Cancer

My Mother, the disaster

When my mother was diagnosed with breast cancer, of course I came out to help. But I didn't expect her to seduce the doctor.

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I dreaded seeing her when she arrived home from the hospital. I hated the
thought of caring for her — the feedings, the baths, the making merry to
entertain her. She talks, she squawks, she even cries real tears: Baby Mommy.
But this grown-up baby doll would be no crib joy, I knew. She’s a bad dollie
who can turn any sickroom into a mental ward with her demands, who will spit
up her radiation therapy and sneak estrogen pills even when her oncologist
waggles his finger: “No, No, No!”

She was at the door of her apartment when I arrived from the airport, with an “Aren’t I being brave?” smile mounted on her face. “Hi, Baby! I’ve missed you. Don’t bother hugging me because it hurts. Put your stuff down and let’s go shopping,” she commanded. “I don’t want to miss the sales.”
I was flustered by her apparent fine health — on the phone, she had described her condition post-lumpectomy as pre-Phre Lachaise. I even considered the possibility that I had been duped into this visit just to accompany her to the mall. But, as we walked toward her car, I got a better look at her sateen nightie and fur-lined mules. Mardi Gras attire at best — except Mardi Gras was still weeks away.

“When did you come down off your anesthesia?” I asked, giving her the once over. “Maybe the Home Shopping Network is more your speed today.”

“Don’t be ridiculous,” she snapped, tottering back to the house to pop some painkillers and change clothes. “I’m just fine, now that you’re here to take care of me.”

The next few days sped by in a blur of shopping and errand-running. Along the way, we squeezed in a few visits to cancer specialists to bone up on the merits of chemo vs. radiation. Later that week, we would get the results of a biopsy that would tell us if her cancer had spread, so we had time for many tactical discussions about Mom’s cancer treatment.

“Hmm. Two practicing lady oncologists. Now that’s a magazine story, isn’t it, Laurel?”

“What do you mean?”

“You’re not looking out for me,” she says with exasperation. “Don’t you think you could tell them you were writing a magazine article about them? I’ll bet I could save 20 percent on my bill, at least, if you did an article on them.”

“Sure, Mom.”

“And the voodoo priestess who promised she would pray for me, I’m sure she’d give a 25% discount if you said you were definitely going to write her up for Glamour magazine. Do they have any columns about voodoo in Glamour?” Mom asks, all worked up now at the idea of a discount. As she turns toward me to gauge my reaction, the car leaves its lane and heads toward the guardrail.

“No, just horoscopes. Maybe your astrologer will give you a bargain on your next chart. Watch where you’re driving, will you?”

As soon as we get in to see Dr. Sinz, Lady Oncologist, Mom begins angling for a discount. She recites my resume: “This is Laurel. My daughter. She’s in from New York City, where she’s a journalist [pause for effect]. And she writes about women in business and [pause] female surgeons. Right, Laurel?”

My mother looks at the doctor meaningfully, arching a brow. Sinz just stares back at Mother sternly, unaware of her role as the designated nurturing caregiver. Sinz insists that mother put on a gown, please.

Thus admonished, Mom tears up and her mouth clamps into a crooked smile that is mockingly reminiscent of the “Aren’t I being brave?” smile. She wrestles her way into a flimsy robe and heaves herself onto the examining table. As the doctor pages through her chart, mom starts reciting her own version of her patient history. “This is Charlene,” she says, flinging her right arm up in the air like a pooped-out pom-pom girl and proffering the affected breast to Sinz’s probing fingers. “She’s highly emotional, has no history of cancer in her family, but she did smoke years ago. And she won’t do anything bad ever again if you can just make this go away.” The tears start to spill out onto her cheeks. Mom looks back and forth from Sinz to me for reassurance.

But I’m interested only in practicalities. How can we avoid future cancer? Subtext: avoid future maternal histrionics. I inquire whether Mom should maybe start eating more green, leafy vegetables and stop ingesting so many known carcinogens.

“Are you implying that she could have prevented her cancer?” Sinz asks.

“No, of course not, but aren’t there certain risk factors that she could avoid? For years, she’s been living off lard and Sweet-n-Low …”

“There is absolutely no proof that your mother’s diet caused this. Nobody really knows what causes cancer in an individual,” Sinz retorts.

“I can’t believe you’re blaming me for my cancer,” my mother shrieks. “My own daughter. How dare you!”

Now, everyone’s angry at me. But I think I know some things about the patient’s condition that the doctor doesn’t. Given the power of the mind in relation to the body, I suspect that her physical illness may be triggered on some level by her emotional illness. She’s an emotional invalid with a pathological need for love and attention. She intentionally puts herself into situations in which she must be rescued by others, thus proving that she is worthy, that someone cares about her. This disaster or something like it was bound to happen. It is simply the next stage — the physical manifestation — of the patient’s chronic emotional malaise. As the daughter-caretaker, my prescription for her (and for myself) has been homeopathic doses of therapeutic inattention. In other words, a cheap placebo marked “sympathy” on the box cover. But such therapy doesn’t seem to be going over well now that this cancer complication has presented itself. Given these developments, I realize Mom has good reason to expect some real sympathy. I had better measure out a dose of apology. “Don’t be silly, Mom. Of course I’m not blaming you,” I reprimand.

Mom and I were close once. Just like sisters. When I was 6 years old, she confided everything in me and asked my advice on most things. I understood considerably more than she revealed to me herself. I understood that even when she was happy, disappointment and Mom’s attendant rage were never far off. I understood that my little brother and I were frequently in the way, were a lot of trouble and also that we were critical to her happiness. So was my father. But, according to her, he was mostly bad and was never doing what she wanted him to do. A man was there to take care of you. A man was not supposed to break his promises, but he usually did, and this made you have to scream at him and made him slam doors as he was leaving the house and not coming back for hours. And sometimes even days. And that was when a woman told a man once and for all that “it” wasn’t working and when he came back he had to turn right around and get out, for good.

After the divorce, Mom told me she had to rely on her “big girl” now more than ever. I helped watch my little brother and ran to fix her instant iced tea when I thought she might be thirsty. I wanted to be very good and do exactly what she wanted me to do. She had not asked my advice when she divorced my dad. But she promised that everything was going to be happier because of it. And when Mom was happy she was so fun, the world around her one great big delicious Willie Wonka’s Chocolate Factory of a place. Mom and I grew even closer than before. Sometimes she would call me over to her bedside and hug me hard and kind of smile and cry at the same time. When I asked her what was wrong, she’d say, “Nothing. I’m just so happy you’re mine. My little angel.” Other times she would light an oily, Crayola-colored candle from the Santeria witch doctor and perch me in front of it to ask for “guidance.” She thought that I had special powers of divination. Kneeling before the Green for Money, Red for Love or Yellow for Wisdom candles, I tried to cover all my bases. I prayed with all my heart that a very rich, very smart man would come to the house and take us all away to a better place.

My mother had quit college to marry my father, so now she took what work she could get — as a cocktail waitress or selling swampland to out-of-towners by phone. And she took what help she could get, too. If my grandfather didn’t give her enough money, she would set me down in front of some paper and have me write him a letter to ask for things I needed, like my soccer uniform. “He has to help. We have no one else,” she’d say. But, I knew that she also got help from her boyfriend Murray, who was always just about to divorce his wife. Over the years, many such Murrays came to the door to take Mom out on dates, but none of them wanted to become our new father.

There was no sign of my real father. And when Mom heard he had moved to Canada, far from the reach of child-support laws, she announced that this proved he didn’t really love any of us. And so we shouldn’t love him either. Only she, who provided us with everything, who had sacrificed so much for us, deserved our love. Though my brother and I were silent on the matter, Mother sensed that we hadn’t expelled the foreign matter from our hearts as she had. If only to protect us from further disappointment, she would extirpate him herself then. She mocked us and our idiot love, and we just cried.

My mother should have understood. Her own doting father “abandoned” her, she says, by passing away when she was just a young girl. His death by tuberculosis left her stricken and alone because her mother favored her brother and tormented her. She says her mother — the very same stooped little woman whose hands are always knuckle-deep in rugelach dough — mercilessly hammered home her culpability in her own father’s death. Mom says she was constantly told that she was a big clumsy “ox” and a “bad girl,” and that her father might have lived otherwise. When Mom relates this, tears rush to her eyes even today. I suspect that’s what helped to create the vacuum in her that she was never able to fill, the basis of her black-hole love.

At a certain point in those early years, I found myself pulling away from my mother. I couldn’t help it. I no longer wanted to be that close to her. I didn’t know why. Of course, she took it personally. I was the fruit of her womb, her little doll baby. Wasn’t I supposed to be there for her, after all? Now I was the one who had abandoned her. She tried to will things back to the way they were. She cried, she lashed out, she begged for a forgiveness I didn’t know how to give.

When she asked me to do the simplest things for her, I refused. I couldn’t stand her touch, her smell, even the sight of her. But Mom soon discovered indirect ways to get attention. She had almost daily “emergencies” which required my help and guidance — bounced rent checks, dead-end lovers, an IRS audit, a RICO investigation or a botched get-rich-quick-selling-Voodoo-Love-Oil scheme. How could I say no? I couldn’t, but I made her pay for these incidents. I became surly and disrespectful and even cruel to her in order to discourage further petitions of help. To my mind she was the incarnation of Pedro Almodovar’s “Woman on the Verge of a Nervous Breakdown,” or Lucille Ball. In her mind, I had also become a caricature; she called me “Bad Seed” and “the viper I nursed at my breast.”

When I was 16, I asked my grandfather to pay the tuition to send me away to boarding school, then to college in the Northeast, where I finally settled. Over the years, over the thousands of miles between our two cities, I thought I had finally escaped the vortex of my mother’s need. Each time she telephoned, I could feel the insistent tugging of her specific gravity, but I resisted. The rare times when guilt or any such emotion threatened my reserve, I’d tell myself, “It’s her fault. She got herself into this. Let her deal with it.” Then I’d make a game of scraping out the cat litter as quietly as possible while she talked whatever it was out of her system. As soon as she finished, I’d hang up, scrub my hands and return to my life unmoved.

It’s been a full week since I arrived in New Orleans and we are finally in the waiting room of the surgeon’s office to get the results of her biopsy. No major mishaps today. That is, until Mom confesses, “I think I made a pass at the doctor as I was dozing off before my lumpectomy. What is the etiquette for such things? Should I apologize to him or just pretend it didn’t happen?”

I pretend I don’t hear her.

“Come over here and sit next to me. Give me a little hug for luck?” she cajoles.

“Will you just relax already?” I hiss. Mom’s face blanches creamy as almond meat, lips forming that familiar clownish half-grin. I know I should go to her, blot the twin channels streaming down her cheeks. Instead, I turn my gaze to the magazine rack as a blaze of red-tipped fingers digs reflexively into her purse for the cigarettes she quit years ago. Out spill clumsy wads of tissue, her lipstick case, a mirror. Fixing her face is her nicotine now. My relief comes dressed in white, when the nurse enters and takes her away.

After a very long wait, the nurse returns to tell me the doctor wants to see me alone.

“Where’s Mother?” I ask, once I’ve entered his office.

“She’s a mess,” the doctor announces, stating the obvious.

“What happened?” I wonder aloud, hoping she will learn once and for all not to pull her seduction routine on health professionals.

“Your mom is,” he pauses, taking a breath, “very unrealistic.” He is shaking his head. Of course — he has a wife, I think, spotting the back of a tell-tale picture frame on his desk. “She thought she could just come in here today, shake my hand and leave. But unless we catch it in time, it could grow out of control and travel throughout her system.”

“Just what are you saying, Doctor?” I ask, alert again.

At that moment, my mother pushes into the room and fixes her gaze on the doctor, talons puncturing the balls of Kleenex in her fists.

“Go ahead,” she says, “be straight with me. You know I can handle whatever it is.”

Before he can say anything, her face belies her, melting into the Kabuki mask of grief I know so well. “Oh, doctor,” she wails. “I’m too young. Tell me I’m not going to die.”

“Sit down, please, Mrs. Touby,” the doctor says from as far behind his desk as he can roll his chair. Then, more gently, he adds, “You’re not going to die, okay? I mean, eventually,” he draws out the syllables, “but probably not from this.”

“Oh, I love you. Thank you. Thank you, Doctor,” she rushes to him, and hugs his head to her chest.

Loaded up on his assurances, we leave the doctor’s office. But just for the night. Tomorrow will be another surgery to remove the lymph nodes. Depending on the results of that, she could have as little as a 20 percent chance of living five more years, according to all the booklets the doctor has given her, which she promptly handed to me to study for “guidance.” Whatever the statistics are, though, she’s not worried. She has complete confidence in this man who, she believes, will cut her open and fix it all.

“Let’s hurry over to Victoria’s Secret,” she says eagerly, “I saw the perfect nightgown to wear to my next surgery. On sale.”

Later that evening, Mom decides we must have a pre-surgery party, so we hit the French Quarter. “We’ll go out on the town, just like girlfriends,” Mom says. Going out on the town like girlfriends was Mom’s dream when I was growing up, but at that time, even Pale Fire lipstick and “Too Long to be Yours” mascara weren’t disguise enough to get my jailbait body past the bouncers. At 12 and 34, we just came off like some “Lolita and Mom” comedy routine.

Tonight is a special occasion, so I’ll do just about any reasonable thing she asks. Besides, I know Mom is trying to forget her latest love interest, Bert the Jambalaya King, who ended up being too busy even to call and see how she was. He was filling a big catering order, she explained. “It’s right before Mardi Gras. This is a very emotional time for him. He’ll get in touch.” But Bert never called. Maybe that little reconciliation with his not-yet-ex-wife Angie had something to do with it, too, I think.

Our first stop in the Quarter is a little doll shop on Dauphine Street. I consider the night a complete success when I manage to talk her out of buying a “$300″ porcelain “Beth” doll marked down to $39.95. “But Beth’s so beautiful,” she complains, cradling its stiff form in the crook of her arm. “Beth makes me feel secure,” she adds, taking one last wistful look toward the winking neon of the store.

Since Mom enjoys all kinds of rituals, I don’t think it at all strange when she announces that we should visit the St. Louis Cathedral on our way to Bourbon Street. The mass had already begun, and the parishioners were only a little startled at the sight of Mom clomping down the aisle like the Anti-Bride in her snakeskin boots and too-tight black sweater-dress.

Mom thunks down on the knee-rest at a pew up toward the front. I settle in one pew in front of her. The priest murmurs in ancient tones and rhythms. Everything is melting away now — the cancer, the nodding doctors, the fear — into the beeswax and myrrh and hush of the Church. It occurs to me that I’ve never seen my mother pray, and I turn around just far enough to get a peek at her without her noticing. The choir is singing some Alleluia refrain that I actually know and I’m singing along. But when I look at my mother, the words hang in my throat. Head bent gracefully over clutched fingers, she looks so sweet and hopeful, and so alone.

I am struck by how real she is and how real all of this is that she is going through. And there before me is the mom I believed in so long ago, the beautiful, spontaneous mom I was always so proud of, the one who let me stay home from school to draw in coloring books with her even when I wasn’t sick, the fragile mom I wanted to console when everything around her was falling apart, the woman I loved so fiercely. Yes, she took and took, but she was also generous in her way. She never let me doubt my intelligence or my potential; her mantra was always that I would conquer the world that had crushed her. I realize now how much that confidence helped me to become the person I am today. Even from her chaos, she was trying to reach out and give me something she had never had and perhaps couldn’t even fully imagine.

Right now, as I’m remembering all this, I want to hug her hard and sob into her chest “Mom, please don’t worry. Everything will be OK. It’s not your fault.” Something very strange is pulling me toward my mother, a feeling so familiar and yet scary as all hell because I can’t seem to control it. It is no longer her pulling though, it is my own. “Not yet, not now. No, no, no, no,” I tell myself. Instead of moving toward her, I turn away. And holding my head low in my hands, I give my eyes their release over the stained old wood. Then I pray harder than I had ever prayed over the colored candles when I was a child. I beseech the grain of the wet wood, the doctors, the saints and Moses that everything will work out. But I pray most for the strength to tell my mother again, to show her all the many ways I never stopped loving her.

Laurel Touby is a writer living in New York.

Kate Hudson’s cancer horror show

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

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Kate Hudson's cancer horror showKate Hudson in "A Little Bit of Heaven"

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

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

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

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

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

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

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

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Mary Elizabeth Williams

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

Lessons of a baby bucket list

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

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Lessons of a baby bucket listAvery Lynn Canahuati (Credit: http://averycan.blogspot.com/)

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

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

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

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

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

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

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

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

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Mary Elizabeth Williams

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

Words we had after he died

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

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Words we had after he died (Credit: Tinga via Shutterstock)

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

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

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

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

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

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

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

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

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

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

“The wife”: my old label.

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

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

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

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

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

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

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

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

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

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

Look at my scars

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

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Look at my scars (Credit: Natalia Klenova via Shutterstock)

“Do I freak you out?” she had asked.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Mary Elizabeth Williams

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

Confronting cancer webcast

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

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Confronting cancer webcast

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

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


Mary Elizabeth Williams

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

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