Scores of books line the shelves in Priscilla Wong’s bedroom. Jodi Piccoult, Lewis Carroll, Elizabeth Haynes, C.S. Lewis. Crowded together, hard covers and paperbacks hug one another like old friends.
To the side of her specialized bed sits a stand. It’s here that the books perch when Wong, 22, of Sacramento wants to delve into a Stephen King standard or pore through texts and course materials for the paralegal program at UC Davis, from which she recently graduated with a bachelor’s degree in women and gender studies.
But unlike other recent college grads, Wong never reads alone. Her mother, grandmother or an attendant must sit beside her and turn the pages.
Wong was born with nemaline rod myopathy, a rare form of muscular dystrophy, and has no use of her body apart from her tongue and big toe.
She maneuvers through daily life in her power wheelchair, refusing to strive for anything less than independence, and in so many avenues of her life, success.
Wong excelled throughout high school and college, which she attended primarily through scholarships. She also wrote for her campus newspaper.
Her grandmother, Maria Tafoya, served as her typist for volumes of term papers.
“As she dictated to me, I would use my computer while she used hers, and we’d accomplish what she had to complete,” Tafoya said. “Her perseverance and attentiveness to the task at hand never failed … she has been a great inspiration to me.”
Tafoya has asked Book of Dreams readers to make reading easier for Wong by helping purchase an electronic page turner for her.
Wong was 13 months old when doctors were able to diagnose her with the disease. Her mother, Lisa Gutierrez, was told children with nemaline rod myopathy typically don’t live past age 10.
When Wong was 10, her health began to fail. She couldn’t eat and was hospitalized in San Francisco for 21 days, and doctors advised Gutierrez not to bring her daughter home, despite Wong’s pleadings. Her frail body had dwindled to 65 pounds.
“I just remember thinking, ‘If she’s going to go, she’s going to go in her own home,’” Gutierrez said.
Wong made it through a surgery to insert a feeding tube and hasn’t needed to be hospitalized since 2002.
Now, she dreams of going to law school, living in her own apartment – and turning her own pages as she reads at night.
“If I didn’t have to rely on others to turn my pages, it would let me be more independent,” Wong said.
Small gadget. Major freedom.