Tuesday, June 23, 2015

Face fear


    Five years ago, when Sgt. Edward Schrank was returning to civilian life after serving in the Marines, a mutual friend worried he might have a hard time finding a job—part of his face is missing—and asked me to help. I doubted what I could do, but felt I had to try, so began taking Ed to City Club luncheons and such, introducing him around. 
     I suggested to Ed that he go to the University of Illinois at Chicago Hospital's Craniofacial Center and get a facial prosthetic made, to put future employers at ease. He was very much against this, as you can tell from his interview, one of three with disfigured persons that follow this article.
     Talking to Ed made me wonder if he might not be a vanguard, whether disfigured people could be developing the kind of strong identity and pride found in the deaf community. So when Mosaic asked if I'd like to write something, I suggested looking into disfigurement. The facts took me in another direction, as you'll see, and it ended up a very different story than how it began.
     This article is also being published in Mosaic , the Wellcome Trust's web site of health and science. They encourage distribution of their stories, and it is republished here under a Creative Commons license, which means you are free to repost or reprint it as you like, with the only requirement being that you credit Mosaic and link back to the original piece, which has its own set of compelling illustrations, commissioned by the web site. Mosaic publishes a new long form article on topics of health and science every week, and I recommend that you add it to your list of essential reading.

     “Take your ear off for me, please,” Rosie Seelaus says to Randy James, who is sitting on a black exam chair in a special room designed for viewing colours in the Craniofacial Center on the Near West Side of Chicago.
     He reaches up and detaches his right ear, which she created for him out of silicone seven years before. The ear is shabby, stained from skin oil and mottled by daily use. Viewed under various lights in the neutral, grey-walled room – daylight, incandescent, fluorescent – it remains a pasty beige.
     James is a doctor with the Department of Veterans Affairs in Las Vegas – the fierce desert sunlight is also tough on his prosthetic ear. Seelaus is an anaplastologist, a clinician who sculpts artificial body parts for people who have lost them through injury or disease or, as with James, who never had them to begin with.
     He was born 58 years ago with Goldenhar syndrome, a genetic condition that distorts the fetal face, sometimes severely. Some children with Goldenhar, like James, are born missing an ear or part of an ear (he had only the right lobe). Some have bulging eyes, or no eyes at all. James’s jaw was undersized and skewed. He underwent 35 surgeries, including one to construct his right cheekbone using bone shaved from his ribs. He pulls up his shirt to show off slashing scars across his ribcage.
     “I used to tell bullies I was mauled by a tiger at the zoo,” he says.



        The first time I walked through the corridors of the Craniofacial Center, on the University of Illinois at Chicago’s medical campus, I had to sit down. Not that I was going to faint, but the immediate possibility occurred to me. So I filled a paper cup with water and carefully lowered myself into a chair.
     And that was before meeting any patients. Seeing the mute plaster moulds of cleft faces, the blindly staring glass eyes and the little pyramids of false noses was enough. A baby’s hand, made of silicone, grasped at the air.
     That was 15 years ago. I’m not sure whether I was more or less scared of people with disfigurements than is average. As a child I had been terrified. Even of the small square picture on page 289 in the American Heritage Dictionary illustrating ‘contortionist,’ an early-20th-century photograph of a circus acrobat, her chin propped against the back of a chair, her body twisted impossibly above it, a foot planted on either side of her disembodied head. I would turn the pages of the Cs very slowly, steeling myself.
     Most frightening of all, Cynthia Cowles, in Mrs Farmer’s first-grade class at Fairwood School, her eyes set too far apart, her nose flattened. We boys teased her relentlessly, so much that her mother phoned my mother, asking her to make me stop.
     “I felt helpless,” my mother told me, years later. “The things you were upset about, you’d open your mouth about.”



                                                                   
     Fear of people with facial disfigurements is a common phobia, yet, unlike other fears – of height, of water, of the dark – it is seldom discussed, perhaps because so much popular culture, from The Iliad to "Saw V," pivots upon this fear. Perhaps it is assumed: of course you are afraid of the man without a face. Who wouldn’t be?
     Or perhaps because, unlike fear of high places, water or the dark, teratophobia – fear of disfigured people or of giving birth to a disfigured baby, literally ‘fear of monsters’ – has a living object: the injured, burnt, unusual-looking people themselves. Drawing attention to the flinching reaction they often receive, the stares and mockery that are a routine part of their daily lives, can seem an additional cruelty, the sort of vileness enjoyed by schoolyard bullies.
      Why are distorted faces so frightening? Freud classified certain objects as ‘unheimlich’, a difficult-to-translate word akin to ‘uncanny’: strange, weird, unfamiliar. Waxwork dummies, dolls, mannequins can frighten us because we aren’t immediately sure what we’re looking at, whether it’s human or not, and that causes anxiety. A surprisingly large part of the human brain is used to process faces. Identifying friend from foe at a distance was an essential survival skill on the savannah, and a damaged face is thought to somehow rattle this system  

    Psychologist Irvin Rock demonstrated this in his landmark 1974 paper "The perception of disoriented figures." Rock showed that even photos of familiar faces – famous people like Franklin D Roosevelt, for instance – will look unsettling when flipped upside down. Just as, if you tip a square enough it stops being a square and starts becoming a diamond, so rotating a face makes it seem less like a face. The mind can’t make immediate sense of the inverted features, and reacts with alarm. A bigger change, such as taking away the nose, transforms the face severely enough that it teeters on no longer seeming a human face at all, but something else.     
     That isn’t a theoretical example picked out of the air. On another visit to the Craniofacial Center, I enter Seelaus’s examination room to be introduced to a patient. He turns in the chair, and is missing the middle part of his face. There are four magnetic posts where his nose will go, and below it, a void revealing smooth yellow plastic. My eyes lock on his eyes, I shake his hand and say some words.
     A half-hour later, standing on the elevated train platform, I still feel… what? ‘Harrowed’ is the word that eventually comes to mind. Why? There was no surprise. I’m no longer a child but an adult, a newspaper reporter who has spent hours watching autopsies, operations, dissections in gross pathology labs. I was expecting this; it’s what I came here for. What about his face was so unsettling? Maybe seeing injured faces compels an observer to confront the random cruelty of life in a raw form. Maybe it’s like peeling back the skin and seeing the skull underneath. Like glimpsing death. Maybe it touches some nameless atavistic horror. That’s as far as I get before the train arrives and I get on.
                                                                              


     

     Randall H James was born in Ohio in 1956. His first surgeries were done over the next couple of years at Cincinnati Children’s Hospital by Dr Jacob Longacre, a pioneer in modern plastic surgery.
     “He was like a second father to me because I saw him so much,” says James, who didn’t celebrate a Christmas at home between the ages of 3 and 13. School holidays were for operations. Summers too.
     When little Randy began school, his teachers in the city of Hamilton made a common mistake, the sort of automatic connection between inner person and outer appearance that has been the default assumption since history began.
     “The teachers assumed I must be stupid,” says James, who was put in a class with children who had learning disabilities – until teachers realized that he was actually very bright, only shy, and missing an ear, which made it harder for him to hear. He was allowed to sit in the front of the room, where he could hear the teacher, and his grades soared.
     Doctors constructed him a large, puffy, vaguely earish appendage. It looked like a coil of dough, like a boxer’s cauliflower ear. It wasn’t much help.
     As a student at the University of Kentucky, James applied to be a residence hall adviser, someone who assists other students in navigating dorm life. The supervisor who rejected him candidly told him that his odd-looking ear could put others off.
     “‘You might make the students nervous,’” James recalls him saying, then paused, the pain still obvious after 40 years. “These were my classmates.”
              


Plaster casts of soldiers disfigured in World War I
     We are a society where people thrive or fail – in part, in large part – because of appearance. The arrangement of your features goes far in deciding who you are attractive to, what jobs you get. Study after study shows that people associate good looks with good qualities, and impugn those who aren’t attractive. Even babies do this, favoring large eyes, full lips, smooth skin. Billions of dollars are spent on plastic surgery by people who are in no way disfigured, just for that little extra boost they feel it gives to them, gilding the lilies of their attractiveness.
     How do people with unusual appearances fit into such a world? For most of recorded history, children born with disfigurements were wonders, portents or punishments. If they were allowed to live. “A couple hundred years ago, people born with craniofacial conditions, they were just putting them in a bucket of water,” said Dr David Reisberg, an oral plastic surgeon at the Craniofacial Center.
      But even then, astute observers saw beyond externalities. Michel de Montaigne in 1595 encountered a child conjoined to the half-torso, arms and legs of an undeveloped twin (what we would now call a parasitic twin), displayed by its father for money. Montaigne noted: “Those that we call monsters are not so to God, who sees in the immensity of His work the infinite forms that He has comprehended therein.”
     Adults were another matter. Those who came upon their distinctive faces later in life were seen as having been dealt their due, either through heroism in battle – dueling scars were so fashionable in 19th-century Germany that young men would intentionally wound themselves – or through the outward manifestation of inner sin. Plastic surgery began its first, faltering steps as a separate field of medicine after Columbus brought back syphilis from the New World in the 1490s, the injurious effects of which include destruction of the nasal cartilage. Soon silversmiths were fashioning metallic noses, and surgeons were cutting triangular flaps from patients’ foreheads and twisting them to form rudimentary new noses. Sometimes that even worked.
     The twin impulses, to conceal and to correct, have been competing ever since.
      Perhaps the most surprising thing about the history of plastic surgery is how old it is. The use of the term ‘plastic’ to describe a type of medical operation was popularized in German surgical texts in the 1820s, long predating its 20th-century use for the synthetic material.
     British doctors in 19th-century India advanced plastic surgery while trying to repair the noses and lips local warlords cut off as a mark of disgrace. But plastic surgery truly entered the modern age after World War I.
     Trench warfare created facial injuries with a grim efficiency. The trench protected your body and the helmet protected your head, saving your life but not your face. Historians estimate that 20,000 British soldiers returned home with mutilated faces after the War. Society wrestled with contradictory impulses: to seek them out and to shun them. The scarred faces of soldiers were highlighted in books and exhibitions, both to show off what was possible through modern medical technology and to act as a cautionary tale of the horrors of war.
     Yet in Britain there were also schemes to segregate those with facial injuries in their own villages, to keep them out of sight.
      In the 1920s, almost every café in Paris had its pensioned veterans. “Croix de Guerre ribbons in their lapels and others also had the yellow and green of the Médaille Militaire,” Ernest Hemingway notes in A Movable Feast. “I watched… the quality of their artificial eyes and the degree of skill with which their faces had been reconstructed. There was always an almost iridescent shiny cast about the considerably reconstructed face, rather like that of a well packed ski run, and we respected these clients.”
     Sir Harold Gillies set up his famous hospital during World War I in Sidcup, a small English town, which soon found itself populated by servicemen having their faces rebuilt. Certain park benches were painted blue, as a code to the townspeople to brace themselves for the patients who might be sitting upon them, and thus not be startled as they approached.
     This ‘startle’ reaction is a cause of much distress, both for people with disfigurements and for those they encounter, who must compress the lengthy adjustment period that recovering patients themselves go through into a moment, and tend not to do it well.
     Until not so long ago, those reluctant to see people whose appearances stray beyond the range of the usual actually had the law on their side. Many cities in the United States had ‘ugly laws’ designed primarily to reduce public begging. Chicago’s law read:

     Any person who is diseased, maimed, mutilated or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in this city, shall not therein or thereon expose himself or herself to public view…
     The law was not repealed until 1974.
                                                                             



     “So Randy, can I take your bar off?” says Rosie Seelaus. James has a white gold C-shaped armature permanently fixed to the side of his head, anchored to his skull with gold screws. The prosthetic ear snaps onto the bar. “I’ll take your bar off so I can make the substructure. At lunch we can look at images we have.”
      It is Monday. James is in Chicago for the entire week, having his new ear created. Seelaus removes the screws and lifts the metal structure from the side of his head, the first time it has been taken off in seven years, since he decided to replace the crude ear surgeons had created for him with a prosthetic.
     “If this were fitting well we could use the same mould and just replace the silicone,” she says of James, who has lost 24 pounds, which threw off the fit of his ear. “But since it’s not fitting well, we’re going to be starting from scratch and redesigning… Tomorrow will be mostly sculpting his ear.”
      This involves a range of high-tech gear. A CT scan is taken of his left ear. A computer then creates a mirror image of that scan, which a milling machine uses to carve a right ear out of a block of dense blue wax. Seelaus takes this prototype and makes a second, skin-toned ear from softer dental wax, which she puts on James to adjust its form and fit. A colorimeter and a spectrophotometer are used to gauge exact color values.
     “Color is essential to having a successful prosthesis outcome,” says Seelaus, who spends hours matching shades, then fitting James’s ear to his head – even the most perfect, natural-looking ear will fail if there’s a gap between it and the wearer’s head. When she’s done, the ear is then pressed into dental stone to create a mould that she fills with silicone to make the final ear. She mixes liquid pigments into splashes of clear silicone, colors she dabs into clear plastic, which she holds against James’s head, trying to match his skin tone. Seelaus doesn’t pour the colored silicone into the mould; she paints it in, layer by layer. To imitate tiny veins, she uses strands of red and purple yarn.
     Matching the appearance of each individual is crucial. She has, for instance, created ears that were partially burned, to match scarring on a burned face.
 
Rosie Seelaus
    “This is a full-life journey for these patients,” says Seelaus, who has done this work for 16 years. “I’m still learning from patients about what their life experience is and how it changes. Being born with a facial difference becomes a life journey that has a lot to do with acceptance. I’ve learned with patients who are burn survivors – not victims, survivors – initially their relationship with the prosthesis changes, too, throughout their lives… What I try to tell them is, they’ve been through a lot already, it will also take adapting to the new way they look.”
     How people fare on this journey generally depends on what they start with. “It’s about your self-perception before the incident,” Seelaus says.
     And self-perception really matters. A Dutch study in 2012 looked at how well people with facial disfigurements functioned socially, finding that their satisfaction with their appearance was more important than the objective severity of the disfigurement.
     Not that living with a face that is far beyond the mainstream is ever easy, or purely a matter of confidence. It isn’t. It’s a struggle, Seelaus says, requiring courage and endurance.
     “People who sit in this chair are survivors,” she says. “They don’t come to me in this chair without having survived something, and often it’s a lot. It takes resilience to get through the treatment. And what they’ve been through living day-to-day in society takes a resilience we may never understand if we don’t go through that. Burn survivors have a resilience that is phenomenal. The reality is, it can happen to anyone. And so maybe that will bring about compassion.”





     Is greater public compassion on the way? Stares and thoughtless comments are a daily part of life for people with disfigurements. But there are many groups that have long suffered abuse at the hands of society but are now better accepted. Is there any hint that those with damaged faces are traveling the same path that, say, people with Down’s syndrome are taking towards being more fully welcomed and integrated by society?
     “People would really have to change a lot to make facial deformity the new normal,” says Kim Teems, Communications and Program Director at FACES, the National Craniofacial Association. “It’s a very hard thing to go through, not only being looked at strangely, but all the pain of surgeries.”
     Based in Tennessee, FACES started in 1969 as the Debbie Fox Foundation. Fox has an important if forgotten role in the glacial social progress of people with disfigurements. She was born in Chattanooga, Tennessee, on 31 December 1955, with a massive cleft from her upper lip to her forehead, her eyes pushed to the sides of her head: basically a hole where her face should be.
     “Her parents resigned themselves to raising their youngest daughter as a hidden child – secluded from outside eyes,” a newspaper account noted.
     Fox said she had never seen her own face until she was eight years old and found a hand mirror. She screamed in terror. “So that was what I looked like,” she wrote in her 1978 autobiography, A Face for Me. “That was why I couldn’t play with the other children, go to school, go to church, run into the store to buy candy or ice cream. All these things had been forbidden to me.”
     By third grade she attended school via telephone hookup, standing to recite the pledge of allegiance with classmates she’d never met. When, at age 13, she was driven to Atlanta for reconstructive surgery, it was the first time she had left her hometown, the first time she had eaten in a restaurant — in the back, at off hours, but in a real restaurant.
     It was also when “the girl without a face” caught wider public attention. The magazine Good Housekeeping ran a story about Fox in 1970 that showed her only from the back, a squeamishness that the media still struggle to overcome. Seeing people different from oneself can be a helpful step towards accepting them, but for people with disfigurements, public visibility has been slow in coming. Some progress has been made, though. Esquire magazine put a soldier missing both legs and an arm on its cover in 2007, and in 2010 featured inside a straight-on photograph of the film critic Roger Ebert with most of his lower jaw removed because of salivary gland cancer.

                


     Randy James is not optimistic. As someone who not only wears an artificial ear and has sprays of scars under his jaw, but also is a doctor working with veterans whose faces have been damaged by war or illness, he doesn’t see much improvement in how society views people with facial disfigurements.
     “In some ways it’s worse,” James says. “With the rise of social media, you can be an anonymous bully. If you’re not attractive, in many ways you’re not going to be successful in society.
     “I was working at St Mary’s Medical Center in Huntington, West Virginia. I had just gotten my [prosthetic] ear right before I started there. Had I not had my new ear, which really changes my appearance, would they have made me one of their poster boys promoting their hospital? I can pretty much guarantee they wouldn’t have done that if I had my old ear.”
     Some disagree. Just as World War I injected people with disfigurements into the general population, so have a dozen years of warfare in Afghanistan and Iraq, and this new generation of veterans is having an impact on how those with a wide variety of severe injuries are viewed.
     “With our current conflicts, we’re seeing injures far more catastrophic than we used to see,” says Captain Craig J. Salt, a plastic surgeon at the US Naval Medical Center in San Diego, California.
     “Massive tissue destruction, horrific burns… The combination of the level of destruction with amazing lifesaving capability of the front lines gives you a patient population who would not have survived in the Vietnam era… We have people entering rehabilitation horrifically disfigured in significant numbers.”
     Salt, who led the Navy’s effort to begin treating facially wounded veterans with the same team approach used for treating cleft palates, says, “My impression is society is more accepting and more aware of the magnitude of injuries our soldiers and sailors, marines and airmen are coming back with. They’re more accustomed to seeing disfigured patients because of media awareness, with social media… people might be a little less shocked to see a disfigured patient.”
     Soldiers in Britain echo Salt’s sentiment. “Since I was injured five years ago, the profile of disability and injured service personnel has grown massively,” says Joe Townsend, a Royal Marine who lost his legs to a bomb in Afghanistan.
     “Unfortunately, a lot of that’s down to the growing number of guys and girls coming back from Afghanistan with life-changing injuries, but the progress made by charities and the awareness on the television has really helped to educate the general public… Before, I’d walk down the street and I’d notice people looking at me, but it’s pretty much an everyday occurrence to see someone injured now.”
     Townsend says this in Wounded: The legacy of war, a coffee-table book of beautiful, fashion-style photographs of wounded British soldiers, taken by the rock singer Bryan Adams.

                   



     It is tempting to point books such as Wounded, and other popular-culture treatments of disfigurement, and aggregate them into a sign of progress. Wonder by R J Palacio is a young-adult book that tells the story of August, a ten-year-old with severe facial differences trying to adjust to school life for the first time. “If I found a magic lamp and I could have one wish, I would wish that I had a normal face that no one ever noticed at all,” August confides, on the first page.
     And these works do have an impact. Wonder was on the New York Times bestseller list for 97 weeks. Even a decade ago, a child such as Mary Cate Lynch, three, might seldom have gone out in public. She was born with Apert syndrome, an extremely rare genetic condition that affects her head, face, feet and hands. But today, Mary Cate has her own cheery website, introducing her with photos and video. Her mother, Kerry Lynch, has taken her to 80 Chicago-area schools to present a program, often tied to the class reading Wonder, that explains Apert syndrome.
     “Every parent does what they think best,” says Lynch, a nurse. “I thought the best thing I could do is to educate others so they wouldn’t be afraid of it. Fear comes from the unknown. I just thought if I could tell others about it, show them that, yeah, she’s a little bit different, but she’s more similar. If I could explain what these differences are, be very candid about it, that’s what I could do to help her in her life.”
     Society takes a long time to accept people who look in any way different. Many Americans thought Irish immigrants, as a class, were ugly when they migrated in numbers to the USA in the 1850s, mocking them for their features, holding them up as signs of congenital inferiority. A few decades later, they marveled at how much these same Irish immigrants had somehow changed – “even those born and brought up in Ireland often show a decided improvement in their physiognomy after having been here a few years,” Samuel R Wells wrote in the 1870s, making the common error of confusing a shift in one’s own perception with a change in the object being perceived. Irish faces didn’t actually change; the American public’s antipathy did, slowly and without their even being aware of it. 
Changing Faces poster

     Awareness of the challenges facing people with facial differences has not yet grown enough to smooth the path of any given adult walking into a restaurant or any given child showing up on a playground. But the seeds of improvement are definitely being planted. In Britain, the group Changing Faces put posters of disfigured people on the London Underground. Its founder, James Partridge, read the noon TV news in London for a week in 2009 to show that, while delivering information may be monopolized by the beautiful, it doesn’t have to be.
    “Are things changing?” says Partridge, who was severely burned in a car fire at age 18. “I think it’s very much about where you look… In 2008 we launched our campaign for face equality. We started public awareness, putting posters up, saying, ‘Have a look at these characters, they’re okay.’
     “We definitely had an impact… [though] outside of the confines of Britain, much less. Though in Taiwan there is a Facial Equality Day in May. In South Africa, the message of facial equality is very easy for them to pick up. I think it’s such a simple concept, the prejudices we need to attack.”

  

     In 1998, the Italian fashion company Benetton ran a series of ads featuring people with disabilities. The ads awakened the guilt I still felt about Cynthia Cowles. I realized we had some unfinished business. I tracked down her phone number and called her, writing about our conversation in a Chicago Sun-Times column published at the time.
     Talking to Cynthia was awkward for the first five seconds. Then we were old classmates, laughing and sharing stories. She said she had seen me interviewed on TV.
     “You still play with your shoelace when you’re nervous,” she said.
     I was nervous now. I told her I was sorry for being mean to her in grade school.
     “If you were mean to me, there were so many other people who were so much worse,” she said. “I recall you as being one of the kinder people. You were the one in eighth grade who came to visit me in the hospital – you told me your mother made you come, but you stayed a half-hour, very uncomfortably – and brought a box of stationery.”
     I have no memory of that, though spilling the beans about my mother’s command was exactly the sort of dopey, over-honest thing I would say, then and now. She recalled feeling sorry for me.
     “You got teased for being fat, and got teased because you couldn’t skip,” she said, recounting how the gym teacher tried to drill me into skipping.
     After we caught up – we both had got married – I asked her something I had always wondered about. What exactly was the cause of her disfigurement?
     “I was basically born without bone in my nose, and the front of my forehead was not closed,” she said. “I’m hydrocephalic, which means my head is bigger than it should be, which put pressure on my brain.”
     She had more than 60 operations. “Now I’m done,” she said.
     We laughed a lot, particularly when she told a story about dealing with her tormentors. “My mother always thought if you ignored it, it would go away,” she said. But that only went so far, and one day she turned around and socked a kid who was teasing her, then was terrified because she realized the assistant principal had been standing right there and saw her.
     “But he just gave me the thumbs-up sign, and said, ‘If you didn’t, I was going to.’”

               



     On Friday, Seelaus heats James’s new ear in an Imperial V Laboratory Oven, then, wearing light-green oven mitts, removes the cylindrical mould. After it has cooled, she pries the sections of the mold apart. “Look at that,” she says, brushing away excess silicone, then almost sings, “I think that looks pretty goooood.”
     She lifts out a startlingly human-looking ear. With a few trims and a touch of color here and there, she attaches it to James’s head. From two feet away you can’t tell it isn’t a natural human ear. James is delighted. “It looks a lot better, huh hon?” he says to his wife, who has come to see the final result. She later pronounces the new ear “sexy”.
     Seelaus gives him some practical care tips. Keep away from solvents, small children and pets – animals like to chew silicone. The ear will sink. “If you go swimming, if you’re in the ocean, wear your old ear,” she says. “Don’t put it on top of a radiator or toaster oven.”
     I estimate the ear costs $10,000 – its fabrication took up most of Seelaus’s working week – and she does not contradict me. I also observe that Seelaus must be one of the few artists who hopes that her work goes entirely unnoticed by the public, and she doesn’t contradict me about that, either.
     Happy though he is with his improved appendage, when I ask James if I could take a picture of him wearing his new ear, he refuses. He says he is worried, not about the photo’s appearance on Mosaic, but that it might later be lifted and included in some online “hall of monsters”. I ask several times in several ways, reassuring him that in my view this is highly unlikely. His answer is always the same: No. A reminder that looks are always relative, always only part of the story, and that our reaction to them fills in the rest.
     There is no such reluctance with Seelaus’s next patient, Victor Chukwueke, a Nigerian-born medical student with neurofibromatosis, a disease of rapidly growing tumors that crushed his jaw, distorted his face, and left his right eye an empty hollow. He is here to get a new false eye and surrounding socket, to help put his future patients at ease. Even without a prosthetic, however, with a scarred void where his right eye once was, he smiles and poses as I click away.
     Seeing people with disfigurements is important, because once a person, or a society, becomes familiar with them, apprehension fades. Just a couple of weeks before, I had needed to steel myself, sitting in my car in the parking lot of the Loyola University Medical Center, on my way to interview burn survivors, actually saying out loud, “If they can live it, I can see it,” to gather my courage.
     But by the time I meet Chukwueke, that trepidation is gone. I had asked Seelaus to send me a photo of him, so I could prepare myself ahead of time, but she didn’t, and I go in cold. Hurrying into the Craniofacial Center, I spot a man who is obviously him, plop into the chair next to him and introduce myself, and we immediately begin to talk. His speech is sometimes hard for me to understand, because of his damaged jaw, so I have to lean in very close, our noses inches apart, as we talk to each other. It seems the most normal thing in the world.
     Chukwueke puts his situation neatly into perspective.
     “We all have an issue,” he says. “We all go through things in life, go through difficulties. You don’t have to let your challenges bring you down or let you be sad and depressed. It’s a matter of perspective."


VOICES


                   
Jamie Nieto: “Oh man, I’m going to be ugly”

             


Jamie Nieto, 31, works as a golf pro at a suburban Chicago resort. He speaks with a gravelly voice, the result of inhaling flame.


     The injury happened 8 November 2003. It was the morning of my 20th birthday… I decided to do some yard work. I had cut down a tree, and figured I’d burn some logs, but got too close to the can of fuel.
     When it first happened, in all honesty, the first thought I had after I got put out, maybe even when I was on fire… was, "Oh man, I'm going to be ugly." Not that I was an Adonis before it happened.

Were you right?

     I guess it’s all a matter of perspective. I really didn’t get to see what I looked like until… I got a glimpse of my face in a car window as I was going to the ambulance; it was all red and skin falling off and there was no indication what I would look like post-surgery…
     I didn’t see what I would look like until [two months later at the Rehabilitation Institute in] the elevator and a mirror in the corner and I finally caught a glimpse and I was kinda stunned… Got in the bathroom of my hospital room and just stared in the mirror for what felt like an eternity but may have only been five minutes… It was hard to look at because it was still real fresh, the scars were very immature… red, healing. I was a big glowing face… My ears were gone, my nose was pulled up, my mouth was barely there… It was overwhelming. It was a lot.

What’s it like to live with now?

     Stares are constant. Every day. I work in a business where I meet 150, 200 new people a day. Some of them may not notice, or not pay attention. I’m fortunate my facial scarring blended in. Sometimes people won’t know. I’ll be behind the counter, checking in a golfer, and you can see, it’s like “Oh”… I know it’s not a negative reaction. There’s more of, “It’s not something you see every day.” Someone will ask what happened. I’d rather them ask than stare and form their own opinions or stories of what might have happened.
     I have no problem talking about it. Kids are fine; they’re curious. Adults are the worse ones. They’ll do the stare, the double-take… They’re the ones who should just come up and ask. Kids will make funny comments and I make a joke back to put them at ease. I’ve had kids ask, “Are you wearing a mask?” and I’ll say, “Yeah, one that I can’t take off.” Then I try to use it as a teaching tool too, I say, “This happened because I was in a fire” and go into fire safety with them.
     I’ve been dating the same girlfriend at little over three years… I had it in my head, “What woman would find me attractive?” Scars on my face, scars on my chest… But I was already defeating myself before even talking to a woman. My girlfriend now doesn’t even notice it. She finds me attractive.
     Not to say there’s not negative feedback, but it’s few and far between. In the place I worked at before, a couple guys, behind my back at first… would call me “Crispy”. They didn’t think anything of it, because they knew I’m so easy-going about it. But that’s something that kinda stung… I said “Guys, that one’s not cool.”


Edward Schrank: “I was already like this”
         


Ed Schrank, 38, was a technical sergeant in the United States Marine Corps. He is missing his left eye and part of his face surrounding it because of tear-duct cancer. 

     I grew up in rural Illinois. I was never very much about physical appearance. Young people who look good… they care about physical appearance. Young people who rebel, they also care, the kids who are wearing all black. I was neither of those.
     My older brother was a popular guy. It never occurred to me to look a certain way. My hair was weird. I just wasn’t a member of trends… It was never about fitting in, or rebelling.

Why did you join the Marines?

     I was bored. It was the first thing I ever did to not do everything my brothers did. Before then all I ever wanted to do was what they did.
     I joined the Marines, this is 1996, and I just travelled. I did a “hardship tour” – you sign these contracts, they would give you extra money. That’s what I wanted to do. Imagine someone paid you extra for what you wanted to do. What a cool, badass word [hardship]. You get to go to places in the world where no one wants to go to. I liked ’em. I liked being in the middle of the desert somewhere.
     I was a high-performing Marine. I was selected for some programmes that made me feel like I’d really accomplished a lot. Then all of a sudden, if you haven’t been to war, you weren’t shit in the Marines. So all the things I had done were now meaningless. I was like, “I gotta go.”
     I got hurt in Ramadi [in 2006]. Then they found a brain tumour. I was supposed to die that year… I had this extremely rare, extremely slow-growing brain tumour… It actually started in the tear duct, then it spread through the nerves and ended in the brain, over the course of a couple years. I have brain damage because of it… I have a fake skull.

Why not continue reconstructive surgery or wear a facial prosthetic?


     I didn’t care. People used to talk to me [about having more surgery]. I didn’t make a big moral stand, like “No! I’m going to go with my appearance and I’m going to be stronger for it.” It wasn’t that hard for me because I already had this personality.
     I had 17 goddamn surgeries over four years. You think I want another fucking surgery? Who the fuck does that to themselves? Fuck you. For what? I got surgery to save my life. I am the most radiated person in the history of medical radiation… Separate teams from Harvard, the University of Chicago and Northwestern saved my life multiple times. Now you want me to do more medical care so that I look nicer? FUUUCK YOU! It is so offensive to me. And this person is looking at me because they care about me. They think they are helping me… I didn’t grow stronger. I was already like this.


Victor Chukwueke: “I’ve learned to accept who I am”
              


Victor Chukwueke, 29, was born in south-eastern Nigeria. His jaw was slowly crushed by the swelling tumors of neurofibromatosis, which makes his speech sometimes laborious. 


     I grew up in a very small village, Ezere. Around 300, 400 [people] but no running water, no electricity. I don’t remember not having the tumor. As I was growing, it was getting bigger. I didn’t have access to medical treatment. So the tumor was left unchecked.
     Growing up, I didn’t want to look different. I just wanted to look like other kids. Sometimes I didn’t want to go outside. People staring at you. Some kids make fun, I feel a little bit ostracized. Some people don’t understand this disease. They think it was a curse.
     My parents heard about the nuns. I was brought here [to Michigan] by Catholic missionary nuns. They brought me here in 2001 from Nigeria… I stayed with them and had nine surgeries.

You went to community college for two years, then Wayne State University, where in 2012 you were selected to give the commencement address. What are you doing now?

     I’m in medical school at the University of Toledo, just finishing up my second year. It’s challenging. It’s going well, you just have to put in the effort. I have some friends, we play soccer, ping pong.


What’s it like being stared at?

     It reminds you. It reminds you that I have an issue. That I have a problem. A group stops what they’re doing and starts staring at you. They are shocked. I’m getting used to it.


When you see yourself in the mirror, what do you think?


     I've lived all my life kind of like this, so I’ve kind of accepted who I am. My biggest worry is how I think people will see me, that’s what I’m worried most of all. Especially now that I’m trying to become a doctor. I’d like to see patients, so I’m more worried about how comfortable they're going to be.

Is that why you wear a facial prosthetic?


     I’m trying to make others feel comfortable, especially my patients.

How do you feel about interacting with patients for the first time?

     I’m confident in my ability. Just a little bit apprehensive. I’m sure that people will understand.

Victor has set up a humanitarian foundation and hopes to become a medical missionary.










18 comments:

  1. What a tremendous amount of surgery you must have done for this informative article, Mr. Steinberg. Perhaps it can help some people esp. with the U of I info. You must be strong stomached to handle some of those visits. How tough these people are. The marines story is especially moving.

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  2. oops , I mean research that you did , not surgery

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  3. Wow. Good that you do the blog. I don't think a column-length article would have done justice to the stories.

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  4. The Fifth Amendment of the Constitution, allows government to seize private property via eminent domain, for the public good. These days we see things like the Chicago School Board, or a pension fund, buy industrial property using eminent domain, pay for environmental remediation, and sell it to a connected developer at a small profit. It then gets re-zoned residential, and the developer's property value doubles or more in value.For all their faults, politicians like Vito Marzullo and Richard J. Daley were men of vision. They took a lot of criticism for using eminent
    domain, to buy large tracts of land in the near west-side. The original intent of the Amendment, for the public good, was fulfilled with the construction of places like, The Chicago Lighthouse, UIC Campus, and expansion of the Illinois Medical District. Correct me if I'm wrong, but much of this was achieved with minimal corruption.

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    1. All well and good Bernie, but what does this have to do with craniofacial surgery?

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    2. The Craniofacial Center is located in the University of Illinois Hospital, which is part of the Illinois Medical District. Most of these facilities where build post World War II with the assistance financial or otherwise, of local politicians. These days we hear of things like Children's Memorial Hospital getting an 8 million dollar Illinois grant, to fund surgical procedures for children, and the Hospital CEO gets a phone call demanding 50K in political donations.

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    3. I thought it was an interesting observation, Bernie, and, compared with some of the off-topic comments that get posted hereabouts, yours is at least in the ballpark, unlike those which are so far beyond left field that you can't even smell the beer. : )

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    4. Actually the Craniofacial Center is in the south entrance to the U of I Dental School Building on Paulina, not the hospital.

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  5. Well done, NS. Another on the list of things I wouldn't have read if you hadn't written it, but I believe that your honesty, humanity and talent for succinct observations added to the impact of this compelling piece. "I’m not sure whether I was more or less scared of people with disfigurements than is average." Personally, I seriously doubt that I'm in the "less" category. I have a hard time with the cleft palate photos advertising a charity that one sees in many places, though I think I might be able to turn the pages of the C's in the dictionary at a normal speed...

    One would hope, and perhaps even go so far as to expect that, as with the strides being made by society with regard to acceptance of many other issues that used to result in people being marginalized for not being "normal", the future will be kinder to those experiencing "facial discrimination" than the past has been. Articles such as this can certainly help in that regard.

    Nice that they included links to a sampling of some of your work at the Mosaic website. Maybe the Steinberg Bakery will get to serve some new customers, at this late date...

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  6. A well wrought and thoughtful piece of reporting Neil. Too bad it can't reach a wider audience than this blog and Mosaic. If I owned the Atlantic Monthly or some other mag that runs long form articles it would.

    Issues most of us haven't had to deal with but should think about. My mother, an elementary school teacher, spent several years teaching disabled children, most of them suffering from nervous system disabilities but some severely disfigured. I remember her saying that most were lovely kids although there were always a few real brats who were hard to discipline and dealing with their parents was sometimes a problem. I think her point was that when you got to know them they were much like everybody else, but sometimes their loved ones had a hard time letting them be.

    A nice shout out to the profession. Mention plastic surgery these days and the first thing that comes to mind are the treatments people endure in aid of the pretense that they're not growing old.

    Tom Evans

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    1. Thanks Tom, although the story was posted by CNN and run, in a shorter form, in the Sun-Times, so it got out there.

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  7. Thanks Neil. Articles of this depth and length are becoming harder to find. Even Vanity Fair seems to have embraced the corporate "Bullet Point" - "Keep their attention" style of articles.

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    1. Well, I like to think I had "Keep their attention" in mind as well. To be honest, I finished writing it at this length, more than twice what we contracted for, and sent it to my editor for guidance as to what to cut. She didn't want to cut anything --- well, one vignette that made me look bad.

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  8. Excellent and fascinating article, one of your best in my opinion. Perhaps, and just speculating here, but might another reason people have such a hard time getting around the fear or aversion of disfigured people is because as a child their parents told them not to stare or look away as if what they were seeing was something to be afraid of? An odd question for you, did the Mosaic editor change the spellings to the Brit way, or was it something you did knowing it was being published in the UK?

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  9. I read this first on Mosaic and very much liked both the main article with its intertwining stories and the short interviews. Especially the one with Schrank, maybe because his attitude was so different from what one usually reads/expects on this topic. The approach you took to relaying his story was great - I had the feeling I just had a conversation with him.
    I was wondering why Mosaic decided not to publish the photos you took of Nieto, Schrank and Chukwueke (or hire a portrait photographer). Strangely, I am not sure myself whether they should have or not. On the one hand, one doesn’t want to “display” people, giving in to that fascination for the strange. On the other, I understood that one idea in the article was, that by showing disfigured faces in the right context, one would help change attitudes towards people with disfigurations.
    On a more personal note, working in a large academic hospital, I see patients with disfigurations or signs of grave sickness on a daily basis. I work as a researcher (on cartilage tissue engineering, among others, for restoration of nose/ears) not as a clinician, so I only see them briefly on the hallway. Yet, every time, I feel urged to make a conscious decision on where to look. I don’t want to shy away from them, to not make them feel like they are repulsive. Yet, I also don’t want to focus (stare) on their deformities, not to remind them of what sticks out. Which of course is ridiculous, because even without my glance, they are probably very much conscious of their body and how it is “different”. I feel guilty of not knowing how to react. When facing non-disfigured people, the same decision is subconscious, so I don’t have to decide. To some extent, I think, I wrongly extrapolate my own thoughts onto others. When I have something (temporarily) bothering me about my image (e.g. greasy hair day) I initially feel like in the centre of a Panopticon. Maybe having a permanent disfigurement actually yields a different attitude though, because you have time to develop a relationship to it – that’s why I appreciated the article, it gives insight.

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    1. At first I was just going to run the more undemanding photos, like the ear, but I felt that having the Voices of people, but not showing their photos, was a cop-out, particularly since, in my view at least, you get used to them so quickly.

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  10. All good, all informative, but it was the personal bit about your talking to your childhood classmate, Cynthia, that really hit home. We all have those moments from childhood--ones that we wish we could take back or correct for the better. Couple that personal instance on the issue of disfigurement "acceptance" with your extensive research packed a powerful punch. This is a piece of journalism with staying power, not just for it's usefulness to us all, but because it reaffirms that beneath a person's surface lies his or her unfathomable dignity.

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  11. but feeling guilty for too long, isn't healthy either

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