking coffee in the lobby. But maybe, I think, this is the intention. Get the riff-raff out of the spin classes. Return spin to the kick-ass reputation it sometimes have. It is all about that image of what the Y is, and I imagine that attracting younger, more stylish members is a marketing goal.

My mind reels back to decades ago when I made my first decision to start working out. At the time I was a staff member at a university, and I convinced my friend and co-worker Charlene to go with me to the university gym. At one point, in the middle of our ride on the stationary bikes, she said, “Lisa, I don’t think we are really the types for this.”

It was true that we got some stares in the weight room. At the time it was inhabited mainly by men who looked as though they belonged there. We fielded a few mild insults and shaken heads over the low weights we would use. The guys would stand over us impatiently and sigh as we did our reps.

“Charlene,” I said, “I am just tired of letting the assholes have everything.”

I have seldom looked back from that moment, and I have belonged to a gym constantly since then in spite of not being the type. The recent regime changes at the Y, though, have made me wonder. My mother has been lifting weights since she got diagnosed with osteoporosis a few years ago, but she has stayed fit well into her seventies mainly by walking.

* * *

Another spin instructor one day before class was holding forth about how she doesn’t believe in therapy. “You can’t change the past,” she proclaimed to her captive audience. “You just need to forget whatever it is and move on.”

“Ah,” I said from the middle of the room, “but you can change the past.” I finally got her to admit that you can at least change the way you think about the past. But I could tell that she didn’t think that mattered.

I accept this kind of supposedly motivational positivity as par for the course in the world of health and exercise. Taking control of your life and letting go of the negative go hand-in-hand with movement, evidently. I have to say I prefer the positive style over than the one where the instructors yell at you and tell you that you’re failing. But sometimes the two seem to me to be two sides of a coin.

* * *

Before an indoor cycling class a few weeks ago, the instructor whirled through the small anteroom where several of us were changing our shoes. I hadn’t been to her class many times before, but I was trying to change my schedule around a bit. She tossed down her bag on the instructor’s dais and stomped back past us to the water fountain.

“I just can’t believe people,” she said, glancing toward one of the other women. She bent over the water fountain, filling her bottle. “You’d never believe this client I saw just now.” She explained with a sweep around the room that she’s a home health care worker. “We try to help them,” she said. “I tried to be nice.” She turned her head to the side. “But he was so un-American.”

I steeled myself. The other women murmured their sympathy and went back to tying their shoes. But the instructor bull-dozed on. “I mean, he’s… Well, he’s fat,” she said, screwing her nose up a bit. “And he’s diabetic and all that. I keep telling him that he has to eat better, and what does he say? He says it’s all because he lives in America!” She sputtered. “I just can’t tolerate that kind of anti-Americanism.”

I didn’t really know her well enough to get into it, so I sat horrified as she went on. “You know, I live in America, and I’m not fat! It’s all his own fault and he wants to blame the greatest country in the world.”

This exchange (or lack thereof) has haunted me since. That so many of the Y instructors use themselves as the measuring stick to judge other people haunts me. That this particular woman’s inability to sympathize with an immigrant who has left his native culture and perhaps the loving support of his family haunts me. That he lives in some crappy apartment with a stove that hardly works and so chooses to eat fast food haunts me. That she believes that the best way to help him is to blame him haunts me.

Well, a lot of stuff haunts me. I think that over the past months of my genuine emotion exploration, what has been most useful have been reminders about self-compassion and compassion for others. It’s even a tenet of positive psychology. It’s just a part that a lot of positivity enforcers forget.

There’s Something Wrong with Aunt Diane

Lately, I’ve been pretty far from my original subject matter of crying. It’s been important for me to explore other kinds of genuine emotional expression, and I’ve enjoyed my thought travels in that regard. Last night, however, simply by accident, I ended up watching the HBO documentary film There’s Something Wrong with Aunt Diane. It’s a truly tragic story that you may remember from original news reports after July 26, 2009, when Diane Schuler drove the wrong way on the Taconic Parkway, causing a horrible traffic accident. She killed herself, her daughter, her three nieces, and the three men in the vehicle her van hit head-on, and injured her son, who was the only survivor in those two vehicles.

The case is indeed one that has no sure answers: There is no denying that Diane Schuler had a blood-alcohol level of 0.19 with more undigested alcohol in her stomach. Her blood also contained THC, indicating that she’d been smoking marijuana. Her family—and the documentary—make the argument fairly convincingly that this was completely unlike her, in fact, unbelievable. Both she and one of her nieces had called her brother from the road and said that something was wrong, that she wasn’t feeling well, and she had stopped, apparently sober, to try to buy some pain relievers that the convenience store didn’t carry. They believe that she must have had some other kind of health emergency first—likely a stroke caused by an abscessed tooth. But her autopsy supposedly ruled that out even before the toxicology results came out.

Watching this film is hard, and there is no uplifting ending, so it made me think not only about suffering but about narrative, and the attractions and pitfalls of nonfiction. It’s instructive to compare the documentary, even with its clear sympathy for Diane Schuler, to the fictionalized version in Law & Order’s episode “Doped.” In that version, the police end up proving that its fictional driver had been doped with alcohol in a smoothie provided by someone else and with propofol, an anesthesia drug, in her asthma inhaler. It turns out that one of her colleagues at a large pharmaceutical company has drugged her because she intends to blow the whistle on a bad product.

The fictional TV show is very straightforwardly satisfying: the mother ends up being entirely faultless, her husband it turns out did know her well in his insistence that she didn’t drink, the bad guys are identified and punished, there is a clear explanation for why these terrible events occurred. At the end of the story, we may have sorrow, but we don’t have any questions. They’ve all been answered.

Of course, that is a TV tradition more than it is a habit of great fiction. And most great fiction leaves us with many unanswered questions. Most great fiction is more like nonfiction than TV episodes are. I need only mention Ford Madox Ford’s The Good Soldier and Emily Brontë’s Wuthering Heights. Think of anything that William Faulkner wrote, especially that ending of Absalom! Absalom! wherein Quentin protests that he doesn’t hate the South and we are left with the same question he is—what his relationship with the South really is and will be. Great fiction doesn’t try to erase the mystery that comprises actual human experience for the sake of a tidy story.

Yet it is true that one of the great difficulties of writing creative nonfiction is that life doesn’t always follow clear paths. The debate in the Schuler case goes back and forth: Are the people who have lost people (Schuler’s brother and his wife, the families of the men killed in the other car) simply looking for a way to file this event in the “explained” file so they can move on? Are they too eager to condemn? Or are her husband and another sister-in-law in denial about what she was capable of? Lawsuits and counter-suits are being filed, and that’s tragic in itself. The whole question of how and why people respond so variously to one event floats in the air as unanswered as the cause of the accident.

For me, when a woman who is not generally much of a drinker and only smokes pot to get to sleep at night is determined to have been smashed and totally stoned at midday with a carful of children she loved, it’s easy to believe that something else was going on. There’s Something Wrong with Aunt Diane demonstrates that she was a woman who might very well be reluctant to ask for help if she was ill and might think that she could just tough it out until she got home. She had been self-medicating her insomnia for years, and she might have self-medicated herself to death if she were in pain.

Having had that extremely painful hemorrhagic stroke in 2011, I can imagine it. I rode the bicycle a mile and a half home with my head pounding as though being repeatedly hit with a nail gun. I didn’t know what else to do, though I had a cell phone and my husband could have called for help. I am very glad that I was not driving a car at the time, and I am a person not averse to medical help, so I can imagine a person like Diane Schuler trying to ignore her situation and carry on.

Having also had more than one serious medical situation that has no clear explanation, I can also believe that something happened to Diane Schuler that her autopsy didn’t detect. If they can’t always get to the bottom of things when you’re alive to tell the tale, it seems to me that with someone dead, there is a lot that’s easily missed in the body. Once the toxicology report came in, there was no interest or motivation in pursuing anything else. Those who wanted one had an explanation, and it was that Schuler was an irresponsible drunk, in spite of all the evidence of her life to the contrary. In some ways that seems to me like a fictionalizing tendency, or I should say, an oversimplifyingly fictional one just as much as the wholesome-mother version on Law & Order.

That doesn’t mean that I am satisfied by There’s Something Wrong with Aunt Diane. It starts out with the same optimistic tone of any whodunit. But by the end its insistence on the unknowability of what happened is appealing at an intellectual level, but devastating at an emotional one. It’s the kind of movie where you don’t know quite what to do with yourself when it’s over. I myself remain unsure whether that’s a flaw in the writing and arranging of the documentary or whether it’s realistic and good. It might feel just a little too much like life. But I know I won’t forget it.