It isn't just cancer and AIDS patients who are suffering because of America's anti-pot hysteria. Hundreds of small-time users are in jail -- for life.
Notes of sanity have begun appearing in the great marijuana debate. In the last election, Arizona and California voters passed, by wide margins, referendums allowing for the medical use of marijuana if recommended by a medical doctor. The Clinton administration, which had set its face firmly against any form of legalization, even for medical purposes, convened an expert panel under the auspices of the National Institute of Health to study the matter further. The prestigious New England Journal of Medicine has editorialized for a change of policy.
If these moves signal a cooling of the war on marijuana, they could not have come at a more crucial time. As Eric Schlosser argues in a lengthy article in the April Atlantic, the war has caused enormous collateral damage — not only to those in pain, but throughout the nation’s courts and prisons. Violent criminals, Schlosser writes, are being released early from the nation’s prisons to make room for the swelling masses of marijuana and other petty drug offenders locked up with mandatory-minimum sentences that carry no possibility of parole. Nonviolent marijuana offenders, especially those sentenced in federal courts, often spend far more time behind bars than murderers. Some are serving life sentences.
Schlosser won a National Magazine Award for his two-part series on marijuana that ran in the Atlantic in 1994. Salon talked with Schlosser about his recent findings, which he says suggests America is “caught in the grip of a deep psychosis.”
In some states, you write, the rate of incarceration for drug offenders has increased so rapidly that new prisons would have to be opened every 90 days to keep up — at a cost of more than $100,000 per cell. With government budget-cutting so in vogue, how did these huge costs escape politicians’ notice?
It’s simple: Policy is not being driven by reason, it’s driven by political expediency. It’s very similar to anti-Communism crusades of the 1950s. The only politicians who feel secure enough to question our policies are those who are out of office.
And, you say, liberals seem to be just as cowed by the hysteria as conservatives.
Yes. As I point out in my piece, last year even liberals like (Sen.) Tom Harkin (D-Iowa) and Sen. Paul Wellstone (D-Minn.) lined up behind (Sen.) Phil Gramm’s (R-Texas) proposal to revoke federal welfare and food stamps from anyone convicted of a drug crime, even a misdemeanor. Politicians of both parties insist on dealing with this issue almost exclusively through the criminal justice system — not through the public health system. If you’re an alcoholic, there are hundreds of rehab programs available; if you’re a drug abuser, the government would just as soon lock you up and throw away the key.
How many marijuana offenders are serving life sentences?
The figures don’t exist. None of the usual federal data sources keep track of nonviolent marijuana cases as separate from other nonviolent drug cases. But we know it’s in the hundreds.
But they would be for the big dealers, not your average user.
Not necessarily. For example, Jim Montgomery, a paraplegic immobilized from the waist down who used marijuana to relieve pain, was busted in Sayre, Okla., with two ounces of marijuana in a pouch in the back of his wheelchair. It was a first offense. He got life plus 16 years.
So, don’t ever get busted in Oklahoma. Are there wide variations from state to state?
Oklahoma is by far the worst in terms of length of sentence. New Mexico is the most lenient. For less than 100 pounds, the maximum penalty is 18 months. For more than 100 pounds, the maximum penalty is three years.
When do the feds get involved?
Federal prosecutors have the right to press federal charges for any amount of marijuana. But guidelines vary from region to region. In some districts, a federal prosecutor will not press charges unless there are more than 100 plants involved, for example.
How has the Clinton administration performed in the marijuana wars?
Under Clinton, the number of marijuana arrests has gone up by more than 40 percent. In 1995, the most recent year we have data on, authorities arrested 600,000 people for marijuana offenses — more than ever before. Next year’s budget for the war on drugs is the largest in American history.
Yet he’s being attacked because drug use has gone up during his presidency. Should he be feeling defensive?
Yes, he does have reason to feel defensive. His law-and-order approach to marijuana is destroying thousands of lives without demonstrably reducing marijuana use. It is a failed policy. Arrests have reached an all-time peak at the same time that use has tripled. People accuse junkies of behaving self-destructively, but in the case of marijuana, the government is even more wedded to such behavior.
You write that a lot of the trouble is being caused by the mandatory minimum sentence laws. How did they come about with respect to drugs?
In some states, these statutes have been on the books for more than 20 years. But the real turning point was 1986. And one high-profile case was all it took. Two days after signing a lucrative rookie deal with the Boston Celtics, star basketball player Len Bias suddenly died, allegedly after smoking crack. The story became the nation’s topic No. 1. Mid-term elections were around the corner, and (former House Speaker) Tip O’Neill knew he had to do something, so he assembled his troops and in about six weeks wrote and passed the most sweeping drug-control legislation in a generation. There was no careful deliberation. There were no public hearings on the mandatory minimum provisions. The result was devastating to the criminal justice system.
How does the law work?
At the state and federal level, a mandatory minimum sentence is triggered by the amount of drugs involved in a case — not by a person’s role in the crime. Whether you’re the guy driving the truck for $1,000 or you own a fleet of trucks and are making tens of millions, you are subject to the same strict penalties.
How much discretion do prosecutors have?
A lot. In many respects they now have more power to determine sentencing than judges. It’s up to the prosecutor to decide how much of the drug to include in the indictment, and whether to file under a mandatory minimum statute at all. They often use these statutes to plea bargain; the ability to pile one mandatory minimum charge on top of another gives enormous leverage to the prosecutor.
In my article I give a great example of just how much discretion prosecutors have. Indiana Congressman Dan Burton, the Republican heading up the House’s investigation of campaign-finance improprieties, and a supporter of life sentences for some marijuana crimes, has a son who has gotten himself into a mess of trouble. Danny Burton II was busted for driving about eight pounds of pot from Louisiana to Indiana. Six months later, police raided his apartment and found 30 marijuana plants and a shotgun. The feds did not press charges. Indiana prosecutors got his charges dismissed. In Louisiana, he got off with community service, probation and house arrest. Under federal drug laws, just for the gun alone Burton could have faced a mandatory sentence of five years in prison. Suffice it to say that most offenders don’t have this kind of luck with prosecutors.
Where do you stand on the debate about the health effects of marijuana?
The Lancet, one of the most influential medical journals in the world, recently concluded — and these are the exact words — “the smoking of cannabis, even long-term, is not harmful to health.” I’m not quite that categorical. It’s clear that inhaling smoke is bad for your lungs. I also believe that people who smoke marijuana on a daily basis put themselves at risk of reversible short-term memory problems. It’s also clear that young people shouldn’t smoke pot. It’s bad for athletic and academic performance, and it can exacerbate emotional problems, too.
So can other substances, which are legal. Why is marijuana still such a target?
I think it has everything to do with who those users are. This society does not scorn all drugs. Alcohol is very respectable. We even allow beer ads on MTV, a network aimed at people 12-24 years old. But pot is different. In America, pot has been associated with the wrong elements: Mexicans, blacks and nonconformists of all stripes. The war on marijuana has little to do with health. It has everything to do with culture. It’s a moral crusade. And moral crusades often have perverse results. In this case, we’re giving life sentences without parole to first offenders for small amounts of a relatively harmless substance.
Besides the successful medicinal-marijuana ballot measures, are there other encouraging signs on the horizon?
At the state level, legislators are getting fed up with mandatory minimums. As prisons get more and more overstuffed, they’re starting to look at alternative sentencing — like boot camps — along with expanded drug treatment. Last year in Ohio they decriminalized the growing of small amounts of marijuana for personal use. The provision was tucked into a larger bill, but nonetheless the bill received the support of the state’s conservative governor, George Voinovich.
At the national level, there’s just extraordinary cowardice. Unfortunately, I don’t think we’ll have any constructive changes in federal marijuana policy in the foreseeable future.
| Suicide in San Diego |
Were cultists recruited on the Web?
“The really frightening thing one finds here is the combination of the technology of the World Wide Web and the old celestial astrology that has been around since the beginning of human history.”
BY JONATHAN BRODER
as of Thursday afternoon, little was known about the 39 men and women who were found dead in a luxurious house in Rancho Santa Fe, Calif. They were of various ages, sported buzz-cut hairstyles, and were found with purple shrouds covering their faces and chests. They also reportedly worked for a Web design company called WW Higher Source. One of the Web sites designed by Higher Source, according to news reports, was for an organization called Heaven’s Gate — which planned to leave Earth and rendezvous with a spaceship behind the Hale-Bopp comet. It appears that the victims were members of this organization.
“The joy is that our Older Member in the Evolutionary Level above human (the ‘Kingdom of Heaven’) has made it clear to us that Hale-Bopp’s approach is the ‘marker’ we’ve been waiting for,” a statement on the Heaven’s Gate site read. “Our 22 years of classroom here on planet Earth is finally coming to conclusion — ‘graduation’ from the Human Evolutionary Level. We are happily prepared to leave ‘this world’ and go with Ti’s crew.”
If, as now appears, the 39 people committed mass suicide, what would have been their motivation? Salon spoke Thursday with Larry A. Trachte, assistant professor of religion at Wartburg College in Waverly, Iowa. Trachte, who is also the college pastor, has taught courses on contemporary religions and sects for the past 15 years.
We’ve had People’s Temple, the Order of the Solar Temple and now Higher Source. What makes these groups commit mass suicide?
I don’t think they see it as suicide. As bizarre as it might seem to us, I’m sure that they saw it as moving on to another dimension of existence. Much as a Hindu or Buddhist would, in the sense of a reincarnation or migration to another realm of being.
So the people who died in Rancho Santa Fe weren’t committing suicide, they were moving on to another adventure in some other dimension?
Yes, and I might add that there are traces of that belief in some Eastern religions. Suicide is often viewed in Buddhism as a noble way. Death is not seen as an enemy or as something to fear or flee. Even suicide is seen in a much more different light than in the West.
Based on what we know as of now, is there anything about this California group that sets it apart?
The really frightening thing one finds here is the combination of the technology of the World Wide Web and the old celestial astrology that has been around since the beginning of human history. You have an interesting dichotomy of beliefs coming together. There are literally thousands of groups like this all over now. All you have to do is search for them on the World Wide Web.
Why is the Web so attractive to these groups?
It adds an entirely new dimension to recruiting and accessibility. It opens up another dimension of cult possibilities and awareness that never existed before.
Many of the people who are drawn to cults are seeking absolute answers. They’re often very bright, but they’re introverts in terms of social skills and personality. So getting into religion on a computer is perfect for these kind of people. It provides instant access, it knows no geographical bounds, it allows for anonymity and yet a high degree of individuality. So just as people use their telephones for sex, you can use your computer for religion.
Again, based on what we know so far, does this San Diego cult sound like a doomsday or millenarian cult?
No. I didn’t hear any of the language you would expect to hear from a doomsday or millennialist group that sits around waiting for the end of the world. It sounds more like a combination of some of the dimensions of a UFO cult, plus the appearance of this Hale-Bopp. Add the fact that it was highly organized — probably around a leader and therefore highly suggestible — and you end up with a rather unique combination of things.
And that’s true of many of the new groups now. They’re very creative. They’re creating their own rules and theologies. And to the extent that groups like this have access to tens of thousands of people on the Internet, that’s kind of scary. It used to be that you had to stand in an airport to recruit those who wandered by. Now, all you have to do is open up a Web site.
Is there any significance that this apparent mass suicide occurred around the solstice and Easter?
It appears this was a rather eclectic group, drawing from different sources and associations. So given that this is Holy Week, I’m sure that was one part of it. But I’ve heard their suicide was their way of joining a UFO that was traveling behind the Hale-Bopp comet. Some have suggested this was a strictly Christian group, but it doesn’t sound very Christian to me. I would say it was more of a contemporary, New Age sort of group with a strong leader.
The age-old question: What kind of people join these groups?
One shouldn’t oversimplify, but generally, it’s people who are searching, who are discontented. They are idealists. They’re often very bright and creative, the kind of people who easily become bored with mainline religion and want a new kind of adventure. At the same time, they are often looking for absolute answers. It’s an interesting dialectic. I don’t think it’s accidental that many people who lean toward the sciences end up as fundamentalist Christians. On college campuses, the science departments often are the most conservative departments. These are people who are quite literal thinkers. They’re looking for hard facts, answers, someone to tell them what reality is.
So in these cults, you have, on the one hand, the vulnerability of people who are searching and frustrated, combined with people who have some very creative answers that are exciting, new and adventuresome. But they’re often also very isolated, in some ways the misfits of society. They don’t have a lot of close relationships. The cults create pseudo-family. It was interesting to hear that even with all these people in the San Diego house, no one was talking to one another. They were always in front of their computer screens.
Yet while they may not have spoken with one another, they all died together. So they must have related to one another in some way.
Or to the leader. The definition of a cult is that it has an absolute leader who exercises absolute authority over the followers. So if the leader says, “This is what we’re going to do,” that’s what they do. And whether that leader is Jim Jones or Do, as they called this fellow in San Diego, or David Koresh, the basic allegiance is to the leader. He is the one who dispenses reality. And if that leader says it’s time to check out of this world and go on to the next, his followers check out.
Komen for the Cure sells out women, again
The pink-ribbon charity, with a Sarah Palin ally as senior policy director, turns its back on Planned Parenthood
Karen Handel and Sarah Palin in August, 2010. (Credit: AP/John Bazemore)
First, the good: Since its founding 30 years ago, Susan G. Komen for the Cure has put over a billion dollars toward research, screening and awareness in the name of eradicating breast cancer. It’s certainly no coincidence that in that same span of time, breast cancer rates have declined sharply, and what was once a devastating diagnosis is now, for many, a treatable condition.
Yet when the news broke Tuesday that Komen was ending its funding for Planned Parenthood breast cancer screenings and services, the organization’s eagerness to throw Planned Parenthood – and the women who depend upon it – under the bus wasn’t surprising. It’s actually thoroughly unshocking for this venerated organization to pull such a crass, insensitive move.
The very name Susan Komen — with its direct association with a real woman, and founder Nancy G. Brinker’s promise to fight the disease that claimed her sister — is heart-tugging. Today, everyone who knows a woman likely has a breast cancer story – and with it, a Komen-flavored story about donning a pink T-shirt and running in a Race for the Cure, or shopping in October for pink-themed “Girls Just Want to Have Fun” notepads to help raise “awareness.” Along the way, Komen has become the McDonald’s of cancer — an easy-to-remember brand with a logo that demands little thought or effort from the consumer. Write a check, buy a ribbon, voila! You get to feel like you’re curing cancer.
It’s not that Komen is some questionable, Wyclef Jean-esque mess. It gets high marks from both the Better Business Bureau and Charity Navigator. Yet this is an organization that has repeatedly come under fire for its extravagant promotion of itself as an organization dedicated to a “cure,” when only a small portion of its expenses go to, you know, curing cancer. Komen itself cops to portioning just 24 percent of its funds to research – and 20 percent to fundraising and administration. For an organization with reported revenues of nearly $350 million, that’s still a lot of money for research. It’s an awful lot for itself, too.
Yet Komen remains pretty damn territorial around that whole “cure” thing. In a 2010 story for the Huffington Post, writer Laura Bassett pointed out that, according to Komen’s own financial records, it spends almost “a million dollars a year in donor funds” aggressively going after other organizations that dare to use the phrase “for the cure” – including small charities like Kites for a Cure, Par for the Cure, Surfing for a Cure, Cupcakes for a Cure, and even a dog-sledding event called Mush for the Cure. Let me just give you that number again. A million bucks a year. Robert Smith, better watch your back.
Komen has also, in its relentless pursuit of ubiquity and corporate sponsorship, aligned itself with more dubious product placement than a “Jersey Shore” marathon. It has a whole online store encouraging visitors to “purchase with purpose to end breast cancer forever,” where you can buy “silicone bling watches” and “Passionately Pink” ribbon-shaped cake pans. And because you’ll have to root around for the numbers, you can spend extravagantly on candles and “spirit gloves” without knowing that merely “at least 25 percent of the retail sales price … will go to Komen to help support … research and community programs.” Twenty-five percent of that $4.95 dog leash? Why, that’s more than a whole dollar!
Komen also famously outsources its merchandising. It’s teamed up with the likes of KFC for “Buckets for the Cure” – because nothing says you care about women’s health like a big vat of fried chicken. Komen has additionally sold a pink-hued “Promise Me” perfume that contains several toxins – including galaxolide, a synthetic musk that critics claim is a hormone disruptor. Komen has promised to reformulate the scent this year, but as Uneasy Pink calculated last spring, that’s still a lot of questionable chemicals to buy when roughly only 3 percent of the purchase price will go to Komen’s oft-invoked “cure” anyway.
And what of Komen’s latest, most potentially damaging stunt with Planned Parenthood? Komen says the move is just about “newly adopted criteria barring grants to organizations that are under investigation by local, state or federal authorities.” You know what else is pretty “new” around Komen? Its senior vice president of public policy, Karen Handel. During the Sarah Palin-endorsed, Tea Party favorite’s 2010 campaign for governor of Georgia, Handel declared, “I do not support the mission of Planned Parenthood,” making clear that she “strongly supports” laws prohibiting “the use of taxpayer funds for abortions or abortion-related services.” She did, however, emphasize that she “strongly support(s) the noble work of crisis-pregnancy centers.” If you were one of the world’s biggest charities and were looking to hire someone who had women’s welfare as her greatest imperative, would you go for someone who’d send them to a place that offers breast cancer screenings – as well as ovarian cancer screenings and HPV tests? Or someone who prefers a bunch of right-to-life fanatics pretending to be a medical facility? If you picked the former, you’re smarter than Komen for the Cure.
That Komen has raised staggering amounts of money is undeniable. There’s also pretty compelling evidence that it has done so in some pretty boneheaded ways. So given its track record, it’s fair to ask what happens now to the 11 percent of the Komen budget that goes to screening. Does it get funneled toward more glitter bracelets and “Promise Bears”? And what happens to the women who depend upon Planned Parenthood to tell them whether or not they have breast cancer? What becomes of mothers and daughters and wives and friends who believed that Komen’s commitment to “the cure” meant something more than protecting its catchphrase? It’s worth noting that while breast cancer rates are dipping, an October report from the American Cancer Society warned that they are declining more slowly among low-income women, and that “Poor women are now at greater risk for breast cancer death because of less access to screening and better treatments. This continued disparity is impeding real progress against breast cancer.” You know who loses when Komen backs away from Planned Parenthood? Probably not those nice, pink-clad ladies who attend Susan Komen wine-tasting events.
Women’s healthcare is not about lace-trimmed scarves and bottles of perfume. It’s sure as hell not about some feel-good, lip-service version of what my colleague Rebecca Traister calls “infantilizing Pepto-ed advocacy.” It’s not even — for anyone still stupid enough to think Planned Parenthood is some giant fetus-killing complex — about abortion. It’s about screening. It’s about treatment. It’s just that simple. The further away an organization gets from that mission, the more women suffer. It’s just that simple too. And you don’t make good on a “promise” to your dead sister by selling out women who need you most.
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. More Mary Elizabeth Williams
“I have your results”
Three months into a draining clinical trial, the doctor called with news. Was it working -- or not?
(Credit: bendao via Shutterstock)
I had just settled into a chair for my regular Tuesday night cancer support group when I got the call. An unfamiliar number. A split second of wondering whether or not to answer. And then my doctor, calling from his own phone to say, “I have your results.”
People with metastatic, Stage 4 melanoma rarely get happy endings. They usually just get endings. The odds of surviving five years once the cancer has spread into your lungs and bloodstream are generally ballparked at around 10 percent. So when I entered a Phase I immunotherapy clinical trial in October, I knew the whole enterprise had the pungent aroma of Last Ditch. My doctors said brightly that my relative youth and good health made me “an ideal candidate.” They said that the drug combination I’d be on – the newly approved Ipilimumab and the experimental, sexily named MDX-1106 – were highly “promising.” And because it was a trial, Bristol-Myers Squibb would essentially foot the bill. They had also just told me that the malignant cancer I had surgery for in 2010 had broken off; there was now a tumor in my lung and another one under the flesh of my back. In the stark absence of other options, I signed a 27-page consent form alerting me to potential side effects from diarrhea to hepatitis and even death. And with that, I started on a protocol that I hoped wouldn’t kill me before the cancer did.
Every three weeks, I spend a day on the fourth floor at Memorial Sloan-Kettering, hooked up to an IV as strange new drugs drip into my system. Every week, I am monitored and quizzed and examined and have truly ludicrous amounts of blood drawn. The external effects of the regimen presented themselves early on – crushing exhaustion, an itchy rash, dizzy spells – but I would have to wait three months, until January, to learn whether the drug combo was doing any real work on my cancer. The fact that the lump on my back subsided after the very first treatment was encouraging enough to get my doctor enthusing, but having been declared “cancer free” once before, I knew to temper optimism with caution. Especially because these are uncharted waters.
Immunotherapy, my doctor says, is like religion. “For years,” he tells me, “we just had to go on faith.” It differs radically from chemo in that it coaxes your body’s own defenses to attack disease – and then, astonishingly, to continue defending the body after treatment has ended. It’s still considered a new frontier in cancer care, and at first glance, it’s easy to see why. Its main forerunner is Interleukin-2, an immune-system treatment for patients with metastatic cancer that is infrequently used and only sporadically effective. And one of the immunotherapy drugs I’m on, Ipilimumab, won FDA approval last year with a mere 30 percent success rate.
Yet the way we treat – and try to head off – cancer is changing radically. Look no further than the rise of the vaccine Gardasil. Since its approval in 2006, it has been routinely given to girls to help ward off HPV, which can cause cervical cancer. And just last week, the Roswell Park Cancer Institute in Buffalo launched a Phase 1 clinical trial for a vaccine researchers say “harnesses the power of the body’s immune system to kill cancer cells.” Imagine a world in which preventing and treating cancer didn’t automatically mean harsh protocols like chemo, radiation or interferon. Imagine something that might someday be as simple as getting a shot. It’s coming. Because as my clinical trial nurse puts it, “It’s the immune system, stupid.”
That dramatic day, however, is still a long way off. In the meantime, if the other 10 people doing this trial at MSKCC are anything like me, they’ve been dealing with scarred veins, side effects and nagging uncertainty. Science may be moving at a breathtaking clip, but when you’ve got a cancer that often kills within a year, it simply may not be moving quickly enough for all of us.
That’s why when my doctor said he had my results, I wasn’t sure I wanted to know. I had been at MSKCC just that morning, guzzling sickly sweet, room-temperature liquid and holding my breath inside the CT scan machine. After three months of infusions, I’d now know whether that spot in my lung was growing or shrinking, whether my cancer was accelerating or diminishing. That night, as I stood in the hall outside my support group, I held my breath again. And then my doctor told me, “I have good news.”
“The tumor in your lungs is gone,” he continued, “and the one on your back has receded completely.” I don’t know a lot of fancy medical jargon, but I do know that “good news,” “gone” and “receded completely” are, for a person with distant metastases, downright extraordinary.
Two days later, I was back at Sloan-Kettering, awaiting my next infusion. “I know you can’t reveal much,” I’d asked, “but can you say anything about how the other people in the trial are doing?” I may be thriving, but if it turned out other patients were dropping like flies, I’d hold off on popping a bottle of Dom.
“We had two other patients who had scans this week,” the doctor said. “Both of their tumors have shrunk significantly. But you’re at 100 percent, so that makes you our valedictorian.” And while it’s nice to be valedictorian, what it really means to a team of researchers — and Bristol-Myers Squibb — is that I am solid results.
This isn’t a happy ending. People with Stage 4 cancer don’t really get those. This isn’t even an ending. I’m still only halfway through a trial that is kicking my ass. After I complete it in March, I will be on maintenance treatment every three months for the next two years. I will have skin checks and MRIs and scans for the rest of my life. I will live with the reality that melanoma, as I have already learned firsthand, makes more comebacks than Cher. And nobody really knows for sure what the long-term effects of my treatment are, because nobody’s ever done this particular course before. I’m hoping they include super strength and sexual charisma, but liver damage seems likelier.
Yet right now, I have hope that the middle-aged woman in Treatment Suite 26, the one whose elderly father sits by her side as they watch “Dr. Phil” together, is getting better. That the tall, 20-something guy in the Superman T-shirt, a genial fellow who tells me the cancer has already come back twice before, is too. And it’s a humbling and fantastic thing to consider that, someday, because of what the sick and the healers are doing on the fourth floor, you might get to survive, too.
When I went in for my last treatment, my doctor asked if I wanted to see my scans. You bet I did. He sidled over to a monitor in the corner of the exam room and brought up an image dated Oct. 6, 2011. “This is your lung,” he said. “See that there? That blob? That’s the tumor.” Then he brought up another image right next to it. “This is you now.” It looked just the other one, but with one significant difference. No blob. He did the same for the picture of my back. “Here’s the cancer,” he said. There was a green arrow pointing to it, a flag that some technician added three months ago, a little signpost of malignancy. “And this,” he said, double-clicking on a different picture, “is you now. Nothing.” Nothing has never looked so beautiful.
“Wow,” I replied. “That’s amazing.”
“Yeah, it is,” he said, beaming. “It’s more fun when it works.” I looked at the monitor and smiled too. Within those weird, abstract images I could see so much, so clearly. I could see sunsets and birthday parties; I could see snowmen and sand castles. And I thought, yup, it’s the best fun ever. It’s even better than a happy ending. It’s a future.
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. More Mary Elizabeth Williams
Losing my husband, 140 characters at a time
After Kevin got cancer, all my rage and isolation went onto Twitter. Was I embarrassing myself, or rescuing myself?
There was a time when I kept private journals, chronicling stories of time with my husband as if words could nail down a life and build strong, warm walls around us. That was before cancer. A kind you’ve hopefully never heard of, a sure, slow killer. Once we’d slogged through a couple of years there, I logged into Twitter and didn’t grapple with whether or why. Rather than holding us together now, I was a spectacle of flying apart. Twitter unleashed my inner ranting-woman-on-the-subway. You know the one — no inhibitions, breaking the code of civilized silence.
Obsessed with idea of being alone in a room w/old unwanted glassware & crockery, obliterating things till satiated, then someone else sweeps 7:25 AM Aug 3rd, 2009 from web
Consider the supermarket sagas. It was a place I spent a lot of time, both because I had young children to feed and because that’s where the pharmacy was. I would wait in line to pick up the narcotics and antiemetics, trying not to look at the varied pleasure-enhancing condoms. If my husband Kevin hadn’t “followed” me, I would have whipped out my phone to share some bitter thoughts about ribbed strawberry rubbers. But when I wheeled my cart away after begging for one or two pills to get him through a Sunday night, I did tweet:
sobbing in Hannafords where pharmacist unmoved by pain of stage IV metastatic cancer. 4:38 PM Jun 14th, 2009 from mobile web
HE, unlike me, would be a more diligent caretaker of his loved one. He basically said this. 4:41 PM Jun 14th, 2009 from mobile web
With a bit of distance I see my tweets as a record of how stress and trauma affected me. Most times in my life, I surely would have headed to the car at any early sign of impending tears. But I just didn’t care. I needed juice boxes and cat litter.
When Kevin and I met, we uprooted each other. He was all Berkeley and blue eyes with lightning wit, crazy intellect, consuming passions — books, politics, computers, for some reason, me, even if I had to kiss him the first time, sitting on a beach in winter as a cold wind came off the Pacific.
But we lived on opposite coasts. I was seven years older. It was improbable and romantic, but he quit a good job, packed his belongings — with a bit of the grad student’s soul still — into a two-door Honda Civic and drove to my house in northern Vermont. Kevin missed his friends and the rhythm of the city, but we got a Newfie and we cooked, and when his favorite Latino band came from L.A., I danced like never before. Through it all I made notes of the absurd and the beautiful. The idea of tweeting that time would have felt as substantial as blowing bubbles into the sky through a child’s plastic bubble wand.
Yet soon enough we had both the child and the requisite plastic wand. Kevin would blow hundreds of bubbles — the signal that bath time really was over — to the sound of riotous laughter as they popped over sweet soaped toddler skin. I can still hear the giggles.
We had eight years together, a son and a daughter before cancer turned vibrant life fragile. It was mostly Kevin who fought to make the time count, even when it was hard, but I would try. Between rants I told some lighter stories on Twitter.
When taking a hot bath to relieve an aching back, allowing a 5 yr-old in is approx. as therapeutic as tubbing with a dolphin. Cheerful tho. 5:16 PM Jun 20th, 2009 from web
What’s most apparent, however, looking back over my tweets, is the isolation and the anger. No one in the supermarket ever asked if I might need help, at the hospital it was worse.
Why do people say things like “you don’t look too happy” to a woman standing alone outside surgery waiting room? 4:56 PM Aug 14th, 2009 from mobile web
I was almost always alone in hospitals, waiting for news from the operating room, waiting at Kevin’s side in the E.R. or by his hospital bed, often watching agonizing pain and struggle for breath. He had epithelioid sarcoma that originated in his pelvis then made its way through the lymph system to his lungs causing repeated collapse on both sides. The cancer itself was inoperable, but its side effects, along with radiation and various experimental chemotherapies, kept the specialists and the baby sitters busy.
Our social circles were small, our families far away. We were our own closest friends, content together, somewhat to our detriment I recognize now. Still, we were introverts not hermits. People are busy, I know. Medical drama is scary. But the ache and fatigue of relentless crisis gets etched in deep. I now view these dispatches as a defiant cry to be seen, to testify, bearing witness to suffering in 140 characters or less.
Kevin out. Surgeon-shoes splattered red-said it was hard but successful. Says he left him with two large tubes, minus couple cups of blood. 4:38 PM Aug 19th, 2009 from web
The surgeon had put in chest tubes to reinflate the lung, a procedure that gets trickier with repetition, we were told, as the penetrated skin grows thick and crinkly. Finally they let me into the post-anesthesia care unit to sit with him where the nurse drifts close as he slowly shakes off the bliss of unconsciousness.
Obvious I guess but hospitals r so gory. In PACU, neighbor dramatically swallowing blood. Then he laughs & wonders how the other guy (K) is. 6:37 PM Aug 19th, 2009 from web
Never did this become routine for me. I couldn’t read or surf the Net. I sat rigid with anxiety and sorrow, my eyes traveling from the beeping electronic monitors to the tubing that snaked from multiple parts of Kevin’s body to the strong arched cheekbones in his faraway face.
“The other guy” much more peaceful, tho im watching his blood gurgle disconcertingly thru tube. Thankful no twitter while I was giving birth 7:09 PM Aug 19th, 2009 from web
Dismissed to a room on the oncology floor, everything changes. Anesthesia is over. In less than two hours:
Peace turned to pain. Incomprehensible. 8:51 PM Aug 19th, 2009 from mobile web
There were friends and even loving daycare teachers who did take stints with our little ones, 5 and 2 when it all started. But I suppose I was hoping for more of a reaction from my tweets, maybe a SWAT team, though someone said that following me was like watching a distant train wreck through binoculars. What we got was a flurry of casseroles and “How can we help?” queries at the beginning and at the end of a nearly four-year ordeal. One person asked if we’d like bagels. Probably someone showing up with an assortment of poppy, pumpernickel and plain would have felt nice. We didn’t need bagels; we needed people. I didn’t know how to answer, and bagels never came.
I guess “tweeting” is too gentle, like a birdsong rising into the skies. Is there a shouting social network? 9:57 AM Sep 11th, 2009 from mobile web
Panic in the E.R. came in two forms. There was whatever-was-happening-to-Kevin, and there’s me, frantically walking from his curtained cubby to somewhere I could get cell reception, piecing together, while the battery lasted, a complicated plan to get the kids from daycare and school (at times in different towns) and through the evening until I felt OK leaving him. In the order of things, that had to be first. But just once, so early they hadn’t yet diagnosed the problem as cancer, Kevin was having a scary surgery on a Sunday night when the waiting room was ghostly quiet. A friend called. She’d made a plan with the other buddy in our triad. They showed up with knitting and a bottle of wine that we drank surreptitiously from paper cups. I actually laughed through the fear.
Hard being invited to a party, location: casa bon vivancy. People SHOULD celebrate life. But in casa de cancer, you’re living on an island. 9:51 PM Aug 6th, 2009 from web
I put us all in a shop window, and I didn’t make it easy to follow me.
One definition of heartbreak: 9- and 5 1/2-year-olds bending over a bed rail to give a last kiss & say, “I love you Daddy. I’ll miss you.” 5:34 PM Nov 17th, 2009 from web
Sometimes I ask myself if I regret the raw edge of this display. I read mocking reviews of “yet another cancer memoir,” and I wonder if the writer has walked those particular library stacks (that’s how we did it, pre-Amazon, back when I was 28 and my dad was dying of cancer) or paced those hospital floors.
Maybe I did get something I needed from Twitter. With no one’s permission, I gave myself a voice. Sometimes tender, furious or frantic, sometimes quivering with fear from bed in the middle of the night, listening to the too-labored breathing beside me. I needed to say these things and imagine some heart in the Twittersphere absorbing my crazed reality. My tweets may have merited the discreet, embarrassed looking away that we give the seemingly unreachable ranting woman on the train. I’m OK with that.
Since the first surreal days and weeks after Kevin died, my tweets have tapered to barely a trickle, though if I thought he would DM me I would tweet all day.
The first time his birthday came without him, I did post:
Kids and I just launched balloons into the night with glow sticks attached, green light disappearing into the sky. We love you Kevin. 9:22 PM Sep 28, 2010 from web
@leeanncox now turning off #cancer, #death, #widowhood.
Why Barbie should go bald
A campaign for a chemo-themed doll catches fire
(Credit: Facebook)
She’s the perfect woman. Million-dollar smile, massive gazongas, an insane resume that includes stints as an astronaut and a mermaid. Even when she goes a little edgy, she’s still flawless. And it’s that perfection that’s made her, for over 50 years, an idol to little girls everywhere. So what if Barbie was to get a makeover unlike any of the thousands she’s had in the past? What if were Barbie were to lose her iconic glossy tresses?
What began as a small Facebook campaign in December to urge Mattel to create a Bald and Beautiful Barbie has, in recent days, blossomed in to a full-on groundswell. It’s attracted international media attention, and the Facebook group is closing in on 90,000 members. Think of the possiblities for cute hats!
The concept came from a group of parents whose children had hair loss from cancer treatment. Rebecca Sypin, whose daughter has been in treatment for leukemia the past two years, told MSNBC this week, “We would go to the store and people would stare or kids would ask her why she’s bald. It’s not something they’re used to seeing. We think [a bald Barbie] would be therapeutic and I think it would help baldness become more quote unquote normal. It would be seen. It wouldn’t be this odd thing that people don’t have hair.” There are already a small number of dolls targeted for kids who are facing hair loss – either their own or a parents. But they’re generally softer, educational props aimed at younger children. No one with the cultural wallop of Barbie has ever ventured into the scary terrain of baldness — and the array of diseases that it implies.
What neither the Facebook campaign nor Mattel have yet to address is the way that Barbie has long been an icon to adults as well as children. Any woman under the age of 60 grew up with her. And Mattel’s reliable marketing to grownups proves that you don’t have to play in the Dream House to have a soft spot for the plastic lady, despite her impossible-to-achieve lifestyle and physique. A bald Barbie wouldn’t just be a unique role model for little girls; I guarantee she’d be a runaway hit with women dealing with hair loss and the identity issues it creates — and it’d be a boon to their daughters. I know a harrowing number of women with cancer, and not a one doesn’t have a very complicated relationship with the issues of baldness, wigs, and femininity. To be both “bald and beautiful” is a powerful concept, one that ought to resonate far beyond childhood.
Though Mattel initially responded to the campaign with a form letter that it “doesn’t accept ideas from outside sources,” the company expanded in a more public relations friendly statement Thursday that “We are honored that Jane Bingham and Beckie Sypin believe that Barbie could be the face of such an important cause. Mattel appreciates and respects the passion that has been built up for the request for a bald Barbie doll… We are constantly exploring new and different dolls to be added to our line.”
Yet it’s understandable why Mattel might be reluctant to roll out a Barbie whose head is as smooth as the rest of her body. Accepting an outside concept might easily put the company in the vulnerable position of having to pay someone for it. But there’s perhaps another reason. Barbie does a hell of lot – she has been a cashier and a U.N. ambassador in her time – but she doesn’t walk with her heels on the ground and she doesn’t get cancer. She may have had a friend in a wheelchair, but Miss Thing herself will likely forever remain impervious to disease. If the consumer demand is there, however, she may yet acquire a buddy with a jaunty, Pucci-inspired scarf. And that’s a good start.
The fact that a loving group of parents had the notion to look at the doll that generations of females have exhausted themselves trying to emulate and asked aloud how she could become a figure of hope and strength is impressive. It’s a testament to her power as a standard bearer. Most girls, whatever their health or their hair, don’t see very much of themselves in their Barbies. What they do see, however, is a girl who is popular, successful and smiling. The enduring appeal of Barbie isn’t just her tiny waist and fabulous accessories. It’s that, bless her nonexistent heart, she is happy. Where there’s happiness there’s hope. And where there’s hope there’s healing. A bald Barbie wouldn’t cure cancer. But a doll that represents possibility, to both children and adults facing the pain of disease and the day-to-day ordeal of looking different, would be so much more than beautiful. She’d be a beacon of joy. She’d be perfect.
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. More Mary Elizabeth Williams
The post-surgery secret your doctors won’t share
The very operations that save your life leave psychological scars that can be very slow to heal
(Credit: garloon via Shutterstock)
We stood together in the bedroom, he and I. It was a week after the operation, and it was time for the bandages to come off. He gently peeled off the first one, under my left breast, where the surgeon had gone in and excised a small tumor from my lung. He peeled off the second one, where the camera that had found the tumor had gone in. He peeled off the final one, where the drain had been. When he was finished, I turned to look at myself in the mirror, at the triangle of wounds around my chest, and started to cry. “I’m angry,” he said. “I’m angry they did this to you.” And so was I.
When you go in for surgery, your doctors will tell you not to eat after midnight. They’ll tell you what kind of narcotics and ointments and stool softeners you will need afterward, and when you can eat solid food or lift heavy packages. What they probably won’t mention is that you might feel surprisingly traumatized.
Before my first cancer surgery in 2010, when my doctors removed five centimeters from my scalp, several lymph nodes, and a patch of skin from my thigh, I was considerably more freaked out by the aggressive malignancy in my body than the prospect of going under the knife. Afterward, I wrestled in predictable ways with the pain of recuperation and the grief over my lost hair and flesh. Yet when I faced a second surgery a year later, I was shocked to realize that amid all the new health fears, I was terrified by the prospect of the procedure itself. The whole process, from the long, cold walk into the operating theater through the groggy feeling of waking up in post-op, filled me with anxiety. But it was the part in the middle – the knowledge that strange hands would be cutting into me and exploring my insides, taking little pieces of me, that seemed most harrowing. Why, I wondered, didn’t any of my doctors mention anxiety and anger as a potential aftereffect? The spirometer they handed me when I left the hospital wasn’t going to help with that.
A patient’s fears about a condition that requires surgery and the physical aftershocks of recovery are difficult enough. Factor in the foggy, often unpredictable reactions to anesthesia, the intensity of the surgical experience, and the body’s natural stress responses, and it’s not exactly surprising that many of us will find ourselves shaken up. The Center for Integrative Medicine compares surgery’s potential for trauma with that of assault, accidents and combat. A stunning one in five patients reports depression after heart surgery. It’s so common that it’s got its own name – cardiac depression. And the journal Primary Psychiatry notes that surgery can not only exacerbate preexisting conditions like anxiety disorders and bipolarism, it can bring on PTSD, especially when the surgery is for a traumatic event or the recovery process is complicated.
As it happened, just as I was preparing for my operation, a close friend with ovarian cancer found herself in the hospital for a complicated emergency surgery. When we spoke afterward to compare notes, I confessed that the process had left me feeling alarmingly invaded. “They just keep cutting off pieces of me, bit by bit,” I said. “I feel robbed.” She answered with a weary assent and an admission that has haunted me ever since. “I just don’t know,” she replied, “how many more times I can get back on that table.”
Not everybody goes through the emotional wringer after an operation. My pal Chez says that after his brain surgery, “I was just happy to have survived.” And in the days after her surgery for thyroid cancer, my neighbor Stacey says she felt little more than “exhaustion and helplessness.” But my friend Meera had a different experience. “I felt as if something had been taken away from me,” she says. “It was nice not to be in pain anymore, but damn, surgery is violent. No one warned me of that. ”
So when an acquaintance said last week that he was facing the prospect of an upcoming operation with an overwhelming sense of “violation,” I understood exactly what he meant. Because I’ve felt it too. A lot of us have. Of course, we’re immensely grateful for the procedures that mend our bodies and save our lives. Few of us get out of this world unscathed, and if we need to surrender a few pieces of ourselves to stick around with less pain and for a longer time, that’s a fair tradeoff. But maybe if our surgeons mentioned that we might feel very mad at them, we wouldn’t wind up quite so mad at them. Maybe if we knew, going in, that there was a possibility we’d come out traumatized, we’d be better equipped for the psychological storms ahead.
My little triangle of gashes – like that red rectangle on my thigh — is pretty damn cool. But sometimes when I step out of the shower and catch a glimpse of myself in the mirror, I can’t help a sudden flare of rage. They cut me, I think. And it scares me and it pisses me off. I would rather have my life than a pristine expanse of skin. Anyone who’s been through a similar experience would say the same. But the scars of surgery aren’t just on the body — and sometimes the cure can be almost as devastating as the sickness. That’s what nobody ever told me.
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. More Mary Elizabeth Williams
Page 1 of 36 in Cancer
America’s Ports: The Place Where Old Trucks Go To Die 
My Battle With Mesothelomia 
The Juxtaposition of Small Government and Big Religion 
The Jeremy Lin show 
Santorum tests positive and negative 
When sexy ads cross the line 
House Republicans lose their will to fight 
When Iran and Israel were friendly 
The anti-Santorum onslaught begins 
Occupy defends the Volcker Rule 
Nancy Grace is more terrible than ever 
How to write about poor people 
Obama to unions: See you later 
