Cancer

Casualties of the Marijuana War

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.

Lowell Weiss is a Boston writer. He was formerly a speech writer for Vice President Al Gore and a staff editor at the Atlantic.

Kate Hudson’s cancer horror show

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

Kate Hudson in "A Little Bit of Heaven"

Ladies and gentlemen, we are gathered here today to mourn a sad loss. A luminous, unique presence who ably graced our lives and then was snuffed out far too early. A moment of silence, please, for Kate Hudson’s career.

It seems like only yesterday we were beguiled by the lively, bohemian Penny Lane in “Almost Famous.” But it’s been a painful decade since, as I know many of you gathered here can bear witness. Those of you who steadfastly supported Hudson over the years, who paid good money for “Bride Wars,” for “How to Lose a Guy in 10 Days,” for “Raising Helen,” “You Me & Dupree,” “Fool’s Gold,” “My Best Friend’s Girl,” “Alex and Emma,” “Le Divorce,” and “Something Borrowed” — you know what I’m talking about. You’re heroes for sticking around this long. That’s why it’s both tragic and necessary to come to the end of our journey now, to let her go off to a better place. The D-list. It’s called “A Little Bit of Heaven.”

The movie, which opens in theaters Friday and is available on demand on iTunes, tells the story of Marley, a free-spirited young New Orleans advertising executive. Marley has good friends — including a pregnant lady and a gay black man, because she’s awesome. She has an adorable dog and a penchant for casual sex and whimsical bike riding. But no sooner can her pals offer a champagne toast celebrating the “youngest and hottest vice president” in her company’s history than things start to go terribly wrong. Like millions of helpless white people every day, Marley begins having visions of a cool African-American as God. There is no known cure. Once Marley starts chatting with Whoopi Goldberg in that ethereal, cloud-heavy set, you know she’s in trouble. She’s got terminal Movie Cancer. Naturally, this is the perfect opportunity for her to get in touch with her feelings, have many scenes of hugging her crying costars, and start banging Gael García Bernal. It’s a little weird because he’s supposed to be her oncologist.

It’s not easy making entertainment out of cancer. Yet Showtime’s “The Big C” has mined the terrain to Golden Globe-winning effect. Llast year’s “50/50,” based on writer Will Reiser’s real experiences as a young person suddenly diagnosed with a potentially fatal diagnosis, became a critically acclaimed sleeper hit.  And when you’ve got a condition that will directly affect roughly 41 percent of us, there’s surely some dramatic and comedic resonance to be found in the subject matter. Speaking as someone who has had Stage 4 cancer and endured a clinical trial, and who believes firmly that anyone who’s been through all that ought to at the very least get to bang Gael García Bernal in the Big Easy, I am the ideal audience for this movie. Why, then, somewhere around the inevitable shopping spree montage, did I scrawl the words “WORSE THAN CANCER” in my notebook, and then underline them fiercely in the darkness?

Maybe it’s the way Bernal, as a doctor with seemingly zero ethical problem about sleeping with his terminally ill patient, says “schmuck” – because he’s supposed to be Jewish. Maybe it’s because Kathy Bates, as Marley’s mom, looks like she’s trying so hard with such unforgivable material. Maybe it’s because the biggest audience laugh of the whole movie came when Hudson said, with a straight face, “Come on, Doc. Level with me.” Maybe it’s because when Peter Dinklage, as a male escort, says the title of the movie, it turns out it’s his character’s nickname. Little Bit of Heaven. Oh, human suffering. Truly, this is what it looks like.

Mostly, brothers and sisters, I think we know why this movie causes a pain all the medical marijuana in the world can’t make a person forget. It’s Hudson. Hudson, whose character ostensibly goes through chemo, yet never loses a bouncy curl off her blond head. Who enters a trial but quits with a shrug about “quality of life.” Hudson, who, thanks in large part to director Nicole Kassell and first-time screenwriter Gren Wells, willingly put herself in a movie about cancer that seems to have been created by people who’ve only had cancer described to them. Hudson, who chose to place herself in the pantheon of life-affirming doomed sick girls like “Sweet November’s” Charlize Theron and “Autumn in New York’s” Winona Ryder and the mother of them all, “Love Story’s” Ali McGraw, and comes across as a shrill, affected parody of her hair-tossing Almay ad persona.

It’s an occupational hazard that any actress with marquee value will sometimes find herself in romantic schlock. Yet women like Renee Zellweger and Sandra Bullock have managed to balance their turkeys with riskier performances and a broader range of films. Hudson, in contrast, has remained frozen in time, forever doing variations on her young rebel with a heart of gold, Penny Lane. So let us remember Hudson today not as the husk of an actress she became, endlessly subjecting moviegoers to lazy dreck. Let us remember her as bright, fearless Penny. She’d want it that way. Let us move on, and spare ourselves the ordeal of further films in which a daffy blonde flashes a megawatt smile and recites terrible dialogue and dances adorably even though she’s, like, dying, you guys. For truly, life is much too short for such trials.

Continue Reading Close
Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Lessons of a baby bucket list

Avery Lynn Canahuati accomplished a lot in her six months of life. Imagine what the rest of us can do in a lifetime

Avery Lynn Canahuati (Credit: http://averycan.blogspot.com/)

What have you accomplished since November? What dreams have you fulfilled? In that time, Avery Lynn Canahuati threw out the first pitch at a baseball game, got a letter from the president and dressed up like a troll doll. She experienced deep love, and changed the lives of her family and friends. And that’s just what Canahuati got done in the first six months of her life. They were also the last.

Canahuati was born in Texas on Nov. 11. This past Good Friday, she was diagnosed with spinal muscular atrophy (SMA), a group of rare neuromuscular diseases that, in her case, were terminal. “We asked our doctors specifically if there is anything. Is there trial drugs, anything out of the country?” her mother, Linda, told CNN this week. So after “sitting around for two days crying and being devastated, since there is no cure and there is nothing we can do,” her father, Mike, decided to make the most of what was left of his daughter’s cruelly brief expected lifespan. Writing in Avery’s voice, he created a blog — and set a few goals.

“Imagine you’ve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?” Avery’s blog reads. “This has become my reality. But before I die, there’s a few things I’d like to accomplish … this is my bucket list and my story.”

During an adventure riddled with so much good humor, so many images of smiling, laughing people that it’s damn near impossible to read about it without dissolving into a sobbing, balled-up wreck, Avery and her family went about achieving the feat of simply “celebrating life.” Avery’s objectives were as seemingly mundane as to “stay up past midnight” and “keep smiling even after surgery” — and as grand as raising a million dollars to fight SMA. Along with good-natured jokes about man-purses, hospital cribs that look like “Lockup: Texas Children’s” and insanely cute pictures of a smiling baby with a chick fuzz hairdo, are the harrowing realities of life with a fatal disease. There were tubes and operations and weight loss and reflux issues that affected her breathing and swallowing.

For all the items Avery got to cross off her list in just a few brief weeks — “eat ice cream,” “meet someone else with SMA” — there are many she didn’t. She didn’t, as she’d written she’d hoped to do, graduate college. Or get married. She didn’t play in a softball game or ride a Ferris wheel or attend a birthday party. She died suddenly on Monday afternoon, when, as her father wrote later, “one of her lungs collapsed and she went into cardiac arrest.” And one last time in Avery’s voice, he wrote that her final dream was “spreading awareness and helping to fund a cure for my friends.”

We live in a mortality-denying culture. Just this month, an Aflac WorkForces Report announced that “sixty-two percent of U.S. employees say it’s not likely they or a family member will be diagnosed with a serious illness.” Yet disease comes for many of us, and death comes for everybody. That’s not an abstract concept. It’s the truth. I didn’t always get it, either. But I certainly understand that much better now than I used to, after watching a few of my loved ones die over the past year while my best friend and I faced our own life-threatening cancers. And I’ve got to say, death really clarifies the hell out of one’s to-do list.

Avery’s goals were not her own, of course. They were the ones her parents set to maximize her remaining time. But it’s easy to see in her photos what a cheery, friendly baby she was, and the ways in which her sunny nature inspired others. It’s easy to see a mother and father who could have become embittered by a devastating twist of fate, who instead chose to fight fear with love, pain with compassion, who are trying to use their loss as a means of raising awareness and doing service for others. They did it in a matter of weeks. Think of what the rest of us could do with a few decades.

You shouldn’t have to wait for a diagnosis to consider the possibility that you are going to die. You are. Maybe even in the next six months. The question is: What will you do with the time you have left? Will you eat a cupcake, get a kiss? Avery did. Will you reach out and connect? Will you love and be loved? Will the ones you leave behind be able to call your life a “celebration” too? As Avery and her parents tell us, “You can live life dying or you can die living life.” Imagine you’re on the clock. Start acting like it. Go.

Continue Reading Close
Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Words we had after he died

When we lost my husband to cancer, my family's world went upside down. We made sense of it the best we could

(Credit: Tinga via Shutterstock)

On the day my husband died, our daughter Allison started screaming my name from her bedroom, where she’d taken refuge. I burst open the door, imagining she had hurt herself, but she was just standing there in the center of the room. “Mom. Mom,” she said. “You are a widow now. A widow. I don’t want you to be a widow. You can’t be a widow.”  I had to agree: It just didn’t seem possible.

I tried to hold her, but she was hyperventilating a bit. “I’m ‘the girl whose dad died when she was 13′?” she choked out. “Oh my God. That’s who I am now.  When people ask me what my dad does, or how we get along, or anything, that’s how I will have to answer: ‘My dad died when I was 13.’”

Words. Labels for things, for people. We spend our whole lives making sense of them, I guess. Figuring out which one is the best, most accurate choice.

So many words become insider jargon in families: We are the only ones who know that “black toast intolerant” means “lactose intolerant”; that “minimisize it” means “minimize it,” which big pot is the “pasta pot.” These special languages that families create are another way they are individualized, that a family becomes a unique organism of its own.

Of course “widow” cannot apply to me. That word applies to little old ladies in fairy tales or someone who lives far, far down the street. My daughter cannot be identified forever by this one event.

But she is, and I am a widow, and in the months immediately afterward, we preferred life in the anonymity of Philadelphia over our small South Jersey town where even going to the convenience store means acquaintances’ pseudo-counseling, or others who steal quick looks at us, then look away, as if we are contagious.

We spent weekends in Philadelphia, and even though we live 15 minutes away, we slept on the floor of my brother’s one-bedroom, three-story walk-up, rather than in our own beds in our own four-bedroom, three-story home.

The kids learned that word, “walk-up,” and the phrase “wiz wit,” to get cheese sauce and onion on their cheesesteaks, and though they already knew what a contortionist is, and what break dancing is, and what a bong is, they get to see all of these things in Rittenhouse Square Park,  mere blocks from my brother’s place.

They learn these words because I could not sit my children down and say, here are words that changed your life: PICC line, ascites, carcinoid.

When Don was in and out of the hospital, and I learned more and more about his disease, its treatments, their side effects, I thought about language a lot, how I now knew all these words I had never even heard before. The gastroenterology team had to be updated about what the oncology team had said, and the interventional radiology people needed to know his newest albumen levels. There was a note in Don’s chart, “Ask the wife.”

“The wife”: my old label.

I would sit in the hospital and think about when we were first looking to buy a house, and how I was so proud when I could “speak real estate.” We would go out each evening with our real estate agent and look at six, seven houses a night.  I sat on the window seat of one home, nursed our baby Allison, and Don did a slow walk around the perimeter of the yard.  He came in and saw us there, and said, “Oh, so this is the one.”  And everything felt right and rich and I wanted to go to sleep right there, on the bare wood of the empty house that just that moment had become our home.

Once the house was ours I would wander around Home Depot and marvel at the language spoken there, how I felt like some mole who had just come up from underground to discover a whole other world going on above. The “wife” label, the “mother label,” the “homeowner label” all new; none felt generic, at least to me, they were points of pride and exactly where I wanted to be.

About two months after Don died, the kids and I were at a friend’s beach house and we watched the new version of “Freaky Friday.”  In it, a widow remarries, much to the teen daughter’s (initial) dismay.  When the movie was over, Hayley, 11 years old at the time, said, “Mom. You can get married again. In three years. Don’t get married again for three years.”

Allison stood up and just started yelling at Hayley. “She can’t get married again in three years. She can’t get married again ever. I’m not going to have a stepdad.”  Christopher, only 5 years old, said, “I would like a dad, Allison.”  Allison yelled at him, too, and soon I was saying, over and over, “We don’t have to talk about this right now.”  And none of us could understand what the other was saying.

When Allison was 5 or 6, the boy from across the street, a year older and therefore much wiser, took it upon himself to teach her how to properly pronounce “yellow.” She said “lell-o” and I hadn’t had the heart to correct her. The charm of her mispronunciation mattered more to me. I listened from the kitchen as he broke it into two syllables and made her repeat, again and again, “Yell-oh, yell-oh.” I wanted to rush in and stop him but knew that I couldn’t, that it was time, that it was natural and organic and even lovely that another child would teach her.

In other words, I couldn’t stop her learning, like I can’t stop this, can’t take away this label, this horrifying application of the word “widow,” of the phrase “my dad died when I was 13.”

Life went on and when I’d be out with the kids one or the other would say, when it seemed like all the other families had a mom and dad, “I hope people don’t think we’re divorced.”  Divorce implies decisions, and no choice had been made in the shape of our family.  The use of “we” was endearing to me, and only made my heart break more.  We would go places with my brother Steven and waitresses or ride attendants or whomever would assume that Steven was my husband/their father, make some kind of reference like, “You’ll have to ask your father” when a child asked for more Coke; none of us corrected these ignorant strangers.  The kids were simply more comfortable when we had that male figure with us, when we looked “normal” to the outside world.  They needed my brother as a placeholder for what was missing.

I have my label and the kids have their phrase, “my dad died when I was 13,” or 11, or 5. I fill out forms and I get irritated when the choices are “married” “single” or “divorced.”  But when “widow” is an option — even now, seven years later — I think of that first day and Allison’s horror at the term. The kids are now old enough that they have to sometimes fill out their own forms.  They tell me they sometimes write “deceased” and sometimes just cross the father’s info section out. I didn’t know when to take off the wedding ring or what to do with it when I did.  I don’t know when the transition happens between being a widow and being widow-ed.  The label is the label no matter the verb tense.

I have been dating someone for five years and I still choke on the word “boyfriend.” I could not even bring my tongue to the roof of my mouth for the word “love.” I asked my therapist why, when friends all around me profess love within the first two weeks of a new relationship. “What is wrong with me; why can’t I say it?” And she said, “Because you know what it means.”

Continue Reading Close

Kathleen Volk Miller is co-editor of Painted Bride Quarterly, co-director of the Drexel Publishing Group and an Associate Teaching Professor at Drexel University. She is a weekly blogger (Thursdays) for Philadelphia Magazine's Philly Post and is currently working on a collection of essays. Follow her @kvm1303.

Look at my scars

The remnants of my own illness have taught me that when it comes to difference, don't stare -- but don't turn away

(Credit: Natalia Klenova via Shutterstock)

“Do I freak you out?” she had asked.

It was the kind of question adults rarely pose. But Abigail (a pseudonym, like some other names in this piece) is 8, and she doesn’t have any qualms about being direct. The person she was asking, my daughter Beatrice, likewise didn’t hesitate in her reply.

Abigail is new to our school this year. She is in every way a typical second-grader, except that she was born without a left hand. It’s a trait that makes her undeniably noticeable, and so, sometimes, people ask questions. Sometimes Abigail has questions of her own. Sometimes, when you’re different, you want to know.

When Bea told me what Abigail had inquired about a few weeks ago, I’d winced a little, wondering how my child had answered. Had she passed whatever test Abigail was giving? I know how frank Bea can be, how she walks behind me when we’re out in public, checking whether the shiny, taut expanse of bare skin on my scalp is visible. “Mom, your bald spot,” she’ll say when we’re in a restaurant, fussing with locks to try to hide the five-centimeter circle where, a year and a half ago, I had surgery to remove cancer.

I know that Abigail’s question haunts many of us who are physically different, in ways both small and large, either by birth or circumstance. It plagues my friend with accident scars on his legs, who’s already nervous about summertime and exposing his flesh at the beach this year. Maybe it’s a small yet indelible birthmark on the chin. Or it’s a big burn. Or a missing limb. Does this make you want to look, or want to look away? Do we make you uncomfortable? Do we freak you out?

“It’s a thing that has to get explained,” says Natalie, a New York executive who’s had three serious melanoma surgeries and lives with ongoing psoriasis lesions. “For me, the anticipation of that is hard. I think people want to distance themselves from someone who’s had a traumatic event. Somehow you wind up having to reassure them that you’re not contagious, that they’ll be OK.”

Though she tries to be “very open about my illness, because I want people to get it,” Natalie admits she has nevertheless “some really upset moments” of unasked for attention. “I once had someone literally cross the road to ask what was wrong with my legs,” she says. “I was feeling really proud of myself for being brave enough to wear the skirt. And this woman came along and destroyed it.” She adds, however, “I don’t feel sorry for myself, and I don’t wear this as a badge. I just want to be looked at as the successful, independent woman I am — but I understand that some people can’t do it.”

It’s true that some people can’t, and there’s loss in there. I used to have a friend who liked taking pictures of his buddies, including me – right up until my diagnosis and my relatively minor disfigurement. Then he never took another photograph of me again. I wonder if I freaked him out.

My friend Frank, a West Coast entrepreneur, understands. A few years ago, Frank had radical surgery for bladder cancer that left him with what he calls a “Guinness Book of World Records scar” that starts at his sternum, loops around, and ends at his pubic bone. He also has a partial hernia that leaves him, in his word, “lumpy” under a shirt.

“I get a lot of people staring. I’m used to it,” he says. “It usually doesn’t bother me. I’m just a little self-conscious when people are peeking out the corner of their eyes in the locker room.” And, he recalls, “one time my wife and I were at Caesar’s Palace lying out in the super-bright, crystal-clear Vegas sun, and this woman next to us asked, ‘What happened to your stomach?’ She was pretty horrified when I told her.”

He’s still sometimes horrified himself. “I look at myself every morning, and I think of all the horrible shit that I’ve been through because of this disease,” he tells me. But when he looks in the mirror, he also sees a mark of survival. “I’m working out and riding my bike to train, and if that doesn’t tell you how I’m doing, go ahead and ask me. I don’t think I look that bizarre. I think I look like a guy who’s had major abdominal surgery.”

As Frank knows, when you’ve been through something life-altering, the first person you have to get to accept your look is yourself. “The first time I saw myself afterward, I thought, That looks very interesting,” says Johan Otter. Johan is a master of understatement. Seven years ago, Johan was hiking with his daughter in Glacier National Park when he was mauled by a grizzly bear. His scalp was torn off; his eye was clawed. He had to wear a halo brace for 12 weeks and go through multiple grafts and surgeries to recover. And then, he says, he had to learn to “push through” his first time out in public again.

“You get used to it,” he says. Besides, he jokes, “I never have a bad hair day.” Otter admits he can still be somewhat surprising to strangers. “Once at Costco this woman said, ‘Oh my God, what happened to your head?’” he recalls. But though he admits, “I’m a vain person just like anybody else,” Otter says that “I’m always extremely proud of my scars. When you go through something like this, people see you with your true self. You learn that what matters is what’s inside.”

It’s not always easy in our perfection-driven culture — where a weight gain of five pounds can be treated as a life crisis and toothpaste brands wage war on dingy teeth and a “puffy face” means you’re no longer considered “pretty” – to believe that within battle scars and what others would call abnormalities, there is a raging, painful exquisiteness. It’s often hard to feel the sideways glances and puzzled stares. But it’s harder still to be overlooked entirely, to feel like the remnants of the trials we’ve endured are the things that make others unable to look at us. We want to be looked at not with pity, not with fear, not with morbid curiosity. Simply with clear and open eyes.

So when Bea told me her friend Abigail wanted to know if she was freaking her out, I hoped Bea had answered honestly. More than that, I hoped she answered kindly. I hoped she didn’t pretend she’d never noticed Abigail’s missing hand, or changed the subject altogether. “What did you say?” I asked her nervously. “I told her no,” she shrugged. “I said, ‘Why would I be freaked? I love you.’” And then I exhaled.

I know life for Abigail – and Natalie and Johan and Frank and everybody else wounded or scarred or born different — is more complicated than that. The things that make us stand out in the crowd define us in a million little ways. They can remind us of the most dramatic, heroic moments of our lives, and of every small indignity and cruelty that has happened since. But what Bea and Abigail got to in the span of one recess period was that life isn’t about seeing past each other’s imperfections. It’s about being unafraid to look at them directly. Because that’s where the love is — in the cracks and the sufferings and the challenges. Life isn’t flawless. But it can be very, very beautiful. That day at recess, Bea told me, she had kissed Abigail, right on the place where her arm stops at the wrist. And they played together until the bell rang, and it was time to go back to class.

Continue Reading Close
Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Confronting cancer webcast

Full videos posted for Salon Core conversation on "coming out of the sickness closet" VIDEO

My oncologist says that whoever came up with the phrase “the gift of cancer” has the worst taste in gifts she’s ever heard of. But though it’s not exactly a set of car keys under the seat, cancer has, for the past year and a half, been the gift I’ve been given. And from an initial malignant diagnosis of melanoma through surgery through a Stage 4 rediagnosis through a last-ditch, Phase 1 clinical trial to a recovery that has stunned the research community, I’ve shared this adventure with the readers of Salon. And along the way, you’ve given so much in return. You’ve told me your own experiences with illness, with the healthcare system, with grief and frustration, and with the ways a shattering experience — either your own or that of someone you love — can turn life around. Sometimes even for the better. So it was a unique privilege to get to talk to a few of you recently for a Salon webcast, and answer your questions on life here in Cancer Town. For those of you who couldn’t make it live, videos of the full webcast are posted below.

The connections we find in unlikely circumstances are what get us through them. They’re a gift. Thank you for it.


Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Page 1 of 37 in Cancer