I’ve been a practicing homosexual for more than two decades now and consider myself reasonably well-educated on gay men’s health issues, but I’d never heard of anal Pap smears until very recently. Nor had most of the friends — practicing homosexuals all — to whom I mentioned the topic.
Live and learn. No one bats an eye when a woman says she has had a Pap smear to check for signs of cellular changes that can lead to cervical cancer. But ask the average gay man if he’s ever had the rear-end version and he’s likely to stare at you in confusion or horror or, in some cases, a barely suppressed titillation. Yet a small but growing number of gay health experts now argue that, for men who have sex with men, an anal Pap smear is an important preventative step for anal cancer.
Here’s the reason: Human papillomavirus, or HPV, is an umbrella name for dozens of viral strains that can cause warts on different parts of the body, as well as some forms of cancer. About 20 types of HPV can lead to genital and anal infections in both women and men. Because the glands in the anus are similar to those in a woman’s cervix, HPV infection in either area can result in cancerous cell changes.
Anal sex is the primary risk factor — but not the only one — for anal HPV infection. Dr. Stephen Goldstone, a gay surgeon who specializes in rectal and anal disorders, has been promoting the idea of routine anal Pap smears for men who have sex with men for several years, along with Dr. Joel Palefsky, a professor and research scientist at the University of California at San Francisco. Dr. Goldstone, who is also the medical director of GayHealth.com and the author of “The Ins and Outs of Gay Sex: A Medical Handbook for Men,” says that although the procedure is starting to gain acceptance, even most gay doctors have still not heard of it.
Dr. Goldstone recently spoke with Salon from New York, where he maintains a private practice and is a professor of surgery at Mount Sinai Medical Center.
I’m a gay man, and before recently I’d never heard about this. Why isn’t anyone talking about it?
It’s an emerging health concern for gay men, that’s for sure. And I think it’s going to become a greater and greater problem. Everybody says, “How come I’ve never heard about it?” Part of the reason is that it probably takes 10 years or more for a normal cell to become a cancerous cell, and the people at greatest risk are those with HIV. But until the last few years, most people with HIV were not living long enough for the problem to become apparent. That’s changed in the last five years because so many people are living longer.
How widespread is the problem?
Dr. Joel Palefsky at UCSF has done some screening studies and he’s estimated that about 65 percent of HIV-negative gay men and close to 100 percent of HIV-positive men carry human papillomavirus in their anal canals. Some types of anal HPV are more likely to cause pre-cancerous cell changes, and a large percentage of the HIV-positive gay men carry that type.
As far as anal cancer, the incidence in HIV-negative gay men is 35 per 100,000, which is about what the cervical cancer rate in women was before doctors began doing routine Pap smears. The incidence of anal cancer among HIV-positive gay men is estimated to be about 70 per 100,000. These may seem like tiny numbers, but they are actually very significant because this is a disease we never really used to see. And it’s becoming more widespread, like all sexually transmitted diseases.
At this point there is no treatment that can eradicate the virus. Right now there is research taking place on both preventive vaccines, which would be administered before someone was ever infected, and treatment vaccines, which might, for example, be able to prevent the progression of an existing infection to cancer.
So is anal sex the main culprit here?
Yes. The biggest risk factors for anal HPV are multiple sexual partners and anal sex. But even if someone has never had anal sex, every man who has sex with men is at risk for it. Genital HPV can spread from skin-to-skin contact. It doesn’t require penetration. A finger can spread it, or someone might rub his penis on the outside of his partner’s anus during foreplay, and from there it’s easy for the virus to spread inside. And a condom may not be protective. It doesn’t cover the base of the penile shaft, the pubic hair or the scrotum, which are all places where HPV can be found.
Probably a majority of all men have penile HPV even if they don’t have warts there. It’s pretty rare that the virus will migrate from a man’s penis to the anus, but it can be spread to a sexual partner’s anus or vagina, and in a woman it’s easier for it to migrate from the vaginal area to her anus. That’s why women should also be screened routinely for anal HPV.
Now I’ve never had anal warts. Do I have to worry about this?
Yes. A lot of patients who come in just for screening end up having warts they didn’t realize they had. They say they don’t have anal warts, and then we find a tiny anal wart. And when people do have anal warts, we need to start taking that seriously. Many people will go to dermatologists or internists and just have their external anal warts removed. But often it’s just the tip of the iceberg, and no one looks inside.
How did you first start recognizing this as an issue?
It was about 1996 or 1997. I would be taking out anal warts and I’d send them out for analysis if they were a little funny-looking. Anal warts have been a problem for gay men for a long time but most of them never get analyzed. At that time, however, I started getting back these weird pathology reports of the kind of cellular abnormalities that can lead to cervical cancer in women.
So then what exactly is an anal Pap smear?
You do it like a regular Pap smear, except in the anus. You insert a non-lubricated swab inside the anus and it picks up a sample of the cells. The cells are sent to a specially trained doctor called a cytologist, who examines them for abnormalities. Just as in women, a Pap smear is basically a predictor of abnormality, but it’s not specific about what kind of abnormality. So if there’s an abnormal Pap smear, then we do a procedure called a high-resolution anoscopy, which is actually looking inside the rectum to see what abnormalities are there.
You can find different grades. You get atypical cells of unknown significance, which are very slightly abnormal. Then there are greater but still moderate cellular abnormalities, which is called low-grade dysplasia, and more advanced abnormalities, called high-grade dysplasia. If we see changes indicative of high-grade dysplasia, we do a biopsy and a pathologist can tell us if it’s high-grade or even cancer. Less than 10 percent of high-grade dysplasia goes on to cancer, but we don’t know which 10 percent.
So let’s say it’s high-grade. What then?
Then you treat it. If it’s a small amount of high-grade dysplasia, you can freeze it or burn it or put a little acid on it right in the office, the same way you would treat a wart. If it’s a truly invading anal cancer, the treatment is chemotherapy and radiation. But you’d like to find these people before they actually have cancer.
Joel Palefsky and I have been trying to get the word out for a while that this is a major health concern and we need to deal with it. One of the things HIV has done is made it seem like AIDS is the only illness gay men get. And in the medical community, we find that it’s possible to go to an HIV doctor and just have your T-cell count and viral load looked at and never have to take off your clothes for an examination.
But if it’s so simple, why are so few doctors doing it?
There has been reluctance, even among gay doctors with gay patients, to deal with anal-rectal disease. I get e-mails from people all over the world asking questions about rectal disease when they won’t bring it up with their own doctor. Straight docs don’t understand gay sexual practices and are reluctant to talk about it, and most people who go to HIV doctors don’t even get asked about their sexual habits.
Some doctors will not recognize it as an issue until one of their patients actually gets anal cancer. The doctor will be totally upset about it, and then will start doing anal Pap smears on other patients. One gay doctor referred someone to me who supposedly had hemorrhoids, and I examined him and found anal cancer. I called the doctor to tell him, and after that he started doing anal Pap smears on all of his other patients. Then he called me back and said, “Ohmigod, they’re all coming back with abnormalities.”
You would never blink an eye if woman said she went for a Pap smear. And if she comes back with a positive result, we don’t look at her and assume she’s promiscuous, even though it’s a sexually transmitted disease. There’s no negative social connotation for women because we know that many women get HPV with their first or second sexual experience.
But men get tremendous embarrassment from the diagnosis. They want to know, “What do I tell my partner or boyfriend?” When a patient comes to me with warts, I tell them that they probably didn’t catch it from the current boyfriend, since they can appear years after the initial HPV infection. If you’re in a monogamous relationship, you want to come home and kill your partner because you assume he’s cheating, when in reality you probably caught it during one of your first sexual experiences.
So how often should I be getting an anal Pap smear?
Primary care physicians should be doing routine anal Pap smears on men who have sex with men. HIV-positive men should have an anal Pap smear every year, and HIV-negative men every two or three years, starting in their 20s. Heterosexual HIV-positive men are also at increased risk for HPV infection, although not nearly as much as men who have sex with men. And women should have routine anal Pap smears just as they have routine cervical Pap smears because of the chances that the virus could spread.
Patients themselves should be asking for this because they have tremendous power within the medical community. We’re all healthcare consumers, and if more and more of us start asking our doctors about anal Pap smears, it will motivate them to learn more about it.
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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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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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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“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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