Cancer

Nobel dude

Kary Mullis revolutionized genetic research but thumbs his nose at the scientific establishment. It thumbs its nose right back.

Take all the MVPs from professional baseball, basketball and football. Throw in a dozen favorite movie stars and a half-dozen rock stars for good measure, add all the television anchor people now on the air and collectively we have not affected the current good or the future welfare of mankind as much as Kary Mullis.” — Ted Koppel, on ABC’s “Nightline”

At the Inventors Hall of Fame, Kary Mullis’ work stands with that of Louis Pasteur and Guglielmo Marconi. Every research university in the country has tens, if not hundreds, of the machines that run on his ideas. Somewhere in Mullis’ home is a round medal with a bas-relief of Alfred Nobel, representing the highest honor in science, one shared by the likes of Albert Einstein, James Watson and Francis Crick.

That’s because Mullis invented the polymerase chain reaction, or PCR, a technique that makes a billion copies of one tiny gene, thereby allowing scientists to study that gene in great depth. As the historic Human Genome Project pulls into its home stretch, physics passes on to biology the mantle of most revolutionary science. In the last century we conquered the atom; now we will conquer the gene. And we will do it with PCR.

So Mullis must be an august man, writing his memoirs at the National Academy of Sciences, receiving policy makers and reverent fellow scientists in his book-lined study the way Papa Einstein did, right?

No way, dude! Mullis is like hangin’ 10 in La Jolla, surfin’ every day, brewskies in the fridge, LSD whenever. (Hey, he knows how to make the stuff.) Aliens occasionally visiting. A sexy new wife (since all the women at scientific conferences finally got sick of his lechery). And he just had a book published with his naked bod on the cover. Far out!

Actually, neither of these descriptions is accurate.

But the second one, Mullis as the surfer loon, is the most pervasive. I first heard about it two years ago at a bar during a conference in Southern California. Two geneticists were joking about how they should go find Mullis, do some drugs and score some chicks.

“Isn’t he the guy who invented PCR?” I asked, surprised. Usually scientists are more respectful of their best and brightest. They said, yeah, Mullis may have invented PCR, but all those drugs, and all that womanizing, and all those crazy ideas about mind expansion had essentially placed his reputation in the alleyway trash bin, but he was fun to joke about.

When Mullis won the 1993 Nobel Prize in chemistry, journalists reinforced this stark morality tale: Boy genius invents a great thing but then behaves so irresponsibly that everyone laughs him out of science’s good graces.

With his own book, “Dancing Naked in the Mind Field,” published in 1998, Mullis fumbles the chance to show the world he isn’t a fool. His writing is not thoughtful enough to justify his eccentricities, and the book makes him seem the jester people say he is. He writes, among other things: O.J. Simpson was innocent and Marcia Clark’s a hottie, humans don’t contribute to global warming and HIV is not the cause of AIDS. He purports to have found astral planes by scientific method, he relishes old tales of seducing women and taking drugs and he pooh-poohs current science.

“I’d put 90 percent of our present expenditure for physics and space technology on [finding asteroids that might hit Earth],” he writes. “The other 10 percent should go to looking for aliens.” All of this is too challenging to simply glide over; and the lack of deeper explanations makes the man seem facile.

When I tracked down Mullis for an interview (his first for a major magazine in almost two years), I was primed to get some of those juicy “No way, dude; let’s do some LSD!” quotations to jazz up my profile. Of course, character being different from caricature, I didn’t get any.

During our hour-long phone conversation, Mullis spoke nothing like the bar-stool imitations of him I have heard scientists do. He has a soft voice that retains the diphthongal calm of his native South Carolina. It is indeed a good voice for a successful womanizer, but I was struck more by his consideration in answering my questions. His speech had none of the silly jumpiness of his book. I asked him why so many scientists dislike him.

“I’m not driven by being understood,” he told me without raising his voice. “I don’t try to be contrary, either. If I say, ‘Hey, there’s no reason to think that human beings have any long-term control over the weather,’ I am telling you what I know. No one contradicts me honestly; they just shout because they dislike what I say.”

He means what he says; it’s important to him. He has ideas that belong on astral planes. But there is also passion — the energy of a wide-ranging mind that disregards barriers of inquiry most of us heed. And there is hurt for being laughed at by the same scientists who have built their careers on PCR, the invention he gave them.

Mullis grew up in Columbia, S.C., in the late ’40s and ’50s. He showed a prodigal ability to blow things up: He gassed his grandmother (not lethally), and he torched some trees. At the time, he told me, he considered explosions part of a normal boyhood, and he laments the fact that today, “You can’t ask your pharmacist to stock larger quantities of potassium nitrate because you want to make a bigger rocket.”

Through Georgia Tech and graduate work at the University of California at Berkeley in the late ’60s, Mullis mixed things well. He was creative and exacting in his work because he loved chemicals and catalysts. He was creative and expansive in his personal life because he loved sex and substances.

One of his thesis advisors at the time, Henry Rapaport, remembers that he was in love with learning; he took so many classes, both in and out of science, that his advisors had to be taskmasters in getting him to finish. Rapaport, who wonders if he might otherwise have stayed forever, also notes that Mullis was “attracted to the obscure and unusual.”

It was at Berkeley that he learned to make LSD, and though he wouldn’t talk with me about it, a clear theme across the anecdotes in his book is that he likes it still. To him it is indeed a mind-expanding substance.

It doesn’t help his image that Mullis looks like a cross between David Letterman and Gene Wilder. His eyes smirk at the world. It’s not hard to imagine him smirking his way through his first marriage, through at-home experiments in which he tried to turn off lights by wiring himself into an electrical circuit and then “willing” the lights off, through the seduction of nurses from his wife’s medical school with this trick, through suggesting to the queen of Sweden at the Nobel ceremony that his son marry her daughter (she declined) and through the writing of his book, which begins — in a preemptive strike against those who will laugh at the rest of what he has to say — with the invention of PCR.

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He was smirking through the windshield of his Honda on a windy road in Northern California late on a Friday evening in May 1983. His girlfriend was in the seat next to him, and they were on their way to a romantic red-wine weekend for two. He held a job at the time in a small biotech company called Cetus, which had been founded by, among others, Carl Djerassi, the inventor of the birth control pill. As he drove, his mind was debriefing after a tough day in the lab. His work at Cetus involved DNA, and, like everyone who worked with DNA in the early ’80s, he wanted to be able to make more of it, to get it to copy itself in a lab so he could study and manipulate it. Watson and Crick had shown that DNA is the recipe for life; scientists were desperate for an easy way to read it.

Part of his work involved now archaic ways of getting genes to replicate — it took months and was heavily error prone. There must be a better way.

The muse descended, the idea came, Mullis pulled over. He searched the car for paper and pen and started writing, despite complaints from the girlfriend that they should go on to the house first. It was so easy, such an elegant idea, simple and effective. The polymerase chain reaction “was a chemical procedure,” Mullis later wrote, “that would make the structures of the molecules of our genes as easy to see as billboards in the desert and as easy to manipulate as Tinkertoys.”

Genes are double strands of chemicals, and the whole kit and caboodle of them, the entire recipe for life, is made of just four chemicals: adenine, thymine, cytosine and guanine. Think of each strand as a long string of these chemicals lined up in a row like beads. When two strands of DNA come together to make the familiar spiral-staircase helix (which graces the letterhead of so many biotech companies), these four chemicals get very picky: adenine (A for short) will only line up across from thymine (T) on the other strand. You never see two A’s or an A across from cytosine (C) or guanine (G). C and G likewise form an exclusive pair.

Here’s PCR in a nutshell: Put the gene you want to look at in a pipette with a little liquid. Heat it up and the double-stranded helix breaks apart. Each string of chemical beads drifts off by itself. Throw in a large and random assortment of loose A’s, T’s, C’s and G’s, and the individual chemical beads will seek out their pairs on the single strands. Once every chemical letter on each original strand has a new partner bead (the same-letter partner it always has because of chemical exclusivity), you cool down the mixture and the new rows of partner beads anneal into strands of their own, conveniently providing a new half to each original strand.

The helix reforms and — voil`! — you’ve made two exact copies of the one gene you started with. Heat these two up and you have four separate strands. Throw in more loose chemical letters, let them pair up and you have four identical genes. Repeat this process 30 times and you have more than a billion copies of that one piece of DNA you started with — cartloads of it in lab terms.

So begins the genetic revolution. Without PCR, genetics is like trying to do experiments on one droplet of milk sitting on a white plate. The milk is hard to find, and you only have enough of it to try one thing — such as add a droplet of orange juice and see what happens — and that’s it. You are limited in experimenting if you only have a tiny amount to play with. PCR makes genes by the milk pail, and scientists are thrilled.

Take Anne Blackwood, an oncologist at the University of Pennsylvania in Philadelphia who treats breast cancer patients and runs a lab looking for a cure. Cancer is caused by the slow accumulation of mutations in the genes of cells. To get any real sense of what’s going on in the earliest stages of cancer, when only a few cells are worth looking at, Blackwood needs PCR to multiply the mutated genes.

Blackwood is also developing a long-term database of breast cancer types. She has a library of microscope slides of tissue biopsies — tiny samples, some of them more than 10 years old. Using PCR, she can tease out the genetic profiles of each tissue sample and make a record of the mutations she sees. Such a large, statistical study of how cancer works is rapidly improving prognostic capabilities. It is also getting doctors much closer to a genetics-based cure.

Genetics-based cures are the Holy Grail of the Human Genome Project, the research that is mapping out all the genes in the human recipe book. Such mapping requires incredible amounts of gene replication; without PCR, it simply wouldn’t be feasible.

Since PCR is ubiquitous in all pursuits “genetic,” it is worth listing a few more: A hair left at a crime scene can find its owner through PCR. By the same token, DNA evidence, readable through PCR, has exonerated more than 60 innocent people on death row. (Mullis likes this one: “It always gives me a boost when some poor bastard that’s been in there for 10 years is set free.”)

President Clinton was discovered on a blue Gap dress, big boy writ large through PCR. Evolutionary biologists recently proved through genetics that hippos and dolphins are more closely related than hippos and pigs, despite fossil evidence to the contrary. Humans share just shy of 100 percent of our genes with chimpanzees — we are minimally different items. Lettuce and humans share 40 percent; lettuce and mushrooms share less.

Astrobiologists haven’t used PCR yet; but scientists at the National Aeronautics and Space Administration have launched a probe to bring dust from the tail of a comet back to Earth. If they find microbes in that stardust, they will run it through a PCR machine to see whether life on Earth was seeded by a comet.

Indeed, Ted Koppel and the rock stars cannot match PCR, and it is good of him to admit it. Neither can most living scientists, and yet they are not so generous. Why the sidelining, why the laughter? Why must Mullis wear the dunce cap? It depends, of course, on whom you ask.

Rapaport thinks it’s Mullis’ ego. Rapaport, who had close ties to Cetus, does not dispute that Mullis invented PCR on a roadside in Northern California — in a sense. But, he says, science hates the “Hollywood hero,” the notion that one person creates something complete at the moment of “Eureka!” What Mullis had, says Rapaport, was a theory, nothing more. From there, it took a handful of arguably equal intellects at Cetus months of hard work to take Mullis’ notion and create a real PCR, one workable enough for the Blackwoods of the world to do something with. “Reduction to practice distinguishes the brilliant idea from malarkey,” says Rapaport.

As for malarkey, says Dan Koshland, a famous Berkeley scientist who knew Mullis, look at everything else he’s done. It’s fine for a chemist to agitate about matters chemical, but when he sticks his nose into AIDS and global warming, he has crossed boundaries of professional knowledge that should be respected, Koshland says.

And the problem is his prize: He can’t be ignored. “He was a free spirit before he got the Nobel Prize,” Koshland says. “Now he’s a free spirit with a Nobel Prize.” And that’s just tiresome: “His views on social issues are irrelevant.”

“In the scientific community, there’s a great deal of mutual respect for everybody, the realization that every worthwhile invention is a series of small steps taken by many people,” says Rapaport.

Of course, the Nobel committee singles out scientists, and Mullis was very happy to be glorified all by himself, Rapaport says. Whereas most scientists do a less eloquent version of Isaac Newton’s “If I have seen further it is by standing on the shoulders of Giants,” Mullis’ book mentions only bitterness toward those at Cetus who tried to take some credit for PCR. Rapaport notes, “If he’d been on a desert island, he wouldn’t have come up with it.”

Rather than protect Mullis’ eccentricities, scientists mock them. But there is more to it than that: There are plenty of scientists, Nobel winners and others, who enjoy splendid suites on the top floor of the academy even though their kahuna-size egos prevent them from acknowledging that anyone might have helped them in that one great thing they invented once upon a time. So Mullis’ own explanation for his excommunication may have some merit.

To his mind, modern-day science is a sluggish beast that isn’t ready for the world-changing questions he’s asking about global warming and mind reading. “I am playing by what I consider to be the rules that have worked pretty well for science over the last four centuries,” Mullis says. “You make observations, write theories to fit them, try experiments to disprove the theories and, if you can’t, you’ve got something.”

When he applies these rules to certain topics he finds interesting, people don’t get it.

But come on, astral travel?

“Look at any notion that 19th century scientists held as unassailable truth about the universe,” Mullis retorts. “Anything: the nature of light, energy, matter, time, space. How silly those ideas, how wrong they are to us now.”

It is true: Einstein’s relativity shows that matter curves space and that time slows down when you speed up — concepts that Newton would have found more absurd than the existence of angels. One major reason we progressed past the absurdities to what we now call truth was the adherence to scientific equipoise — the concept that requires scientists, in the face of the unknown, to consider all possible explanations. So if astral planes and global warming are open questions (arguably they are), then the out-of-hand dismissal of Mullis demonstrates a lack of equipoise. Scientists therefore make a cultural decision, not a scientific one, when they marginalize Mullis as a fool.

Mullis identifies the cultural decision this way: “Science has not been successful by making up explanations of things that fit with the current social fabric.” But modern science, supported by taxpayer money and held accountable to a press and a public, is compelled to fit the social norm. It cannot afford to step out on limbs of revolutionary thought (though arguably it does — look at string theory). Mullis considers himself a revolutionary, laughed at by those who will only cling to the trunk of the tree.

No wonder they don’t like him, and they certainly won’t accept that reading of his ostracism. In part because of this ostracism, and in part because of his own love of other things — from surfing to LSD to writing to his new wife — Mullis has not done much new science since PCR.

But he told me he is involved in a new start-up that is using compact disc technology to read genes in blood. He could not tell me much about it for proprietary reasons, but the idea is that you could smear a little blood on a disc and read the genes there in a CD player. This technology will have to go head-to-head with the “gene chip” technologies already far into testing phases. The bedside genetic analysis of patients these technologies offer would bring about a revolution in medicine as large as PCR has already wrought.

Whether it will be Mullis who does it — a second time — remains to be seen.

William Speed Weed is a freelance writer and radio producer living in San Francisco.

Kate Hudson’s cancer horror show

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

Kate 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

Avery 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

(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

(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

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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