Cancer

“I hope you have a good life”

A mother and daughter reunite only to face permanent separation.

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In the summer of 1997, my first wife was diagnosed with lung cancer. Eileen and I had been divorced for 14 years by that time and I had remarried and gone to live in Ireland. We’d remained good friends, though less communicative than we should have been.

We had three grown-up sons we loved, and when we did talk our conversations tended to center around their lives. I knew that Eileen was happy, that she enjoyed her work with handicapped children. As for her private life, I didn’t know and I didn’t feel I had any right to ask. When I heard from our middle son, Stephen, that Eileen was seriously ill and had to undergo laser surgery to burn a tumor from her windpipe, I flew from Dublin to Phoenix.

My wife, Rebecca, insisted I go. We found nothing awkward in the idea of my flying off to be with Eileen — although some of our friends were unable to grasp the idea that there could still be friendship after divorce and that a second wife might be sympathetic to the needs of a first. I loved my ex-wife, although not in the same way as I had once. There were no old longings, just a kind of serene bond. Rebecca understood this.

In the implausible heat of Phoenix, I met my sons — Iain, Stephen and Keiron — and we went at once to the hospital where Eileen had her operation. The kids were apprehensive, caught in an unmapped zone between optimism and despair.

Eileen was in ICU, doped on morphine. She was only 5 feet tall to begin with, but in her illness she seemed smaller, shrunken. The sight of her so diminished shocked me: I felt unbearable sorrow that a woman normally so vibrant should be sapped of life, reduced. She recognized me, but couldn’t speak because her throat hurt too much after surgery. Sometimes she’d scribble illegibly with a felt-tipped pen on a pad, but most of the time she was lost to us inside the dark room of narcotics and dreams.

I met with her surgeon, who told me that Eileen’s cancer was inoperable and spreading. She had about six months, maybe. This was the prognosis the boys and I had expected, but it was a chillingly immutable prediction just the same. Eileen was leaving us: It was the truth we didn’t want to face.

My sons and I took turns sitting with her. Sometimes when she looked at me, Eileen smiled in a slightly baffled way, as if she thought my presence was part of a dream. Other times, she smiled sadly and held my hand, and I spoke words of comfort, verbal placebos for me and for her.

Often when I watched Eileen in her morphine-induced sleep, I had flashbacks to when we’d first met — Glasgow, 1962 — in the basement of a music store. She was the assistant manager and I was a part-time clerk with ambitions to write poetry. I enjoyed her free-spirited style, the way her life seemed like a series of scattered events, dates kept, dates broken, trains missed. She lived outside of time. Often we went for drinks after work, we talked, I shared my sorry amateur poems with her, and she read them with great sympathy — a quality she never lacked. We found ourselves drifting, without thinking, into love.

Early in our relationship she showed me a small cesarean scar and told me that she’d had a baby daughter, Barbara, whom she’d been forced to give up for adoption. Eileen was 16 when she became pregnant, and the father, whose name she never mentioned, had faded out of her life.

Eileen had been anxious to keep the child, but her parents, Orthodox Jews who perceived Eileen’s pregnancy as an affront to the family name, opposed this wish so strongly there was absolutely no question of Eileen raising the baby on her own. Besides, the times were against Eileen: In 1955 single mothers were stigmatized. There was simply no chance of a public or private reprieve. Eileen would give the child away and get on with her life. From the point of view of her adamant parents, this was the only solution, and Eileen — barely more than a child herself — yielded reluctantly in the end.

When she handed the child to social workers the last words Eileen said to her baby were heartachingly simple: “I hope you have a good life.” She told me this and not much more, and she never mentioned Barbara again. If she thought about her lost child down the years, she never told me. It was as if the baby had died and she’d buried it. But she had the scar and I knew she had too much heart to forget.

Barbara was adopted by a childless couple in Yorkshire, in the north of England. She was told from the beginning she was adopted. She was a happy kid, her home life comfortable. In her teens she decided she’d find her biological mother. She wanted, as she put it, “a sense of knowing” about her blood ties.

For almost 20 years she searched, encountering the frustrations of most adopted kids seeking their origins — obstructive social workers, legal barriers, misfiled documents, concealment. But Barbara had enormous tenacity, and eventually, in the fall of 1997, she located Eileen’s address.

By that time, I’d returned to my life in Ireland and Eileen had been released from the hospital after her surgery. Although she knew her prognosis, Eileen refused to give in to the forecast of her surgeon. She had days when she fought against cancer — through prayer or the ministrations of faith healers or the ingestion of potions — and she had other days, deep dark ones, when she was depressed and weak and needed oxygen. Despite the attentions of the boys, she was also lonely.

In Yorkshire, Barbara wondered what to do with the information she’d sought for so long. She deliberated for days before she finally wrote a circumspect letter. “I’ll respect your decision if you do not want to contact me,” she wrote, “although my deepest hope is that you will. All the love I have, I send to you now, your daughter, Barbara.”

When Eileen received the letter she wept for a very long time, because, as she told me later, she’d prayed only a few days earlier for news of her daughter, and now, when she’d expected nothing to come from it, the prayer had been answered. Excited, suffused with sudden bright energy, Eileen immediately phoned Barbara in Yorkshire.

Eileen’s first question was: “Is this my daughter?”

Barbara answered with her own question: “Is this my mother?”

They talked then at top speed, there was so much to relate: the fact that Barbara had three brothers she’d known nothing about, the fact that Eileen had three grandkids whose lives were a mystery to her. Forty-two years had to be covered; it was too much, too draining, too many tears.

And there was one other piece of information Barbara had to impart, a tragic counterpoint to Eileen’s own condition: Barbara had also been diagnosed with lung cancer, and she didn’t know how long she had to live.

Eileen was too stimulated by Barbara’s reentry into her world to be dismayed by this wretched coincidence. And besides, she’d already glimpsed a hidden meaning of hope in the timing of this reconciliation. She wrote me: “Campbell, I see this reunion as the door that opens true healing for both of us.” And she added, “I feel no more need for this disease.”

Phone calls and e-mails went back and forth for a couple of weeks, photographs were exchanged; but they were never going to be enough. Barbara flew to Phoenix to be with her mother. It was the first of three visits she was to make over a period of four months. She couldn’t leave her own family for too long, because she knew that her time with them might be scarce. But the discovery of her mother was an event of such joy that she believed, like her mother, in its power. “Something deep inside of me has been awakened,” she wrote in her journal. “It’s a love I haven’t known before. This is the most powerful feeling I have ever experienced.”

For Eileen, the reappearance of Barbara in her life was an omen, and she believed that she and Barbara could pool their strength and defeat the disease they shared. Barbara believed this, too: Between them, she felt, they had the power to conquer. But sickness wasn’t a topic during their first reunion. There were too many mother-daughter connections to be made, simple things of which they’d been deprived during the long years apart — Barbara brushing her mother’s hair for hours, or cooking a meal together, or visiting the supermarket, even if Eileen was confined to a wheelchair.

Barbara’s capacity for setting aside the burden of her own considerable pain to nurse her mother was astonishing. When I returned to Phoenix in January 1998 and saw Barbara tend to Eileen, I realized I’d never seen such love in action. When it became obvious that Eileen was fading out of our lives, Barbara was always at her side, cradling her head, smoothing her brow, singing phrases of songs to her, lines from “The Rose,” or “Hush Little Baby.”

In total, Barbara and Eileen had only six weeks together, six weeks of making up for long-lost time, before Eileen died on Feb. 4, 1998.

A couple of days before her death, Eileen asked me to sit with her. She took my hand. “Write this story,” she whispered. “Write this story of Barbara and me, and how we found each other.”

I promised I would.

It wasn’t until after Eileen’s memorial service that I thought about what this promise meant. I’d made my living for more than 20 years writing fiction, hiding behind characters I’d invented. I made up dialogue, I could move a whole army of characters if I needed to — how in God’s name was I supposed to deal with the true story of these two women?

My first impulse was to delegate the task. I asked a friend, Tom Congdon, to write it. Tom had authored a good book called “Having Babies,” and I felt Eileen and Barbara’s story would appeal to him, since he’d already written a nonfiction work about women and children. Tom didn’t mind helping out, but he felt that I was the only person close enough to the situation to write the book. Our agent shared this opinion.

So, with deep reluctance, I started to write the story of Eileen and Barbara. Barbara had supplied me with her journals, and Eileen had left behind a jumbled assortment of papers, diaries, notebooks. I had all the material I needed — so I thought.

I began in the third person. I’d stay out of the narrative. I’d treat this just like fiction. In other words, I wouldn’t be involved as a character. I wrote three chapters. Then, truly appalled, I quit. The work was just plain bloody bad. It read like Catherine Cookson on quaaludes. Meat and potatoes prose, unpalatable. I was adrift in this new world of memoir.

And then I realized that if I was to write about Eileen’s life, there was no escape from writing about mine. How could I tell her story and leave myself — husband, father of her children — out? And how could I have even imagined that I could tell this story in the third person? Was I that afraid of the past, of what it might reveal?

As soon as I started writing in the first person, I knew — with a tremor of shock — there was no place to hide. I had no fictional escape hatches, no plot devices. Start telling the truth and it becomes a hard taskmaster. I found myself trawling memories I’d chosen to forget, and with each revelation came the understanding that this story couldn’t be restricted to cancer, nor to adoption and reconciliation. It had to be the story of marriage, family and divorce as well, and an examination of love. It also had to be a story of the human failings, in particular my own, that contributed to the death of our marriage.

Painfully, I resuscitated scenes I’d done away with long ago: how I’d dragged Eileen and our small children from London to upstate New York in the early 1970s because I thought that if I escaped the haunts of Soho, where I worked as a book editor in a world of long boozy lunches, I’d find release from the alcohol that was beginning to play too large a role in my life; how I’d uprooted Eileen and the kids again and driven them across the United States to Arizona, where I imagined — for no logical reason — that booze might be better combated under a desert sun, only to discover cocaine in Phoenix. I brought back to mind the searing pain when Eileen and I finally separated, and her despair, all the energy and bravery she’d invested in trying to save the marriage — and me — blown away, because I’d been careless, selfish and ultimately incapable of finding the salvation she wanted.

Details came back with the energy of genies liberated from imprisonment. I had no way of stemming them. I wrote and wrote, unconscious of time, reliving harrowing episodes, and good ones, too, funny ones; and all of these I wove into the story of Eileen and Barbara’s reconciliation. It was writing of a kind I’d never known before. It was as brutally honest as I could make it, and I didn’t give a damn if I came across as a demented coke fiend or sorry boozer, or if I’d revealed too many of my character flaws.

I’d thought I could be detached and calm. But that was never to be. The truth was on paper. I felt grief such as I’d never known when I wrote scenes involving Eileen in the prime of her life, and I was liberated from the way I’d suppressed so much of our mutual history.

When the book appeared in Britain last January — five months after Barbara died — and the media kicked in, I was often asked why I’d been hard on myself. I always answered that I’d made a promise to Eileen to tell her story, and the least she deserved was for me to be truthful about the role I played in her life. I’ve always felt privileged to have been a part of her world. And of Barbara’s. I wanted the book to convey that too, and I believe it does.

Going back to fiction now doesn’t feel the same. I’m changed. It remains for me to see exactly how.

Campbell Armstrong, a Glaswegian by birth, has lived in Ireland since 1991. He has written several novels, including "Jig," "Agents of Darkness," and "Concert of Ghosts." "I Hope You Have A Good Life" (Crown Books) is his first nonfiction book.

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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