'My Whole World Was That Bed'


2015.09.04
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china-hk-josy-chow-aug-2015.jpg Josy Chow in Hong Kong, Aug. 26, 2015.
RFA

Aspiring Hong Kong university student Josy Chow is paralyzed by spinal muscular atrophy, with the exception of some facial muscles and two fingers on her right hand.

Fed through a tube three times a day, Chow, 21, uses a specially adapted mouse-pad to study, and recently finished high school in her home city of Hong Kong.

Chow, who spent the first 16 years of her life in a hospital bed, recently spoke to RFA's Cantonese Service about the long and tortuous path she took to get this far.

"I used to see a lot of the other patients in the beds next to me getting out of hospital," she said. "Even the ones in wheelchairs got discharged."

"I used to feel quite defeated, and couldn't understand why I couldn't do that too."

Some people were less lucky than she, however, and this led Chow to an early understanding of the nature of life and death.

"Some of them were like me, and had been in hospital for many years, but one day they would just be gone," she said.

"That's when I became fully aware of what death was."

Chow didn't completely understand the extent of her disability until her awareness grew in childhood.

"Other kids would start crawling, then walking, but not me. My brother would stand next to my bed and talk to me every day," she said.

"My whole world was that bed."

Feeling 'part of the world'

Chow's condition deteriorated later in childhood, leaving her with just two fingers under her control.

"I can experience a lot of different things, like what other people must feel like when they're painting," Chow said. "It's precisely these feelings that make me feel like I'm a part of the world."

"Life is a journey, and maybe you won't be ready for a lot of things that happen, or maybe your capabilities will be limited," she said. "But you still have a lot of options; you can choose your work, your interests; there's a lot of variety."

Chow, who is a committed Catholic, said she isn't worried about the future.

"I'm not in the least concerned, and not a bit afraid," she said. "Why would I be? Perhaps it's my faith."

"I don't think it'll be too bad after I'm dead ... as long as I'm not in hell, I'll be able to walk, and move my arms and legs," Chow said.

"That's why it doesn't seem frightening to me."

Reported by Liu Yun for RFA's Cantonese Service. Translated and written in English by Luisetta Mudie.

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