In 1995 Dr. Shanilka deSoyza was living with her husband, Robert Smith, in an unfurnished basement with a concrete floor in Hermiston, Oregon, a good place to grow watermelons. Their daughter, Ellie, was three years old, and deSoyza was pregnant with son Conor.
It was not what she envisioned, but life is a passage through unexpected angles and terrain. Her father, also a doctor, was awarded a Fulbright Scholarship in 1969 while living in the family’s native Sri Lanka. Upon winning the award, he could have traveled anywhere in the world to do research.
He chose Arkansas, a good place to grow soybeans.
Ellie Smith was born 10 months before deSoyza began her family medicine residency at the University of Cincinnati. She knew her daughter’s behavior was unconventional, but she didn’t know why. Ellie still wasn’t eating solid food. She screamed incessantly and allowed few people to hold her.
The residency, deSoyza says, was disastrous. When she was on call, Smith, would take Ellie to the hospital to nurse; and he would sleep in the call room as deSoyza walked up and down the halls cradling Ellie and gently humming.
“I would come home, and my husband would hand the baby to me and walk straight out the door. So after working for 36 hours, I would come home and take care of the baby. I would barricade myself in the living room so she couldn’t escape or injure herself.”
Residency is competitive, even cutthroat, and requires intense levels of commitment. deSoyza worked one Christmas Eve with a 102-degree fever in order to meet expectations and demonstrate willingness. She was sicker than any patient she saw that night.
So it was unthinkable when she opted out during her second year. It’s difficult to decide which part of one’s heart to break, but her decision came down to staying the course and treating patients or remaining at home to care for Ellie. She chose love over ambition.
And that’s how they wound up in Hermiston. Smith had grown up in Oregon and graduated from OSU with a degree in crop science. He found work at the Hermiston Agricultural Research and Extension Center while deSoyza stayed home with Ellie and Conor.
At age 6, Ellie was diagnosed with autism at about the same time Smith started drinking again. Both of them had mountains to climb. Smith went into rehabilitation, and Ellie went into treatment.
The family left Hermiston in 1999 and returned to Cincinnati, where there were more resources for treatment and where deSoyza could complete her residency. They were taught how to rear a child with high functioning autism and how to heal a family that had started to unravel.
The diagnosis provided an understanding of what they were up against, and, to a lesser extent, what treatments existed. One doctor told them not to expect too much, that she may never learn to read, but deSoyza knew differently. Ellie, at the time, already was reading and within a few years read aloud the first four Harry Potter books to Conor.
Autism is not clearly defined and is referred to as part of a spectrum that includes Asperger Syndrome and other forms of developmental disorders. Treatment varies from person to person, and as the family learned more about autism, Ellie slowly began to emerge from within.
In 2001, the family moved to Corvallis, where deSoyza is a doctor in Student Health Services. Ellie attended Philomath High School, where she met a speech pathologist named Julie Balderston, who taught her to take pride in her autistic identity.
“She understood me in a way no one except for my mother understood me. She was highly cognizant of what specific things made me different, but she never treated me like I was different.”
Initially she felt alone at school and often ate her lunch beneath a tree outside the building. She saw the world from the outside looking in, but by the end of the school year, she made new friends; and the following year she was on the swim team and started attending school dances, seeing more in herself than she knew existed.
“I didn’t know I could function as a social being,” she says. “When I think about how far I’ve come socially it’s amazing. I’ve had a difficult time with things people take for granted.”
In 2011, Ellie graduated from Philomath with a 3.9 grade point average and missed qualifying for the state swim meet by less than one tenth of a second. Now 20, she is in her third year at OSU and is planning on majoring in pharmacy. She initially planned on a career in engineering, but that changed last year, when despair overcame her with sudden force and a cold embrace.
“I started having depression issues,” she says. “They tried a number of meds, and one of them turned me wacky. I tried to kill myself with a Tylenol overdose.”
An outpouring of support washed her ashore and lifted her. She realized the importance of having faith that hope, when lost, would return.
“I realized, ‘I want to live. I’m not sure why.’”
When released from the hospital, one memory wouldn’t let go. She remembered the nurses talking one day as they changed her IV. It struck Ellie that medicine was an important tool in healing the sick and repairing the broken.
“It hit me. I wanted to be a pharmacist. It’s a way of returning the favor,” she says.
It’s compatible with the one thing most gratifying to her: helping others. She knows what it means to be told she would accomplish little in her life, to sit alone eating lunch beneath a tree, to give up on life. No one, she says, should feel that way.
“It’s the feeling of being there for someone in whatever way they need me. If I can do something, spend a significant amount of time and make someone’s day, that’s a perfect day for me.”
There are days, however when Ellie is the one needing help. That’s when deSoyza’s telephone rings.
“If she’s being overwhelmed or if something is bothering her, there’s no safe place to go,” deSoyza says. “Sometimes she will go in a corner and talk to herself. Sometimes she’ll just run off somewhere, and that means it would be easy for her to end up in an unsafe situation and not realize what was going on.”
Last fall, Ellie had a meltdown in a physics class, and reacted by fleeing to a fire escape. The door locked behind her, and she became hysterical and confused. She telephoned her mother and asked what to do. deSoyza rushed to the building and unlocked the door.
She has unlocked many doors in her current job. deSoyza says she feeds off the energy on the OSU campus and finds reward in helping students become and remain healthy. It’s a good fit for her, she says, a good place to grow hope.
Photos and story by Duane Noriyuki