我自有的生活 – 床並不是實在的監獄 My Special Life - Bed’s no virtual prison

現已26歲的Goh Puay Hwoon 小姐剛成立一個網上出售衣服及飾物店鋪，自學做生意。她花了一生去學習怎樣靠自己做事。

雖然她的家人只會說普通話，而她又沒有花過一天上學去，她自己學習了讀寫中英文。

她一生都要花在醫院裡且困在她的床上。

Puay Hwoon 患上一種名為脊髓肌肉萎縮症的神經肌肉疾病。 因用作控制肌肉的神經沒法正常運作而導致其肌肉萎縮。

她以往能獨立坐起來，但這七年來因其健康狀況轉壞而不能再坐起來。

致命的肺部感染是一直以來的困擾。

她的體重在20kg間迴旋著，她現在即使於狀態好的日子都沒法抬起頭來。但是，她的聲音是生氣勃勃、雙眼炯炯帶著智慧。

「我不能外出，我不能做很多的事。」她說。 「但我有很多朋友，我正在創立一門生意。」

電腦的滑鼠墊安放在她的肚子上正如她躺著而身體沒法彈動，只憑一按，她就能觸到世界。她購入存貨，收取帳單及安排速遞─全都由她在床上處理。她的兩個網站 ─vgfashionhouse.blogspot.com 或出售二手貨之 vgprettyhouse.blogspot.com ─自她初成立致今已擁有一些顧客。

還有需要聯絡的供應商、台灣的筆友、網上遊戲及論壇、以及需照料的虛疑寵物。

另外，她還要看香港及台灣的電視劇、要讀的報紙及細聽她所喜愛的劉德華的歌曲。以及，欣賞由地板堆積至天花、佔據著她三房單位其中一間睡房之牆壁的超過40個芭比娃娃珍藏。

當她的手因操作那滑鼠而感到疲倦時，她的母親 Ivy Yong女士會接替她。

「她教我怎樣上網。」這從不遠離她女兒身邊、笑容滿面的52歲女士說著。

Yong女士的姊妹帶來購自網上的食物及生活用品。母親與女兒除了到訪醫院外，一直都足不出戶。然而，已離婚且十年前為照顧女兒而放棄工作的Yong女士仍笑容滿面。 在國際大學的醫院裡，那些照料了Puay Hwoon十多年的醫生護士視這對母女如親人般看待。Yong女士還會輔導其他病人的家長。

「我告訴他們，你要接受上天所給予你的，而且你需要樂觀面對，否則對你的孩子們沒有益處。」她用普通話說。

除了肺部感染及暫住在心切治療部外，她仍要每三個月到醫院更換她的食喉。因她已再不能吞嚥，她過去三年來的僅一食物就是直接由喉管輸進到胃的奶。

因Yong女士需每天餵她的女兒吃七餐，令這對母女每一晚的睡眠都不超過四至五小時。

Yong女士睡在女兒床邊的床墊，利用床板及搬運供孩童玩樂的小水盤到她的床上，給她洗澡。

這位個子矮小的女士每天為女兒做數次物理治療的運動，甚至在有需要的情況下把她挽在懷裡。

她們靈活理財，並得到她那30歲任職電腦技術員的兄弟支持，以及得到社會人士及組織的捐贈善款、醫藥用品以及醫療器材，例如她的呼吸器。

「我想在此感謝所有曾經幫助我的人。」Puay Hwoon說。

「當中，有很多人值得答謝的。」她說。

「我有很多朋友，超過一百位，他們是醫生、醫科學生以及教會的朋友。」

他們每一年都擠進她家裡為她開辦生日會，給她一個形狀如洋娃娃般的精美蛋糕。她雖然不能吃一口蛋糕，但她很喜歡看著這漂亮的蛋糕。 「我從來都不愛吃東西。」她說。

至於下一個生晨，她已經有三個願望　─　「保持健康、我的生意上軌道，以及能親身見劉德華。」

The Straits Times 2006年10月11日

At 26, Miss Goh Puay Hwoon has taught herself to do business online, and has just set up an e-shop selling clothing and jewellery. She has spent her life learning to do things on her own.

As a child, she picked up reading and writing in both English and Chinese, although her family spoke only Mandarin and she did not spend a day in school.

A lifetime of hospital stays and being confined to her bed meant that she had to.

Puay Hwoon suffers from a neuromuscular disease called spinal muscular atrophy. Her muscles have wasted away because the nerves controlling them do not work properly.

She used to be able to sit on her own, but not for the last seven years as her condition took its toll.

Life-threatening chest infections are a constant worry.

Tipping the scales at 20kg, she is now too weak to lift her head, even on a good day. But her voice is spirited and her eyes shine with intelligence. “I cannot go out, I cannot do a lot of things,” she said. “But I have a lot of friends, and I’m setting up a business.”

Mousepad resting on her stomach as she lies immobile, the world is just a click away. She chooses stocks, collects payments and gets deliveries done – all from her bed. She has two sites – vgfashionhouse.blogspot.com or vgprettyhouse.blogspot.com for second-hand products – and already a handful of customers in the month since she set them up.

Then there are suppliers to talk to, pen-pals in Taiwan, online games and chats and virtual pets to take care of.

There are Hong Kong and Taiwan television dramas to watch, newspaper to read, and music by her heartthrob Andy Lau. And there’s her Barbie doll collection to enjoy- one wall of her bed room in her three-room flat in the east is packed floor to ceiling with over 40 of them.

When her hand gets too tried manoeuvring the mouse, her mother, Madam Ivy Yong, takes over.

“She taught me how to use the Internet,” said the cheerful 52-year-old, who is never far from her daughter’s side.

Madam Yong’s sister brings food over and groceries are brought online. Mother and daughter never leave the house, except to go to the hospital.

But Madam Yong, a divorce who quit work 10 years ago to take care of her daughter, is full of laughter. At the National University Hospital, where the pair are like family members to the paediatric doctors and nurses who have treated Puay Hwoon for decades, she counsels other parents.

“I tell them, you need to accept what’s handed to you, and you’ve got to be optimistic or it won’t do your children any good,” she said in Mandarin.

Chest infection and stays in the intensive-care unit aside, hospital visits are a must every three months, for Puay Hwoon to change her feeding tube.

Since she is no longer able to swallow, her only food for the past three years has been milk, fed directly to her stomach through a tube.

Each night’s sleep lasts no longer than four or five hours for mother and daughter, as Madam Yong has to feed her seven times a day.

Madam Yong sleeps on a mattress beside her daughter’s bed, helps her with a bed pan and carries an inflatable child’s pool onto the bed to bathe her.

The pint-size woman does physiotherapy exercises on her daughter several times a day, and even carries her in her arms when necessary.

Money-wise, they are supported by Puay Hwoon’s brother, 30, a computer technician, and helped by individuals and organizations that donate money, medicine and equipment, such as her breathing device.

Said Puay Hwoon: “I’d really like to thank all the people who have helped me.”

There is much to be thankful for, she said.

“I have so many friends, more than a hundred. Doctors, medical students, friends from church.”

They crowd into the flat for her birthday party every year, armed with a fancy cake in the shape of a doll, which she likes to look at, even though she can’t take a slice. “I never liked to eat, I don’t miss food,” she said.

For her next birthday, she already has three wishes: “To keep healthy, and to see my business take off.

“And to see Andy Lau in person.”

The Straits Times October 11, 2006