Cancer

Poison Valley, Part 2

What new cocktails of toxic chemicals are brewing in the high-tech industry's "clean rooms" -- and will we ever know what harm they're causing?

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Poison Valley, Part 2

In the middle of the 19th century, the baleful effects of mercury poisoning were hard to escape for anyone familiar with California’s quicksilver mines and refineries. As Gray Brechin writes in “Imperial San Francisco: Urban Power, Earthly Ruin,” “a visitor to New Almaden [Mine] in 1857 noted that the smoke from the refinery killed trees and cattle and that, despite short shifts, men exposed to the fumes had ‘pale, cadaverous faces,’ that ‘leaden eyes’ are the consequence of even these short spells, and any length of time continued at this labor effectively shortens life.”

One of Brechin’s recurring themes is that metropolises are sustained by the continuous pursuit of metals, and the energy necessary to produce more of the same. Quicksilver, or mercury, was essential for the reduction of gold ore. For centuries, the chemical phenomenon known as mercury amalgamation was the only financially viable method for extracting gold from stamped quartz or alluvial slurry. The early alchemists, it turns out, were not entirely mistaken in believing mercury a core element in the philosopher’s stone, capable of changing waste materials into gold.

A century and a half later, aspiring cities are founded on the reduction of a new precious metal — the computer chip — which in the end is just a metalized piece of sand, or silicon.

If there is a philosopher’s stone of the computer industry, it is the “photoresist,” a mixture of organic solvents and photoactive compounds whose properties are altered upon exposure to light. Essential to the process of optical lithography — the means by which chip makers “print” ever smaller circuit patterns on silicon wafers — the photoresist is the chemical underpinning of Moore’s Law, which famously predicted that the number of transistors that can be built on a piece of silicon will double every 18 months. It is, in many ways, the representative chemical formulation of the industry.

The photoresist is also, like mercury, potentially quite deadly. In the chip-making process, the photoresist is a solvent typically applied by dropping a small amount in the center of a spinning wafer, spreading a uniform coating across the substrate. According to former IBM physician Dr. Myron Harrison, there is an unusually high potential for worker exposure to photoresists through both inhalation and skin absorption.

As early as 1983, according to Harrison, lab tests had determined that a compound sometimes found in photoresist solvents called trihydroxybenzophenone was genotoxic. Along with the rest of the photoresist ingredients — xylene and DQ sulfonic acid esters, the former a known neurotoxin, the latter genotoxic and mutagenic; n-butyl acetate, a suspected neurotoxicant and respiratory toxicant; and glycol ethers or EGE, the substances at the center of the industry studies discussed above that are known to cause extensive reproductive and developmental disorders — the photoresist is one nasty concoction.

But it is only one of many nasty concoctions necessary for keeping the modern-day furnaces of Silicon Valley humming. And it is only through the unflagging efforts of activists, health experts like Joe LaDou and, not least, the pressure brought to bear by lawsuits such as the various complaints levied against IBM that public awareness of the dangers of semiconductor manufacturing — or the assembly of other high-tech devices, such as the hard drives coated by IBM’s Alida Hernandez — is finally beginning to approach the level of what has long since been known about 19th century industrial processes.

But do we know whether the situation is getting better or worse? The effects of mercury poisoning were fairly easy to spot. The effects of exposure to photoresist ingredients may take many years to manifest. Even more troubling, by the time health experts and corporate executives have caught up to what may have been happening 20 years ago, the pace of technological advancement will no doubt have launched a whole new parade of threats.

LaDou has been publishing technical articles on the hazards of the semiconductor industry for nearly 20 years, having observed the industry firsthand in the early 1970s while practicing as an occupational physician in Sunnyvale, Calif.

“In the early days, it was not unusual to see people in first-stage anesthesia — fairly drunk, staggering — from solvent exposure,” says LaDou, sitting in the sunroom of his Woodside home, a cylindrical structure built from the recycled redwood of an old water tower. “We treated literally dozens of hydrofluoric acid burns every day. The safety and health provisions in these companies were primitive at best.”

While such provisions improved in the subsequent decades — first with precautions like gloves, splash guards, face shields and safety glasses, followed by automatic loading techniques and more sophisticated air-monitoring systems — risks of workplace exposure by inhalation or skin absorption have by no means been eradicated, says LaDou.

Recall that the percentage of work-loss injuries and illnesses involving “exposures to caustic, noxious and allergenic substances” is three to four times higher in the semiconductor industry than in manufacturing industries as a whole. Even so, LaDou feels that the safety statistics are fundamentally flawed, and reflect a far lower rate of illness than is actually taking place.

The reporting system for workers’ compensation, he points out, dates back to a time when no occupational illnesses, not even lead poisoning, were recognized. It is thus geared toward tracking injured workers rather than sick workers. Because no one is losing fingers making integrated circuits, at first glance the industry can seem relatively safe. Employees who are fighting “psycho-organic” symptoms like headaches and nausea or who are losing weight because of solvent fumes are more likely to end up in the records of a personal physician than in filings with the Department of Labor.

Even when illnesses are properly reported, the industrial codes for workers’ compensation offer no way to distinguish between semiconductor employees who actually work in the “clean rooms” — who constitute approximately 25 percent of the workforce in a typical chip-making company — and the remaining 75 percent who’ve never donned a bunny suit in their career. Compare this with the automobile industry, where approximately 90 percent of workers coded as automobile manufacturers are actually working on the auto production line.

“It makes epidemiologic research impossible, unless the company will tell you the magic information on who works where,” LaDou says. “Otherwise you’re studying people who work in the canteen, or work in offices, or sell product out of their cars.” One can understand why LaDou turns ashen with frustration when discussing workers’ compensation data. “They’re such gross understatements of what’s actually taking place,” he insists. “We’ve wanted to look at the industrial hygiene data from inside the fabrication plants, and it’s never been published, and it’s never been made available to any experts.”

Exasperated with the absence of reliable data, in 1998 LaDou and members of a working group developed a preliminary study plan with the Environmental Protection Agency’s Common Sense Initiative to measure cancer and birth defects among California semiconductor workers by cross-linking the state’s cancer and birth defect registries with an industry-provided database of semiconductor employees, broken down as to which employees held which job and in what occupational setting. With a few additions — like tracking birth defects and collecting detailed job descriptions — it was the same idea as a 1983 Swedish study that found an elevated risk of cancer among electronics workers as a whole, and that concluded with a call for further study “focusing on particular features of the work environment.”

The EPA put forward $100,000, and California’s Department of Health Services, which had been chosen to conduct the study, promised “an umbrella of confidentiality” to protect the privacy of both workers and specific companies.

At the last minute, the semiconductor industry pulled out, led by representatives from IBM and Intel. In a widely reported statement — leaked to the press in violation of confidentiality rules — Intel spokesman Tim Mohin declared: “To participate in a project like this would be like giving [legal] discovery to plaintiffs. I might as well take a gun and shoot myself.”

Molly Maar, spokeswoman for the Semiconductor Industry Association, says that the SIA “allocates approximately 15 percent of its annual budget to environmental, health and safety issues,” although she declined to state what the SIA’s annual budget is. Asked for examples of proactive measures taken by the industry to safeguard worker health, she cites the Occupational Health System, an “ongoing, management-sponsored approach to performing work injury and illness surveillance” operated by industry consultant Don Lassiter.

When pressed for specific examples of how this data has been used to improve worker health and safety, Maar says that the industry is “constantly sharing practices” and “making sure that everyone is up to speed on chemical alternatives” and that “every generation [of new equipment and practices] as we go into the future is going to be safer and safer. That’s just the way the industry is going to be. Those things, as time goes on, are just going to be better and better.”

A search through SIA press releases turns up an announcement from March 2001 that the association was doubling the size of its Focus Center Research Program, funneling half a billion dollars over a 10-year period to leading research universities “to ensure continued advancements in microelectronics technology.” The industry provides 50 percent of the funding of this program, divided into four efforts with the following goals: materials to extend the life of planar-bulk CMOS silicon, circuit analysis and synthesis, application methodologies for future computing devices and interconnects between a microchip and the total system.

That’s $250 million in industry funds funneled into targeted research and development. Maar says that the research into future chip materials takes “environment, health and safety concerns into significant consideration,” but is unable to say how much money, if any, such consideration costs.

For more details on proactive health measures taken by the industry in the past two decades, Maar referred me to Lassiter.

Lassiter, a professor of public health at the University of Oklahoma, was hired by the SIA in 1982 to develop and administer an internal health and safety reporting system — which, curiously, comes up with a consistently lower rate of occupational illness in the industry than indicated by the Bureau of Labor Statistics. A former health official at both the Occupational Safety and Health Administration and the National Institute for Occupational Safety and Health, Lassiter makes “no pretense that this [system], in any way, identifies chronic conditions … It’s not designed to do that. If those conditions exist — there’s no evidence they do — but if they exist, then the system is certainly not capable of capturing those.”

Lassiter is also unable to provide much in the way of specifics on the topic of workplace improvements. He cites general trends over the past two decades toward equipment automation and protective devices, resulting in “less potential for contact with chemicals,” but with regard to the issue of worker safety he says, “I have less an opinion on stuff than I am just managing a database.”

What about possible health hazards for clean-room workers as a result of contaminants in recirculated air?

“I’m not sure what people are talking about with recirculated air,” he answers. “What you’d have to find out is how much the air really is recirculated, and if it is recirculated, what does that mean when you take air measurements? … Even if you recirculate the air, I guess what they’re saying is that the concentration of the chemicals increases.”

Lassiter’s critics disagree with his suggestion that their main problem with recirculated air is that it might increase the amount of chemicals ingested. What they’re saying, and have been saying for 20 years, is that the air filters do not change the chemical makeup of vapors — such as those escaping from the spilled disk coating Alida Hernandez describes — and that these chemicals constitute low-level, long-term exposures that may accumulate in fatty tissue and have adverse chronic effects on worker health such as cancer. What they’re also saying is that these chemicals, once metabolized by a worker, may react with other contaminants, creating new and untrackable pharmacological hazards.

Dr. Bruce Fowler, director of toxicology at the University of Maryland at College Park, explains it this way:

“Most commonly, what you see when you start mixing chemicals together is additivity — it’s like stacking blocks. But for some chemicals, you actually get a bigger bang than you would have expected when mixing two or more compounds. The literature of toxicology is replete with stories of potentiation [i.e, "bigger bangs"]. Sometimes you can have one chemical jack up the metabolizing system so that the toxification of the second chemical will actually be increased — it’s a very chemical-specific phenomenon. Who knows what would happen if you had five or six chemicals absorbed at the same time?”

“All of us vary in our susceptibility to chemicals,” adds Fowler. “Some people say that [bigger bangs] are uncommon at low-level exposures, but then the question is, What’s a low-level exposure? Low-level to whom? Is it a 35-year-old male? Is it a pregnant woman? Is it somebody who goes home every night and has a few drinks?”

If Don Lassiter is the unworried voice of the semiconductor industry, Mandy Hawes is the same industry’s unassuming scourge. With a thin, pointed nose and straight brown hair cropped above the ears, Hawes is a long-distance runner who is also a careful speaker, with the litigant’s habit of answering questions with citations and disclosing no more than is asked. Clients adore her and corporations loathe her. She is the eye of the storm against IBM.

“If the [local exhaust ventilation] doesn’t capture the organic contaminants, where do they think they’re going to go?” asks Hawes, founder of the Santa Clara Center for Occupational Safety and Health and one of the most tireless activists on behalf of worker safety and health in the country. Last month, Hawes received an award from the Women’s Foundation for her lifetime commitment to raising the issue of environmental causes of breast cancer. “People shouldn’t even be in that sort of environment, breathing recirculated fumes, but they have been. What were the companies thinking?”

Hawes began her career providing legal services to Bay Area cannery workers. Beginning in the mid-1970s, however, she noticed more and more of her clients — most of whom were newly arrived immigrants — taking jobs in electronics assembly. With a few colleagues, Hawes started the Electronics Committee for Occupational Safety and Health, whose first major effort was the Campaign to Ban TCE — a recognized carcinogen often referred to as “trike” and better known, these days, as the solvent suspected of causing the clusters of leukemia in “A Civil Action.”

Today, Hawes is lead attorney for the plaintiffs in the lawsuits against IBM and its chemical suppliers. The conference room at Alexander, Hawes and Audet overlooks St. James Park in downtown San Jose, where in the early 1930s the Agricultural Workers Industrial League organized massive labor rallies on behalf of striking workers from the Santa Clara canneries.

“There’s so many ways in which the existing set of regulations [controlling workplace exposures to chemicals] doesn’t begin to get the job done,” Hawes says. “Testing is at a minimum for [chemical] mixtures, even though the reality for all workers is that they’re working in a mixed-chemical environment, both because the individual products are mixtures and because they’re using several chemical products at once. Our whole means of trying to regulate the [workplace] environment is so far behind that fact.”

While Hawes concedes that the equipment used to detect airborne organic contaminants in fabrication areas has greatly improved over the years, she points out that such systems function primarily as protection against acute hazards, such as gas leaks. They are not intended to monitor the workplace environment for low-level chemical exposures under OSHA’s permissible exposure levels.

As documented in Bill Moyers’ investigation of the chemical industry, and summarized by environmental advocacy group Coming Clean, of the 2,800 chemicals produced in volumes of 1 million pounds per year or more, 43 percent lack basic toxicity testing, including tests for carcinogenicity, reproductive toxicity, neurotoxicity and immune system toxicity. Only 7 percent of these so-called high-production volume chemicals have a complete set of preliminary toxicity evaluations, or “screening level data.” Even if these tests indicate a problem, this is not enough to ban occupational use of the compound, often at exposure levels far greater than those considered hazardous when found in the natural environment.

“There are powerful historical reasons for these disparities,” says Sandra Steingraber, author of “Living Downstream: An Ecologist Looks at Cancer and the Environment.” “First of all, I think there’s a misconception in the minds of a lot of folks that the so-called permissible exposure levels [for synthetic chemicals] are completely science-driven — that scientists go out and test these chemicals for all their possible toxic effects, and then agree on a safe threshold level, and that threshold level protects everyone equally under the law. That’s not how our regulatory system actually works.”

She explains that different branches of the government, such as the EPA, Food and Drug Administration and OSHA, are responsible for setting threshold limits in different sectors of society. Workplace exposures are governed by OSHA, and ambient — or background — contamination levels that we might all be exposed to fall under the jurisdiction of the EPA. It turns out that OSHA, as a rule, regulates much more loosely than the EPA does.

Steingraber credits the stronger unions of the first half of the 20th century with pushing through safer exposure levels and monitoring equipment for the first wave of industrial chemicals, most of which got their start in the 19th century.

“Unfortunately, what’s happened in the last half-century is that you saw this explosion of synthetic chemicals right after World War II, when the chlorinated solvents really came in big time. At the same time, you had this waning of union power, and so workers lost a lot of ground” in protecting themselves against workplace exposures.

That sentiment is shared by Hawes, who suggests posting warnings in places of employment that would not only notify employees if they were being exposed to concentrations of hazardous chemicals but would state that it is legal to expose the worker to concentrations many, many times greater than what the state of California has determined to cause one excess cancer per 100,000 people. “That may make a difference, and make people begin to grasp the total double standard between what happens in the workplace and what happens outside.”

Will warning labels be enough? Or is it time for corporations to start factoring in the potential dangers of working at the cutting edge into employee compensation? Since employers simply cannot say, with certainty, that working with constantly changing combinations of complex organic compounds is safe, shouldn’t they be telling that to workers and start offering them hazard pay?

But even if activists are successful in requiring that businesses come clean with their workers, how can chip making, and the computer economy generally, realistically be expected to continue without necessarily putting workers at risk? We cannot expect to discover, in one fell swoop, an entire chemistry set of nontoxic alternatives for the toxic metals, solvents, resins, gases, plasmas and acids still required to make computer chips. And yet, the world economy is increasingly dependent on those chips.

Steingraber is optimistic, looking back at the example of the pesticide DDT for encouragement. “Whole books were authored on how if we banned DDT, agriculture would wither on the vine, and yet we’ve figured out better, safer ways to do things. I think when workers stand up and say, ‘Enough already, we’re not going to make computers possible on the backs of our health, and die — we need to find a better way of doing this,’ human ingenuity and innovation will come through, and suddenly we’ll find better ways.”

There are researchers making genuine progress on low-impact ways to manufacture chips. One of the more prominent is Fahrang Shadman, director of the Engineering Research Center for Environmentally Benign Semiconductor Manufacturing at the University of Arizona in Tucson.

Funded by the National Science Foundation and the Semiconductor Research Council, Shadman and his team of over 100 Ph.D.s and graduate students and approximately 30 faculty members from a dozen academic disciplines have done some amazing work in just half a decade. They have replaced the spin coating process — in which organic solvents are often used to deposit thin films on the wafer surface — with a totally “dry” process that deposits these films “without any solvents whatsoever.”

Already, they have substantially reduced the need for photoresist — possibly the most critical and toxic formulation in chip making — by developing chemistries in which certain films are directly imprinted on a chip. They’ve created radical new ways of reusing and reducing the need for water, traditionally one of the largest resource drains of fabrication plants — and a reason for the semiconductor industry’s tense relations with the water-poor regions of the Southwest, whose aquifers it has not only poisoned but consumed.

“We are not sitting here trying to figure out how to meet the regulations,” Shadman says. “We are trying to revolutionize certain aspects of semiconductor manufacturing. Environmental issues, after all, are international, and the semiconductor industry is an international industry. It is truly global. And yet there is no [research center] anywhere in the world with this kind of vision.”

That vision is devoted to the research and transfer of radically new chip-making technologies, developed according to a project philosophy called “Design for Environment.” “What this means is that we’re looking at the environment in the same way we would at other manufacturing factors, like cost. Why is it that we have to lower cost? Because cost is a factor. Why is it that we have to improve performance? Because performance is a factor. So we put environmental impact exactly in the same category, and the environmental motivation becomes a driver for new technology.”

Environmental motivation of a different kind is being shown by the semiconductor industry with respect to the cancer question. In November 1999, as the number of plaintiffs was beginning to multiply in various lawsuits, the SIA announced the formation of a Science Advisory Committee “to review existing data on potential cancer health risks, if any, within the U.S. semiconductor manufacturing industry.” SIA president George Scalise prefaced the announcement with a carefully worded disclaimer: “While we do not believe there is credible evidence of increased risk of cancer associated with working in the semiconductor industry, we believe it will be useful to assess the existing data to determine whether more extensive evaluation is warranted.”

The recommendation of the Science Advisory Committee is due early next year. According to Dr. Mark Cullen, professor of medicine and public health at Yale University School of Medicine and one of the six expert scientists picked for the current panel, “This represents what I would consider to be, as a professional in the field, a very positive evolution in the industry over the decade-plus that I’ve been involved. I take at face value their serious interest in wanting to know where they are and what they need to do in order to do the right thing.”

Even if the semiconductor industry and other high-tech giants that manufacture devices in clean rooms are finally taking the problem seriously, a hard look at Silicon Valley today, with its mercury-infested streams, poisoned aquifers and rising rates of breast cancer, still doesn’t encourage hope for the future. What new brew is bubbling up at the valley’s biotech start-ups? What new untested mix of chemicals is set to spill on a clean-room worker’s arms and legs?

Silicon Valley is full of oft-repeated myths that are proud testaments to the region’s technological prowess and entrepreneurial spirit. The garage in which Hewlett and Packard founded one of the most successful high-tech companies of the 20th century, the Homebrew Computing Club’s prowess in bringing personal computers to the people, the Apples and Suns and Netscapes and Yahoos — they’re all examples of the new economy, of the wondrous computer revolution. But rarely do the mythmakers take a close look at the costs of such progress. Rarely do they contemplate the vicious cycle at work: The faster the technological advancement, the harder it is for public health experts to keep up with the potential new health hazards posed by those innovative new processes.

Driving through Silicon Valley today, with its nondescript office flats and cookie-cutter suburbs, it’s easy to focus only on the genuinely impressive feats of its engineers and entrepreneurs, and easy to miss the more subterranean changes wrought by those achievements.

But if you step out of the clean room at IBM’S Cottle Road disk drive manufacturing plant and into the lunchtime sunlight, returning to Blossom Hill Road as it crosses over Monterey Expressway (forming the eastern border of the IBM contamination plume as it extends three miles northwest toward Coyote Creek), you’ll reach the southern on-ramp to Highway 101. The next exit will drop you into the neighborhood of Los Paseos, just a few blocks from the former site of a Fairchild Semiconductor fabrication plant at the eastern base of the Santa Teresa Hills.

That plant is where a failed gauge allowed an underground storage tank to overflow, causing an estimated 40,000 gallons of organic solvents to seep through the fiberglass liners and into the underlying aquifer. Less than 2,000 feet away was Great Oaks Well No. 13, which supplied the drinking water that may have resulted in a surge of miscarriages and birth defects in the residents of Los Paseos.

Fairchild, of course, is the prototypical chip maker of Silicon Valley, founded in 1957 by the so-called traitorous eight from William Shockley’s failed start-up, two of whom — Gordon Moore and Robert Noyce — would later found Intel, today the largest chip maker in the world and the company tied for the most Silicon Valley Superfund sites to its name. According to legend, Fairchild sold its first batch of transistors to IBM at $150 apiece. Many of Silicon Valley’s biggest stars can trace their ancestry back to Fairchild.

The site is now occupied by a Shell filling station. If you pass the station and continue up into the Santa Teresa Hills, you won’t get far before hitting another IBM checkpoint. It’s the east entrance to the IBM Almaden Research Center, on whose several hundred acres of orchard and live oak Big Blue’s San Jose research director is promoting something called “pervasive computing.” If you listen hard at that checkpoint, with some imagination you will hear the far-off sound of Alamitos Creek, flowing down on the other side of the mountain into the most mercury-contaminated river basin in the nation.

The gold rush that launched that mercury madness birthed modern California. The silicon boom, in turn, fuels today’s global economy. Somewhere in Sunnyvale or Mountain View there is, perhaps, an as-yet-unknown biotech start-up ready to unleash yet another wave of world-transforming change.

Future revolutions are inevitable. But the lesson of the impact of the semiconductor industry on its workers is also inescapable: Nothing comes without a price.

Jim Fisher was manager of IT support at Salon from 1999 to 2004.

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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