SINGAPORE – For Ms Vivian Goh, everyday tasks such as eating, moving around or brushing one’s teeth are beyond her grasp.
But through her eyes and speech, she connects with the world, runs a business and has also written a book about her story.
The 41-year-old has been bedridden since she was 19 due to a neuromuscular disease, but her medical woes go back to when she was seven months old, when she was unable to sit unassisted.
She was diagnosed with spinal muscular atrophy when she was around 2½ years old.
But Ms Goh has remained cheerful over the years, and currently runs her own e-commerce website and recently even published her book.
Titled Bed-ridden And Unstoppable, the book, out in December last year, details her life since birth.
At 18 months old, Ms Goh suffered a very high fever, the first of many that would see her in and out of hospital constantly.
Her condition worsened to the point where doctors had predicted she would not be able to live past her 12th birthday.
But live she did, even if the early loss of her muscles meant she was never able to walk, she slowly lost her hand functions as her muscles atrophied and she was eventually unable to sit up.
When The Straits Times visited Ms Goh in her flat in Bedok on April 25, she was her usual upbeat and energetic self.
She said: “There is nothing I can do to change my circumstances and being sad about it does not help the situation. So why not choose to be happy?”
Ms Goh is able to speak and uses a laptop to communicate online. She surfs the Net and replies to messages with an eye-driven communication device called Eyegaze. The sensor uses infrared radiation to detect her eye movements across an on-screen keyboard.
She has dedicated her book to her mother, Ms Ivy Yong, 68, who raised her single-handedly and is still her main caretaker.
Her mother, who is not working, is proud of her daughter.
She said: “I have been taking care of Vivian since she was young and she has always been in and out of hospital. To see her publish her own book and also teach me how to use the computer and mobile phone fills my heart with joy.
“Vivian also no longer needs to go in and out of hospital anymore as her condition has stabilised.”
Currently, Ms Goh relies on being tube-fed as she does not have the ability to chew. She is fed milk seven times a day.