KUALA LUMPUR - Being terminally ill or suffering from rare diseases may prove devastating for certain people but the setbacks may also inspire some patients to strive for a better life.
Yang Mee Eng - the sister of famous Malaysian singer in the 90s, Yang Wei Han - was diagnosed with Spina Bifida that causes body part deformations at birth.
With exceptional willpower, however, she is able to overcome congenital incontinence and difficulties caused by atrophy in both of her legs.
Despite having been suffering from the disease since young, Mee Eng doesn't see herself as a disabled person but instead, self-reliance is heavily emphasized by her.
She refuses to use a wheelchair, a walking stick or facilities specially provided to aid disabled people.
Even when she has to park her car, she makes it a point not to park at handicapped parking space.
Besides loving to dress up, Mei-yan also "modifies" her own shoes.
She cuts paper slippers provided by hotels into shoe pads, which are then inserted into her shoes.
In this way, she is able to feel the joy of being able to wear various types of shoes.
Say "no" to handicapped facilities
41-year-old Mee Eng currently works as a senior executive (Creative Multimedia Strategy and Policy) at Multimedia Development Corporation (MDeC), a unit of the MSC Malaysia. Also the president of Spina Bifida Association Malaysia (SIBIAM), Mee Eng is one of very few Malaysians living with the condition but who are still able to move around freely and not severely affected by the disease.
Except for plane boarding and disembarking, Mee Eng doesn't need the use of a wheelchair as visiting toilet, getting onto a taxi and driving a car all by herself are something she is able to do, she told Guang Ming Daily.
Not only that, she has also given up all the privileges and benefits extended to OKU (disabled) card holders. "There're others who need these services and facilities more than I do," she said.
When Mee Eng drove the reporter and her colleagues to a restaurant, the reporter discovered that the handicapped labels were nowhere to be found on her car.
In the mean time, she has never used the parking space specially provided to handicapped people.
"Having never thought of occupying the disabled parking lots, I'm also reluctant to display the handicapped signs on my car because I feel embarrassed doing so. I'm not looking down on handicapped people. I'm not willing to use those facilities because I can move around freely," she said.
"I can still walk, let the needy group use them. Only at times under compelling circumstances, I will use the facilities for disabled people," she said.
In addition, she doesn't like using aiding equipment like wheelchair and crutches. However, an operation five years ago left her with no choice but to use crutches for one year.
Superior not treating her like a disabled person
Though Mee Eng was born a disabled person, she never feels sorry for herself and gives up on her life.
Instead, she studied hard and paved the way to a wonderful life she now has.
Following her graduation from a university in 1993, she worked in the media line and had since taken up the roles of intern reporter at a state-run TV station, director, programme director, photographer, producer and etc.
Her works were mostly in the form of documentary.
Today, she is holding an important position in the ever competitive job market despite all the setbacks she has had suffered.
Pursuing doctoral degree in Media Management
My superiors and colleague do not see me as a handicapped person. When I was having my industrial training, my superior even assigned me to cover events involving difficult journeys. Of course, I was willing to take on the challenge because I feel I'm no different from others," she said.
Since Mee Eng joined the workforce, all her friends, colleagues or superiors have never looked down on her. "I'm very grateful that they've been taking good care of me," she quipped.
Within the 12 years that she is attached to the Creative Multimedia Strategy and Policy Department, she has made working trips to Asia Pacific countries, including Thailand, Taiwan, Hong Kong, China, Indonesia, the Philippines and other countries.
The trips enable her to meet with creative teams based overseas and work on collaboration deals and new market explorations.
Having earned her bachelor's degree and master's degree in Mass Communication from Universiti Kebangsaan Malaysia, she is currently pursuing a doctoral degree in Media Management.
Mother: Feeling sad when buying shoes with her
According to Lin Ai-qing, Mee Eng's 71-year-old mother, though she is comforted by the fact that individual efforts have enabled Mee Eng to live a fulfilling life, she always has a sense of guilt for her daughter's disability.
"Whenever I think of her condition which requires her to be repeatedly admitted to hospital for surgeries since young, I feel a deep sense of guilt. I'm heartbroken every time I see her walking with a limp. I'm even sadder when buying shoes with her," Lin said.
Learning to live like an able-bodied person since young
"It never came across my mind that Mee Eng would be a child with disability. When she was young, I thought she only moved a bit slower than other toddlers. Years had passed but Mee Eng could only crawl on the floor. She stood up for the first time at four, much to our relief," Lin added.
"Mee Eng had not received any pre-school education but just like other normal kids, she managed to complete her primary and secondary education. I'm very pleased that she has not only successfully booked a place in university but she is also studying for her doctorate now," Lin said.
Though many sufferers of Spina Bifida face the problem of incontinence, Mee Eng was not affected by it because she has been trained to live like a normal person since an early age.
"She continued to wet the bed after growing up and hence, receiving beating and scolding was part and parcel of her life. Perhaps because of that, she developed the habit of visiting toilet on her own," Lin said.
A body full of scars after more than 30 surgeries
Born at the Lumut General Hospital in Perak, Mee Eng's disability was diagnosed when she was nine months old.
As advanced technology had not been introduced at that time, many doctors couldn't figure out the root cause of her condition or had misdiagnosed it.
As a result, she was forced to go under the knife for many times, and among the operations performed on her included surgical mistakes.
Since young, she was a regular patient at several government and private hospitals in Lumut, Sitiawan, Ipoh, Penang, Selangor and Kuala Lumpur.
Ever since she joined the workforce, she jokingly claimed that her status had been "upgraded" because she could now choose to stay in expensive private hospitals in Sunway, Damansara, Subang and others.
To date, Mee Eng has received more than 30 minor or major surgeries.
Averagely, she is operated on once in every two years but sometimes, having two or three surgeries within a year is inevitable.
That's why she has numerous scars on her body, with some even measuring one or two inches in depth.
Being hospitalized on a regular basis
"If my wounds fail to heal, they will cause inflammation, pus formation and etc. Each time, I have to endure the pain caused by wound cleaning. My house is being equipped with all types of medical products. Cleaning and dressing wounds are something I've gotten used to," Mee Eng said.
She is very grateful that her superiors have been throwing their full support behind her and understand that she needs to be hospitalized on a regular basis to receive surgeries.
Sometimes, her stay in hospital lasts for one to two months.
"Some hospitals are exclusively equipped with medical facilities that fulfill my needs. They are like my second home. I still remember when I was young, I would automatically pack my clothes in preparation to check into a hospital during school holidays. My mom would also prepare fried peanuts, anchovy and soy sauce so that I could eat with porridge in hospital," she said.
Having a lively personality, Mee Eng loves joking around with doctors, nurses and even patients.
She also enjoys good interpersonal relationships with others.
"Perhaps, everything has been arranged by God. I was given a different life but I've never felt lonely," she said.
The need to wear expensive corrective shoes
Even people with disabily have the rights to be beautiful.
Just like other women, Mee Eng loves dressing up nicely and going for shopping trips.
Due to atrophy in both of her legs, she is required to wear shoes which are custom-made but in order to make it possible for her to wear different kinds of trendy shoes, she "modifies" them herself by inserting shoe pads made from paper slippers into regular shoes.
Self-made shoes are more comfortable
"I'm not blindly after branded items but my condition requires me to purchase custom-made corrective shoes that cost between RM600 (S$240) and RM700 each pair. It's frustrating that these expensive shoes are neither beautiful nor comfortable. On the contrary, my self-made shoes offer more comfort," she said.
Mee Eng removed her boots to show reporter the shoe pads.
"Look, these pads are made from paper slippers provided by hotels. They are good in quality and comfortable to wear. Moreover, they are free," she said.
"I've modified all my shoes and during the modification process, I further get to know what I need. The doctors mustn't know about this because these modified shoes have no corrective effects on my legs," she said.
Besides dressing up, Mee Eng also loves various kinds of sports.
She is particularly good at swimming, table tennis and hockey and having represented her primary and secondary schools in sporting events is something she is always proud of.
Remains friends with her ex-husband after divorce
Mee Eng was previously married to an Indian man of mixed parentage.
The marriage ended after 13 years because there were huge differences in their backgrounds and cultures.
On top of that, not everyone is able to live with disabled people.
"I met my ex-husband when I was working at a TV station. At that time, he was a reporter at a publication. We got married after dating for a year. My former in-laws were very good to me, especially my ex-mother-in-law, as she was always there for me when I had my surgeries," she said.
However, the couple decided to go their separate ways after the ex-mother-in-law died of cancer.
"I can only say that it's easy to get along with others but not as easy to live under one roof with them. My ex-husband had previously spent eight years in the U.S and there was a huge gap between our cultures, backgrounds and traditions. I eventually had to let go of our marriage. Though he had moved to Australia and started a new family, we remain friends and still contact each other regularly," she said.
Loss of balance which subsequently leads to a fall happens regularly because Mee Eng has a pair of bent legs.
Averagely, she has a minor fall within a week and a major one in a month. For her, taking a tumble is part of her life.
"Does falling down hurt? Doesn't going under the knife hurt much more? I can still walk and move, drive a car and do things that I like. So the pain of taking a fall is nothing," she said.
Know more about Spina Bifida
Spina Bifida is a congenital disease and it occurs in one to two of every 1,000 child births.
The condition can be correctly defined as Split Spine, which means the spinal cord does not fully develop.
Spina Bifida can be divided into several categories, namely Spina Bifida Occulta, Meningocele and Meningomyelocele.
Its patients may experience urinary incontinence and partial or complete weakness in hip or legs.
There may also be a partial or entire loss of sensation in certain body parts or cause paralysis in the legs.
Many have mistaken Spina Bifida for Polio, causing patients to miss the golden opportunity to get better due to a delay in receiving treatment.
Mee Eng said, she would not have to walk with a limp or fall down frequently due to a loss of balance if the doctors managed to perform corrective surgery on her legs earlier on.
"The establishment of SIBIAM can bring all the Spina Bifida patients together and raise the awareness on the disease. In the meantime, through the association, patients or their families can get to know the best way to treat the disease or reduce misdiagnosis," she said.