A Lonely Life: The story of Rocio Zaragoza

As a child, Rocio Zaragoza often asked her grandmother and mother why she couldn't go to school or play outside like the other children. The answer was always the same: She needed to get her surgery first. They would remind the little girl that life would change after doctors built her a new face.

So Rocio waited, spending her childhood in Mexico virtually isolated from the outside world. She didn't attend school. She never learned to read or write in her native Spanish - or English. She had few friends.

To this day, interacting with strangers is usually painstakingly awkward for the 26-year-old. During conversation her voice is barely more than a muffled whisper. Her eyes remain pinned to the floor and her head tilts to the left. This way her thick black curls shroud the left half of her face, Rocio explains. That's the side that is swollen and distorted by a tangled knot of veins just below the skin's surface.

``Sometimes people laugh,'' she says in Spanish, her tone somber and matter-of-fact. ``When they talk to me they talk slower than they do to other people, or they just ignore me.''

Rocio has long believed a radical and complete physical transformation is her only path to happiness. For her that translates to marrying, having children and holding a job in child care or restaurant work.

Born with a rare deformity called venous malformation, Rocio hoped doctors could someday take away the facial swelling. But there is no known cure for the condition, says Dr. William Hoffman, a craniofacial and cosmetic surgeon at the University of California, San Francisco who has examined Rocio.

But there's a chance, Hoffman says, surgeons could reduce Rocio's deformity using laser treatments to clot the excess veins before trying to surgically remove them. The surgery isn't scheduled. Doctors will review the outcome of the upcoming laser treatments before deciding if and when the surgery should happen.

``This is probably not going to be a medical miracle story,'' Hoffman said shortly after talking about the risks and prospects of a reconstructive face surgery with Rocio and her mother in February. ``But we're going to try for some improvement.''

It would be an operation with high risks and high stakes. Too much blood loss would force doctors to halt mid-surgery, Hoffman said. That outcome would almost certainly rule out the prospects of any future surgery.

Rocio has faith her new doctors will succeed despite her past harrowing experience with surgery. When she was 9, doctors in Mexico promising to improve her appearance ended up twisting her left eyelid, nearly blinding her eye. They also damaged her windpipe. Ever since that operation Rocio has suffered shortness of breath and seizures.

Despite understanding all too well the risks involved with surgery, Rocio says it's worth the chance of living with a more normal face.

American dreams

Rocio blames her facial deformity for what she describes as an unhappy, stunted existence. She's convinced her looks are the reason her family and strangers have repeatedly ostracized her throughout her life.

While growing up in a small Mexican city of Ocotlan, Rocio's grandmother didn't allow her to attend school alongside her older brother. Instead, the girl was sent to work in a tortilla factory. She was left at home whenever the rest of her family ventured out to church, neighbors' houses or the market.

At the age 15, Rocio moved to California to reunite with her mother, who was cleaning houses in Hayward. She recalls daydreaming on the bus ride to the United States about leading a life more like her brother's. She fantazed about a normal life, revolving around school, homework and friends.  

During her first few months in California, Rocio took her first step toward this dream by attending James Logan High School in Union City. But unable to speak English and socially lost, Rocio's hope of connecting with peers dissolved. When her mother found kids heckling Rocio one day, she pulled her daughter out of school.

From then on Maria Zaragoza instructed her daughter to stay home while she worked. Attending Mass and a youth group at St. Bede's Catholic Church were the only outings Maria allowed Rocio. The teen spent many afternoons alone inside her family's dimly lit Hayward duplex - coloring or listening to Spanish radio.

Shutting away people with disabilities is a common phenomenon in Maria Zaragoza's native Mexico and throughout the Third World, says Mary Dolan, director National Organization on Disability's world committee. Dolan said this tendency stems from a lack of public education and resources for the disabled in most developing nations.

Meanwhile, ignorance perpetuates the social stigmas that cause people to fear and ostracize people with physical and mental disabilities, Dolan says. Often, shame drives family members cloister their disabled children.

``There are social norms. Even in the developed world there's a sense of failure of producing a child that's not considered normal,'' Dolan says.

Isolation stunts the verbal, social and educational development of a disabled individual. And the overall, long-term effect on the individual is almost always permanent emotional devastation, she says.

``From their earliest days they grow to believe they're not meant for this world, for this society.''

Craving acceptance

For Rocio, her quest for social acceptance often involves trying to hide her face, meanwhile drawing attention to the rest of her body.

When she goes into public she often changes into skin-tight pants and shirts, and the occasional bare midriff. But though she craves the attention of boys her age, seeking it is a risky venture for Rocio. Few things hurt worse than when a boy takes a second glance at her before nudging his friends and bursting into laughter, she says.

Her mother says part of the reason she tried to shut her daughter away was to shelter her from such public ridicule. But Rocio says she prefers freedom even if it comes at the cost of occasional fingerpointing, whispers or snickers from strangers.

Even as a teenager, Rocio refused to be exiled, finding ways to sneak out of her Hayward home almost every day. She would walk to the corner store to buy candy. Later, liquor became her purchase of choice. Rocio explains that drinking eased her solitude, quelling feelings of sadness and loneliness. Occasionally, she accompanies a sympathetic neighbor on shopping trips to Southland mall.

But Rocio's favorite escapade became boarding AC Transit buses and riding aimlessly around Hayward. For hours, Rocio would watch the passengers, who became her windows to experiences she'd never had - schoolchildren toting backpacks home or adults weary after a day's work.

As Rocio's ventures grew more frequent, rumors spread through her close-knit, Latino neighborhood about a strange-looking woman. Some started calling her ``cara de elefante,'' - elephant face in Spanish - whenever they spotted her ambling the sidewalks on her wobbly, slightly uneven legs.

For a short time, one of her favorite destinations became El Castillito, a taco shop where Rocio was developing a crush on one of the workers. She arrived at the tacqueria one afternoon wearing her favorite pants - tight, navy blue jeans with gold buttons down the seams. Rocio asked the young man if he wanted to go to the movies. He slowly shook his head as he backed into the kitchen amid taunts and whistles from fellow workers. Rocio left the taco shop that day and didn't return.

Not long afterward, though, she would meet Roberto, a young man from her church group, whom she has often referred to as the love of her life. From the time she was 15 to 24, Rocio routinely snuck out to see Roberto, usually when her mother was working.

But the day Roberto proposed to her, Rocio insisted she couldn't marry anyone until after her long-awaited surgery.

``I told him that first I wanted to see if doctors could operate on me, if God would grant me that miracle,'' she recalls. ``He would tell me, `The flaws of your face don't matter to me.' ''

But Rocio didn't believe him, fearing he would eventually regret marrying her if she stayed the way she was. Roberto eventually gave up trying to persuade her otherwise and told her she was waiting around for the impossible.

Years later, living in a group home for the mentally disabled, Rocio says she sometimes wondered if Roberto was right. But she has found ways to console herself, like recalling the image of one couple who used to attend an adult day care program with her. The sweethearts both had Down syndrome. Rocio would stare as the two giggled, played footsie and exchanged star-struck gazes throughout the teacher's lesson. She says the mental image of the two lovebirds seemed to reassure her. ``If they can find love, so can I.''

``I'm not retarded''

Rocio ended up in the group home after a falling out with her mother, sparked partly by Rocio's frequent venturing out against Maria's wishes.

Rocio was sent to be evaluated by the East Bay Regional Center, where doctors diagnosed her as having a "moderate level" of mental retardation, according to medical records. She was then placed in a care home for the mentally disabled to live alongside about 12 people with mental disabilities. Rocio has lived there for almost three years now.

Since the beginning of her residence, Rocio has insisted she was placed in the group home not because of her mind but because of her face. She's adamant that she's not mentally retarded, claiming she's one of the few sane people there. She also says she fears for her safety.

Last fall, a 14-year-old girl with cerebral palsy attacked Rocio, knocking her down and seizing her throat. Alma Paz, a 41-year-old resident that Rocio regarded as a friend, pulled the girl off as Rocio began convulsing with seizure.

Shortly after that outburst, Rocio and Alma started plotting their escape.

Rocio and Alma spent hours fine-tuning the plan's details, calculating their rent and food budget from their government-issued disability disbursements. Rocio planned to get a job bussing tables at a fast-food restaurant.

But Alma abruptly backed out, saying she couldn't live with Rocio because Rocio wasn't her family. Alma had decided she only wanted to live with her daughter.

After that, Rocio felt even more trapped and desperate to leave.

Not long after her falling out with Alma, Rocio tried to run away during a house field trip to a fast-food restaurant.

As her fellow housemates waited curbside for the small white van to ferry them back to the group home, Rocio limped away down the city block as fast as she could.

Ignoring a supervisor's commands to come back, Rocio boarded the AC Transit bus. She rode for a few hours around the wide suburban boulevards and tree-lined streets of Union City. Eventually with nowhere to go, Rocio found her way back to the group home.

Upon her return several caretakers demanded to know why she had disobeyed orders. ``I'm not retarded,'' was Rocio's reply.

Hope at last?

After that incident, Rocio set her hopes on reuniting with her mother, who had since moved from Hayward to Manteca, where her working-class family could afford to buy a house. Rocio has been to visit the Manteca home twice in the two-plus years since her mother, stepfather and brother moved there.

On her most recent visit last October, Rocio asked her mother the question she had been mulling over for months: Could she move back in with the family? Without hesitation her mother replied this was out of the question. There were emotional wounds from earlier fights that ran deep.

In the months that followed, Rocio grew severely withdrawn, according to group home workers. She stopped helping with the chores and rarely spoke. Some days she wouldn't emerge from her bedroom. She refused to leave the house, spending most of her days in front of the television or in her room.

Not until this past spring, when doctors started looking into the possibility of reconstructive face surgery, did Rocio surface from her winter-long seclusion.

Shortly after her February hospital appointment Rocio went on her first social outing in months, joining a trip to Wal-Mart.

At the store, Rocio pushed an empty shopping cart through the aisles for about an hour, perusing aimlessly. She appeared oblivious to the stares and second glances of fellow shoppers when she took a long moment to stare at the gargantuan display of Valentine's Day chocolate heart boxes.

Shortly after venturing back into public, Rocio made a ground-breaking social leap. She started working her first American job, at a food-packing plant in Union City. The Independent Way - an agency that helps people with disabilities find employment, offered her the position.

Rocio previously had turned down the agency's help, arguing that she wasn't handicapped and she didn't want to work with anyone who was.

But now that she's working a regular 8 a.m. to 2:30 p.m. schedule Monday through Friday, Rocio says it's better - and much less boring - than spending her days inside the group home.

She's also met someone. Like her, her new beau also has epilepsy. Over the past month they've met each other's parents. On the days they don't see each other at work, Rocio said she looks forward to phone calls from Francisco Reyes.

``I don't care how she looks,'' Reyes says. ``It's the kindness that's most important.''

Maria Zaragoza said recently that for the first time in years, her daughter talked to her about wanting to marry and start a family.

``I told her she should wait until her operation is over with,'' she says.

But Rocio says though she's excited about her upcoming surgery; she no longer thinks it's a reason to put her life on hold. She believes that would be a mistake - one she's made before.

She also recited Dr. Hoffman's words of caution: The surgery, at best, may only slightly improve her appearance.

``I know doctors can't make me beautiful,'' says Rocio, a small hand making a vague gesture toward her face. ``But if God wants to grant me that miracle, maybe the doctors can help me, even if it's just a little. Whatever God wants.''