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Category Archives: Health & Illness

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.


If I remembered nothing else about Alice Sebold’s memoir Lucky, I would remember the reason for that title. Sebold, who was raped at knifepoint while a college student at Syracuse University, was told by the police immediately afterward that she had been “lucky” not to have also been murdered.

Unlike Sebold, I have never been raped by a stranger on a dark city street, but I have been told repeatedly how lucky I am when it seems an odd concept to apply. It’s hard to argue with this statement, as, yes, things could almost always be worse. When one survives, when one has a loving family, when one lives without severe economic hardship, when one has decent health insurance, one is lucky indeed. So, yes, I am lucky.

Still, I find it peculiar that so many people are so eager to tell me that I’m lucky, or worse, that I am blessed. This came up again a few weeks ago when I was in an elevator going to see my podiatrist about the newly diagnosed arthritis in my foot. I ran into a woman that I had met through my work with the UCF Book Festival. I hadn’t seen her in quite a while, as last year I’d missed some meetings after my brain hemorrhage. When she asked about my absence, I filled her in. She looked me up and down and immediately noted that God must have been looking out for me and that I was blessed to have escaped unscathed. (A certain Christian version of “lucky” is “blessed,” though those folks might see a big difference since they believe in a huge difference between random luck and God’s beneficial intervention. To me, these two terms have substantially the same effect, which is to deny my inferior suffering.)

A couple of weeks later, I was diagnosed with another health problem, which the docs and I are still sorting out. This is potentially a very serious issue, and no doubt I’ll talk about it here once I know what is going on. At any rate, within two hours after I’d received the initial news about this new wrinkle in my medical saga, my phone rang and it was my endocrinologist’s nurse, to whom I had placed a call with a question a few days earlier. When I told her about my new diagnosis, she, too, immediately launched into a discourse on how lucky I was because what had befallen me hadn’t been more severe than it was. She went on to tell me how she had seen patients who’d had more severe versions of my problem and how “pathetic” they were.

On the whole, yes, I feel lucky. But in that moment, within two hours after I’d received news of a new, serious health problem, it seemed incredibly insensitive for her to launch on my luckiness. Didn’t she know that my chances of becoming one of those severely impaired patients had just doubled or quadrupled? I wanted to tell her to go out in the street and find someone with no major health problems at all. “Tell that person she’s lucky,” I thought.

A couple of days later I talked to one of my friends who a few years ago received a double mastectomy due to Stage IV breast cancer, and I asked her if people tell her that, too. Of course they do. She said that she’s even been told she was lucky to have a double mastectomy because she just doesn’t have to worry about that any more. Some fools, she told me, even tell her that her breast cancer should be the best thing that ever happened to her. We talked about the difference between believing that an illness is a blessing and believing that a person can take an illness experience and learn and go on with better insight. Some people don’t seem to understand the distinction. We both feel that it’s up to us to determine the meaning of our illness experiences, not up to strangers to assume a stock meaning such as “If you’re not dead or severely crippled, you are lucky.”

On the surface, of course, it’s not bad to be reminded that things could be worse. The other day I did that very thing when an acquaintance posted on Facebook the question, “Could this day get any worse?” It seemed to mostly be about things like her sports team losing, so I said, “Yes, yes, it could. But I hope it gets better.”

I hope it gets better. Even when someone has some small thing go wrong, they deserve our empathy or at least our sympathy, the latter being recognition of a feeling we might not share. I sometimes wonder why people are so stingy about such things. I’ve come to believe that it’s a very selfish defense mechanism, augmented by an oversimplified belief that being upbeat is always beneficial. I mean, I don’t care that my friend’s sports team is losing—really, really don’t care—but I can still give her a word of encouragement. And encouragement doesn’t deny reality. I’m not going to tell her that her sports team is blessed because they lost 21-14 rather than 21-0.

In fact, this lack of empathy borders on the narcissistic, and I feel as though it has become rampant in our society as the tenets of positive psychology get oversimplified and dumbed down. Because people are so filled with this idea that “positive” is helpful, they fail to even register what other people are feeling, much less to respond appropriately.

And there is a huge fear of being “sucked down,” being forced into negativity. These people who want me to feel lucky don’t want my sadness or concerns about my health to worry them. But one of the things that is often forgotten in the common sources of advice about overcoming negative emotions such as anger, anxiety, depression, and fear is that the biggest fear of all can sometimes be the fear of these emotions. What does it mean when what we have is an unhealthy fear of fear? If a drop of sadness threatens to flood us with sadness? If we are more anxious about anxiety than about its original source? We are hard-wired to have these negative emotions, and they are part of our survival mechanism. To constantly blunt them with platitudes is to live a stunted life.

I don’t mean that we should respond to every and all emotional demands. Some are inappropriate. Some we don’t have the means to deal with. But it is just as easy to say, “I don’t know what to say. Glad it’s not worse” or “Hang in there” or “I hope it gets better” than it is to tell someone else they are blessed.

I feel very lucky about many aspects of my life. But I sure as hell don’t feel lucky about my health these days. I am trying to get better at expressing my negative reaction to those who assume I feel only lucky. I did manage to tell my endocrinologist’s nurse that it wasn’t very helpful for me right now to hear about all those worse off than me. But she kept insisting that her message was one I should hear. In person I have to admit I would have been tempted to shove her across the room. Instead, I am trying to practice my words of explanation and wondering how close I have to get to “F*ck off” before I can make people like that get it. Whatever response I have to health news, it’s up to me to decide, not up to them to tell me how I should feel.

People Connections: Facebook Reprise

Bruce and I recently watched The Social Network. We’d put it off for quite a while because we’d heard that it was full of jerks, and indeed it was. The filmmakers were fascinatingly successful at rendering Mark Zuckerberg sympathetic by making it seem as though the other jerks were worse than he was. Poor little lonely rich guy.

Several things struck me about the movie. One was how much college has changed. My brother graduated from Harvard in 1980, where Facebook got its start 20+ years later, and I attended another “elite” college, though not in the Ivy League. As I watched The Social Network, I couldn’t help thinking about the way money has come to be the vastly dominant value in our culture. I don’t mean to trot out that “when I was your age, we had to walk to school two miles through the snow.” But I have virtually no recollections of talking about plans to get rich when I was in college, and I don’t think my brother had many either. Yes, both of us knew obnoxious rich kids, the silver spoon jock types. It might be an odd thing to celebrate those fellows’ 1970s and 80s obsession with drugs and sex, rather than intellectual learning, but—hey—at least it wasn’t an obsession with reaffirming their privilege and expanding even further their financial advantages in the world. I’m sure financial plotting was there; it just wasn’t so bald in my youth.

It was no doubt more prominent at Harvard than at Carleton—I remember the much stiffer and status-conscious atmosphere from when I visited my brother there, and I remember being amazed that Harvard allowed those dinner clubs to exist in our day and age. In fact, one of the reasons why I had chosen Carleton was that it had absolutely no fraternities or sororities. I believed that such things were a throw-back—like debutante balls and country clubs. How could universities open their doors to women and people of color and different backgrounds, thus asserting that the right to higher education was not a birthright, and then turn around and allow these clubs to perpetuate the discriminatory privileges that their admissions policies no longer supported?

Of course, instead of dying out, secret societies, country clubs, and fraternities and sororities have made a huge comeback. On our recent visit to Knoxville, Bruce and I asked my dad about an enormous new construction project near the UT campus, and he informed us that the university is now pouring money into a project to build sorority houses. “To fix the gender inequity,” he said, and sighed. I find the idea of sorority houses addressing an inequity hilarious. One kind lessened for more of another kind. That they’re now building sorority houses instead of demolishing fraternity houses shocks me.

As we watched The Social Network, I thought a lot about the exclusive origins of Facebook. I recall that when I was first encouraged by friends to sign up for a social networking account, I was told that the Facebook membership was better educated than that of MySpace. I didn’t realize for a long time that Facebook had originated at Harvard, that it had been built on the concept of exclusivity. First it opened to other Ivy League schools, then expanded to university students with “edu” email suffixes, then (I suppose when some of them started graduating) to people at certain companies, and then, finally, to all over the age of 13.

In some ways then, Facebook has been democratized. Yet I wonder if it doesn’t remain tied to a hierarchical system based on rather juvenile standards of interaction and created by a fellow who imbued it with a barely-beyond-high-school sense of social values. I think a lot of us—even those of us who use it enthusiastically—have deep ambivalence about it because of some of these remnants.

On the one hand, I really enjoy Facebook. It’s rather miraculous to be in touch with people I would likely never have heard of again had Facebook not come on the scene. I no longer live in either of my hometowns, and I have never received an invitation to a high school reunion, nor have I ever attended a college one. When you have had the rather peripatetic life that I’ve had, it’s also a miracle to see so many different parts of your life gathered in one spot. Weird sometimes, but cool, too.

There’s my brother, of course, whom I’ve known since birth, but close on his heels is Sharon, whose parents played bridge with my parents when I was a toddler; Lisa, who I met in elementary school and who introduced me over the years to both s’mores and Spin the Bottle at her parties; William, who played basketball with my brother but who was closer to me in age and stayed my good friend and correspondent all through college. There are high school friends mixed in with college friends mixed in with grad school friends mixed in with colleagues and recent friends mixed in with former students. When on Facebook I often miss my friends who don’t use it at all or much. There’s something deeply satisfying in knowing that there are some continuities in my fragmented life, even if it is just that a lot of my friends like cats and dogs.

Facebook was also great immediately after my brain hemorrhage last year—it made things easier for everyone, including me. Hospitals have changed—I can remember when they took everything away from you as soon as you were admitted. Now they leave you with your iPhone in peace. I had music, I had Scrabble, I had email, I had the ability to make calls, but I also had the ability to not have to make calls. I just posted on Facebook, and the messages of concern and affection came rushing in like rain on the windowsill—it was outside, but I knew it was there, warm and life-affirming.

Obviously, these purposes now go beyond the college-student hook-up site that Mark Zuckerberg originally envisioned. Facebook, as we all know, has helped to create entire political movements and to help locate lost teenagers. Wikipedia even reports that in February 2011, a newborn in Egypt was named “Facebook” to honor the role that it played in that country’s revolution.

On the other hand, Facebook in my health crisis situation was a little deceptive because serious illness is a demand, both physical and emotional. Some people in your life are going to meet that kind of demand and others won’t, and there are even some people you shouldn’t ask. Facebook lumps everyone together, though now in response to Google+’s circles it allows for different “lists.” Still, the effect of Facebook is a kind of superficiality—a kind of one-night-stand of support rather than something more sustaining. Three people—one colleague, one former mentor, and one dear friend—rather brutally abandoned me in the immediate aftermath of my brain hemorrhage, and Facebook has made this doubly weird.

It’s not that these betrayals wouldn’t or couldn’t have happened without the brain hemorrhage—at least one of them definitely would have, as the ground for it was laid by my colleague long before her final coup. My brain hemorrhage was in that case used as a convenient excuse for side-lining me, and this extended to the betrayal by my former mentor as well. In both of these cases, I was discredited partly because I was ill and therefore “weak.” This is a common and well-documented reaction to serious illness, outlined long ago by Irving Goffman in his work on stigma. The friend who abandoned me is another matter, and one that I’m at a loss to explain. Explanations and excuses are seldom forthcoming in such situations, and certainly friendships sometimes end without major illness as a factor. But I will say that such abandonments in times of illness seem cruel, far more so than when you’re well.

And it’s not as though these betrayals wouldn’t have happened without Facebook. It’s just that Facebook takes you back to the kind of public rejection that we’re all likely to have had in junior high and high school. One of the people who betrayed me in 2011 also “unfriended” me on Facebook in a good indication of her own guilt and self-loathing, just like the junior high girl who steals someone else’s boy and calls her former friend names.

The other two are still my “friends” on Facebook. One of them is probably completely unaware that I feel betrayed by her; I grant her the benefit of the doubt because I know she was misled by others. We are still polite to one another, but I feel a bit like a teenage girl who thought she was the favorite of the football team captain only to find he’s dropped her for a cheerleader. The one who was my friend simply sits there, just as her image does in my wedding photos, a cypher, like the former close pal whispering with her new buddies at the school lockers.

I feel no particular antipathy toward any of these people, though it is odd to see them on Facebook (and I do see even the one who “unfriended” me because we have numerous “friends” in common). I suppose that’s an indication that my emotional life has matured since high school even if the structure of Facebook shapes us in that h.s. mode. This has all pointed out to me concretely how Facebook is not so much about friendship as it is about something else, the wider social network indeed—or the appearance of community, but not community itself.

We all know this, of course—it’s particularly obvious among writers and academics where so many of us use it as a tool of self-promotion. I do this myself, to the extent I link my blog to it and post publications sometimes. There are those who use this aspect lightly, though, and those who use it heavily. There are those who do so unrelentingly, and there are those whose Facebook pages are strangely unreal, surreal even. Watching The Social Network, I thought it no wonder that Facebook is so commonly used this way, considering its founders and their original intentions of getting ahead.

Being “friends” is, after all, not the same as being friends. I’m pretty sure Mark Zuckerberg has known this from the very beginning since his main motivation for his creation seems to have been revenge and social climbing. In other words, this may be a “duh” moment. But I still think about it a lot, in love as I am with both the simulacrum and the real world and still trying to parse out what differences Facebook makes, positive and negative.

Thank You, I’m Alive!

Today is the one-year anniversary of my brain hemorrhage. It was not my day to die last November 14. Like Old Lodge Skins, I ended up getting up and going home. Unlike Old Lodge Skins, however, I had not set out that day to die, and, in fact, one of the things I realized after my unexpected brain hemorrhage was that I did not consider it a good day to die.

It may seem obvious that we don’t usually consider any given day a good day to die. But, as I was trundled on the gurney out to the helicopter for the flight from Altamonte to Florida Hospital South, I thought about that line from Little Big Man. It is a line that indicates a life that could be let go, even immediately, with satisfaction in having lived well. As great as much of my life was and is, I didn’t feel that way about it. I’ve spent the last year contemplating how my life (external and internal) might change so that if I do drop dead the next time, I will be sorry to go but not regretful.

One of the things that I know I would want to do is to thank the people who have helped me so much in the past year. In spite of the fact that I escaped relatively unscathed, their support has been crucial as I’ve sorted out the meaning of this event in my life and struggled to get my full strength and vitality back.

First comes Bruce, who was with me the whole way. The pain of this hemorrhage was so bad that I did reach a certain readiness for death—not out of acceptance but out of desperation. At the moment when I thought, “I can’t stand this another second,” the fear in Bruce’s eyes let me know how much he loved me. I’m glad his fear didn’t last more than a few hours, but I’m also glad it let me know that I had good reasons to withstand the pain.

I also want to thank my beautiful family of origin. We have many flaws, but they all pitched in when needed and made a huge difference in the crisis. My mother was here from Virginia in less than 24 hours, and stayed the entire ten days I was in the hospital, helping a shell-shocked Bruce and laying in the meals that we would eat for weeks after, as well as sitting with me in neuro intensive care. My father and brother put their heads together when they heard that Bruce might cancel his trip to Africa (the culmination of a year’s worth of work), and they volunteered to come and stay with me for alternating weeks after I got out of the hospital so he could go and complete this major project. My dad’s wife, Jane, was considerate enough to send along with my dad a new pair of comfy pajamas for me to wear during my weeks on the sofa.

I want to thank my friend and colleague Terry, who stepped right in and took over my most onerous class and who arranged for others to fill in for my other classes. I appreciate all who helped with my abandoned teaching duties and grading for the end of term, but especially Terry, who made all the arrangements, ran materials back and forth, and added a boatload of work to her already heavy responsibilities. Terry and her husband, Don, came to the hospital and told the nurses they were relatives so they could check on me. I thank them for their genuine involvement and caring.

I thank all those who sent well wishes and little gifts in the days I was in the hospital, the students who sent me a box of chocolate, and all those who called to get the story. I thank my many friends and other relatives from all over the country and beyond who have checked in from time to time and asked after me.

Most especially I thank my dear friends Susan, Gigi, Holly, Ivonne, and Anna (and Terry), who have been in touch even more frequently than usual to talk over the shifting meanings of our lives. They say that in a crisis you find out who your friends really are, and you do. These are people who understand the reasonable and the unreasonable in both me and the universe. These are people who overcome the fear in themselves evoked by all serious illness in others and who don’t discredit you for it. As Adrienne Rich notes, “we can count on so few people to go that hard way with us,” but the generosity of these friends has been plenty for me. They have all been through “things” themselves, and they have been great companions on my journey back.

I am blessed by the presence of all these people in my life, my life that goes joyfully on. I may not think that even today is a good day to die, but I would die with much less regret today than a year ago.

All Along the Watchtower

I’ve been keeping this blog for about six months now—at least two posts a week for six weeks. On Thursday I hope to reflect more generally on this journey, but today I want to mention the heat that’s involved in any kind of public discourse, no matter how modest.

Why is it worth trying to tell the truth as I see it? It certainly doesn’t make me universally popular. Fortunately, I get more in the way of agreement and support privately from those who say they don’t want to venture more publically (though they often do just that in a necessary context). I’ve been having all kinds of discussions off the blog with people about my willingness to deal with the more public criticism and about my willingness to speak my mind.

And let me note that I’m not perfect, and my blog is a personal rather than a journalistic one. I don’t say unfounded things with no reason, but what I write about is always open to interpretation. I don’t claim to be an economic expert or a psychology expert or a music expert or an expert on the formation of new departments at my university. I have a moderate level of knowledge about any subject I approach, though I remain open and correctable. It’s my hope that there is some shred left of a desire for discussion where people say, “Here are my reasons,” in response to my saying, “Here are my reasons.” That’s what I believe we are called upon to do as supposedly thinking people, especially those pursuing an academic life. Instead, I often find myself in a position where I have outraged someone by speaking (or writing) at all.

I have been fulfilling this position for much of my life. I don’t know how or why it became so important for me to speak my mind and to report what it is I see before me. I do know that it was a role I played in my own family of origin, and I remember reading a book about family dynamics years ago in which I recognized that I was the one who always said the things no one else would say even though they were all thinking the same thing. I was the one who expressed much of the dismay or frustration that everyone else felt.

Even this weekend, I had an exchange with my mother (sorry, Mom!) about an email she’d sent about trying to plan for the holidays. There are certain extended family members who resist communication and who make it all very complicated for my mother and her husband. In their branch of the family, the holidays have long been a power struggle. I told my mother that this year Bruce and I are going to plan for ourselves and extend a few invitations, but that I am not going to undergo eight weeks of hostile negotiations. Period. Eventually, my mother said that she was so sorry she had sent the email and upset me. It took me a few minutes to realize that she was the one who was most upset by this situation, not me. I was expressing her distress. I was naming the problem with the extended family, even though my mother knew full-well what it was.

I don’t know why I am this way. Maybe it has to do with the sub-conscious training in my family to fulfill a certain need others had. Maybe I was just struck in elementary school by The Emperor’s New Clothes, a brilliant children’s book if ever there was one. Maybe it has to do with developing an early chronic illness that the doctors always accused me of lying about (“I know you ate candy.” “I know you didn’t have a low blood sugar.” “I know you skipped your injection.”). Maybe it had to do with my unusual proximity to death and a desire not to waste my time with bullsh*t.

My friend H reminded me this weekend that Virginia Woolf always considered herself an outsider and that she evoked devotion in some and hatred in others. I’m not a “great thinker,” but I do hold up for myself a few fellow truth-tellers that I admire and who have always inspired me: Martin Luther King Jr., Malcolm X, Adrienne Rich, Claribel Alegría, Tillie Olsen, Susan Brownmiller. These are people who understand the dangers of silence, and I am in good company if I poke some people in the eye.

Today, I present to you Bob Dylan’s song as sung by Jimi Hendrix, and this lovely interpretation of its meaning, the importance of truth to artists, and the importance of outsiders to society. “Let us not talk falsely now, / The hour is getting late.”

To Politic or Not to Politic

Photo by Daniel Schwen via Wikimedia Commons.

That is the question. Truly, I am not much good at it.

On Monday I made a rather veiled post because I couldn’t yet deal directly with my Sunday. Even now my mind reels with a bunch of different things that came up and that I thought in response to the situation. The situation was this: on Sunday, I spent two hours on an airplane being attacked by three men for my politics. Trust me, I didn’t start it, but the only way for me to survive the conversation was… well, to persevere.

The least active of these men was an airplane pilot (flying for free as a perk of his job, I might add). He immediately launched a speech about how he home-schools his children because the public schools in Florida are questionable, but how he moved here because it was an inexpensive place to raise his family. Go figure. He promptly turned over and pretended to sleep, but then later woke up and told us what the “facts” are.

Between me and the pilot was a divorced businessman with two engineering degrees and an MBA who brow-beat me throughout the flight, frequently citing statistics I know aren’t true and for which he had no source, telling me that numbers are all we have, and frequently returning to the “fact” that money is everything that’s important. (Not to Jebus! I wanted to say.) He started the conversation by telling me that he disagreed with home schooling and whispering into my ear about his disrespect for the pilot; his only child attends a prestigious private school, and he relocated in order be close to whatever school his son wanted to attend. I tried to fight the good fight.

All the while I was getting glares from the beefy redneck in a green sports-logo shirt in the row in front of us. It became clear that were there not a seat and several people between us, he would have physically attacked me. Instead he waited until the end of the flight to yell at me about how he’d had to listen to me all through the flight, that I was a “damn typical liberal thinker.” I tried to tell him that it wasn’t me who started the conversation, but I couldn’t get a word in. Steam was practically coming out of his ears. It occurred to me that what I should tell him was that he really, really shouldn’t wear that shiny color of green, that it really made his red face look as though it would explode. Not at all flattering.

But, seriously, it’s no fun to be attacked. And it’s disturbing to live in a world where some people not only disagree with you, but truly believe that you have no right to exist and would kill you if they could get away with it.

This is one of the huge differences between the left and the right, at least so I tell myself. I believe these men have a right to exist. They manipulate through one dodge after another, they claim authority and superiority, they believe their bad luck is someone else’s fault but that they deserve and have earned every bit of good luck that has come their way. It makes me insane, but I try to acknowledge their right to exist. I may despair of them, and I may be outraged by them, and I may even plot about things that could change their minds. But I do not wish to wipe them off the face of the earth the way they wish it so on me.

There was nothing I could say, though, and there never will be. In their minds I don’t have a right to exist and my difference of opinion is not something to be queried or examined, just something to be derided.

I know it’s nothing new to anyone, but it still makes me sad that we have become a nation where people can’t hear each other and where the arguments have become so irrational that it’s impossible to get through. There almost seems to be no such thing as the “facts” as spin doctors massage numbers and statisticians twist results this way and that. I kept trying to tell the businessman that his facts didn’t sound much like my facts, but he was unwilling to consider anything other than that my facts were wrong.

This man had a veneer of education and politeness. But our conversation on healthcare soon demonstrated how in danger I really was near him. First, he brought healthcare up. As soon, however, as it became clear that I know a thing or two about healthcare, he told me that I was changing the subject from the economy to healthcare. Second, when I told him that the U.S. is the only developed nation in the world that doesn’t have some kind of government-sponsored health care and that my husband, a Canadian, is typically devoted to government-backed healthcare, he said that he knew some Canadians that had fled to the U.S. for healthcare. I told him that I suspected he was reporting from what the right says, not from personal experience, and that even if a few grow disaffected (no system is perfect and Canada has its share of right-wingers) the majority of Canadians are devoted. But when I tried to tell him that I know several individuals who have had terrible times due to lack of basic healthcare here in the U.S., he said dismissively that individual stories mean nothing.

When the individual stories are his, when the statistics support his argument, then they are valid; otherwise, they aren’t. And he doesn’t quibble about the particular truths. Instead he claims that each method of my argument is bad even though he’s just attempted the same method.

Shudder. But it got even worse. “Look, he told me, we all want people to have a roof over their heads, to have enough to eat, and to be taken care of when they’re ill.” He acted all socially concerned. But when I asked him how that was to be if we didn’t have government-mandated healthcare, he refused to answer. Instead, he leapt on exemptions. He clearly knew nothing specific about this, but he said that Congress should have the plan everyone had to have. I said that maybe we had found a point of agreement, but that Congress had pursued a plan that has a lot of unevenness instead of universal socialized medicine run by the state. The latter, I said, would never pass because of people like him. So the private profit industry remains, for better or worse. “So you’d rather have a universal system?” I asked him.

You’d have thought I put his hand to the stove burner. “Just don’t ever ask me to pay for someone else’s healthcare,” he spat out, showing his first sign of agitation.

“So, you’re one of those debate audience types,” I asked, “who would vote just to let the injured or ill die if they don’t have private insurance?”

He couldn’t bring himself to say that. He said everyone should receive care. “How?” I said. “Do you mean that charities should cover it or what?”

“Healthcare is not a right,” he said.

“To you it’s not,” I said. “To me, it should be. To most of the governments in the developed world it is a right.”

“It’s not!” he said. “Those people have made bad choices. Don’t hold those places up as examples.”

“So you would just let those people die?” I asked. “By the way,” I said, “the U.S. has the highest per capita expenditure on healthcare and we have a terrible record on life span.”

“It’s not a right,” he said.

“If it’s not a right,” I said, “then you mean you would just let people die?”

It could have gone on this way for ever. I really wanted to let go, to stop it, but I just felt that would seem like defeat, and I wasn’t willing to be defeated.

Thank Jebus for the landing of planes. After that I only had to deal with the redneck guy accusing me of being selfish because I temporarily moved forward to get my fragile bag out of the overhead bin where I’d been forced to locate it several seats away from mine after all the gentlemen had shoved me aside to grab up all the nearby space.

This is crazy and incoherent. Sorry. It hasn’t been long enough. It replays like a bad dream. Others wisely tell me not to talk with these people. But it saddens me to live in this world, split.

Louise Nevelson on a Messed-Up Day

A small section of Dawn's Wedding Feast from

This has been a colossally strange day. Worst, Jupiter’s cancer is probably back, much sooner than we’d hoped, but we won’t even know today because the real diagnostics have to wait til a biopsy on Wednesday. Keeping fingers crossed that it will be rogue scar tissue, though it’s likely a swelling new tumor.

I couldn’t even drive Jupiter to the appointment as planned because I myself suddenly was having dizzy spells and staggering around after getting up on a step-ladder to get into a box in the closet early today. It was a mess indeed, as my car was in the shop and I had driven Bruce to campus and left him without a car. He couldn’t get home, and I couldn’t go get him, and we had this appointment for the cat, and I was trying to negotiate with the guy who has been redoing our rotten gutters.

In the meantime, my blood sugar went down to 45 mg/dl, which contributed to my panic and confusion. Was I having a stroke for real this time? What did it mean that even my right hand didn’t seem to type right? Might I pass out? Should I call 911? My right side seemed uncoordinated and loose.

Finally, after Bruce borrowed a car and came home to check on me and take the cat in, and after my blood sugar normalized, I realized that I was feeling in some ways very good. I didn’t want to drive to the vet’s but I could go, too, and on the way I realized that my body was somehow just adjusting to some kind of nerve or ligament or muscle release that had occurred in my shoulder when I stretched so awkwardly in the closet. After about four years (four long years!), some tightness in my frozen shoulder had finally let go a bit, and suddenly my nerves were learning to control my movements again. My dizziness abated, and I suddenly felt my arm more than I have in a long time.

Earlier in the day I was planning to post my usual sad, maybe sentimental song as I usually do on Mondays. But by now, I feel instead the call of the intensely cool, the emotional in deep reserve, the less obvious feeling, and so I’m posting a picture of a Louise Nevelson sculpture, whose work Dawn’s Wedding Feast I first saw at the Whitney in 1980 and which was recently recreated at the Jewish Museum.

Louise Nevelson is another one of those artists for whose work you just have to be there in person. The small pieces make up much larger rooms, and the work’s power is stark, its emotion apparent only in accumulation, the subtleties of its colors and shades are much more moving when you stand among the pieces as large as you yet made up of pieces as small and unique as every moment of your individual, irreplaceable, inexplicable daily life.

I just feel like that today: there’s no way to convey it. I was here. It was an odd, odd day in a thousand little details. That’s all. You know what I mean.