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Category Archives: Health & Illness

Sometimes Pain Is Telling You Something


A few weeks ago I missed my plane to Vermont. I arrived at the airport an hour and a half before my flight, but it took me 45 minutes to check my bag (though I already had a boarding pass) and another 45 at security. In spite of the fact that I told the security folks that I was going to miss my flight, they insisted on taking me aside and testing my insulin pump for explosive residue. I ended up racing down the terminal in a pair of flimsy sandals definitely not designed for running, and I missed the flight anyway.

I’ve had some serious foot pain since, and I found out a couple of weeks ago that this stems from an inflammation in my foot caused by the beginning stages of arthritis exacerbated by my dash down the terminal. The doc showed me the X-rays, and the joints in my middle toe of my right foot no longer line up. I am in the process of buying a lot of new well-padded shoes, and I’ll probably have to accommodate this condition for the rest of my life.

Bummer. I was pretty annoyed with the airline and TSA for putting me in this predicament, but then I realized that at least the pain they caused me got me to the podiatrist before I ignored this condition any further.

I thought back to last fall when I was teaching my 100-student course one night a week and would end up being on my feet for a good, solid four or more hours every Thursday evening, usually after an already long day of crisscrossing campus to other classes and going up and down four flights of bare concrete stairs to my office. I would often be in terrific pain when I got home, but didn’t pay much attention. Too much else to think about.

I’m grateful for another even more important aspect of this pain in my feet, and that is… well, that I feel pain. You see, diabetics often lose feeling in their feet because of nerve damage caused by the disease. The good news is that I don’t have neuropathy; I can still feel my feet and pain in my feet. Otherwise, I might develop a truly horrible condition common to diabetics. (And let me warn you, don’t check out the links unless you have a strong stomach and won’t hate me for inflicting this on you.) This condition, Charcot joint, might start with small orthopedic changes like the ones I have, but many diabetics end up with severely degraded and fragmented joints and even wounds from the rubbing of their malformed bones in their shoes. They may not feel anything happening in their feet until it is too late to do much about it. This is one of the causes of diabetes-related foot amputations. I have lived almost my entire life with some dread of this kind of thing.

So, while I’m certainly not happy to have this arthritis diagnosis, I am also grateful to my body for its functional nerves, and I’m glad I found out in time to stabilize my feet and treat them better. This is just one example of how we should pay attention to our pain rather than dismissing or ignoring it. Whether emotional or physical, it is often trying to tell us something we need very much to know.

Selfish Tears

I have a different pump, but this photo is in the public domain. Close enough.


One night a few weeks ago, I didn’t click through enough of the buttons on my insulin pump, and, unbeknownst to me for several hours, I had not gotten my dinnertime insulin. By the time I realized this at 11:00 p.m. my blood glucose was 339. Now, 80 is normal, and 100 is what I shoot for, but I was still a long way from diabetic ketoacidosis, coma, and death. Since I have all the tools at my fingertips and could zap myself with insulin right away, there was no immediate danger, just an emotional reaction.

I’ve had Type 1 diabetes for going on 40 years. Over the past couple of years, my blood glucose levels haven’t been all that great. I’ve been working very hard the past months to keep them stable–testing a lot, eating lower glycemic index foods, exercising, avoiding the more avoidable stresses of my workplace, and using my pump’s “bolus wizard.” This last is a term I despise–why not call it your Bolus Fairy Godmother? Or your Bolus Knight in Shining Armor? I hate the infantilizing of my condition with terms like that.

Anyway, name aside, it’s a handy little tool that calculates for you how much insulin you need for any given meal, and it records both doses and blood sugars so the doctor wants me to use it to help him monitor my highs and lows. The trouble is that you have to punch the buttons a million times to get through all the screens. Sometimes I think that, even as math impaired as I am, doing my own numbers in my head is less trouble.

So, looking at that 339 and realizing what had happened, I felt a surge of anger–at myself for screwing up, at the fact that I probably wouldn’t feel well enough in the morning for my spin class, at the stupid design of the stupid pump (which, of course, I generally appreciate and wouldn’t want to live without), at my husband for talking to me during dinner and distracting me from the buttons (which conversation, of course, I’d been looking forward to all afternoon), at the universe that saddled me with this disease.

When I got to the latter, I was flooded with tears of frustration and self-pity. My husband put his arm around me and said, “It doesn’t ruin everything. It’ll be back to normal by tomorrow.”

“I know,” I said, “but I’d just like one f*ing day off.” We acknowledged as how that’s not going to happen, no matter how much I hope for it. There is no one with a magic wand anywhere in sight, not even the Bolus Wizard.

These were embarrassing, selfish little tears, and I regretted them as soon as they had passed. But still, I want to say that it’s probably okay to cry for yourself a little every now and then. Especially if it helps you let go of the anger and blame.

In fact, one recent concept to emerge out of positive psychology that might actually be useful and helpful is that of “self-compassion,” the practice of accepting and examining negative feelings (such as failure, inadequacy, and other kinds of suffering) rather than denying or disapproving of them. Even Martin Seligman has questioned the emphasis on self-esteem in raising children, noting that it tends to make them unrealistic and narcissistic. In more recent years, researchers such as University of Texas professor Kristin Neff and Harvard professor Christopher K. Germer, have focused instead on self-compassion.

There are a couple of aspects of this approach that are important: one is that self-compassion also involves an awareness of others—you’re encouraged to understand that failure is a normal part of the human condition and that others feel afraid or inadequate too. Another important difference from much of the run of positive psychology is a lack of denial of negative aspects of life. New studies are showing that it may alleviate depression more to review negative events at the end of each day instead of trying to think positive thoughts, as long as one takes a forgiving attitude toward oneself in doing so.

Many of those researching self-compassion, including Germer and Neff, are influenced by Buddhism. Buddhism perhaps shares with positive psychology a belief that one’s surroundings are not the key to happiness, but what it seems to bring to the positive psychology endeavor that’s different is a focus on compassion rather than achievement and an understanding that some superficial pursuits of happiness may have negative consequences, that one’s relationship with the world really does matter for long-term happiness.

Self-compassion, of course, also helps one be more compassionate toward others, something I find missing in most positive psychology, and in much (though of course not all) of today’s prosperity-oriented Christianity. I know that for me, blame certainly snowballs. As soon as I was able to forgive myself for messing up my insulin dosage, my anger at Bruce and the insulin pump designers dissipated as well. Diabetes is one part of the normal imperfect human condition. I keep trying to let go of the usual blame.

TimeSlips

Several years ago, I participated in a National Endowment for the Humanities summer seminar in medical humanities at the Hershey Medical Center. We resided at the medical center for a month, had daily lectures and discussions with experts in the field, and had the opportunity to do things like shadow physicians and nurses through the hospital and attend grand rounds. It was a fascinating experience in many ways. The thing that sticks with me the most, however, is TimeSlips, a program developed by Anne Basting, director of the Center on Age and Community at the University of Wisconsin, as a way of engaging Alzheimer’s patients in storytelling.

Basting’s motto is “Forget memory; try imagination.” When she began working with Alzheimer’s patients and storytelling, the emphasis was all on trying to get them to tell their own life stories. But this was a disaster for everyone, as it only agitated those having trouble with memory. So Basting decided that she’d change the frame a bit and developed a technique whereby a group of patients tell stories in response to striking photographs like the famous one of an elephant trainer sitting with his hand on his elephant or the one of a bunch of nuns in a Volkwagen bug. The emphasis is on the here and now and the use of speculation and fantasy, much easier on those who not only can’t remember but fear their loss of memory.

The stories are not traditionally coherent by any means, but what happens is that many of the patients have fun. When I first saw the film Basting showed us at Hershey, I was stunned to hear Alzheimer’s patients break out in song and laugh at the variety of wild ideas that came out of the group. All fifty of us in the room watching that film wept at the evidence that people so often dismissed as “gone” could express joy and pleasure and participate in a creative group activity.

Unfortunately, there’s nothing available on the web now that’s anything as powerful as the film I first saw. I’m not sure why—perhaps it has to do with privacy issues or with the fact that TimeSlips offers paid, professional training in its techniques. But here is a tiny taste.

My Head! My Head?

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Ancient Egyptian reserve heads are theorized to have been made to replace a person's damaged head. I like that idea. See http://educators.mfa.org/galleries/slide_create/744?page=11.

We’ve all heard of anniversary syndrome—that creeping feeling you get when a date on the calendar approaches that used to be important or on which some terrible event took place. We may not even realize that the date on which someone died is looming—we don’t keep track of those on our calendars the way we do birthdays—but our bodies remember. We feel sick, we get headaches, we may just be in a bad mood, jumpy or weepy.

I am always amazed at what the body remembers and how it is so likely to respond to the past right in the present.

A couple of weeks ago, Bruce and I were rushing around getting ready to go somewhere. I’d been standing at our bathroom vanity valiantly attempting to style and blow-dry my hair, something I’m terrible at and that takes me an absurd amount of concentration. Unbeknownst to me, Bruce had opened the top door of the cabinet next to me, and when I turned with some haste to go back in the bedroom and finish getting dressed, I hit my head on the cabinet door.

It hurt, true, and I was annoyed at him for leaving the door open, but neither of those things should have led to the shriek I let out. I grasped my head and staggered to the bed, where I leaned forward, moaning and screaming. When Bruce tried to comfort me and apologize, I would have none of it, but continued rocking forward and back, holding my head. Tears poured from my eyes, streamed down my cheeks, and dripped off my chin. I couldn’t catch my breath I was keening so hard. I reminded myself of the widow Emilie loudly grieving her husband’s death in Bergman’s Fanny and Alexander. I went on and on.

The whole thing was ridiculous. But then I realized that this was the first sudden pain I’d had in my head since the brain hemorrhage. I was re-experiencing the terror of that event without the seriousness that had made me stay in control during the real thing. After a few more gulps of air, I calmed down and stood upright and went looking for Bruce, who had fled to the garage. When I explained my reaction, he hugged me. We agreed the short episode had been a little like being lost in a really scary funhouse—that was me in the mirror, but it was hard to recognize her.

Afterward, I felt the same kind of relief I’d had when I’d learned that my brain hemorrhage would probably not kill me—as if my body were lighter and warmer than before, almost floating. In a few short minutes, I flashed through a month’s worth of emotional phases. And I came again to my resolutions to focus on what’s really important to me. Maybe that’s one thing anniversary syndrome is good for.

Not Sexy, Just Crazy

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Probably every single person who reads this will have made use of at least some of positive psychology’s tenets and recommendations at some point or another: visualize success, believe in yourself, take charge of your life, think good thoughts and good things will come. All fine to a point.

When it comes to discussions of health and illness, though, this makes me crazy. Not sexy, just plain crazy. Yes, there is much we can do to positively affect our health. No, we cannot cure illnesses with positive attitudes and wheat grass, not unless they are psychosomatic.

One of the purveyors of the idea that we can cure ourselves and defy illness is a woman named Kris Carr of Crazy, Sexy Cancer fame. This woman is a charlatan, and yet she has been trotted out by all kinds of experts as an example of a cancer patient who cured herself with her positive attitude and alternative therapies including a vegan diet. She started off with a documentary film about herself and followed that with three Crazy, Sexy Cancer books. She has become a New York Times bestseller, lectured at universities and medical schools, and, I presume, made a killing. She has a huge following as a cancer lifestyle guru.

On Carr’s website she calls her illness merely “a rare and incurable stage 4 cancer.” This sounds dire indeed and is the one and only credential that has given her the right to tell millions how to live. Yet, after the original film, we find in her work very little discussion of the cancer she has: epithelioid hemangio-endothelioma. Her focus is all on nutrition, yoga, support groups, and can-do attitude. However, H.E.A.R.D., a support group for this and other vascular cancers, notes on its webpage that, due to the variable rate of tumor growth in this cancer, “Some cases are totally asymptomatic (no adverse symptoms) for more than 15 or 20 years,” and “some cases … have been known to go into spontaneous remission.”

I don’t mean to say that receiving such a diagnosis would not be daunting and that it wasn’t a meaningful moment in Kris Carr’s life. I don’t object to her writing or making films about her experience. I have done so about my own illness experience, and I have read many truly wonderful and insightful memoirs about people’s illness and disability experiences. It is quite true that illness can be a wake-up call and can affect the life choices we make.

But for her to claim that she cured her own cancer, and for her to note that, “I created the ultimate blueprint for a healthy and happy life, and I want to share my secrets with fabulous you!” is a grotesque trickery. Her blueprint for life dumbs down illness experience and panders to the desperate masses over any kind of integrity and truth-telling. In the film, her own father tells her that he caused her cancer by putting stress on her during high school. Who can take this seriously? It is magical thinking, no matter that there are even physicians, supposed men and women of science, who participate in it.

The variable progression of Kris Carr’s disease has little if anything to do with whether or not someone takes up a macrobiotic diet and takes to meditating. It is simply a variation in the disease. If I can find this out with a few Google searches, why don’t the journalists and physicians who promote this woman bother? How can they not know that this woman is a sham? Or do they know and simply decide that her “positive” message is more important than what ails her or doesn’t? Why would that sort of misrepresentation seem worthwhile to them?

We have a strong social impetus these days to believe stories like this. It’s all part of a highly scripted “reality” TV that has nothing to do with real life and that casts us into a highly social Darwinian universe. Maybe it’s one thing when it has to do with the supposedly democratic selection of the next American Idol. Even when it’s the loonies in Landmark Forum convincing people to pay to be told that they create their own destiny, I can laugh and roll my eyes. The ideas that we live in a meritocracy and that talent rises magically to the top over the advantages of power and wealth seem to be part of the American fabric. I’m used to that.

But when they start talking about health that way, I get angry. Barbara Ehrenreich has noted about her own experience with breast cancer how she became disturbed by the constant celebration of survivors, as though they were somehow better people than the ones who died. David Rackoff, after a second type of cancer before age 50, published Half Empty with an anti-positive psychology twist, and noted, “It is the duty of society to take care of its individuals, plain and simple. We will never be healthier than our sickest member.” Years ago, in a wonderful book called Teratologies, Jackie Stacey noted how the discourse around cancer was designed to make people feel responsible for their own illnesses. As far back as 1978, Susan Sontag’s Illness as Metaphor noted how the discourses around cancer often harm patients further. So, I am not alone, but we are shouted down by the people who want us to believe that it’s all a matter of will power and positive thinking.

I have to keep repeating this to believe that it’s true: in the U.S., people believe that if you are sick it is your own damn fault. If you can’t cure your own cancer with yoga and spinach, then there’s something wrong with your character as a human being, not just your body. If you can’t cure your diabetes (my illness) with herbs and exercise, then you are weak. If you have cancer, you must have brought it on yourself. If you are obese, it is because you are lazy and worthless.

Part of this has to do with our desire to understand causation. Think of the biopic Erin Brokovich and how the title character set out to uncover the poisoning of a California community by Pacific Gas & Electric. The Chromium 6 they had allowed to leak into the ground water had caused rampant cancer. Think of Terry Tempest Williams’ Refuge that outlines the increased risks of cancer to those living in Utah when the A-bombs were tested. Even in terms of responsibility that has a personal (as opposed to corporate and governmental) element, think about cigarette smoking: the National Cancer Institute attributes 440,000 premature deaths a year to lung cancer and other diseases caused by smoking. There are indeed cases where blame can be cast legitimately, though in the case of individuals that may not be a helpful strategy.

One U.K. study I read, for instance, conducted on cardiac patients, showed that many of them blamed themselves for their illness, said they got what they deserved based on their bad smoking and eating habits. They even avoided medical care because of fear that doctors would be disgusted by or dismissive of them and would blame them further. Perhaps most telling, the study found that these attitudes were more common among the economically disadvantaged.

When Kris Carr suggests that you interview your doctor as you would someone you were hiring at your corporation, she breezes over the fact that many health care plans don’t allow such options. I’m all for patients being active participants in their own care, but those who don’t have top-of-the-line insurance and a ton of money in the bank can’t turn their cancer into a full-time “self-transformation” project.

Nor does her story point out that what has turned many cancers into survivable illnesses is not mainly the lifestyle stuff she promotes, but actual new or newly refined detection techniques, medical treatments, and drugs. In the hands of positivity health gurus, causation becomes a twisted story of personal overcoming.

Part of the reason we are so drawn to the overcomers among us may also be that illness has become more complicated, more long and drawn out, more chronic, the causes more complicated. With the advent of antibiotics and vaccines in the 1940s, and the development of effective vaccines in the 1950s and 60s, many long-term lethal scourges—TB, polio, mumps, measles, smallpox, chickenpox—were knocked so far back as to become almost irrelevant in most people’s lives. Nowadays the raging (yet identifiable) germ that comes out of nowhere is a rarity, and contemporary illnesses stem from vague and multiple sources. And they have more variable outcomes. The doctor has no simple cure, so the cure is put on the shoulders of the ill.

Chronically ill people also can be a long-term burden. I myself have been living with Type 1 diabetes for nearly 40 years. It’s understandable that people around me get tired of taking care of me. I get tired of taking care of myself. My illness won’t end until I’m dead, and that could be another 40 years down the road. Recently, in my different kind of medical experience—a brain hemorrhage that fortunately turned out to be benign—I had cause to think about the different kind of care I was getting. The attitude toward this acute illness was heroic and sympathetic—I got round the clock care, myriad expensive tests, a plethora of support from friends and family. But the chronic illness gets boring.

The cost of treating a major illness, whether acute or chronic, is enormous in our current medical system. (My own recent brain event cost well past $100,000, and I and my insurance providers have spent thousands on my diabetes, too.) People who are ill sometimes can’t work or otherwise contribute economically. Sometimes they can’t support themselves. As far back as 1951 (in The Social System), Talcott Parsons pointed out that because of the “privileges” of the sick role, ill people also have the “obligation” to try to get well as quickly as possible, even though Parsons notes they are not held responsible for their condition.

Also because of these privileges, there are many scam artists of an even greater severity than Kris Carr. Every now and then someone without any diagnosis whatsoever is discovered claiming (usually) cancer and putting on a show to borrow money from family and friends and collect donations in public places, including on the web. In an ironic twist, many of these, including Ashley Anne Kirilow, Ann Crall, and Dina Leone, have now been labeled as having mental illnesses rather than physical ones and are still considered in need of help.

And since the ill take so much from the healthy in the way of financial support, emotional succor, and attention, we want them to get better in miraculous ways. If we believe that people can visualize themselves healthy, then there’s a theoretical way for everyone to improve their lives. There is no limit on health—not based on wealth, not based on health insurance availability, not based on health insurers paying for needed treatments, not based on chance.

There are even many so-called political progressives who believe that we are individually in control of our health (and by association to blame if it goes bad), and I wonder how they can fail to see the radical-right implications of that. Oprah Winfrey, one of the biggest promulgators of positive psychology (and one of Kris Carr’s promoters) has also conceived of herself as a crusader for social justice. For Oprah, it seems to be all about “empowerment”—giving people tools for improving their lives. Yet, she doesn’t seem to see that taken to an extreme the implication is that if an individual can’t triumph over illness it’s a personal failure. In other words, it’s a blame-the-victim stance that doesn’t take into account the myriad circumstances that can contribute to failure. I have a great deal of respect for Oprah—anyone who could keep the country reading books for so long has my admiration—but this aspect of her storyline is a huge disappointment to me.

The crux of the fundamentally conservative layer of assumptions in positive psychology is the delusional belief that we humans can control our own fates, not just to some extent, but virtually completely. Perhaps in a world where more and more seems beyond our control, it’s understandable that some people need to feel as though we can determine at least our own bodily fates. And no doubt it’s good to do what we can do for ourselves—I exercise regularly and eat fresh foods, too. But to be a true “liberal,” even just to be a person who is not living in a dream world, we need to remember that, do what we can, illness will come. The body does not last forever. People do not always get what they deserve. It would behoove us not to condemn the truly ill and not to celebrate those who turn their triumph over illness into a claim of personal achievement.

I wish that instead, we could offer support and encouragement to ill people without offering snake oil. I wish that tales of overcoming could be tempered with honoring those who don’t overcome. I wish that the media in our culture would practice some responsibility and not promote shallow, pretty people who have turned illness not so much into insight, but into a business opportunity.

I would rather stand with the people who have died of cancer instead of remaining in spontaneous remission for seven years with no sign of a symptom anywhere. I stand with those vomiting into the basin from their chemo, who don’t look so great with their hair falling out in clumps from the brutal treatments that will extend their lives. I stand with the ones who make meaning out of their experiences and appreciate the good days they have even though they know that cancer is not a gift, that even if a person with cancer sometimes can be sexy, the disease itself never is.

Sugar Love and Sugar-Free Love

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Apple Stack Cake from http://www.thebittenword.com

When I was eleven, going on twelve, I was diagnosed with Type I diabetes. In the hospital for a week, I cried a number of times over this diagnosis—usually when my family members had gone home and I was alone in the sterile room. I didn’t cry over what probably should have given me pause—that diabetes is a life-threatening illness with frequent gruesome complications like blindness, gangrene and subsequent amputation, heart disease, and kidney failure. All of that had not sunk in yet.

I cried for two reasons—I was going to have to take shots every day, and the doctors and nurses had told me that I’d never be able to eat sweets again. That this last was not really true never occurred to me. The medical staff said it, so I believed it.

If you’re not part of the Southern culture, it may be hard to understand how embedded sweets are in expressions of love in that culture, particularly familial love. Both of my grandmothers, and later my step-grandmother, as well, were famous cooks. Sweets were an ineluctable part of every holiday celebration. Giving up sweets in this culture was as hard as an alcoholic giving up booze.

Ironically, I had only just reached an age where two of the main products of my grandmothers’ cooking appealed to me. As a younger child, I’d been averse to the tickly, chewy texture of coconut and so I had not loved the high white coconut cake with divinity icing made by my Grandmother Meek every year or the more unusual jam spice cake with nut-, raisin-, and coconut-studded yellow frosting (known as amalgamation cake) that Grandmother Roney made.

These two cakes were as finicky as I was, and every year there was breath-holding over whether or not they would turn out “just right.” The divinity icing had to be made under just the right climactic conditions, and my grandmother beat it by hand with a wire whip on an oval, white platter for what seemed like hours on end. She would not use an electric mixer because it wouldn’t give her just the right feel for the texture. The cake layers themselves would grow dry if not moistened with just the right amount of coconut juice. The amalgamation cake was every bit as complicated. The thick, jam-imbued layers would fall if any sudden vibration hit the oven at the wrong time, and the icing had to be boiled to just the right consistency. No one but my Grandmother Roney knew all of the secret ingredients. Only years and many failed attempts on my father’s part later, did she confess to him that he should include some oil of cinnamon and oil of clove in the batter.

I myself preferred what seemed like the simpler offerings: dried apple stack cake and prune cake with caramel icing. (Later retitled “caramel plum cake,” the latter became much more popular.) These were also family recipes, but my mother had taken on the baking of them. The prune cake batter made a simple Bundt-style cake, and usually the hand-made caramel icing was the only difficulty. I would watch my mother melt the butter in a cast-iron skillet, add the corn syrup and buttermilk, and stir the foam constantly until it browned. It was hard to get the texture just right, so that it would pour, but not pour right off the sides of the cake. I will still swear that that homemade caramel icing is one of the best things in the world, hands down.

Dried apple stack cake was an East Tennessee tradition, from my Grandmother Meek’s background. But she and my grandfather had established their adult lives in West Tennessee, where dried apples of the right variety were hard to get. So my mother would go to the downtown Knoxville farmer’s market in the fall to get the right kind of apples. These had to be dried outside—by the sun—not in some dehydrator. This was the only thing that would give them the deep maroon color and deep flavor best for the cake. Usually they were sold by little, old country ladies as wizened as the apples themselves, ladies who said, “You’uns’ll like them apples,” and who would count out change with their gnarled brown fingers. On our way home from the farmer’s market, my mother always had that air of deep satisfaction, as though she had everything she needed. My mother had also perfected the recipe by making the tea cake layers thinner and thinner, until instead of five or six layers her cake had twelve. It had become a torte. It would melt in your mouth.

Because the stack cake was already made from a naturally sweet fruit that I was “allowed” to have in modest quantities, and because the tea cakes weren’t very sweet to begin with, it was the easiest one to be adapted for my new diabetic needs. My mother took to cutting back the sugar in the tea cakes even further and stirring artificial sweetener instead of sugar into the apples as they simmered in the big pot on the stove. The result was almost as good as the real thing, and a dollop of unsweetened whipped cream made it a real treat.

And this is what can bring tears to my eyes now—thinking about how all of these women, inculcated and habituated as they were in sugar-as-love, took to adapting things for me and making me special treats for the holidays that I was “allowed” to have.

My Grandmother Roney, a complete sugar addict herself, felt most sorry for me. On top of my mother altering the stack cake recipe, Grandmother Roney adapted cookie recipes and made me Chex mix every year (back before it was available in bags at the grocery store). She took to making spiced pecans, too. My Grandmother Meek took to brewing a pitcher of her famous iced tea “unsweet.” Even my step-grandmother, Billie, took to making me sugar-free boiled custard every holiday we visited . It was made with gelatin and rather lumpy, but its artificially sweet creamy flavor made me feel included when everyone was sipping cups of the real thing.

This, too, was also a Southern characteristic: determination to adapt to circumstances. My grandmothers had it in spades, and my mother and step-grandmother still do. And they gave some of that to me, too, along with all their sugar love and their all-important sugar-free love.

The photo of the apple stack cake is compliments of www.TheBittenWord.com, a food blog that’s also listed in my links. And I’ve also linked to some authentic recipes that approximate the ones I’m talking about. But I’m not giving out the secret family ones! That would be heresy.

The Father of Positive Psychology Isn’t Stupid

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It’s hard to approach an entire field of study in a blog post, and positive psychology is no exception. I hope that over time and multiple posts I can clarify why I find some of its assumptions so disturbing, even though I no doubt attempt to put many of their recommendations into practice myself. It’s practically unavoidable since positive psychology has become so pervasive in our culture in recent years.

However, one thing that happens with any kind of popularizing movement for complex theories is that the ideas get oversimplified, often even dumbed down, denuded of any kind of subtlety that might make them useful. In fact, in the hands of popularizers, such theories often become tools for brow-beating non-adherents and take on cult-like tones.

Martin Seligman, credited with being the founder of positive psychology and a professor at the University of Pennsylvania, started publishing about optimism in the early 1990s. It seems that he grew tired of treating depression and wanted instead to prevent it. In 2002, he published Authentic Happiness, which became a bestseller and rallying cry for the growing minions of positive psychology followers. He still maintains a website with that title that claims “almost 1,975,000 users from around the world.”

Nonetheless, a recent New York Times article now quotes Seligman as saying he regrets this title and is ameliorating his stance on happiness somewhat. I could be completely cynical about this development. For one thing, Seligman has titled his new book Flourish, which seems just as potentially brow-beating as “authentic happiness.” For another, he has a new acronym that seems designed for the over-simplifying satisfaction of the minions. PERMA stands for Positive emotion, Engagement, Relationships, Meaning, and Accomplishment. Some of this has clearly been developed in response to critics of positive psychology who noted that people don’t always behave in ways to achieve happiness and that happiness isn’t the only good.

One of the things about positive psychology that has always bothered me is that it seems to abandon the ill and the poor. It has been much celebrated for moving away from the treatment of pathological conditions to an embrace of higher fulfillment. This is all well and good for neurotic upper-middle-class and well-off people (of which I am admittedly one, too), but it turns its back on a whole host of people who really need help. That Seligman chose to focus his practice on those with the best health insurance and the flushest wallets doesn’t strike me as an accident. Maybe he himself was just depressed by the deeply mentally ill, which is entirely understandable. Many in the general medical field have done just the same, and we have a proliferation of “health care” that is about Botox and cosmetic surgery. On one hand, there’s nothing wrong with this; on another, I thought the goal of medicine was to relieve suffering.

So I’m glad that Seligman is re-incorporating some other values along with “positive emotion.” Scientists must always move forward and respond to legitimate criticism of and gaps in their work, and it’s to his credit that he is doing so. But I also can’t help but notice that Seligman is changing his tune at a time when the economy is dreadful and fewer people are likely to accept the panacea that techniques to achieve simple happiness are the be all and end all. More of us are face to face with people who didn’t deserve to lose their jobs and their homes and whose optimism couldn’t protect them. In a down economy, it’s less likely that your positive emotions will be enough to get you what you want.

At least Seligman is in touch with the reality of this economy. He is at least adapting his marketing plan accordingly. Let’s hope it’s a more substantive reconsideration than just that.

A Beautiful Day with Health Insurance

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November 14, 2010, was a beautiful Sunday, and I talked my husband into taking a bike ride with me. In Florida, where we live, November is filled with clear air and sunshine. Hurricane season is a quickly fading memory, and yet it’s not cold enough to require even a sweater. Bruce and I rode to the end of a nearby bike trail, stopped for water and for me to check my blood sugar, then headed back. As we crested a bridge over a road, I suddenly felt pain like I’ve never experienced before. It was like nails being pounded in all over my head.

Bruce could tell that something was wrong, but he thought I was just dehydrated. “Stop and have some water,” he said.

“If I stop,” I told him. “I won’t be starting again.” I knew it was really, really bad, but it never occurred to me to call 911. We crept slowly another mile and a half home. As soon as I stopped and took my helmet off, however, I felt as though I’d been scalped. I put my hand up, expecting the blood to be running down the back of my head. Then I began vomiting. We went to the ER.

The ER folks were indifferent, assuming I was just another case of food poisoning or stomach virus. Later, the neuro techs would tell me that ERs are terrible with neuro cases. But with a little help from my endocrinologist, and some insistence from me, we managed to get seen fairly quickly. The ER doc asked me how my pain compared to having my hand slammed in a car door. Worse, I said, far, far worse. His smile fell just a bit.

The initial CT scan showed bleeding in the brain, and the doc transformed from cavalier to grim. When he gave this news to my husband and me, I knew I might die. That’s what a brain hemorrhage meant to me. The only person I knew who’d had one was the young brother of a high school friend of mine, who had survived all kinds of surgeries and treatments for other health problems and finally had been given a clean bill of health, only to drop dead of a brain hemorrhage as a teenager. I told myself that had been nearly thirty years ago, but my husband had tears in his eyes, and the nurses were prepping me for a trip to the main hospital on a helicopter. The pain would not stop. As they wheeled me out and put me in the helicopter, I looked up at the now-night sky and a gorgeous moon. I asked La Luna to let me live. Then they put the ear protectors on me and off we went, flying through the dark on what seemed a big Vibra-bed.

Within a few hours, we knew that, although I wasn’t completely out of danger, I had a better chance than most of being okay. The first angiogram revealed what they thought was a “benign perimesencephalic sub-arachnoid hemorrhage.” SAHs kill 40-50% of people who have them, but the type I’d had meant that they found no large aneurysm waiting to kill me, just some unexplained bleeding near the brain stem in between the pia and arachnoid membranes that surround the brain. The initial diagnosis was correct, and although I spent ten days in the hospital being re-tested and monitored for complications, and nearly a month on anti-seizure and anti-stroke medication, I escaped unscathed except for the ten pounds I gained lying around on the couch for a month.

The hospital where I stayed is a Seventh Day Adventist hospital. They were wonderful to me. The food was awful, but the nurses and doctors were attentive and caring and kind and seemed to have a real sense of mission. I felt throughout that I was very well taken care of. (And I am not always so sanguine about health care I receive.)

But one of the nurse’s aides mentioned to me that God must have some plan for my future, that I must have survived this terrible ordeal for a reason. A few days after getting out of the hospital, I went to my regular G.P. for a check-up, and his nurse told me about her sister’s brain hemorrhage. She survived, but suffered some irreparable brain damage. The nurse noted, however, that it “had brought her back to God,” and for that she was grateful. “If it had to happen to bring her back to God,” she said, “then it had to happen.”

This is the Everything Happens for a Reason stipulation of much of the positive psychology movement as well as much evangelical Christianity. I don’t believe it for a minute. While many who spout this sort of thing do so with good intentions, the implications are radically unjust: that those who die have nothing left to live for, and that we get what we deserve in terms of our health. This is the underpinning of arguments against health-care-system reform in this country these days, and it is hogwash. A 2009 Harvard University study showed that 45,000 Americans die each year from lack of health insurance and that Americans under age 65 have a 40% higher chance of dying if they don’t have health insurance. I will say it over and over: the poor are not poor because they deserve it, and the ill are not ill (generally speaking) because they have brought it on themselves. What is more, the rich are not rich because they are smarter and worked harder than everyone else, and the healthy are not morally superior, no matter how well it serves them to delude themselves into thinking so.

I was lucky that I had the kind of brain hemorrhage I had, and that my husband and I had the good sense to seek medical help. I was lucky to be well enough employed that I had health insurance that assured my treatment and didn’t leave me with more than $100,000 of debt. That’s all.

I do believe, however, that this terrible ordeal intensified my appreciation for life. I may be able to make use of that intensification to achieve more or be more considerate of loved ones, even of myself. Without the pain, without the fright, I might have muddled on for a few more years without examining the triviality of my daily obsessions. I might not have made time for who I really am, but stayed busy trying to meet others’ expectations.

Illness is a rallying call to appreciate the extent of one’s good health, whatever that may be. It puts us on notice that life really is short. Without the experience of pain, I might not appreciate all these pain-free days I’ve had since. The same goes for pretty much all of the polar opposites that we talk about: wealth and poverty, friendship and loneliness, and so on. And it is one of the main reasons why I believe that “happiness” cannot exist without sadness, nor joy without sorrow. I believe that we should not insulate ourselves against the world of hurt that is out there. I’m not saying to seek out pain for its own sake (that’s masochism), but to remember, to care, to keep in mind that having and not having are not matters of mere deserving, no matter how lucky we may be today.

It’s a Beautiful Day

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U2’s song is generally happy and upbeat, but it’s an example for me of how personal associations can account for at least part of the emotional attachments and reactions we have to songs. This song is one I heard a lot a few years ago in indoor cycling classes at the Y. I had recently moved to Florida and was in a new life over my head. I was being bullied at work and facing the truth about some less-than-ideal career choices. I was lonely in a strange city. But I was also still in a phase where I believed I could do anything I set myself to do. When “It’s a Beautiful Day” would come on toward the end of a spin class, I would sprint to the finish, strong.

So, with the encouragement of the greatest spin teacher in the world, a fellow who went by the nickname of Z, I decided I would train for an outdoor charity bike ride. Z’s business sponsored races, and he encouraged us to get out of the dark room and ride real bikes outdoors. I knew I couldn’t realistically race, but I could ride. So I signed up to do 50 miles for the American Diabetes Association’s Tour de Cure.

This was pretty momentous for me. Although I have always been active, I have never been athletic. I don’t believe I’ve ever competed in a sporting event. Oh, that’s not true. I won a red ribbon in a horse show once when I was twelve or thirteen. There are many people with Type 1 diabetes who do compete and who are athletic, but for me the illness itself was always enough of a physical challenge. I rode horses, I jogged, I walked, I hiked, I practiced yoga, I even lifted weights to stay in shape, but I never took it a step further.

Z inspired me to do so, and a couple of my indoor cycling pals signed up for the ride as well. One of my graduate students signed up. My old friend Sally, who is a real athlete, decided to come down from Maryland and ride with me. I “trained” for several months, which included many long weekend rides with my then-boyfriend, now-husband. It was a great time for me—all the support, the sense of accomplishing something new even though middle aged, the power of being fit, and the drawing attention to a good cause.

The day of the race dawned chilly and windy, and I was filled with doubts that I could do it. Who was I kidding? I was terrified of traffic, and this ride wound through country towns outside of Orlando, filled with barking dogs and intermittent traffic, stop lights and unclear turns. The people managing the race were completely uninterested in the fact that they had a diabetic riding for diabetes—and it was clear that most of the people riding did it for the riding not the cause and that it was a macho culture. Perhaps worst, the snacks provided along the way were cheap and disgusting—dry cookies and brown bananas—and I knew that I’d have low blood sugars.

But we all persevered. I nearly fell off the bike once at a stop light where I forgot my feet were clipped to the pedals. My blood sugar did reach a low point of 55, and I had to ride on, shaking and sucking on a juice box. And Sally decided that the 100 miles she’d signed up for were too much. But we all made it to the finish, where better snacks and massages awaited us. It was a triumphant day.

Unfortunately, within a few weeks I’d developed a painful condition called adhesive capsulitis or frozen shoulder. Months of medical mistreatment and long, sleepless nights of pain later, I was a walking zombie and as out of shape as I’d ever been. In the three years since, I have seen orthopedists, osteopaths, physical therapists, and medical massage therapists. And I finally found my way to swimming, which always helps loosen up my permanently stiff shoulders. I have continued to exercise, but only off and on, never as steadfastly as in my training phase.

So when I hear “It’s a Beautiful Day” now I am reminded of that great season in my life, but also that I no longer am there. Sometimes it makes me feel terribly old, as though I’ll never be in such good condition again. I can get a tear in my eye thinking about the regret implicit in “Don’t let it slip away” and the over-compensation in “What you don’t have, you don’t need it now, What you don’t know, you feel somehow.”

But I also get tears of determination in my eyes. One of the great things about Z as a teacher was that he recognized the challenges we each faced. To me, he would always say, “Roney, you’re an animal. You never give up.” And he would tell me that it wasn’t triumph that mattered, but coming back again and again even though I’m not the perfect athlete and never will be.

First Tears

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We usually think that babies are born crying. And for most of us this was undoubtedly true. Some of this stems from the tradition of doctors slapping babies on the behind to start or confirm their breathing, and the need for this was augmented by the introduction of drugs to alleviate the pain of a woman giving birth. The advent of chloroform for this purpose in the 1800s and the use of the “twilight sleep” of morphine and scopolamine in the 1950s, 60s, and 70s (perhaps even the use of epidurals now) led to an increased risk that a baby might not otherwise breathe properly because some of the drugs often got into the baby’s system as well as the mother’s. Today it’s more likely that a baby will be vigorously rubbed with a towel than held upside down by the ankles and whacked on the bottom.

Since the 1970s, various takes on natural childbirth have attempted to make the birthing process less traumatic for the baby as well as the mother. These include creating atmospheres that are dim, warm, and quiet, and leaving the umbilical cord attached a little longer so that the baby can still get oxygen that way and make a more gradual transition to air-filled lungs. There are even those who give birth in water, supposedly easing the transition from the fluid-filled womb. Sometimes babies grunt and growl or simply gasp rather than crying, and as long as the baby is pinkly oxygenated and breathing deeply to fill all the little newly inflated alveoli in the lungs, it’s perfectly healthy.

Even today, though, most babies cry at birth. Some even cry before they are quite out of the womb, perhaps giving credence to the idea that traveling down the birth canal in itself is uncomfortable. Other theories of why babies cry involve the startling experience of encountering cooler temperatures, noise, and light. Some note that babies’ crying is their first communication that something is wrong–at least that they are cold, and maybe also scared of all the hubbub. Our first method of communication is definitely crying, and it is the prime way that infants get what they need.

“Crying doesn’t indicate that you’re weak. Since birth, it has always been a sign that you’re alive.” –Anonymous