New York -- She has spent more than half her life trying to change the way she looks. For 18 years Lucy Grealy has gone from surgeon to surgeon, from hospital to hospital, from New York to Iowa to Scotland in a desperate effort to "fix" her face.
She's 31 now, a young woman who early on learned how to survive life on the edge: a life sharpened to the breaking point with steel blades of physical and psychic pain. And she learned something else too: how to live with a face so disfigured that it shaped every aspect of Lucy Grealy's outer and inner worlds.
"I was too ugly," she told herself in the seventh grade, "to go to school."
The face she judged so harshly was not the face Lucy Grealy was born with; the new face arrived later, ushered in on the arm of illness.
First there was the cancer: Ewing's sarcoma, a rare and virulent disease with only a 5 percent survival rate. It appeared when Lucy was 9. Then there was the treatment for the cancer: removal of half her jaw, followed by three years of chemotherapy and radiation. When it was over, the cancer was gone.
So was a large part of the right side of her face.
"I spent five years of my life being treated for cancer," she writes in her recently published memoir, "but since then I've spent fifteen years being treated for nothing other than looking different from everyone else. It was the pain from that, from feeling ugly, that I always viewed as the great tragedy in my life. The fact that I had cancer seemed minor in comparison."
The book is called "Autobiography of a Face." And it is that, of course: an account of Ms. Grealy's physical journey back toward the face she'd lost, back through the operations and pain and terrible isolation. But it could also be called the autobiography of a soul: an account of an extraordinary child fighting her way up through loneliness and confusion to a spiritual place, a place free of judgments based on physical appearance.
Written in a voice that is both compelling and insightful, "Autobiography of a Face" seems to mirror back to readers something relevant to their own lives. It is one of the triumphs of the book: Despite the singular nature of her experience, Lucy Grealy manages to convince an amazing array of people that she is speaking directly to them.
"I think the book is really about just being alive," Ms. Grealy says now. "About who you are and how you identify and place yourself in the world. And about sorting out information the world gives you about who you are -- and then figuring out what's valid and what's not valid. That's very painful. And a lifelong process."
But a process that offered her a valuable lesson.
"The thing my life has taught me is not to have an attachment to an idea of who you are in the world," she says, choosing her words carefully. "The only path you can take is to be willing to give that up at any moment. And then to reinvent yourself and reprocess how you fit into the world, rather than clinging to an idea of who you should be or who you're supposed to be."
Lucy Grealy made those mistakes. Because she was "ugly," Ms. Grealy thought she was unlovable. And because she yearned to be loved, she clung to the idea that if she got back her "real" face she would become lovable.
"That's what feeling ugly is like," she says now. "It's feeling lonely and unloved. And it's very important to separate those feelings from the word 'ugly.' Because the word is just a label. As 'beauty' is a label for feeling loved."
Happiness for the young girl was only an operation away. The thought was always there: "When my face gets fixed," she
promised herself over and over, "then I'll start living."
About three years ago, Lucy Grealy finally got her face "fixed." It took 18 years and nearly 30 operations.
But for those who read "Autobiography of a Face" it takes only a few pages to grasp a central truth about its author: that long before her outer face was ever fixed, Lucy Grealy had an inner spirit that saved her life.
Lucy Grealy's book is so filled with wisdom, insight and courage that it's tempting to cast the young writer, who now teaches poetry at Sarah Lawrence College, in the role of some transcendent, spiritual guru. Tempting, that is, until you actually meet her.
It comes as a surprise, for example, to find upon arriving at her Soho loft that she is suffering from a bad hangover. But here she is, sitting in her sparsely furnished loft, nursing a hangover and watching her two cats, Stinky and Charlotte, chase one another across the bare wood floors.
"I was out until 4 in the morning with somebody I haven't seen in a long time," she explains in a soft voice, one that is both nasal and musical. Dressed in jeans and a T-shirt, shoe-less and
makeup-less, Lucy Grealy looks thin and fragile. It would be a mistake, however, to assume that the soft voice and slight frame are clues to her personality.
The truth is that underneath the slight figure resides a judgmental, demanding and rigorous personality, one that assesses other people -- including the way they look -- with a critic's eye.
"I'm very judgmental," she says of her approach to looking at another person's face. "I look for signs of self-awareness and intelligence. I'm not some transcendent being who doesn't like to look at the way people look." She also is not a person with a narrow view of who's attractive and who's not. "It's important for people to learn how not to be stuck with some idealized image. It's important to enlarge the repertoire of people you can find attractive."
In the repertoire of principles that governs Lucy Grealy's view of the world -- and her writing -- none looms larger than honesty. "I just wrote the book very honestly, the way I've lived my life," she says. "And I have this aesthetic idea of how one should live one's life and how one should write. And that they should be somewhat similar."
It is her strict code of aesthetics, one assumes, that causes her to bristle at any suggestion that "Autobiography of a Face" is a written account of her feelings.
"Feelings?' she says, her voice rising in mock horror. "Oh, no. That's horrible. Why would anybody want to write about their feelings?" She laughs dismissively. "That's really embarrassing, isn't it? And it makes for very bad art, to talk about your feelings."
It could be argued, however, that there is a vast difference between the language of sentimentality and that of feelings examined under the microscope of unflinching honesty. Here, for example, is how Lucy Grealy writes of an encounter at the age of 14 with some younger children in her hometown of Spring Valley, N.Y.:
"The kids at the parties were fairly young and, surrounded by adults, they rarely made cruel remarks outright. But their open, uncensored stares were more painful than the deliberate taunts of my peers at school, where insecurities drove everything and ++ everyone like some looming, evil presence in a haunted machine. But in those back yards, where the grass was mown so short and sharp it would have hurt to walk on it, there was only the fact of me, my face, my ugliness. . . . The pain these children brought with their stares engulfed every other pain in my life."
A parallel world
To cope with the constant bombardment of pain that defined her world, young Lucy created a parallel world, one that sprang from her intelligence and her exceptional imagination. In a sense, she became an artist whose medium was her illness.
Throughout the chemotherapy and the radiation, the hospital stays, the disappointing, unsuccessful surgeries, the boys who called her "baldy" and "dog girl," the adults who stared or averted their eyes, the depression and isolation she felt -- even from her family -- Lucy managed to construct a plot that gave her some sense of control over the horrible circumstances of her life.
In her secret life she imagined herself to be in life-threatening situations: in Vietnam where a land mine might blow her away; in a concentration camp where she felt the blows of the guards; in a jungle where she was stalked by lions and tigers. Compared to such situations, her own seemed almost "frivolous."
"I developed defensive methods of trying to make the things that hurt me not matter," Ms. Grealy says. "And in order to do that I had to be very intellectually and emotionally inventive. Because I didn't want to suffer, basically. But I was suffering. And I didn't want to be someone who became bitter and was at the mercy of their suffering. . . . So I tried to lessen or diminish my suffering by enlarging my scope in the world. I didn't want to occupy just one room. So it meant being very open to the world and incorporating everything that was happening in the world, rather than in just my life and my neighborhood and my school."
There's a pause during which the cats, tired out from chasing one another, settle on the sofa next to her. The pause, it seems, has allowed Ms. Grealy to reflect on another, less positive aspect of her "secret life."
"I think I was able to come up with some generous and insightful and advanced ways of incorporating and evaluating what was happening to me, but it was also a weird, masochistic thing," she says. "I did learn a lot about the world, but it was bad because then I tended not to understand that I was actually suffering. Like I was trying to pretend I wasn't all the time."
There was one night each year, however, when reality and fantasy intersected in young Lucy's life; one night when she could walk about in the real world with happiness and freedom: Halloween. On that singular night, behind the mask that hid her face, Lucy Grealy knew the joy of being normal.
Ms. Grealy says she can't recall anyone -- not her family, not her doctors, not her teachers, not anyone -- ever trying to talk to her about what she was going through. "It was partly my thing," she says. "I just shut everybody out." She pauses. "But I don't remember anyone ever trying."
When you talk to Lucy Grealy's family and friends about the book, one consistent response to the book is surprise: surprise at learning just how alone she felt and how much she fantasized to get through her daily life.
"I knew that it must have been terribly painful for her," says Lucy's mother, Trena Grealy. "But, no, I was not aware of the extent to which she dealt with it by fantasizing."
As for never trying to talk to her daughter about her emotional state, Lucy's mother says: "It was very hard to talk to Lucy, to tell you the truth. And at that time I had four other children and there were a lot of other tragedies going on in our family at the same time."
One of those other tragedies was the slow descent into schizophrenia of Lucy's 17-year-old brother, Sean. Another was the death of Lucy's father. Lucy and her twin sister, Sarah, were 15 at the time, the youngest of the five children.
"Even before the operation, Lucy was very different from her twin," Mrs. Grealy says. "They were both sought-after but Sarah was always much more gregarious and wanted to be liked by all the children. Lucy didn't seem to get upset if somebody disagreed with her. And she didn't seem to mind being alone."
"Lucy was always a loner," says her twin, Sarah Grealy. "She would have been a loner whether this happened to her or not. She definitely had an insight into things that were far beyond the average 9-year-old."
The book, says Sarah Grealy, is "great." But also difficult for her to read. "I still can't read parts of that book without crying. How alone she was, how alone she felt. I knew she was isolated but I didn't know she was as isolated as she was. . . . I think Lucy went through something that she wasn't able to explain when she was young. And I also think Lucy closed herself off to us."
Lucy, it seems, managed to hide her pain from everyone. Even the surgeons who operated on her.
Dr. Daniel C. Baker, a prominent Manhattan plastic and reconstructive surgeon, recalls vividly his first impressions of Lucy, then 15. "She was very shy, very quiet. But I thought she was incredibly composed and had really adapted extremely well to the type of facial deformity she had to live with at that age."
Have his impressions changed since reading her book, he is asked. "Well, yes. Because in it the defenses she used in normal daily relationships are down and she's pouring out her soul."
On one point, however, there is no gap between the perception and reality of Lucy's reaction to her or deal. Everyone is in awe of Lucy's courage.
Her sister: "I do look at her and say, 'Thank God, it wasn't me.' I say that because my sister is an amazing person and I don't know where people find that kind of strength. I don't know if I could have survived it."
Her mother: "The way Lucy dealt with it, her bravery and courage, affected the self-image of everyone in the family. All of us feel a bit diminished beside her bravery. We all feel, 'Well, I couldn't have stood it.' And they're probably right. But you don't know that until you have to do it."
Mary Thiele, a classmate of Lucy's at Sarah Lawrence College, remembers visiting her friend in a New York hospital. It was the summer after Lucy's sophomore year, and the operation on her face had taken eight hours.
"Going to see her in the hospital was a pretty horrendous experience," Ms. Thiele says. "Heart monitors, a tracheotomy, feeding tubes -- at one point she was put on a respirator. She was on the welfare ward because she didn't have health insurance, and it was a grim, grim place to have an operation. It was so hot I felt I was going to pass out. Lucy, though, never complained about the pain."
The operations continued
Lucy Grealy's long journey to reconstruct her face began when she was 15, two years after her chemotherapy ended. The operations continued through high school and through her years at Sarah Lawrence College. By the time she left graduate school at the age of 25 she'd had almost two dozen operations. They hadn't worked. She still looked pretty much as she had at the beginning.
"I tried not to have expectations," she says of her disappointing ,, surgeries. "But I had them anyway. And they were always kind of ruined."
Then one day a sister living in London told her of a surgeon in Scotland who was doing a promising bone graft procedure. After some hesitation Lucy decided to try it.
"The bone grafts were very, very painful," she says now of the lengthy and complicated procedure.
But they were also successful. "I think I'm out of the loop now," she says of her surgery cycle. "Although I might get something more done on my lower lip."
And what does she think about the face reflected back from her mirror?
"Sometimes I think, 'Oh, my God, I'm so ugly.' And then other times I think, 'I'm great.' "
Now she is trying to reconstruct some of the inner damage -- and anger, perhaps -- that has been stored up inside her for so long. She's been in psychoanalysis for a year.
"There's the whole couch thing," she says of the therapy. "But we really hardly ever talk about childhood." She pauses. "But I have a feeling that we're zeroing in on it. We're hovering, but it hasn't happened yet."
Still, Lucy Grealy describes her life as "great. I have a lot of friends and I have a lot of dates -- no serious relationship right now but a lot of dates. And I get to travel a lot."
And does she still battle the old feelings about her appearance when she's attracted to a man?
"Oh, yeah," she says, laughing. "But I try to separate the fear from the reality. And I try not to quash the relationship from the very beginning."
Her book, because it touches on the issue of how society unfairly judges women by their appearance, is being hailed by some as a social document. Ms. Grealy rejects this point of view.
'Not a spokesperson'
"My book is not about images put forth by society," she says. "I'm not a spokesperson for some counter-movement against the fashion industry or the beauty-myth industry or whatever. And it kind of amuses me that people continuously try and cast me in that role. And I'm not a sociologist -- so I can only really tell my own story."
Nonetheless, we all share the struggle to answer the question Lucy Grealy has been chasing all her life: What is the relationship between appearance and self?
And what, she is asked, has she learned about that relationship?
She hesitates before answering. Then: "I think what I learned was that I had to let go of this idea that I could figure out who I was by looking at myself. Part of the issue for me was that I never felt what I looked like related to who I was.
"People can only see what we look like. That's what's there. Then they have to take the next step to add more to the picture. What does the person think like? What do they feel like? We very much are related to what we look like. But mostly we're related to what other people think of what we look like."