Isolated by her appearance, she yearned for a place in the world
The doctor wasted no time getting started.
He took Ana’s face in his hands and angled the left side up to the light. He squeezed and pushed the folds of skin on her chin, her cheek and forehead. He separated the eyelids to look at her eye.
“Can you see anything?”
“Yeah.”
He asked her to track his finger from left to right.
“A little blurry?”
“Yeah.”
He didn’t usually work so fast, but he had been disoriented by this new patient. She was the last appointment at the end of a busy day, and he had misread the file. He thought she was here to discuss a face lift.
He stepped back to collect his thoughts. Here was a case you might hear about in med school or in conversation with colleagues but never expect to see yourself. The day’s routine consultations slipped away -- the breast augmentations, face lifts and tummy tucks -- and he began wondering how he would treat her condition and what he could possibly achieve. He tried to keep his excitement in check.
“I think we might be able to help,” he said. “But I’d like to talk with the other doctors on the team.”
First, he wanted to take some pictures, and he stepped out of the room to get a camera.
Ana stared straight ahead. At 24, she had seen her share of doctors and listened to their optimism and concern. She didn’t want to get her hopes up.
But this doctor -- he said his name was Munish Batra -- wasn’t at all what she expected. He was young, good-looking and encouraging.
Maybe things would be different this time.
She had her grandmother’s fine features and her mother’s hair, and in her parents’ hearts, Ana Rodarte was the most beautiful baby around. It was easy for Ismael and Margarita to overlook what seemed at first to be just a birthmark.
She was born a month premature and weighed a little more than 5 pounds. Small enough to fit in a shoe box, Ismael thought, and once they took her home from the hospital in Tijuana, her aunts, uncles and cousins all pitched in to care for her.
She grew quickly, and Margarita captured every milestone with an old Polaroid. On the edge of the snapshots, she carefully wrote Ana’s age.
“Tenía 2 meses.”
“Tenía 4 meses.”
She was their princess. On the beach in Ensenada. On the bed with her pink and brown teddy bears. At her baptism in California. On her first birthday with her first pinata.
They applied camomile lotion to the little red mark on her cheek. It reminded them of a bee sting. They were willing to listen to anyone who had an opinion about what to do. Many did, but nothing seemed to work.
When Ana started walking, they got a camera with a flashbulb on top. They took it everywhere. To the shoe store on the day of a two-for-one sale. To the neighbors where she played on a tricycle. To the park across the street where she sat in a swing for the first time.
Margarita put the photos in an album. Ana loved to look at them. At a folklóricocompetition, her aunt took a picture of her dancing across the stage with her cousin, holding her red ruffled skirt out. She had a smile that barely contained her happiness.
As that little red mark on her cheek began to spread and distort her features, her parents told her not to worry, not to be bothered by how others stared. They felt their love grow stronger even as they became more isolated for having to cope with a problem that no one seemed to understand.
Es la sangre de mi sangre. She is the blood of my blood, Ismael thought, and whenever Margarita cried, she made sure that Ana didn’t see the tears.
But Ana knew something wasn’t right. At an early age -- “somewhere between the crayons and the glue, the swings and the milk boxes,” as she later recalled -- she came to realize that she was different from the other children.
When she asked her mother why, Margarita would tell her that God made her this way.
Why then, she’d ask, was God so mean?
The face is our calling card to the world.
There is an eloquence to the features we inherit from our parents: the symmetry of the eyes framed by the brows and cheekbones; the rise of the nose; the sensual curve of the mouth; the gentle parting of the lips.
The face telegraphs essential information -- sex, age and ethnicity -- and, more subtly, it conveys a broad spectrum of moods and emotions: inquisitiveness, love, boredom, impatience, indifference, anger.
It also elicits reactions from others that shape our lives. Every day we read faces and make assumptions about identity and character without any basis other than appearance.
It is hard to say what my assumptions were when I saw Ana for the first time. The manager of public relations at Scripps Memorial Hospital in La Jolla had told me that the hospital and a local doctor were about to treat a young woman with facial tumors similar to the Elephant Man’s.
The surgical plan was ambitious, and because the woman and her family could not afford the cost, the hospital and the doctors would donate their services. Would I be interested?
Certainly I was intrigued. I knew about Joseph Merrick and vividly remembered the 1980 movie about his life, David Lynch’s “The Elephant Man.”
I made arrangements to meet Ana at Scripps a few days after Christmas in 2005. She was there for a CT scan and an MRI, waiting in a private room, away from the prying eyes of other patients.
We sat across from each other, making small talk, and I initially noticed everything but her face: the studded bell-bottom blue jeans, the baggy, dark-gray sweat shirt that covered an 80s Rock T-shirt, the pink Hello Kitty purse.
Her curly dark hair was lush and tied back. Her ears were pierced with small silver studs. She had a demure manner, and she turned away from me when she spoke.
I got the impression she wanted all of this -- the hospital, the reporter -- to go away. Still, I felt provoked by her shyness. I wanted to look at her straight on, but then I didn’t. I didn’t want to make her feel self-conscious, yet I wanted to see evidence of God’s meanness.
To be in her company was to feel both pity and curiosity, and as we talked about the complexity of the surgeries that lay ahead, I asked her what she was most afraid of.
“The needles,” she said without hesitation.
Her vulnerability jarred me. I felt ashamed. I realized that I had lost sight of the person and seen only the disorder, and I wondered if I was any different from the sideshow barkers and doctors who had exploited Merrick.
Ana and I started e-mailing, and I took occasional trips to her home in Riverside County to meet her parents, attend a birthday party and a quinceañera and see what a summer weekend might be like for her.
I soon discovered a complicated young woman who was not so very different from anyone else her age.
“i live my life like normal people do,” she wrote, “its not like I have a reason not to, ya know what i mean?”
I learned that she enjoys movies, family parties and shopping for bargains. She stays close to friends, loves e-mail and instant messaging, and often answers her cellphone on the first ring. She has a collection of nearly 250 DVDs, most of them slasher films.
She said she was shy, but I came to believe that acting shy was her way of exercising some control over the world around her.
“youre not going to see my sensitive side. . . . i hardly let anyone see it,” she said in one e-mail. “why let people take advantage of that?”
Yet I sensed a sadness for the aspects of life that would elude her.
“i don’t want kids no, the risk is too high for me to have them be born with the same condition. . . . i wouldn’t want them having to experience what i did, and i cannot work, no one will hire me so i gave up on that, and i don’t plan on ever getting married, i don’t believe in it.”
Of course she claimed she didn’t care. “Not all dreams come true,” she wrote once, sounding more resigned than bitter.
In time I interpreted her rationalizations as a measure of how vulnerable she was to the truth: that she would never be married, never gaze upon her own child or be anything less than dependent on others for her livelihood, and all because of her face. I wondered if someday she would prove me wrong.
Neurofibromatosis.
Ana first heard this strange, ungainly word when she was a child. A doctor had mentioned it during one of her first visits to the hospital.
Like most genetic disorders, neurofibromatosis is a challenge to the faith we give to conception, to the roll of the dice we agree to when we try to bring new life into the world. It appears as soon as the two sets of chromosomes begin matching up, his to hers, egg and sperm, 23 then 46, and it has three distinct manifestations, each characterized by tumor growth in tissues surrounding nerves.
The form that Ana has is known as NF1 -- or Von Recklinghausen’s disease, for the man who studied it more than a century ago -- and it targets a gene on the long arm of the 17th chromosome that produces a protein called neurofibromin.
A mutation in the gene can result in too little neurofibromin, or none at all, and cell division -- an intricate biochemical dance between an accelerating agent called RAS and the braking mechanism, neurofibromin -- goes haywire.
It is a common defect, occurring in 1 in 3,000 people. Its symptoms can be as benign as birthmarks or small bumps on the skin and as severe as tumors like Ana’s, which in some cases can become cancerous. (As similar as it is to Merrick’s condition, researchers now believe that he had a different disease, Proteus syndrome.)
Half the cases of NF1 arise from mutations that occur during conception, and the other half are inherited from an affected parent, a fact that broke Ismael Rodarte’s heart even as it drew him closer to his little girl.
Es la sangre de mi sangre.
He was 16 when surgeons in Mexicali operated on his lower back to remove large, wart-like bumps they thought might be cancerous. Five years later, he had a similar operation in Mexico City, and in 1977 a third in San Diego.
Although the doctors mentioned neurofibromatosis, no one talked about the genetic risk, and by the time he met Margarita, he thought the worst was over.
They worked in a factory in Tecate, Mexico. He was 31 and she 23. They were something of a wild couple. Some relatives say they eloped. They will tell you it was a simple civil ceremony. His sister gave them money for a hotel room, and before long, Margarita was pregnant.
At first they talked about having a large family, at least four children, but after Ana’s birth, they began to think otherwise. The hospital in Tijuana could do nothing for the swelling on the left side of her face.
They wanted American doctors to see her. They wanted a better life for her. Their home was no larger than a small trailer, with a dirt floor and cockroaches. They made arrangements for Ana to live with Margarita’s sister Teresa and her family in the U.S.
They visited her every two weeks. One year went by, then another. When the factory where they worked was relocated, they decided to head north. On Jan. 16, 1983, with $10 between them, Ismael and Margarita crossed the border for good.
At first the Rodartes moved in with Teresa. Their new home in Riverside County was lost in a mottle of subdivisions, old farms, trailer parks and strip malls built up against treeless mountains, with the San Jacinto peaks in the distance. It was as good a place as any to disappear.
Margarita found work with a potato distributor. Ismael took a job loading box cars and picked onions in the off-season. Many times he hid from la migra. She didn’t have as much trouble. Once, he was caught and sent back to Mexico; 15 days later, he returned.
By now, Ana’s brow, cheek and lip had begun to sag, and it was difficult for her to keep her left eye open. She was 4 1/2 . They had to do something.
The family had heard about Loma Linda University Medical Center, and Ismael had seen on television how its doctors were able to replace a little girl’s sick heart with the heart of a baboon. If they could do that, surely they could help Ana.
The drive to the hospital, located between Riverside and San Bernardino, nearly 45 minutes from their home, made Ismael and Margarita nervous. They knew if they were caught, they would be deported, but once they saw the stately complex of white towers, they felt safe. In the lobby hung a large portrait of Christ.
Swept up by the bustling atmosphere -- residents in short white coats, attending physicians in long white coats and a smell like spilled rubbing alcohol -- they listened to the strange terms used to describe Ana’s condition: hydrocephalus, hemangioma, lymphangioma and, eventually, neurofibromatosis.
With the hospital’s new imaging equipment, doctors saw the shape and the mass of the tumors that had infiltrated the left side of her face, the orbit of her eye and a region of the skull known as the pterygopalatine fossa, through which passes a bundle of nerves and arteries.
NF1 can affect any nerve in the body, but in Ana’s case, it targeted one of the 12 nerves in the skull -- the second of three branches of the trigeminal nerve, the one that brings sensation to the face, upper lip, upper teeth and gums.
These nerves look like small white threads that branch through the muscles and into the layers of the skin. Dissect one of these threads and it would look like an electrical wire, its outer covering a myelin sheath that encases the neurons.
In Ana’s case, the cells of this sheath were multiplying uncontrolled because the braking mechanism, neurofibromin, was not functioning properly. Over the years, these cells had developed into a network of diffuse tumors.
Ana underwent a series of surgeries at Loma Linda. Much of the cost was covered by the Rodartes’ health insurance at work; a state medical program for children paid the rest. The first operation took place in 1985, when Ana was 5. The goal was to raise the sagging features of her face and decompress the tissue inside her left eye socket.
The experience was exhausting for the family. Though their circumstances had improved -- green cards in 1988, a rented home of their own, and, for Ismael, a more secure job -- they became scared. The tumors kept growing, and the operations brought no lasting improvement.
In 1995, their doctor outlined plans for the fifth and most ambitious surgery. He would begin with a broad, C-shaped incision from Ana’s forehead to her neck, and with an electric stimulator he would map the nerves of her face to minimize the risk of cutting one. If that were to happen, he explained, her features would be partially paralyzed.
In preparation, Ana was fitted for a mask that would help minimize the post-surgical swelling. Ismael and Margarita worried that the operation would harm their daughter or that she would die. She was 14, about to start high school, and after they left the hospital that day, they never returned.
As Ana entered adolescence, the tumors grew faster than ever, enveloping the left side of her face. Turn the pages of the Rodarte family photo album and you will find no shots of her from this period. Gone is the little girl whose smile barely contained her happiness.
She tried to explain it to herself. Maybe in another life she had it better, and this was the price she had to pay. Or maybe this life was a test, so when she went to heaven, she’d be rewarded for the trials she faced on Earth.
Everyone at her high school knew Ana. Some thought she had elephantiasis; others thought she had been burned. Another assumed that her father was a farmworker and her condition came from pesticides that he handled. But no one really knew. No one asked, and she didn’t talk about it. She didn’t need to. She had been going to school with the same friends since childhood, and they had come to accept her.
She went to football games and soccer matches. She worked on the float for a homecoming parade. She enjoyed her art class and joined the French Club for the chocolates and the fundraisers. Her teachers cut her some slack, assuming that she had more important issues to deal with than reading “Treasure Island.”
In 1999 she graduated. Friends married and had babies. The Senior Circle, a gathering place on campus shaded by sycamore and ash, was forgotten, and Ana’s yearbook -- with the photo she posed for on that cold, cold day -- landed on a shelf in her bedroom, its inscriptions slowly growing less meaningful.
Do all the things you want to do when you want to do it. . . . don’t let no one get you down.
You’ll do great in whatever you wish to do. Thanks for always being so beautiful.
Well, it’s been fun this year fighting with you in P.E. You are one of the nicest people I have ever met and don’t change.
Ana enrolled at the local community college and was offended when the administration wanted to put her in classes for students with learning disabilities. Then one morning as she was getting ready for school, she fainted. Her dog found her on the floor, and she decided it was best to wait on college.
One day her cousin Lalo turned to her and asked, “Is your face getting worse?”
“Yeah,” she said.
By now, the tumors had subsumed her left profile, obscuring each landmark -- the eye, the bridge of the nose, the corner of the mouth -- beneath a swirl of sagging creases and dimples.
She stopped wanting to go out. She spent hours on the computer. She met a boy online, and they started to chat regularly until one day he visited her and complained that she drank too much. She dumped him.
Her mom asked her cousins to take her on outings. Sometimes they’d go to the park or to McDonald’s, but strangers would stare. She tried to be polite and simply walk away, but it was hard.
“Why don’t you just take a picture?” she’d snap. “It will last longer.”
Once a little girl in the family burst into tears when she saw Ana, and later when she and her mom went to recycle some cans, two strangers walked up and gave her hugs.
“God bless you,” they said.
She’d tried to get a job at the local Hometown Buffet and McDonald’s, even at the potato plant where her mother worked, but the managers didn’t bother to call back.
Partying with her cousins became a favorite pastime, zombies her drink of choice. They would take spur-of-the-moment trips to the Morongo Casino in Cabazon. They’d stay out late, dancing and drinking.
After 9/11, she began to think about the people who were on those flights and those who missed them. She realized that her life, like theirs, was a lesson in the fickleness of fate.
Most of us grow up believing that the world will open up for us and we will find our place: a home, love, purpose, work. For Ana it was never that simple.
How do you create a life when you are so dependent upon others and for no other reason than how you look?
Nearly 20 family members had gathered at the park. It was hot, August 2005, but there was shade above the picnic tables.
Fran Vigil planned to stay just long enough to drop off an outfit she’d bought and enjoy a plate of food and maybe some cake. A retired nurse, she worked at a local agency that assists families in raising children of relatives. She had helped Ana’s Aunt Teresa take custody of the 3-year-old granddaughter whose birthday they were celebrating.
From a distance, Fran saw Ana for the first time. The pity did nothing to temper the shock.
A few days later, she approached Teresa.
“Who was the girl with the growth on her face?” she asked.
“La sobrina,” she said. My niece.
“Do you think they’d like some help?”
Teresa couldn’t be sure. There had been some surgeries, but the family had given up. She would ask them, however.
When Ana heard that a stranger wanted to help her, she was wary. The family had no money and, besides, the operations at Loma Linda hadn’t done any good.
Still, Teresa asked if she could have a photograph.
Ana grabbed a shot of her and her ex-boyfriend. She cut him out, and the next day Teresa handed the picture to Fran.
Fran wasn’t entirely sure what she’d do with it. She took it home and showed it to her granddaughter and her friends. “I want you to see this,” she said to them. “If you think you have something to complain about, then think about her.”
She went to her doctor’s office in Hemet, and when she saw some young men in lab coats and name tags walk past the reception desk, she stopped them.
“I want to know the name of the disease that the Elephant Man had.”
“Neurofibromatosis,” one of them said.
She wrote it down.
One morning, a co-worker showed Fran a magazine article about a charitable organization that offered reconstructive surgeries to people who could not afford them. Fran scanned Ana’s photo and sent it by e-mail.
“We’ve encountered a young lady with neurofibromatosis,” she wrote, “and wonder if you could help in any way.”
