Cancer

Minding our health

If chemo fails, there's always positive thinking, or so we'd like to believe. Medical historian Anne Harrington looks at our persistent faith in curing ourselves.

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Minding our health

If you have ever observed a workaholic boss barking orders at an underling and thought, “That dunderhead is headed for a heart attack,” you’ve dabbled in mind-body medicine. If you’ve ever told a sick friend to “think positive,” implying that she’ll feel better if she just stays focused on the bright side, you’ve ventured there, too.

Mind-body medicine is the belief that thoughts and feelings have the power to both sicken the body and heal it. In “The Cure Within: A History of Mind-Body Medicine,” Harvard professor Anne Harrington traces the migration of this idea from the alternative-health margins into the mainstream. The chairwoman of the history of science department at Harvard University, Harrington is less concerned with debunking dubious theories about magically thinking yourself well than she is with understanding where these beliefs come from, how they shape our experience of illness and why they persist.

Her captivating survey ranges from 19th century hypnosis to 1950s self-help books about the power of positive thinking to contemporary efforts to understand what happens to the brain during meditation by hooking Buddhist monks up to MRI (magnetic resonance imaging) machines. New theories about the mind’s impact on the body emerge and old ones are reconceived — even stress turns out to be a recent invention — as each era grapples to make sense of illness, and sick patients, let down by the medical establishment, seek out alternatives.

Salon spoke with Harrington by phone from her office at Harvard in Cambridge, Mass. Listen to a podcast of the conversation by clicking here.

What is mind-body medicine?

It’s a lot of different things, and that’s what makes it both interesting and controversial and why people fight so much about it. Mind-body medicine is a patchwork of ideas about the way in which we think that our minds make us sick, and might make us well. The big ideas influence how we think about disease, how we seek out different care for ourselves, even how we experience our bodies in health and illness.

Let’s take one of those ideas — the power of suggestion. When was its heyday?

The power of suggestion emerged in its modern form in the late 19th century around efforts to make sense of hypnosis, in which certain kinds of people, in response to the instructions of a powerful authority figure, like a doctor, would experience changes in their bodies — they might sweat, they might become paralyzed, they might do ridiculous things. The interpretation was that they were responding to the instructions of this authority figure, that this was an interpersonal drama.

But the interesting thing about the power of suggestion in hypnosis is that it’s an emergent product of a much, much older interpersonal drama that actually goes back to medieval times, the drama of the exorcist who exorcises demons from the bodies of possessed people and exerts control over the demon. It was felt that demons had to do what the exorcist said, just as we believe we have to do what the hypnotist says.

So the hypnotist is a secular version of the exorcist?

Yes. Maybe that helps to explain why there is still this frisson of anxiety and mystery around this kind of interpersonal drama. There’s a deep historical memory of the more mystical or supernatural authority that these kinds of people used to hold over patients.

How does the power of suggestion exhibit itself today?

In our fears around placebos and the effects of placebos.

The placebo effect was initially understood to be powered by the power of suggestion. They’re inert pills or tonics or powders — why do they work? Well, they don’t really work, but patients think they work, and they think they work because their doctors tell them they’re going to work, and it’s really just suggestion.

Since the early 1980s, our thinking about the placebo effect has undergone a sea change. We now think if you take a placebo, and you believe it’s going to work, your brain is going to change, and that might in turn lead to a cascade of effects that will cause your body to heal faster.

Our thinking about the placebo has shifted from the power of the authority figure to the power of our own positive thinking?

That’s how I see the history. There was a self-help book about the placebo effect that said the placebo effect is the good news of our time. You can be cured by nothing but yourself. So now we attribute the effects of placebos to ourselves and how our own brains change. We see it as an empowering thing, as opposed to maybe 60 or 70 years ago, when we saw it as evidence of our susceptibility, our vulnerability to the influences of others.

Where did this notion of the power of positive thinking come from?

Well, the deep roots lie way back in biblical promises that if you have faith, you can be healed through faith.

People said: “Look, if the Bible tells us we can be healed through faith, then why not really take it at its word, and cultivate faith?” Chant mantras. Visualize. Do all the things that we now think of as New Age tricks. These go back to the middle-to-late 19th century.

How is the power of positive thinking still alive today?

It’s still very much alive around our belief that we can use placebos to heal ourselves. Yet the power of positive thinking actually, just a couple of months ago, received a setback. In December there was an article published in the medical journal Cancer that claimed [the researchers] had attempted to see whether or not emotional well-being and a particularly positive attitude had any influence on the course of cancer. There was no effect.

I think people hold onto this belief in the power of positive thinking because there is a kind of moral — not only a scientific, but a moral — persuasiveness to this idea that if you believe, and refuse to admit defeat, you’ll be rewarded for that. The power of positive thinking has really taken hold in areas where there are no quick fixes in modern medicine. So cancer has been a very important area.

You write about how it was once thought that being in a support group could extend the life of a terminal cancer patient. Even though that notion has since been debunked by numerous studies, it still exists. Why do you think it’s such a persistent idea?

Love heals. This is yet another story about how friends are the best medicine. Community heals us not just of that which ails our souls, but maybe of that which ails our body. And, to be fair, there is a fair amount of epidemiological data that suggests [community isn't just about] wistfulness or nostalgia over some vision about what life used to be like before we all became disconnected and lonely.

Epidemiological data suggests that people who are more embedded, who are married, who go to church, who claim to have more friends tend, on average, to be more resistant to the slings and arrows. They live, on average, longer. What has experienced a blow is the idea that you could operationalize this idea by turning it into a therapy for people who are already very sick. In other words, you could take heart patients or take people in an advanced stage of cancer and put them in support groups and give them the community that they should have had all their lives.

That you could institutionalize community.

Yeah, you turn it into a kind of medicine, and a 90-minute dose a week might extend a person’s life. Originally, there was a clinical trial by David Spiegel at Stanford that suggested it was possible to do this. An initial study seemed to indicate that women with metastasized advanced-stage cancer who participated in a support group for 90 minutes a week lived on average twice as long as those who didn’t. But he hasn’t been able to replicate, and others have not been able to replicate.

How did the idea come about that certain personality types get particular diseases?

We all know about these ideas. You tell me — the guy who blows his top constantly, is constantly screaming at his employees, what’s he going to die of?

A heart attack.

And the woman who constantly lets herself be a doormat, and lets her husband abuse her, and says, “Don’t mind me, I’m just going to sit in the dark, and not bother anyone.” What disease is she likely to get?

Cancer.

The idea that repressing certain emotions can make you sick in very specific ways comes from the Freudian legacy. Psychoanalysts thought there was a relationship between the kind of personality you have and the kind of neurosis you would develop — certain personalities become obsessive or become anxious or become depressive. Some within the Freudian tradition extended this way of thinking to physical diseases. A woman named Flanders Dunbar became particularly influential in developing this idea that there were personality types more prone to developing certain kinds of physical disorders.

Everyone has heard of accident proneness. She coined this idea that there was a certain personality type that was more prone to falling down stairs or to crashing a car. This was taken very seriously in its time. Articles in the popular press said that we need to know about these things, because the number of accidents on the highways is rising sharply and we don’t understand what kind of unconscious, repressed rage might be responsible for a great many of them.

How has this held up? I mean, obviously, these ideas have continued in the popular imagination, but what about in the medical world?

There are still some people who believe a type of personality — depressive and emotionally repressed — might be associated with a greater susceptibility to a poor outcome of cancer. But people are not so likely to talk about cancer-prone personalities [as] they were even a decade or two ago. And when they did talk about it then, they made a great point of insisting, “We’re not blaming you. This is empowering, because if you know the kinds of personality or behavioral style that might cause you to have a bad outcome, you can change them.”

There’s that great Susan Sontag quote: “Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it.”

That’s right, and this is what is said over and over again by critics. You know about the idea of the Type A personality?

Yes.

When I talk to my students here at Harvard, everyone has heard of Type A. The interesting thing is that none of my students know that it was supposed to make them vulnerable to heart attack. They’re all Type A. They’re Type A because they’re workaholics, and they’re really stressed and they drive themselves. For them, it’s a badge of honor. But back in the late ’50s, when this idea was originally developing, the argument was that this personality type was at greater risk of succumbing to heart disease. By the ’80s, the data didn’t really hold up. This personality type tended to include people who were kind of angry, hostile and cynical in addition to being workaholics. And it was claimed that it was cynicism and anger that actually induce the heart disease, not the workaholism.

I was fascinated to read that stress is really a modern invention. Where did it come from, and what did people think they were suffering from before?

People suffered from exhaustion, they didn’t suffer from stress. And becoming exhausted, what was widely called neurasthenia, was not the same as suffering from a disease of stress. Instead of becoming all wound up and at risk of cracking, people would take to their beds. They wouldn’t be able to bear any bright lights or surprises. They suffered from various kinds of stomach ailments and skin rashes, but it didn’t look like our stress.

The language of stress and the whole understanding of how you’re supposed to feel when you’re stressed emerge only after the Second World War, out of new ideas coming out of the laboratory of what happens to animals’ bodies when they’re faced with a threat — the “fight-or-flight response,” which was a product of the ’20s and ’30s. It gets married in the context of the Second World War with concerns about the intense challenges that were being faced by the soldiers, particularly bomber pilots. Out of military anxieties and laboratory data and a general sense in the postwar era that the world was becoming very fast-paced and that American men, in particular, were suffering from the capitalist grind, stress was born.

It’s not just that people didn’t have the word “stress” for what they were experiencing — they were actually experiencing something different from what we would call “stress” today?

It’s possible. It’s possible for our bodies to have a history, for the way that we experience the distresses of our life to change in accordance with what our culture tells us are the rules. I wasn’t alive in the late 19th century. I can’t emphatically say, “Absolutely, and here’s why.” But I think there is good reason to at least take that possibility seriously, that the inner experience of distress shifts according to the story that we live in.

Don’t patients often turn to mind-body medicine when they feel let down by conventional medicine, as in the early days of the AIDS epidemic, or the holistic response to cancer in the ’80s?

Exactly. Mind-body medicine is always living alongside and in the cracks of the dominant approach to disease and healing that we have in our culture. Mainstream medicine says leave your mind out of it, you’ve got a bodily disorder, and we’re going to cure it with some kind of physical intervention. And mainstream medicine is often pretty good at this. So as long as it’s doing its job very well, a lot of us are very happy to embrace it.

When do we find ourselves being tempted by or drawn to the other understandings of mind-body medicine? It’s often when mainstream medicine lets us down or can’t provide therapies. Often around chronic disorders, it doesn’t seem to do justice to all the complex ways in which our diseases are more than just diseases, [in that] they’re part of who we are. And we need to make sense of them as part of who we are.

There is a sensibility of discontent that runs through mind-body medicine, a sensibility of being a rebellious alternative, and therefore it attracts patients who are discontented and inclined, perhaps, to feeling rebellious.

Where is mind-body medicine influential today?

There is a lot of interest right now in meditation and the ways in which advanced practice of meditation might be able to sculpt the brain. It links to new ideas about neuroplasticity, about how a meditation practice might be able to rewire the brain in ways that might make people happier and healthier.

Some of the best science may be happening in slightly quieter, less sensational ways than some of this meditation stuff. Neuroimmune interactions might prove to be very important for pushing thinking forward, but certainly where the attention is now is around monks using MRI machines and what they might teach the rest of us about our human potential.

Do you think there will always be a give-and-take between mainstream and mind-body medicine?

I think part of it will always remain by design and by desire outside of the mainstream because large parts of it want to be the face of medicine that defies what the mainstream says is possible. It wants to resist and rebel and offer alternatives. I think there would be huge disappointment if it were ever really embraced by the mainstream, because it would have ceased to be that rebellious other that people perhaps need.

Being an alternative is part of the attraction?

Yes. There is a version of this that wants to talk about more spiritual factors and quantum factors and things that I don’t even particularly understand. It pushes beyond even a naturalistic frame of reference and begins to make what I would consider paranormal claims.

Some aspects of this might get mainstream, and then there will be people who would push it back out again, challenging a view of ourselves that places limits on ourselves.

A view of ourselves that sees us just as bodies or physical things?

I think so. There is a version of mind-body medicine that sees healings that may or may not be possible as evidence that we’re capable of far, far more than those narrow-minded medical doctors or scientists are prepared to see.

Kate Hudson’s cancer horror show

The bubbly actress's horrific movie, "A Little Bit of Heaven," turns terminal illness into a twee joke

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Kate Hudson's cancer horror showKate Hudson in "A Little Bit of Heaven"

Ladies and gentlemen, we are gathered here today to mourn a sad loss. A luminous, unique presence who ably graced our lives and then was snuffed out far too early. A moment of silence, please, for Kate Hudson’s career.

It seems like only yesterday we were beguiled by the lively, bohemian Penny Lane in “Almost Famous.” But it’s been a painful decade since, as I know many of you gathered here can bear witness. Those of you who steadfastly supported Hudson over the years, who paid good money for “Bride Wars,” for “How to Lose a Guy in 10 Days,” for “Raising Helen,” “You Me & Dupree,” “Fool’s Gold,” “My Best Friend’s Girl,” “Alex and Emma,” “Le Divorce,” and “Something Borrowed” — you know what I’m talking about. You’re heroes for sticking around this long. That’s why it’s both tragic and necessary to come to the end of our journey now, to let her go off to a better place. The D-list. It’s called “A Little Bit of Heaven.”

The movie, which opens in theaters Friday and is available on demand on iTunes, tells the story of Marley, a free-spirited young New Orleans advertising executive. Marley has good friends — including a pregnant lady and a gay black man, because she’s awesome. She has an adorable dog and a penchant for casual sex and whimsical bike riding. But no sooner can her pals offer a champagne toast celebrating the “youngest and hottest vice president” in her company’s history than things start to go terribly wrong. Like millions of helpless white people every day, Marley begins having visions of a cool African-American as God. There is no known cure. Once Marley starts chatting with Whoopi Goldberg in that ethereal, cloud-heavy set, you know she’s in trouble. She’s got terminal Movie Cancer. Naturally, this is the perfect opportunity for her to get in touch with her feelings, have many scenes of hugging her crying costars, and start banging Gael García Bernal. It’s a little weird because he’s supposed to be her oncologist.

It’s not easy making entertainment out of cancer. Yet Showtime’s “The Big C” has mined the terrain to Golden Globe-winning effect. Llast year’s “50/50,” based on writer Will Reiser’s real experiences as a young person suddenly diagnosed with a potentially fatal diagnosis, became a critically acclaimed sleeper hit.  And when you’ve got a condition that will directly affect roughly 41 percent of us, there’s surely some dramatic and comedic resonance to be found in the subject matter. Speaking as someone who has had Stage 4 cancer and endured a clinical trial, and who believes firmly that anyone who’s been through all that ought to at the very least get to bang Gael García Bernal in the Big Easy, I am the ideal audience for this movie. Why, then, somewhere around the inevitable shopping spree montage, did I scrawl the words “WORSE THAN CANCER” in my notebook, and then underline them fiercely in the darkness?

Maybe it’s the way Bernal, as a doctor with seemingly zero ethical problem about sleeping with his terminally ill patient, says “schmuck” – because he’s supposed to be Jewish. Maybe it’s because Kathy Bates, as Marley’s mom, looks like she’s trying so hard with such unforgivable material. Maybe it’s because the biggest audience laugh of the whole movie came when Hudson said, with a straight face, “Come on, Doc. Level with me.” Maybe it’s because when Peter Dinklage, as a male escort, says the title of the movie, it turns out it’s his character’s nickname. Little Bit of Heaven. Oh, human suffering. Truly, this is what it looks like.

Mostly, brothers and sisters, I think we know why this movie causes a pain all the medical marijuana in the world can’t make a person forget. It’s Hudson. Hudson, whose character ostensibly goes through chemo, yet never loses a bouncy curl off her blond head. Who enters a trial but quits with a shrug about “quality of life.” Hudson, who, thanks in large part to director Nicole Kassell and first-time screenwriter Gren Wells, willingly put herself in a movie about cancer that seems to have been created by people who’ve only had cancer described to them. Hudson, who chose to place herself in the pantheon of life-affirming doomed sick girls like “Sweet November’s” Charlize Theron and “Autumn in New York’s” Winona Ryder and the mother of them all, “Love Story’s” Ali McGraw, and comes across as a shrill, affected parody of her hair-tossing Almay ad persona.

It’s an occupational hazard that any actress with marquee value will sometimes find herself in romantic schlock. Yet women like Renee Zellweger and Sandra Bullock have managed to balance their turkeys with riskier performances and a broader range of films. Hudson, in contrast, has remained frozen in time, forever doing variations on her young rebel with a heart of gold, Penny Lane. So let us remember Hudson today not as the husk of an actress she became, endlessly subjecting moviegoers to lazy dreck. Let us remember her as bright, fearless Penny. She’d want it that way. Let us move on, and spare ourselves the ordeal of further films in which a daffy blonde flashes a megawatt smile and recites terrible dialogue and dances adorably even though she’s, like, dying, you guys. For truly, life is much too short for such trials.

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Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Lessons of a baby bucket list

Avery Lynn Canahuati accomplished a lot in her six months of life. Imagine what the rest of us can do in a lifetime

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Lessons of a baby bucket listAvery Lynn Canahuati (Credit: http://averycan.blogspot.com/)

What have you accomplished since November? What dreams have you fulfilled? In that time, Avery Lynn Canahuati threw out the first pitch at a baseball game, got a letter from the president and dressed up like a troll doll. She experienced deep love, and changed the lives of her family and friends. And that’s just what Canahuati got done in the first six months of her life. They were also the last.

Canahuati was born in Texas on Nov. 11. This past Good Friday, she was diagnosed with spinal muscular atrophy (SMA), a group of rare neuromuscular diseases that, in her case, were terminal. “We asked our doctors specifically if there is anything. Is there trial drugs, anything out of the country?” her mother, Linda, told CNN this week. So after “sitting around for two days crying and being devastated, since there is no cure and there is nothing we can do,” her father, Mike, decided to make the most of what was left of his daughter’s cruelly brief expected lifespan. Writing in Avery’s voice, he created a blog — and set a few goals.

“Imagine you’ve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?” Avery’s blog reads. “This has become my reality. But before I die, there’s a few things I’d like to accomplish … this is my bucket list and my story.”

During an adventure riddled with so much good humor, so many images of smiling, laughing people that it’s damn near impossible to read about it without dissolving into a sobbing, balled-up wreck, Avery and her family went about achieving the feat of simply “celebrating life.” Avery’s objectives were as seemingly mundane as to “stay up past midnight” and “keep smiling even after surgery” — and as grand as raising a million dollars to fight SMA. Along with good-natured jokes about man-purses, hospital cribs that look like “Lockup: Texas Children’s” and insanely cute pictures of a smiling baby with a chick fuzz hairdo, are the harrowing realities of life with a fatal disease. There were tubes and operations and weight loss and reflux issues that affected her breathing and swallowing.

For all the items Avery got to cross off her list in just a few brief weeks — “eat ice cream,” “meet someone else with SMA” — there are many she didn’t. She didn’t, as she’d written she’d hoped to do, graduate college. Or get married. She didn’t play in a softball game or ride a Ferris wheel or attend a birthday party. She died suddenly on Monday afternoon, when, as her father wrote later, “one of her lungs collapsed and she went into cardiac arrest.” And one last time in Avery’s voice, he wrote that her final dream was “spreading awareness and helping to fund a cure for my friends.”

We live in a mortality-denying culture. Just this month, an Aflac WorkForces Report announced that “sixty-two percent of U.S. employees say it’s not likely they or a family member will be diagnosed with a serious illness.” Yet disease comes for many of us, and death comes for everybody. That’s not an abstract concept. It’s the truth. I didn’t always get it, either. But I certainly understand that much better now than I used to, after watching a few of my loved ones die over the past year while my best friend and I faced our own life-threatening cancers. And I’ve got to say, death really clarifies the hell out of one’s to-do list.

Avery’s goals were not her own, of course. They were the ones her parents set to maximize her remaining time. But it’s easy to see in her photos what a cheery, friendly baby she was, and the ways in which her sunny nature inspired others. It’s easy to see a mother and father who could have become embittered by a devastating twist of fate, who instead chose to fight fear with love, pain with compassion, who are trying to use their loss as a means of raising awareness and doing service for others. They did it in a matter of weeks. Think of what the rest of us could do with a few decades.

You shouldn’t have to wait for a diagnosis to consider the possibility that you are going to die. You are. Maybe even in the next six months. The question is: What will you do with the time you have left? Will you eat a cupcake, get a kiss? Avery did. Will you reach out and connect? Will you love and be loved? Will the ones you leave behind be able to call your life a “celebration” too? As Avery and her parents tell us, “You can live life dying or you can die living life.” Imagine you’re on the clock. Start acting like it. Go.

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Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Words we had after he died

When we lost my husband to cancer, my family's world went upside down. We made sense of it the best we could

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Words we had after he died (Credit: Tinga via Shutterstock)

On the day my husband died, our daughter Allison started screaming my name from her bedroom, where she’d taken refuge. I burst open the door, imagining she had hurt herself, but she was just standing there in the center of the room. “Mom. Mom,” she said. “You are a widow now. A widow. I don’t want you to be a widow. You can’t be a widow.”  I had to agree: It just didn’t seem possible.

I tried to hold her, but she was hyperventilating a bit. “I’m ‘the girl whose dad died when she was 13′?” she choked out. “Oh my God. That’s who I am now.  When people ask me what my dad does, or how we get along, or anything, that’s how I will have to answer: ‘My dad died when I was 13.’”

Words. Labels for things, for people. We spend our whole lives making sense of them, I guess. Figuring out which one is the best, most accurate choice.

So many words become insider jargon in families: We are the only ones who know that “black toast intolerant” means “lactose intolerant”; that “minimisize it” means “minimize it,” which big pot is the “pasta pot.” These special languages that families create are another way they are individualized, that a family becomes a unique organism of its own.

Of course “widow” cannot apply to me. That word applies to little old ladies in fairy tales or someone who lives far, far down the street. My daughter cannot be identified forever by this one event.

But she is, and I am a widow, and in the months immediately afterward, we preferred life in the anonymity of Philadelphia over our small South Jersey town where even going to the convenience store means acquaintances’ pseudo-counseling, or others who steal quick looks at us, then look away, as if we are contagious.

We spent weekends in Philadelphia, and even though we live 15 minutes away, we slept on the floor of my brother’s one-bedroom, three-story walk-up, rather than in our own beds in our own four-bedroom, three-story home.

The kids learned that word, “walk-up,” and the phrase “wiz wit,” to get cheese sauce and onion on their cheesesteaks, and though they already knew what a contortionist is, and what break dancing is, and what a bong is, they get to see all of these things in Rittenhouse Square Park,  mere blocks from my brother’s place.

They learn these words because I could not sit my children down and say, here are words that changed your life: PICC line, ascites, carcinoid.

When Don was in and out of the hospital, and I learned more and more about his disease, its treatments, their side effects, I thought about language a lot, how I now knew all these words I had never even heard before. The gastroenterology team had to be updated about what the oncology team had said, and the interventional radiology people needed to know his newest albumen levels. There was a note in Don’s chart, “Ask the wife.”

“The wife”: my old label.

I would sit in the hospital and think about when we were first looking to buy a house, and how I was so proud when I could “speak real estate.” We would go out each evening with our real estate agent and look at six, seven houses a night.  I sat on the window seat of one home, nursed our baby Allison, and Don did a slow walk around the perimeter of the yard.  He came in and saw us there, and said, “Oh, so this is the one.”  And everything felt right and rich and I wanted to go to sleep right there, on the bare wood of the empty house that just that moment had become our home.

Once the house was ours I would wander around Home Depot and marvel at the language spoken there, how I felt like some mole who had just come up from underground to discover a whole other world going on above. The “wife” label, the “mother label,” the “homeowner label” all new; none felt generic, at least to me, they were points of pride and exactly where I wanted to be.

About two months after Don died, the kids and I were at a friend’s beach house and we watched the new version of “Freaky Friday.”  In it, a widow remarries, much to the teen daughter’s (initial) dismay.  When the movie was over, Hayley, 11 years old at the time, said, “Mom. You can get married again. In three years. Don’t get married again for three years.”

Allison stood up and just started yelling at Hayley. “She can’t get married again in three years. She can’t get married again ever. I’m not going to have a stepdad.”  Christopher, only 5 years old, said, “I would like a dad, Allison.”  Allison yelled at him, too, and soon I was saying, over and over, “We don’t have to talk about this right now.”  And none of us could understand what the other was saying.

When Allison was 5 or 6, the boy from across the street, a year older and therefore much wiser, took it upon himself to teach her how to properly pronounce “yellow.” She said “lell-o” and I hadn’t had the heart to correct her. The charm of her mispronunciation mattered more to me. I listened from the kitchen as he broke it into two syllables and made her repeat, again and again, “Yell-oh, yell-oh.” I wanted to rush in and stop him but knew that I couldn’t, that it was time, that it was natural and organic and even lovely that another child would teach her.

In other words, I couldn’t stop her learning, like I can’t stop this, can’t take away this label, this horrifying application of the word “widow,” of the phrase “my dad died when I was 13.”

Life went on and when I’d be out with the kids one or the other would say, when it seemed like all the other families had a mom and dad, “I hope people don’t think we’re divorced.”  Divorce implies decisions, and no choice had been made in the shape of our family.  The use of “we” was endearing to me, and only made my heart break more.  We would go places with my brother Steven and waitresses or ride attendants or whomever would assume that Steven was my husband/their father, make some kind of reference like, “You’ll have to ask your father” when a child asked for more Coke; none of us corrected these ignorant strangers.  The kids were simply more comfortable when we had that male figure with us, when we looked “normal” to the outside world.  They needed my brother as a placeholder for what was missing.

I have my label and the kids have their phrase, “my dad died when I was 13,” or 11, or 5. I fill out forms and I get irritated when the choices are “married” “single” or “divorced.”  But when “widow” is an option — even now, seven years later — I think of that first day and Allison’s horror at the term. The kids are now old enough that they have to sometimes fill out their own forms.  They tell me they sometimes write “deceased” and sometimes just cross the father’s info section out. I didn’t know when to take off the wedding ring or what to do with it when I did.  I don’t know when the transition happens between being a widow and being widow-ed.  The label is the label no matter the verb tense.

I have been dating someone for five years and I still choke on the word “boyfriend.” I could not even bring my tongue to the roof of my mouth for the word “love.” I asked my therapist why, when friends all around me profess love within the first two weeks of a new relationship. “What is wrong with me; why can’t I say it?” And she said, “Because you know what it means.”

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Kathleen Volk Miller is co-editor of Painted Bride Quarterly, co-director of the Drexel Publishing Group and an Associate Teaching Professor at Drexel University. She is a weekly blogger (Thursdays) for Philadelphia Magazine's Philly Post and is currently working on a collection of essays. Follow her @kvm1303.

Look at my scars

The remnants of my own illness have taught me that when it comes to difference, don't stare -- but don't turn away

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Look at my scars (Credit: Natalia Klenova via Shutterstock)

“Do I freak you out?” she had asked.

It was the kind of question adults rarely pose. But Abigail (a pseudonym, like some other names in this piece) is 8, and she doesn’t have any qualms about being direct. The person she was asking, my daughter Beatrice, likewise didn’t hesitate in her reply.

Abigail is new to our school this year. She is in every way a typical second-grader, except that she was born without a left hand. It’s a trait that makes her undeniably noticeable, and so, sometimes, people ask questions. Sometimes Abigail has questions of her own. Sometimes, when you’re different, you want to know.

When Bea told me what Abigail had inquired about a few weeks ago, I’d winced a little, wondering how my child had answered. Had she passed whatever test Abigail was giving? I know how frank Bea can be, how she walks behind me when we’re out in public, checking whether the shiny, taut expanse of bare skin on my scalp is visible. “Mom, your bald spot,” she’ll say when we’re in a restaurant, fussing with locks to try to hide the five-centimeter circle where, a year and a half ago, I had surgery to remove cancer.

I know that Abigail’s question haunts many of us who are physically different, in ways both small and large, either by birth or circumstance. It plagues my friend with accident scars on his legs, who’s already nervous about summertime and exposing his flesh at the beach this year. Maybe it’s a small yet indelible birthmark on the chin. Or it’s a big burn. Or a missing limb. Does this make you want to look, or want to look away? Do we make you uncomfortable? Do we freak you out?

“It’s a thing that has to get explained,” says Natalie, a New York executive who’s had three serious melanoma surgeries and lives with ongoing psoriasis lesions. “For me, the anticipation of that is hard. I think people want to distance themselves from someone who’s had a traumatic event. Somehow you wind up having to reassure them that you’re not contagious, that they’ll be OK.”

Though she tries to be “very open about my illness, because I want people to get it,” Natalie admits she has nevertheless “some really upset moments” of unasked for attention. “I once had someone literally cross the road to ask what was wrong with my legs,” she says. “I was feeling really proud of myself for being brave enough to wear the skirt. And this woman came along and destroyed it.” She adds, however, “I don’t feel sorry for myself, and I don’t wear this as a badge. I just want to be looked at as the successful, independent woman I am — but I understand that some people can’t do it.”

It’s true that some people can’t, and there’s loss in there. I used to have a friend who liked taking pictures of his buddies, including me – right up until my diagnosis and my relatively minor disfigurement. Then he never took another photograph of me again. I wonder if I freaked him out.

My friend Frank, a West Coast entrepreneur, understands. A few years ago, Frank had radical surgery for bladder cancer that left him with what he calls a “Guinness Book of World Records scar” that starts at his sternum, loops around, and ends at his pubic bone. He also has a partial hernia that leaves him, in his word, “lumpy” under a shirt.

“I get a lot of people staring. I’m used to it,” he says. “It usually doesn’t bother me. I’m just a little self-conscious when people are peeking out the corner of their eyes in the locker room.” And, he recalls, “one time my wife and I were at Caesar’s Palace lying out in the super-bright, crystal-clear Vegas sun, and this woman next to us asked, ‘What happened to your stomach?’ She was pretty horrified when I told her.”

He’s still sometimes horrified himself. “I look at myself every morning, and I think of all the horrible shit that I’ve been through because of this disease,” he tells me. But when he looks in the mirror, he also sees a mark of survival. “I’m working out and riding my bike to train, and if that doesn’t tell you how I’m doing, go ahead and ask me. I don’t think I look that bizarre. I think I look like a guy who’s had major abdominal surgery.”

As Frank knows, when you’ve been through something life-altering, the first person you have to get to accept your look is yourself. “The first time I saw myself afterward, I thought, That looks very interesting,” says Johan Otter. Johan is a master of understatement. Seven years ago, Johan was hiking with his daughter in Glacier National Park when he was mauled by a grizzly bear. His scalp was torn off; his eye was clawed. He had to wear a halo brace for 12 weeks and go through multiple grafts and surgeries to recover. And then, he says, he had to learn to “push through” his first time out in public again.

“You get used to it,” he says. Besides, he jokes, “I never have a bad hair day.” Otter admits he can still be somewhat surprising to strangers. “Once at Costco this woman said, ‘Oh my God, what happened to your head?’” he recalls. But though he admits, “I’m a vain person just like anybody else,” Otter says that “I’m always extremely proud of my scars. When you go through something like this, people see you with your true self. You learn that what matters is what’s inside.”

It’s not always easy in our perfection-driven culture — where a weight gain of five pounds can be treated as a life crisis and toothpaste brands wage war on dingy teeth and a “puffy face” means you’re no longer considered “pretty” – to believe that within battle scars and what others would call abnormalities, there is a raging, painful exquisiteness. It’s often hard to feel the sideways glances and puzzled stares. But it’s harder still to be overlooked entirely, to feel like the remnants of the trials we’ve endured are the things that make others unable to look at us. We want to be looked at not with pity, not with fear, not with morbid curiosity. Simply with clear and open eyes.

So when Bea told me her friend Abigail wanted to know if she was freaking her out, I hoped Bea had answered honestly. More than that, I hoped she answered kindly. I hoped she didn’t pretend she’d never noticed Abigail’s missing hand, or changed the subject altogether. “What did you say?” I asked her nervously. “I told her no,” she shrugged. “I said, ‘Why would I be freaked? I love you.’” And then I exhaled.

I know life for Abigail – and Natalie and Johan and Frank and everybody else wounded or scarred or born different — is more complicated than that. The things that make us stand out in the crowd define us in a million little ways. They can remind us of the most dramatic, heroic moments of our lives, and of every small indignity and cruelty that has happened since. But what Bea and Abigail got to in the span of one recess period was that life isn’t about seeing past each other’s imperfections. It’s about being unafraid to look at them directly. Because that’s where the love is — in the cracks and the sufferings and the challenges. Life isn’t flawless. But it can be very, very beautiful. That day at recess, Bea told me, she had kissed Abigail, right on the place where her arm stops at the wrist. And they played together until the bell rang, and it was time to go back to class.

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Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Confronting cancer webcast

Full videos posted for Salon Core conversation on "coming out of the sickness closet" VIDEO

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Confronting cancer webcast

My oncologist says that whoever came up with the phrase “the gift of cancer” has the worst taste in gifts she’s ever heard of. But though it’s not exactly a set of car keys under the seat, cancer has, for the past year and a half, been the gift I’ve been given. And from an initial malignant diagnosis of melanoma through surgery through a Stage 4 rediagnosis through a last-ditch, Phase 1 clinical trial to a recovery that has stunned the research community, I’ve shared this adventure with the readers of Salon. And along the way, you’ve given so much in return. You’ve told me your own experiences with illness, with the healthcare system, with grief and frustration, and with the ways a shattering experience — either your own or that of someone you love — can turn life around. Sometimes even for the better. So it was a unique privilege to get to talk to a few of you recently for a Salon webcast, and answer your questions on life here in Cancer Town. For those of you who couldn’t make it live, videos of the full webcast are posted below.

The connections we find in unlikely circumstances are what get us through them. They’re a gift. Thank you for it.


Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

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