Cancer

Bioterror hysteria: The new “Star Wars”

The federal rush to find antidotes for biological weapons is diverting essential funding from the fight against truly scary enemies -- like cancer.

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Bioterror hysteria: The new

The good news is that Americans are finally getting universal healthcare. The bad news is that you qualify only after you’ve been exposed to a weapon of mass destruction. It is an irony of almost cosmic proportions that the most profound danger to the future of American medicine is the headlong, chaotic rush to militarize biotechnology.

The federal government has sold us a hundred-billion-dollar insurance policy that promises ultra-high-tech “bioterror countermeasures” in the event of a contagious Armageddon so improbable that the sales pitch achieves an hallucinatory level of paranoia. To underwrite this policy, our medical research infrastructure has been tasked with developing monumentally expensive containment systems for epidemics that, in all probability, will never happen. Bye-bye, Prozac nation. Anxiety is back in vogue, requiring us to put the greatest medical-research system in history under the control of politicians and their scientifically subliterate security czars.

The shocking reality is that, as a result of 9/11, we are in the process of turning over control of our national medical-research infrastructure to the Department of Defense (DOD) and its new domestic incarnation, the Department of Homeland Security (DHS). Just as we stand poised to reap the benefits of 50 years of revolutionary progress in molecular medicine, we are told, in effect, that cures for cancer, atherosclerosis, and Alzheimer’s will have to wait. America’s national security dictates that biodefense is job one.

This may spell the end of America’s dominance of the cutting edge of molecular medicine. Like the tropical rain forest or the Great Barrier Reef, our leadership in biomedical technology has grown as a result of a unique ecosystem where government, the marketplace and academic forces are held in a dynamic and complex equilibrium. Our biotechnology “industry” is a marvelous experiment in controlled chaos, linking universities and multinational corporations, geriatric investment bankers, and gonzo graduate students. Propagating this exotic and delicate creature makes breeding pandas in captivity look like a milk run. The rush to divert research dollars to bioterror defense will screw up everything.

A recent New York Times editorial quotes our president saying, “It would take only one vial, one canister, one crate slipped into this country to bring a day of horror like none we have ever known.” The DHS and DOD intend to use this endgame declaration as a mandate to convert the diverse ecosystem of basic medical research into a working ranch. They say we are at war and have no choice. But what about the horrors faced daily by the millions of Americans who are victims of the bioterror caused by cancer, stroke, and diabetes?

We have a right, in fact a duty, to question the wisdom of hijacking our biomedical research infrastructure for a theoretical battle against bioterrorism when there are shooting wars all over the medical landscape now. We need to know who has sanctioned this new imperative, and who will supervise its implementation, because the resources for biodefense research reside mostly in nonmilitary venues: namely, those that serve human healthcare. Our federal biomedical research infrastructure is simultaneously powerful and fragile, infinitely resourceful yet painfully finite in its resources. This is especially true for the “research community” that inhabits the unique environment that forms around a specific disease. Laboratories working on HIV or liver cancer form a delicate, extremely complex intellectual ecosystem.

To function effectively, researchers must navigate a densely tangled web of shared information and resources. New ideas entering a research ecosystem are continuously filtered by a self-critical apparatus whose very nature is anathema to big military projects. The name of this filter is peer review. On the cutting edge of human knowledge, basic research organizations like the National Institutes of Health (NIH) and the National Science Foundation (NSF) must constantly scan the horizon of new ideas. What is probable? What is absurd? To do this, science has evolved a rigorous system of analysis whereby the distribution of research funds in any given area is controlled by experts in that area. This is the essence of peer review.

But now, billions of dollars are being diverted into biodefense on a scale that will warp existing research priorities completely out of whack. If the current trend continues, defense and security applications may quickly become the premier source of all federal biotechnology funding. The enormous allocation of new funds for biodefense threatens to destroy the peer review system and uncouple this crucial symbiotic relationship between basic life sciences researchers and the federal agencies that fund them — a symbiosis that, arguably, has been the best investment ever made by the U.S. taxpayer.

Before the federal government spent a dime, the Manhattan project had been rigorously vetted by some of the greatest minds of the 20th century. Today, with a minimum of consideration for scientific feasibility, the executive branch is moving inexorably toward the establishment of a multibillion-dollar program whose goal is to use America’s leadership in biotechnology to make us invulnerable to bioweapons. Budgets are announced and billions of dollars become available with little discussion of how a gold rush in biodefense spending might rock the world of peer-reviewed scientific research.

The agents of death derived from life, bioweapons, are the most terrifying exactly because they operate far beyond the twilight zone of our collective imagination. Even the experts don’t know what can be created, what the symptoms will be, how deadly, how painful. Even the experts don’t know how it will spread or who is at risk. Theoretical next-generation bioweapons invoke a surreal level of terror because, in truth, we have no idea where this technology can go.

We are talking about the potential for a deadly marketplace of metabolism where “genetic or protein engineering” and “directed evolution” are standard tools of the trade. And it is precisely because no one can tell us what could happen that American biotechnology, the undisputed world heavyweight champion, appears ready to go down and take that induction physical. The plan is to multitask this crown jewel of our economic future to drive America’s other great technology business: weapons. But how far should the cutting edge of biotechnology research be deflected toward national defense? How much of the federal budget for life sciences R&D should go toward defense and security applications — and who decides?

This question is crucial because the federal government supports almost all the basic research from which next-generation biotechnology products evolve. This in no way minimizes the creativity of America’s biotechnology industry, which invests an enormous amount of money and intellectual capital to bring these basic discoveries to the marketplace. But the current pipeline is almost entirely filled with blockbuster products that originated in long-term fundamental research sponsored by NIH and NSF. What happens when the basic research mission of these agencies is short-circuited by the delusional lurches of homeland security?

Fueled by the enormous budgetary clout of the new Department of Homeland Security (DHS), biodefense mission creep is already reaching inward to federal labs and outward to the universities and private industry. The American Association for the Advancement of Science reported that for the fiscal year 2004 there would be an increase in federal R&D of $7.9 billion, nearly all of which would go to just three agencies: DHS, DOD and NIH. Nowhere is the golden rule more relevant than in the brutally expensive world of technology research. Whoever has the gold rules, which now makes DHS a major player in American science policy.

The newly hatched DHS has a baby of its own: “Project BioShield.” While still in its infancy, this government venture in biodefense has been budgeted for $6 billion, twice the amount spent on the entire Human Genome Project. Originally announced in the president’s State of the Union address, Project BioShield is billed as a comprehensive effort to develop and make available modern, effective drugs and vaccines to protect against attack by biological and chemical weapons or other dangerous pathogens. Project BioShield is a putative collaboration between DHS and NIH, but many in the research community doubt that this shotgun wedding can work.

Because Project BioShield is designed to protect a civilian population, $1.75 billion will be subcontracted by DHS to NIH’s National Institute of Allergy and Infectious Diseases (NIAID). We are supposed to be reassured that biomedical research will be handled by the professionals. But DHS still writes the checks for a project that is supposed to reach warp speed in a single year. Informed sources estimate that a staggering 10 percent of NIH’s funding is now directly or indirectly related to biodefense R&D. In coming years, the “expedited” authority provided by Project BioShield will route additional hundreds of millions into biotech research that does not follow the normal protocols of peer review.

This is a very risky proposition. NASA brought us Tang and DARPA may have created the Internet, but for every executive branch R&D success there have been spectacular failures. Billions of dollars disappeared into the ill-fated Strategic Defense Initiative (popularly known as “Star Wars”) venture. Billions more are still required to decontaminate the residue of a nuclear arms race that represents the last time the federal government took one of our great scientific assets to war. In the final analysis, our national defense infrastructure is simply not designed to foster the environment essential for pushing back the frontiers of basic science.

The Department of Defense is also requesting an enormous slice of the biodefense pie, but bottom-line numbers are impossible to assess. Unlike DHS or NIH, DOD can hide biodefense funding within a maze of classified projects that makes Chris Carter’s vast X-Files conspiracy look like a game of kick-the-can.

Even a cursory analysis of the DOD budget shows an enormous amount of biotech funding buried under a bewildering array of acronyms like COWATAA and DTRA or embedded in mega-technology initiatives like DARPA’s Bio/Micro/Info Sciences Program — which could just as well be called the DARPA’s EVERYTHING Program.

Under the heading “Combating Terrorism” the president’s budget request allocates $7.3 billion for DOD efforts to combat terrorism, including biowarfare. Highlights include $578 million in R&D funding for advanced individual-protection programs, and for equipment to detect and decontaminate chemical-biological agents. Additional biowarfare countermeasures are buried in the $378 million Cost of War Against Terrorism Authorization Act (COWATAA), as well as $452 million for something called the “Defense Threat Reduction Agency (DTRA).” In just those few appropriations we find almost $1.5 billion dollars.

Don’t feel safe quite yet? There’s the “Homeland Security Biological Defense Test Bed.” Sorry, no acronym and no explicit price tag — but if you have to ask, you can’t afford it. In this modest little program, DOD will create an “integrated capability for protection of urban areas, high value assets, and special events, and detect and respond to biological incidents.” In FY 2003 we start on the “establishment of fully equipped test beds on selected military installations, an enhanced biological monitoring system in the National Capital Region, and an initial biological monitoring capability in two additional urban areas.” Welcome to Tomorrowland in the paranoid magic kingdom of bioterror.

One can only guess at what an “integrated capability to protect, detect, and respond to biological incidents” in urban areas might include, but this project has the potential to make Star Wars be the last nickel bargain on the planet. One is assaulted by visions of ubiquitous bioweapons sensors hanging like smoke detectors and air fresheners. Mood rings replaced by miniature DNA sequencers that constantly sample the genomes of microorganisms as they fall on our skin. Office buildings equipped with windowpanes that change color when a chemical or biological agent settles on its surface.

Finally we come to DARPA’s Biowarfare Defense Technology (BDT) program. For FY 2003, DARPA proposed to dedicate 50 percent of its entire $150 million budget to a project called “Bio/Info/Micro Sciences.” This project will “explore and develop potential technological breakthroughs that exist at the intersection of biology, information technology and micro/physical systems.” That’s the same as saying that this project will explore and develop the fusion of biotechnology, computer technology and nanotechnology — essentially the entire future of high technology! This 50 percent allocation becomes even more amazing when compared to the historical DARPA funding requests, which show that Bio/Info/Micro Sciences was budgeted for zero dollars in FY 2001.

It is essential to recognize that very little of DOD’s research will occur in-house, which means that just like the DHS, DOD will be a major player in science policy through its vast capability to fund university and industry laboratories. As our military and security commanders draft more of America’s biotechnology infrastructure to support a war on terror that has already cost hundreds of billions of dollars, it is crucial to remember that NIH, the premier federal source of all basic healthcare research, will receive only about $28 billion in FY 2004. This budget includes everything from public health initiatives to basic genome research. If the current trend continues, federal biotechnology funding for defense and security will easily rival funding for basic biomedical research within a generation.

But will this current trend continue? Industrial biology is coming of age in a government-proclaimed age of terrorism, and that will be hazardous to your health… though the reason may not be obvious. Before we spend these uncounted and uncountable billions for biodefense, we must ask whether we have the real enemy in our sights.

What if the true danger is not some fanatic attempting to slip across an international border? Do we dare consider that, fueled by a xenophobia that is out of all proportion to reality, we are in pursuit of a specious alien “other”? Is the greatest threat to our security really the possibility that a group of fanatics enabled by satellite phones and e-mail will get their hands on a doomsday vial? These questions take on monumental significance when we recognize the true cost of the war on terror, when we understand too late that these valuable resources could have been used to target and destroy a much more dangerous enemy that is already here. It’s in our true heartland, it’s in someone we love: a mother, a husband, a child.

This enemy doesn’t have to cross an ocean in disguise or procure forged documents. This alien has already gained entry into our homes. We must seriously reconsider a policy that deflects attention from an enemy that is here, known and extremely deadly. No WMDs have been found in Iraq, but it is an irrefutable fact that there are WMDs in our living rooms. No conceivable enemy of the American people has the might and capability to destroy, ravage and inflict damage the way real cellular terrorists do. Maybe we should be outraged that, even as we stand on the threshold of annihilating the enemy within, our resources are being summarily redirected by acts of subterfuge and deceit camouflaged to make us think, with the old American sense of isolationism, that we are safe only when the enemy is kept far across the ocean.

We will all die eventually, of course. But it is a terrifying fact of life that, in the year 2000, cancer and heart disease alone prematurely took the lives of more than 1.2 million Americans and, since Sept. 11, 2001, these diseases have killed more than 2,500,000 of us while the total number of lives lost to terrorism must stand well below 4,000.

This staggering reality does not even begin to count the terror suffered by survivors of these and other major diseases or, of course, their families. To date, the war on terrorism has cost hundreds of billion of dollars, enough to accelerate discoveries in the basic life sciences by a decade or more. It is beyond irony that just as we stand on the brink of turning an abstract struggle against our own metabolism into a plausible stand-up fight with recognizable victories, we should be ambushed and paralyzed by the fear of vague, implausible scenarios. By remaining at this level of fear, we sentence millions of Americans to a premature death.

The war on terror is very real, and America needs to fight its suicidal, homicidal enemies with all appropriate vigor. But if we let these people distort the greatest scientific enterprise our democracy has ever created, they will have achieved a victory out of all proportion to their true capabilities. For all its horror, the World Trade Center disaster was a preventable anomaly. But cancer, heart disease and their allies are the true inevitability that must be fought with every weapon in our arsenal.

The post-9/11 militarization of our federal biotechnology research infrastructure represents the most dangerously misguided government science initiative in history. Al-Qaida and the new Department of Homeland Security have coauthored a national performance-art piece wherein the American people join a cargo cult dedicated to the construction of multibillion-dollar totems with the magical power to make our borders impermeable to all vials, ampuls, and other canisters of contagion … including the ones that don’t exist. As executive producer of our new national reality show, “Survival of the In-vial-ate,” Osama bin Laden will kill millions of Americans without losing a single minion. We will die. Not from terrorist cells, but from the cellular terrorists whose molecular weapons of mass destruction — cancerous mutations, arterial plaques and cryptic retroviruses — are already embedded in our bodies.

Alan H. Goldstein is the director of the Biomedical Materials Engineering Science Program at Alfred University in New York. The ideas stated here reflect the personal views of the author. They are in no way related to his professional affiliation with Alfred University.

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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