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Thursday, 25 June 2015
Facial discrimination: Living with a disfigured face
Richard Norris: left, in high school in 1993; center, after suffering a
gunshot injury; right, after face transplant surgery.
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
colors in the Craniofacial Center on the Near West Side of Chicago.
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,
gray-walled room -- daylight, incandescent, fluorescent -- it remains a
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.
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
"I used to tell bullies I was mauled by a tiger at the zoo," he says.
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.
that was before meeting any patients. Seeing the mute plaster molds 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
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
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."
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?
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.
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.
The 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.
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.
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?
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.
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.
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
"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.
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
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
"'You might make the students
nervous,'" James recalls him saying, then paused, the pain still obvious
after 40 years. "These were my classmates."
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
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."
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.
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.
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.
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.
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."
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.
"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.
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:
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.
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."
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.
were fitting well we could use the same mold 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.
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 mold 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 mold; she paints it in, layer by layer. To
imitate tiny veins, she uses strands of red and purple yarn.
the appearance of each individual is crucial. She has, for instance,
created ears that were partially burned, to match scarring on a burned
"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."
people fare on this journey generally depends on what they start with.
"It's about your self-perception before the incident," Seelaus says.
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.
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.
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."
"A Face for Me"
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?
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
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.
resigned themselves to raising their youngest daughter as a hidden
child -- secluded from outside eyes," a newspaper account noted.
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.
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.
Educating the public
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
"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.
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."
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.
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 U.S. Naval Medical Center in San Diego, California.
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
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.
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."
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.
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.
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.
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.
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.
things changing?" says Partridge. "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.'
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."
Face to face
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.
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.
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."
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.
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
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?
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.
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
"But he just gave me the thumbs-up sign, and said, 'If you didn't, I was going to.'"
A matter of perception
Friday, Seelaus heats James's new ear in an Imperial V Laboratory Oven,
then, wearing light green oven mitts, removes the cylindrical mold.
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."
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".
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."
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 tumours 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.
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.
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.
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 perception. How
you see it."