Priscilla Wong creates paintings on a computer by moving a digital brush with her tongue because she long ago lost the use of her arms. Her labored breathing is aided by a ventilator, an instrument she has had to wear since she was 10. Wong can sit up for only a few hours a day and, as her grandmother Maria says, the now-23-year-old UC Davis graduate spends much of her life in “in solitude. In solemnity.”
She fills the time, the loneliness, the physical confinement, with her art. She lies flat on her back in her bedroom and guides a joystick that acts as a paintbrush by creating strokes on a computer screen – a virtual canvas. With her right foot, she can click from program to program, creating watercolors, acrylic paintings, pencil drawings.
At first, painting was just a distraction to fill the time. Her mind had sped her to a UC Davis degree in women’s studies, achieved in less than four years. But her disability had prevented her hopes of working as a paralegal while freely volunteering her time to social groups assisting women and the disabled.
“That’s what she wanted for herself,” said Lisa Gutierrez, Priscilla’s mother.
It’s the story of Priscilla Wong’s life: a spirit yearning for a purpose grows stronger within a body that grows weaker. To fill the void, Priscilla Wong paints so that her spirit can live.
Wong creates landscapes and flowers that evoke joy free of pain and restrictions. “I want to see how far I can take it,” she said.
At 17 months, Wong was diagnosed with nemaline rod myopathy, a rare muscle disorder. The disease attacks muscles in the face, neck, shoulder, pelvis and arms and can cause severe respiratory distress and impede motor skills.
When her baby couldn’t hold up her head the way her cousins could, Gutierrez became alarmed. A proper diagnosis took months. The fear of not knowing what was happening with her daughter was then overwhelmed by a more profound fear.
Doctors had told Lisa Gutierrez that her daughter likely wouldn’t live beyond the age of 10. “That shattered our world,” Gutierrez said. “Priscilla spent 21 days in the hospital with pneumonia. She couldn’t eat. She couldn’t breathe.”
Gutierrez brought her daughter to their south Sacramento home from the hospital at the end of those 21 days against the wishes of doctors.
The little girl was alone with her thoughts and her imagination in a sterile hospital room, trapped in her body but unwilling to surrender. “She kept saying, ‘Mommy, I want to go home,’ ” Gutierrez said.
“We were ready to say goodbye,” said Gutierrez of what she feared would be the inevitable nightmare for any parent. “Priscilla was ready.” Gutierrez set up a hospital room in her own home, with her and her parents as Priscilla’s primary caregivers.
“It would take her an entire day to eat an 8-ounce can of food,” Gutierrez said. The situation could hardly have seemed more dire, but back in her bedroom, Wong had a change of heart.
“She decided she wanted to fight,” Gutierrez said. Wong survived, despite what the doctors said. From the age of 10 to 14, she was home-schooled, in part to protect her compromised immune system. Simple colds passed between middle school kids might have sent her back to the hospital.
At 14, Wong decided she had to be out in the world. In a wheelchair, she attended Arthur A. Benjamin Health Professions High School, graduating fourth in her class. In a speech to her fellow graduates, she exhorted them to follow their dreams.
“Be happy with who you are today, but never stop imagining who you could be tomorrow,” she said in her speech. “Also remember to live your life to the fullest and never forget to show others how much they mean to you; thank them.”
Gutierrez said when her daughter applied to colleges, she did not mention her disability. She wanted to be accepted for her mind. At UC Davis, she wrote for the school newspaper, stretching her mind as a writer and profiling diverse subjects, including Sacramento brewer Jan-Erik Paino. She rode the bus from south Sacramento to Davis every day.
She would dictate her college papers to her grandmother, Maria Tafoya. Her mind grew sharper. “Pretty soon she was smarter than me,” Gutierrez said. Wong wrote papers about mortality, including one that imagined a young cancer patient being led through different versions of heaven to accommodate people of different faiths and beliefs.
Her mother and family had raised Wong to be spiritual, a faith that spawned many outlets. Her room, where she paints, is adorned with pictures of strong women who soar above their limitations. She feels connected to Scarlett O’Hara, the classic character from “Gone With the Wind.”
“She has attitude,” Wong said. “I’ve probably seen that film more than I should have.” To her, O’Hara’s signature line – “As God is my witness, I’ll never be hungry again” – also speaks to an emotional and spiritual vow to rise above the afflictions and maladies of life. Movie posters on her walls mingle with scores of Tinker Bells with colorful wings for taking flight.
In the stillness of her room, with Taylor Swift’s music in her ears, she has taught herself to move her tongue intricately to create her images. “She expresses what’s inside her through her art,” said Marcie Bombola, a local artist who has become an artistic mentor to Wong. She has helped arrange for her work to be shown in January at the Artists’ Collaborative Gallery in Old Sacramento.
“She expresses her love for life, to hang on, to keep going,” Bombola said. “You see her determination in her work. It’s bright and happy. She focuses on beauty.”
When Bombola is told she is generous to help Wong, she offers a correction: “She’s helped me far more than I’ve helped her.”
In a few weeks, Priscilla Wong will turn 24. She plans on enhancing her craft, on adding depth and letting her imagination take her forward even if her body cannot. She has bad days, she’s had a hard year of respiratory problems, but she remains joyful. She always has been.
As a sophomore in high school, she wrote a book for one of her classes and called it “Ojala,” the Spanish word for “hopefully.” In her story, a little girl in a wheelchair is crying when an angel comes upon her.
“Ojala, I could help you,” the angel says to the girl.
“I’d like to play with other kids,” the child responds. “I’d like to run and play. I’d love to ride a bike. I’d love to swim in a pool. I’d love to ride a roller coaster. I’d love to ice skate with my sister. I’d love to have lots of friends.”
The angel replies to her: “Ojala, one day all those things will come true. But for today, be happy with what you can do.”
Priscilla Wong is happy. She paints for her life. It is the legacy of a spirit that will not be confined.