I looked, all right? This morning, I took a long and unflinching gaze. How do I say this without sounding boastful? There in the bowl was a real beauty, my reward for yesterday’s hearty oatmeal breakfast and black bean and rice dinner. It was the kind of (how do we settle on a comfortable euphemism?) ejecta that would make Mom proud.
I consulted “What’s Your Poo Telling You?
” my handy field guide to human stools, and discovered that mine had an ideal shape, sinking nicely to the bottom of the bowl. Because of its textbook-perfect hue — no alarming green, red or yellowish tinge proving my bile is diseased — I can be reassured that I and my hardworking colon are healthy. I can proudly say I’m an excretion achiever!
I am hardly alone in poring over “What’s Your Poo Telling You?” Not only does poo have a lot to tell you, but lately scores of Americans seem anxious to listen. Last spring, Chronicle Books printed 20,000 copies of the little brown book, mostly to be sold as a novelty in Urban Outfitters. Today it has sold more than 225,000 in big-box bookstores nationwide. Apparently its success is proof that at long last poo has come out of the water closet.
Indeed, what the book’s coauthors, Josh Richman and Anish Sheth, M.D., say was once regarded as “malodorous waste” can now be openly regarded for what it is: a miracle of creation, a crystal ball of intestinal health, a feng shui of the derrière. “Like a snowflake, each poo has a wondrous uniqueness,” they write. They deconstruct specimens such as the “log jam,” “a cruel reminder of your inability to perform,” and “hanging chads,” “stubborn pieces of turd that cling.”
And for those who aspire to leave behind a shameful history of faulty stools? “The ideal poo is a pillowy soft, singular bolus of stool that exits the body with minimal effort,” says Sheth. And that paragon of poo is achieved by consuming plenty of fruits, vegetables and fiber superstars: beans, peas, seeds and nuts.
But wait, there’s more on the fecal front. Author Danielle Svetcov is set to publish “The ‘Regular’ Gourmet Everyday: Sumptuous Recipes for the Gastro-intestinally Challenged.” Tens of thousands of Americans are signing onto the Cleanse diet, a sort of spiritual-cum-vegan Roto-Rooter for the intestines. “Functional foods” like Activia yogurt aren’t selling by the cases because they are low-fat. That’s so 20th century. They are being hyped for how they “maintain digestive health.” Cutting-edge Japanese toilets can read your droppings for dietary deficiencies. But there’s a far more convincing sign that poo has hit the big time.
Much as they did with eating disorders and sex obsessions, viewers of “The Oprah Winfrey Show” are being invited to stop withholding about this most intimate and private act. Encouraged by the charismatic Dr. Mehmet Oz, a cardiovascular surgeon who appears regularly on the show, we are being told to look before we flush, to study what we’ve produced as a talisman of health. When it comes to diet, we need to make “number two” our “number one priority.”
On “Oprah,” women are pouring out their troubles on the toilet. Susan talks freely about her constipation. Maureen, a mother of four, lets loose entirely. “My hemorrhoids feel so bad that it’s like grapes hanging out of my rear,” she confesses. “Sometimes they hurt so bad, I can’t get out of bed for two days.”
Clearly, says Oz, Maureen and Susan, like millions of white-flour-addicted Americans, aren’t listening to what their stools are telling them. (Really, who knew the intestinal tract was so chatty?) “‘Help! Help!’ Their big colon is saying, ‘I need something from you,’” says Oz. If Maureen and Susan stop eating their children’s leftover Happy Meals and start eating more lima beans, oh, the satisfaction, wastewise, they would realize.
“You want to hear what the stool, the poop, sounds like when it hits the water,” Oz instructs. “If it sounds like a bombardier, you know, ‘plop, plop, plop,’ that’s not right because it means you’re constipated. It means the food is too hard by the time it comes out. It should hit the water like a diver from Acapulco hits the water.” Oz makes a “swoosh” sound — the sound of an Olympian excrement champion.
So why poo, and why now? Well, when it comes to the success of “What’s Your Poo Telling You?” there are two good reasons that two men in their 30s, who were potty-trained with the children’s scatological classic “Everyone Poops,” would grow up to write an adult version that speaks to their generation. No. 1, now that baby boomers are decidedly middle-aged, they’re becoming ever more aware of physiological changes that make poop an important topic of conversation. No. 2, we’re experiencing a baby boomer boomlet, with millions of new parents focusing, as new parents will, on their wee ones’ output.
Moreover, this is the natural progression of a nation obsessed, and browbeaten, about eating healthy. So we’ve moved from mouth southward, from fretting over what goes in our mouth to what comes out the other end.
The moment is ripe to come clean about our inner workings, say coauthors Sheth and Richman, who met when they were undergraduates at Brown University (where else?). Sheth, along with other collegiate pastimes, developed what he calls the PQI, or Poo Quality Index, that he and fellow students would use to compare the superiority of their bowel movements. Years later, the pair reconnected when Richman, who works in Silicon Valley to develop clean-energy technology, got back in touch with Sheth, who’d since become a gastroenterologist fellow at Yale University School of Medicine. “Poo has been in a societal sewer,” says Richman. “It’s something people didn’t feel comfortable talking about outside a small circle of friends. What we’re seeing is a cultural evolution where it’s no longer a taboo subject.”
Reading Richman and Sheth’s book is similar to pulling an enormous ball of wax out of your ear. Although you know you should be disgusted, you can’t stop looking at and obsessing over it. Quite simply, theirs is a fascinating read. (“Two thumbs up! Gripping and loaded!”) You feel relieved to get to the bottom of so many rectal mysteries, to find out that certain bathroom experiences — sometimes seemingly weird and extraordinary — are not signs that you’re a freak of nature.
When a kernel of corn makes its rear exit and comes out perfectly intact, it’s not a personal failing that proves you’re a bad child who didn’t listen to his mother and failed to chew properly. Instead, this common phenomenon, “deja poo,” refers to certain foods like corn that have insoluble fibers that are difficult for even the most efficient digestive tract to break down. “Regularity” spans the range from three times a day to three times a week. And a case of nerves — whether before an important business meeting or a performance — can induce “performance enhancing poo.”
“With so many of these experiences, we’ve had a lot of people come up to us and say, ‘I thought that was just me,’” says Richman. He adds that since the book came out, people are so anxious to talk about their stools that almost every dinner party discussion descends into potty talk, conjuring up a scene straight out of a Buñuel film.
Who knew it’s better to squat than sit? Or that because of a heavy fiber diet, the national average for detritus in southern Asia is three times that of the waste-makers in England. Then there’s the rarely discussed form of toilet elation, “poo-phoria.”
“This poo can turn an atheist into a believer and is distinguished by the sense of euphoria and ecstasy that you feel throughout your body when this type of feces departs your system,” write the coauthors. “To some, it may feel like a religious experience, to others like an orgasm, and to a lucky handful it may feel like both. This is the type of poo that makes us all look forward to spending time on the toilet.”
Going to the john is no longer simply a process of elimination. No, the “unbridled elation that results from releasing the perfect poo” is now a transformative act, bringing the conscientious fiber-eating toilet sitter to a spiritual or sexual high.
Unsettling connections between defecation and sexual pleasure aside, health may be one of the book’s biggest benefits. An interesting point when you consider that Urban Outfitters shoppers aren’t exactly the Ex-lax crowd, paying close attention to their colon’s health.
Even for a relatively young and fit person, the book makes the reader want to achieve a healthier dump. After this bathroom read, you find yourself reaching for that binding banana or drinking loads more water; and to prevent those punishing pebble poos (they can, uh, hurt on the way out), an indicator of a low-fiber diet, you opt for that sensible, grandmotherly bran muffin over the constipating chocolate croissant.
On a serious and somber note, the book advises taking a look before you flush for indicators of serious internal trouble including liver disease (white or gray feces), pancreatic disease (yellow poos) and more. (Unless you’ve been eating beets, the proper response to any deep red or black stools is an immediate check-in with your doctor.)
A snarky yet smart book like this — a “Colbert Report” of bowel movements — is in sync with today’s Web-savvy population. “With the advent of the Internet, people want to know a lot more about their health,” says Sheth. “Gone are the days people go to their doctor and take everything on blind faith. As it’s obviously intermeshed with one’s diet, the whole aspect of taking health into one’s own hands has trickled down to poo.”
Getting to know your poo may also improve your mental health, says New York City child psychologist and parent educator Lawrence Balter, author of “Dr. Balter’s Child Sense.” More openness, and less repressiveness, about our bodily functions are a good thing, he believes, although he pooh-poohs resorting to such infantile words as “poo” rather than the more forthright “bowel movement.” “These words give the impression that there’s something wrong or unacceptable,” he says. “The fact that an adult book would use a word like ‘poo’ suggests it’s a childish leftover and a childish reaction to these things.”
What would Freud say? We may have a way to go to grow out of our childish anal stage; getting beyond fourth-grade humor and cutesy euphemisms may take years. But being more serious about studying our stools may be a sign our country is growing up.
Oz says that in old-world countries like Turkey, where he has spent much of his life, the connection between overall health and healthy bowels is part of the culture. Indeed, the practice of taking an informed and forthright look at one’s waste as a vital sign of good or ill health is hardly new, practiced by societies worldwide for hundreds of years. In his recent Harper’s essay, “Wasteland,” about sewage treatment, Frederick Kaufman tells of the great Kamchatka god Kutka, who created the world and every living being, “then fell in love with his excrement and wooed it as his bride.” Now, that’s poo love.
In the United States, alternative-health practitioners have proved to be ahead of the intestinal curve, looking at the health of the gut as an indicator of systemic problems. “This kind of awareness is a critical first step in taking better care of ourselves,” says Daphne Miller, a San Francisco-based integrative family physician and author of the upcoming book “The Jungle Effect: A Doctor Discovers the Healthiest Diets From Around the World — Why They Work and How to Bring Them Home.”
“When I do an initial assessment of someone’s overall health, I really focus on their digestion and I often find myself getting down to the nitty-gritty when it comes to bowel movements,” she says. Seemingly unrelated health problems, including skin rashes, allergy symptoms and hormonal imbalances, can have their root in the gut, an assertion that’s supported by recent mainstream biomedical research. “Over and over again, I find that by fine-tuning someone’s digestion, other health issues can improve dramatically,” Miller says.
Yet can so much fecal gazing be a bad thing? Absolutely, says James Dillard, medical director of Columbia University’s Rosenthal Center for Complementary and Alternative Medicine. “All the neurotics are going to think this is wonderful,” he says. “The whole alternative side of life is a little bit self-obsessed. If you’re reading a book that has you focusing on your poop, you need to get out more. Instead of looking at your butt, you might want to look more at the vegetable aisle.”
Dillard says that focusing on excrement is “an irrelevant distraction” from necessary health habits, including a good diet, regular exercise, sleep and stress management. “There is no such thing as the ‘ideal’ stool,” he says. “This is a nonsense, pre-science concept. Obviously, if someone is eating only McDonald’s, they will get stopped up.” Otherwise, says Dillard, even the most laudable diet will show enormous variation in what comes out, all dependent on multiple factors like what you had for lunch, the amount of soluble and insoluble fiber you’ve eaten, hydration and — given that the gut is inextricably linked to the nervous system — your mood.
Dillard also points to the current fad for “detoxing” the body by regularly getting high colonics as an obsessively unhealthy one. “This is a manifestation that a part of you is dirty,” he says. “The colon has been around million of years and the wisdom of the colon predates us. This notion that we can somehow always intervene in some way so we can be intellectually or psychically or physiologically superior to this part of the body is kind of foolish.”
What’s more, obsessive stool reading may be a sign of an emotionally unhealthy culture. Since the turn of the 21st century, says private-practice psychologist Susan Lipkins, we’re increasingly panicked over the inability to control factors like terrorism, global warming and the government. “As Americans’ anxiety increases, it makes sense that we’d try to control everything,” says Lipkins, an expert on toilet training. Our recent enthusiasm for stool perfection may be yet another manifestation of Americans’ “obsessive, narcissistic” behavior, she suggests.
“Parents are trying to control their children, corporations are trying to control workers, and on an individual level, we’re trying to control our bodies, including our poop: when we poop, how often we poop and what we poop, including the right size, consistency and color.” As with all fads that strive toward the perfect body — be it the face, the pecs or the wardrobe — Lipkins says we’re missing something essential.
“You can be perfectly shaped and have perfectly shaped poops and still be an unhappy camper.” What’s more, says Lipkins, obsessing is not good for overall health, and certainly not for one’s bowel movements, since to poop with ease, it’s essential to relax. “But Type A people don’t have an hour to relax, so they take fiber to make sure they poop, so it fits into their schedule. Giving yourself time in the morning is a lot better than taking something so you can poop.”
In the end, as with all health practices, balance is key. “I don’t think there’s anything wrong with analyzing one’s excrement,” says Dillard. “But if this is the center of your life, you need to consult a mental health practitioner.”
This piece originally appeared on
AlterNet.
Almost two full years after the BP oil spill, a panel of experts gathered at the 17th annual Tulane Environmental Law Summit, to present the continuing impacts of the BP Oil Spill. That spill began with the April 20, 2010, explosion of the Deepwater Horizon drilling unit used by BP 40 miles off the Louisiana coast. Eleven men lost their lives. The resulting spill of oil into the Gulf of Mexico stands as the largest oil spill in U.S. history and the second largest environmental disaster in this country to date besides the nearly decade-long Dust Bowl of the 1930s. Scientists at the summit presented recent photographs of shrimp with no eyes and fish with cancerous tumors born long after the gulf was declared “safe” for fishing.
It turns out that testing water and fish flesh under the surface oil after the spill was not very telling about long-term impacts as oil and water don’t mix and the chronic, toxic impacts were delayed until long after BP was put in charge of the “cleanup.” When BP sprayed chemical dispersants containing a slew of toxic heavy metals including arsenic, the oil didn’t magically disappear. It sank into the sediment. Disturbingly, the allowable levels set by the government for the toxins in our seafood are based on health impacts for a 176-pound adult eating less than two medium shrimp a day. The testing is for one chemical out of a crude oil mixture containing thousands of chemicals. No synergistic effects are considered. This in no way protects children, fetuses, people who weigh less than 176 pounds or anyone who eats seafood on a daily basis like the folks here on the Gulf Coast.
Dr. Andrew Whitehead, Ph.D., associate professor, Department of Biological Sciences, Louisiana State University, who is studying the BP spill and has reviewed much of the scientific studies of the Exxon Valdez spill, explained that stock declines of species may take several years to develop as reproduction is impacted in successive generations and across species. The Exxon Valdez spill is now known to be responsible for the decline of many species, including marine mammals, marine birds, and fishes such as pink salmon and herring. Though we have a take on the immediate acute impacts of the BP spill on animals caught in the oil, the chronic ultimate impacts of the BP spill are still unknown. But we do know that the killifish, the most abundant forage fish for the bigger fish in Gulf Coast marshes, are being affected. Fish from oiled marshes show signs of direct toxicity and reproductive impairment. Dr. Whitehead’s experiments involving exposures to oiled sediments, done in collaboration with colleague Dr. Fernando Galvez, show that killifish embryos are taking longer to develop or don’t hatch at all. They are being born with malformed hearts and hearts that may not function properly when they mature. And as the impacts from the spill on the fish bioaccumulate and propagate across generations, liability is harder to prove without good and strategic scientific study that sadly is harder to fund.
But some impacts are being felt now, especially for sediment dwelling seafood. Current reports from fisherman up and down the coast are startling. The oyster harvest for 2010 was the worst in more than four decades and oystermen continue to report catches down as much as 75 percent. Crab catches are in steep decline. Brown shrimp production is down two-thirds. And the white shrimp season was even worse, leading to descriptions of “worst in memory” and “nonexistent.” This from the region that before the spill provided 40 percent of the nation’s seafood.
Dr. Patricia Williams, Ph.D., Diplomate of the American Board of Toxicology, Associate Professor, Coordinator of Toxicology Research Laboratories, Pontchartrain Institute for Environmental Sciences, University of New Orleans, spoke at the summit about what she sees as a failure to properly assess the impact of the spill on seafood and on human health. She said:
In 1996, the National Oceanic and Atmospheric Administration acknowledged that direct measurement of tissue for PAH (polycyclic aromatic hydrocarbon) concentrations generally does not provide a useful indicator of exposure of fish to PAHs from petroleum spills. Regardless, an extremely expensive seafood testing program was launched using this method. Testing included only 13 PAH parent compounds out of 200 PAHs present in crude oil. PAHs act on each other resulting in greater toxicity than expected from a single PAH (synergism). The synergistic nature of the PAHs were ignored in interpretation of the results. Additionally, the Levels of Concern were calculated for a 176 pound individual. This does not address toddlers and children or the developing fetus and placental transfer. The public was not warned of these deficiencies in the seafood testing program.
Dr. Williams explained that “PAHs are endocrine disruptors that interfere with the normal blood-borne hormones (e.g., estrogen and testosterone) that are responsible for the regulation of reproductive and developmental processes. Only very low amounts of chemicals are needed to disrupt the normal endocrine balance of both humans and animals. Evidence of reproduction imbalance is seen in the second generation of white shrimp in the 2011 harvest. Shrimp were harvested with defective eye stalks, pleopods, and pereiopods. Such anatomical defects are occurring in the markedly reduced white shrimp population in the Gulf and warn of endocrine dysfunction that could result in the loss of the species.”
Furthermore, “The heavy metals known to be present in crude oil are being ignored in the testing of seafood. Metal toxicity can produce neurobehavioral abnormalities in sea life such as: alterations in avoidance or attraction responses; critical swimming speed; changes in social interactions (e.g. aggression), reproduction, feeding, and predator avoidance; food foraging with reduced feeding ability; loss or orientation in swimming and changes in schooling behavior. Heavy metal testing in BP Oil clean-up workers has documented increased arsenic levels in 24 hour urine specimens.”
Finally, Dr. Williams warned that “The future chronic health effects from consumption of contaminated seafood and biomagnification along the food chain are yet to be realized in both sea life and humans. Chronic effects may take years to present and may elude an analysis of their causal origins. ”
On the second day of the summit, a settlement between private plaintiffs and BP was announced in the press. This settlement does not resolve the government cases, either civil or criminal, against the responsible parties. But the settlement of the private case raises the question whether the government prosecutions will be resolved without a trial and without jail time for executives ultimately responsible for the deaths of 11 workers and severe and ongoing environmental and economic impacts on the region. The summit attendees were abuzz with speculation about what will happen in the federal and State of Louisiana cases.
In Louisiana, petroleum is king. This state is the third largest producer of petroleum in America, Louisiana is responsible for more than one-quarter of the nation’s natural gas production, and Louisiana is the third leading refiner of petroleum in the country. In addition, the state makes over 600 petroleum products making it the second in the nation in primary production of petrochemicals. The 20-mile stretch on the Mississippi from New Orleans to Baton Rouge known as “The Cancer Corridor” pumps out one-quarter of the chemicals made in America. Louisiana leads the United States in release of toxic chemicals into the environment. The seven-parish industrial corridor has the highest density of petrochemical industries in the nation and possibly the world.
All this money in petroleum has a huge impact on politics in Louisiana, just as it does on a national and international level. It’s probably impossible to get elected to any Louisiana office without courting petroleum dollars and making campaign promises to that industry. A visit to the petroleum friendly website for the Louisiana Department of Natural Resources reveals the following section titled “Legacy Liability Reform.”
This “Legacy Liability Reform” is less likely to ensure any protection for Louisiana’s resources or its citizens than it is to assure petroleum companies that Louisiana and its resources are theirs for the taking. The reform is code for “don’t worry about liability because immunity for really bad stuff is all part of the deal for investing in Louisiana.” Oh, by the way, the Louisiana courts have been very protective historically of petroleum interests as well.
From the 1950s on, drilling for oil and gas on federal lands and waters has produced the second largest source of revenue for the federal government besides taxes. This has led to a rather cozy relationship between the federal government and those corporations that extract petroleum here. Let us not forget that since the inception of the Minerals Management Service (now renamed the Bureau of Ocean Energy Management, Regulation and Enforcement to emphasize what it should be doing) has been involved in numerous scandals. For example, in 1990, MMS employees were linked to prostitution, and in 2008 the Department of Interior’s inspector general reported that MMS employees were engaged in both drug use and sexual activity with employees from the very energy firms they were to be regulating. This wasn’t just the foxes guarding the chicken coop, but the foxes actually in bed doing lines of coke with the chickens.
Clint Guidry, president, Louisiana Shrimp Association, spoke at the summit about the political ramifications of the spill and the unlikelihood of real justice coming from the government case. Mr. Guidry had worked for BP earlier in his career like so many Louisiana men have. He knows intimately both the oil industry and the fishing industry. When the spill happened, Louisiana shrimping was devastated. First, Guidry lobbied for jobs for all the shrimpers when the fisheries closed. Then he fought for job site safety for the workers and community residents impacted by the cleanup. Guidry’s role became that of witness to the harms on fisherman response workers when they began to suffer from being exposed to aerial application of the chemical dispersant and being downwind from burn sites of the surface oil. For instance, on May 26 seven shrimpers from the offshore response crew were admitted to West Jefferson Hospital with chemical poisoning. Two days later, after Obama’s May 27 visit to Grand Isle where he was photographed picking up tar balls, two more shrimpers were airlifted to West Jefferson Hospital for emergency medical treatment, also for chemical poisoning. Guidry met with the Occupational Health and Safety Administration, the U.S. Coast Guard, the National Institute for Occupational Health and Safety, and with other government representatives from the local to the federal including Secretaries Napolitano and Salazar and U.S. EPA Administrator Lisa Jackson.
Mr. Guidry still has the following unresolved questions:
- Why did we allow people who caused the oil spill to be in charge of the cleanup? Everything they did was to limit liability, not to protect the environment, the resources or the people.
- How could the government announce on Aug. 5, 2010, that suddenly 75 percent of the oil had disappeared? Corporations run this country and they operate under the Golden Rule: Who holds the gold makes the rule.
- According to statements made by Louisiana Coastal Protection and Restoration Authority Chairman Garret Graves, BP is choosing the direction of the environmental damage assessment. Shouldn’t the Oil Spill Recovery fund be administered independently so it could fund real scientists like Dr. Whitehead?
- Oil companies are good at covering up spills and sinking the oil with additional chemicals, but they are no good at cleaning up spills. If we are allowing these companies to drill in the Gulf, shouldn’t they be required to have the technology to prevent disasters and to clean them up? They don’t.
- Even after the largest loss of life and oil, no laws have been changed. Eleven men are dead but I don’t believe anybody will go to jail. The government is the keeper of the record of the criminal investigation and if they settle the case, the public will never see that information. If the record is not made public in a trial, how do we learn from this spill?
- I’m a third generation fisherman. We were the first environmentalists because if you don’t take care of the environment, it doesn’t take care of you. I love wildlife. The spill has devastated wildlife. What price do you put on a dead dolphin?
- The head of Minerals Management Service at the time of the BP disaster came from big oil. She was fired by Obama and MMS was split up but no one else was fired. Is that enough house cleaning? Can these people keep us safe when they have failed in the past?
As the federal government and affected states including Louisiana move toward trial or settlement, we should all be asking these questions.
How will the government cases be resolved? Potential penalties of more than $17 billion for environmental violations remain on the books for BP. Peter Lehner, executive director of Natural Resources Defense Counsel writes in his blog, “How the remainder of the case pans out says a lot about the future of energy in this country. Will the government allow BP, and the rest of the oil industry, to continue business as usual with nothing more than a slap on the wrist? Or will the company be put on trial and held accountable for its actions? Will the penalties be severe enough to make the oil industry clean up its act? BP reported profits of $21.7 billion in 2011, nearly 3 times the estimated cost of its settlement with private parties in the Gulf.”
And one question looms even larger than the spill, the resulting legal cases or even BP profits: How can we establish a separation between the oil industry and our government?
“My clients don’t know,” he told me. How could they? My neighbor Edward (some names and some identifying details have been changed) doesn’t look sick. In many ways, he isn’t. He’s a dapper, graying-at-the-temples man with two young children, a consulting business — and a recurring cancer for which he’s currently facing another round of treatments. It’s hard enough drumming up business in this economy, Edward says. If a potential client’s choice comes down to the healthy 30-year-old and the middle-aged man with a tumor, well, who would you choose? So he presses on in secret, cleverly arranging his business schedule around doctor visits and scans. He’s in the cancer closet.
One of the first things you have to deal with when faced with a life-altering illness is the decision about whom you’re going to tell, and how. When I learned I had malignant melanoma a year and a half ago, I told my editor before I told my family. (OK, I was on a deadline at the time.) Two days later, I told the whole world in a cover story for Salon. Two months ago, Boing Boing writer Xeni Jardin live tweeted her first mammogram – and her stunning diagnosis of breast cancer – to thousands of followers. For some of us, the diagnosis is where we find our voice. For others that kind of candor isn’t an option, for either professional or personal reasons.
While a friend was going through breast cancer treatment a few years ago, few in our circle knew that her mother was facing it at the same time. Five years later, Ginger, a figure skating coach, says that “I knew if I told anyone, my students would immediately start looking for another coach.” Instead, she covered up surgery with a story of a vacation to Maine, and sandwiched months of afternoon chemo and radiation treatments in between early morning and evening coaching sessions – and weekends traveling with her team. “It took everything to get through it,” she says now. “There were times I was so exhausted I couldn’t see straight. A couple of times I had to leave the ice because I was so sick.” But she says she’s never regretted her choice to keep silent. On the contrary, sticking to her rigorous work schedule and maintaining the demeanor of health was “what got me through.”
In the midst of a health crisis, the routines of a career — the sense of purpose and obligation it provides — can provide motivation and escape, something that isn’t easy to pull off when everybody’s concerned about your condition. Chris, a doctoral student and teacher at an academic medical center, didn’t enjoy having his students popping in to check on him during his treatment after a lung transplant for his cystic fibrosis. He’s since switched his care to a different facility. Now that he’s no longer on oxygen – “when you can’t conceal a blessed thing” — he’s also discreet with his peers. “I don’t want people deciding for me what I’m able to do,” he says. “I’m pretty good at determining that for myself.” He knows first- and secondhand how damaging honesty can be. When his wife asked for a scheduling change around one of his procedures, her boss relieved her of her duties, telling her that “he’d decided she wouldn’t be able to handle her responsibilities.” Pretty bold of him to come out and say it. The ease with which employers can “restructure” or blame a termination on popular culprits “inconsistency” or “absenteeism” make it easy to conceal how often people with chronic conditions and their caretakers lose their jobs over them — and even harder to determine how great a role illness plays in hiring practices.
Thanks to our often punitive American healthcare system, the consequences of illness can be severe far beyond the illness itself. Linda, who was diagnosed with MS four years ago, says her friends know her condition but she rigorously keeps it from her co-workers. “It’s bad enough to live with this disease not knowing how it will affect me,” she says, “but I am terrified that it could also affect my employment prospects.” For Linda, like far too many of us in this country, “the thought of losing my job and thus my healthcare is probably my biggest nightmare.” The Patient Protection and Affordable Care Act doesn’t take full effect for another two years, when no one will be able to be denied coverage based on preexisting conditions. Currently, you can apply for a “high risk pool” if you’ve been uninsured for six months. That’s a lifetime for a person with a serious illness, and for those of us on ongoing treatments and drugs, an unfathomable expense.
There are other reasons beyond the fear of career repercussions for keeping illness a secret. Nobody wants to be viewed as an invalid, or the one who might be circling the drain. And as cancer blogger Katherine, who has metastatic breast cancer, says, “It’s often easier not to challenge people’s assumptions than to explain.” Linda agrees that “I am perfectly capable of working and living a mostly normal life. However, there is still an antiquated view of MS in our society, and many people automatically assume that once you are diagnosed, your next step is a wheelchair.” And Ginger notes that even in this day and age, when you can’t swing a cat without hitting a LIVESTRONG bracelet, “There’s such a death sentence that people put on cancer.” The reality of illness is that there are plenty of days when you’re going through the rigors of treatment and its side effects, that you just don’t want to be the official spokesperson and explainer for This Is What My Disease Looks Like.
Just as difficult as being pitied, though, is the risk of finding yourself scorned for a condition beyond your control. Bette, who has autoimmune disorders, says, “I’m very Type A, never miss a day of work or class or a deadline, even if that means having to go throw up in the bathroom in between meetings with clients. There’s a perception that people with autoimmune issues are weak, fragile, or delicate, which are characteristics I really try to avoid, especially as a woman. There’s also a ton of stigma about fibromyalgia. Someone in my office the other day actually made a comment about how so many women say they have fibro for sympathy, which strengthened my resolve to keep my conditions to myself. ” And Cheryl, who was diagnosed with Type 1 diabetes after an initial misdiagnosis of Type 2, says, “Many people think I ate my way to diabetes, since I’m overweight, but that’s really not the case. I feel like my food choices are always silently (and sometimes not silently) judged. Look at the backlash that Paula Deen suffered. My reaction to that controversy? How awful that another person has to have this disease, no matter how she got it. It also feels somewhat embarrassing to be ‘sick’ — like a personal failure that one of my organs doesn’t work properly.” Now, however, she says, “I decided to become more public about it,” because among other things, “I’d rather do a shot in the middle of a crowded restaurant than in some dirty bathroom stall.”
As Katherine advises, “Every individual will have their own reaction and coping mechanism” for dealing with long-term conditions and sudden, sharp reversals of fortune. We all grapple with the physical changes and scheduling nightmares, with balancing our privacy and our secrecy, with the desire to share and the longing to be seen as our healthiest, strongest selves. We know that when we say we have cancer or we have diabetes, we have cystic fibrosis or lupus we’re HIV-positive, that you will not look at us or treat us the same way ever again. We just don’t know whether we’ll be met with compassion or a pink slip, with support or with judgment. There’s so much about illness we can’t control. That’s why we care so much about the one thing we always still have power over: the way we get to talk to you about it.
We haven’t even turned the page on the controversy over contraceptives, health care and religious freedom when another thorny one arises involving personal conscience and public health. A flurry of stories over the past few days coincided with seeing a movie that inspires more than passing interest in their subject.
Steven Soderbergh’s film “Contagion” came out a few months ago and was inexplicably and completely frozen out of the Oscar nominations. But it is the most plausible experience of a global pandemic plague you’re likely to see until the real thing strikes. With outstanding performances from an ensemble cast that includes Matt Damon, Kate Winslet, Gwyneth Paltrow and Laurence Fishburne,”Contagion” is stark, beautiful in its own terrifying way, and all-too-believable. The story tracks the swift progress of a deadly airborne virus from Hong Kong to Minneapolis and Tokyo to London — from a handful of peanuts to a credit card to the cough of a stranger on a subway. Rarely does a film issue such an inescapable invitation to think: it could happen; that could be us. What would we do?
With “Contagion” making such a powerful impression, for several days news articles seemed to keep popping up about contagious disease and the conflict between religious beliefs and immunization. There was nothing new about the basics: All 50 states require some specific vaccinations for kids, yet all of them grant exemptions for medical reasons – say, for a child with cancer. Almost all of them grant religious exemptions. And twenty states allow exemptions for personal, moral, or other beliefs.
According to the February 15 edition of The Wall Street Journal, a number of pediatricians are dropping families from their practices when the parents refuse immunization for their kids. “In a study of Connecticut pediatricians published last year,” the paper reported, “some 30 percent of 133 doctors said they had asked a family to leave their practice for vaccine refusal, and a recent survey of 909 Midwestern pediatricians found that 21 percent reported discharging families for the same reason.” They add:
By comparison, in 2001 and 2006 about 6 percent of physicians said they “routinely” stopped working with families due to parents’ continued vaccine refusal and 16 percent “sometimes” dismissed them, according to surveys conducted then by the American Academy of Pediatrics.
But some parents still fear a link between vaccinations and autism, a possibility science has largely debunked. Some parents just want to be in charge of what’s put into their children’s bodies, as one West Virginia politician puts it. And some parents just don’t trust science, period — a few have even been known to fake religion to avoid vaccinating their kids. So there are many loopholes. But now seven states are considering legislation to make it even easier for mothers and fathers to spare their children from vaccinations, especially on religious grounds.
In Oregon, according to a story by Jennifer Anderson in The Portland Tribune, the number of kindergartners with religious exemptions is up from 3.7 percent to 5.6 percent in just four years, and continuing to rise. This has public health officials clicking their calculators and keeping their eye on what’s called “herd immunity.” A certain number of any population group needs to have been vaccinated — 80 percent for most diseases, 92 percent for whooping cough – to maintain the ability of the whole population — “the herd” — to resist the spread of a disease.
Ms. Anderson offers the example of what used to be called “the German measles” – rubella. All it takes are five unvaccinated kids in a class of 25 for the herd immunity to break down, creating an opportunity for the disease to spread to younger siblings and other medically vulnerable people who can’t be vaccinated. If you were traveling to Europe between 2009 and 2011, you may remember warnings about the huge outbreak of measles there, brought on by a failure “to vaccinate susceptible populations.”
Here in the United States, several recent outbreaks of measles have been traced to pockets of unvaccinated children in states that allow personal belief exemptions. The Reuters news service recently reported 13 confirmed cases of measles in central Indiana. Two of them were people who showed up to party two days before the Super Bowl in Indianapolis. Patriots and Giants fans back east were alerted. So far, no news is good news.
But this is serious business, made more so by complacency. Older generations remember when measles killed up to 500 people a year before we started vaccinating against them in 1963. The great flu pandemic of 1918 killed ten times more Americans than died in the Great World War that ended that year and took the lives of as many as forty million globally. Our generation was also stalked by small pox, polio, and whooping cough before there were vaccinations.
In a country where few remember those diseases, it’s easy to think, “What’s to worry?” But as the movie “Contagion” so forcefully and hauntingly reminds us, the earth is now flat. Seven billion people live on it, and our human herd moves on a conveyer belt of perpetual mobility, so that a virus can travel as swiftly as a voice from one cell phone to another.
When and if a contagion strikes, we can’t count on divine intervention to spare us. That’s when you want a darn good scientist in a research lab. We’ll need all the help we can get from knowledge and her offspring.
This 2011 photo provided by Donald Waters shows a fish harvested from the Gulf of Mexico with unusual lesions and infections. Two years after the Deepwater Horizon rig exploded and sank, touching off the worst offshore spill in U.S. history, the latest research into its effects is starting to back up those early reports from the docks: The ailing fish bear hallmarks of diseases tied to petroleum and other pollutants. (AP Photo/Courtesy Donald Waters) (Credit: AP) 
(Credit: iStockphoto/2StockMedia) 
(Credit: jcjgphotography and Monkey Business Images via Shutterstock) 
Kate Winslet in "Contagion" 
