Bone problems, but her spirit is strong
Plucky woman with rare disease lives alone, works and is determined to be independent
She was almost knocked down by a cyclist riding on the pavement two weeks ago.
The cyclist had frantically rung his bell as he approached Ms Noor Faezah Abdullah from behind and swerved his bicycle at the last minute to avoid her.
He then shouted at a visibly-stunned Ms Noor and rode off.
The experience left her raging with frustration.
She could hardly be blamed for the close call.
He had been riding on the pavement meant for pedestrians.
Also, Ms Noor, 37, is deaf.
The deafness is the result of an extremely rare condition called Camurati-Engelmann, a disease characterised by heavily-thickened bones.
Only about 300 people worldwide have the disease.
"I wanted to scold him, but I couldn't," Ms Noor told The New Paper on Tuesday.
"I wanted to explain that I was deaf, but I was too angry to do so. The pavement is not meant for people to cycle fast."
She first learnt she was "different" when she was three years old.
While the other children from her village in Lorong Renjong near Buangkok played "police-and-thief" or climbed trees, Ms Noor could only sit and watch.
Her waddling gait made her too slow to catch up with the other children.
By age 17, she had lost her hearing. An abnormal bone growth ruptured her eardrums.
Three years later, she was diagnosed with Camurati-Engelmann disease.
ANGER AT FIRST
Ms Noor, who has an office administration diploma, added: "At first, I was angry. Out of so many people, why me? The disease affects my whole body, not just one part."
Her biggest fear now is that the abnormal bone growth could put pressure on the nerves in her eyes and lead to blindness.
Ms Noor, who has been working as a data entry clerk at non-profit organisation Bizlink Centre for the past 12 years, is determined to lead an independent life.
She only hopes people are more sensitive to those with disabilities.
Ms Noor, who is single and lives alone in a one-room Geylang Bahru rental flat, said: "I can deal with people staring or kids pointing fingers at me.
"But sometimes it hurts. Maybe there should be more awareness for people with disabilities."
Her illness has forced her to adapt.
She communicates using pen and paper. For this interview, she read this reporter's questions and replied in a slightly muffled manner.
But she is quick when it comes to sending SMS text messages.
Living alone means she has to sweep and mop the floor, cook and do the laundry herself.
She would call her only sibling - her 47-year-old brother - or her nephew only when there is a problem like opening the fan to clean the blades or if an electrical appliance fails.
Her 80-year-old mother lives with Ms Noor's brother. Her mother had single-handedly taken care of Ms Noor when she was bed-ridden for eight months, 17 years ago because of nerve inflammation throughout her body.
Ms Noor said: "My mother would always say, 'It's okay - you're not normal, but you're better than some others. Learn to be independent. So when I'm not around any more, you'll know what to do.'"
But being independent is not easy.
Ms Noor avoids crowded buses as she fears being pushed by passengers. A fall could easily fracture her brittle bones.
Even alighting from a bus that has stopped more than 1m from the kerb presents a problem for Ms Noor because the stretch to the bus stop hurts her joints and legs.
Fortunately, she takes company transport most of the time. Work keeps her occupied and gives her a sense of purpose.
She has been saving a portion of her $450 monthly salary and the $130 she gets from the Islamic Religious Council of Singapore (Muis).
If her illness robs her of the ability to walk, the savings will pay for her stay at a nursing home.
For now, her quarterly eye check-ups are paid for by Medifund, a government fund to help needy Singaporeans.
Colleagues and friends help brighten her day and they occasionally invite her to their homes for meals.
One colleague, Mr Lee Choon Seng, explained that every one in the office is "equal" as Bizlink Centre hires people with disabilities to do workshop or data entry work.
Mr Lee, 54, said: "We all have disabilities. So we treat and look at each other as though we're normal."
MUTUAL RESPECT AND MORE UNDERSTANDING
Deafness is often regarded as an "invisible" disability.
So the close shave that Ms Noor Faezah Abdullah had with the cyclist is not unusual.
Deaf people have been injured in collisions when they did not hear such bicycles approaching or the warning bell, said Mr Alvan Yap, deputy director of the Singapore Association for the Deaf.
Mr Yap said: "Cases of misunderstandings between deaf people and (those who can hear) usually stem from the latter's mistaken perception that the deaf person is ignoring them.
"In such cases, the deaf person is often on the receiving end of the other person's frustration or anger."
Could the issue really be about mutual respect? Both the abled and disabled should watch out for each other.
While there are horror stories of disabled persons being mistreated, Dr William Wan, general secretary of the Singapore Kindness Movement, said he can recall instances of "spontaneous kindness".
One example stands out in his mind.
A few years ago, Dr Wan saw a dog belonging to blind woman defecating on a grass patch.
A smartly-dressed woman, who was heading to her office that morning, went up to the woman and helped to pick up the dog's poo without hesitation.
Dr Wan said: "Part of being human is to be able to relate to people who are physically or intellectually challenged. To me, it is fundamental to share the joys and sorrows with others in society."
And when you help people with disabilities, do it sincerely and not condescendingly.
Mr Yap added: "It is a matter of basic courtesy and civility. It is rude to stare at someone who wears a hearing aid, or uses sign language, or uses a wheelchair, and so on.
"People with disabilities may need to be accommodated at times... But these are mostly about having a little extra patience and being a bit more understanding."
ONLY ONE CASE ON RECORD HERE, IN THE 1970S
Ms Noor Faezah Abdullah's illness - Camurati-Engelmann - is so rare that medical specialists believe there are only between 200 and 300 people worldwide who suffer from this incurable disease.
According to the US National Library of Medicine, sufferers experience increased bone density "particularly affecting the long bones of the arms and legs".
Calling the disease "extremely rare", Dr Siow Hua Ming, a consultant orthopaedic surgeon from Providence Orthopaedics, said: "There has been one report of a single case in the Journal of the Singapore Paediatric Society in 1972.
"As far as I am aware, that is the only documented case in Singapore."
Two other bone specialists The New Paper spoke to said not much is known about the illness locally
Some of the symptoms include severe pain in the extremities, a waddling gait, joint stiffness, muscle weakness and tiredness.
There may also be vision and hearing problems, and facial paralysis, said Dr Siow.
He added: "They can be treated with steroids to relieve the symptoms, although this is not a cure.
"Painkillers can help relieve the pain and occasionally surgery is used to straighten any deformed bones."
At first, I was angry. Out of so many people, why me?
- Ms Noor Faezah Abdullah