Thursday, September 19

The indomitable spirit of a disabled couple

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Elaine and Norwis at the hanging bridge in Taman Awam, Miri, where they will take a photo together every two years on their wedding anniversary.

TWO wheelchair users – one from Miri and the other from Terengganu – met in Kuala Lumpur and became partners for life.

After a period of casual friendship, their relationship blossomed into love and as a ‘symbiotic couple’, the disabled husband and wife have struck a happy balance by working together to make their marriage work.

This is the story of Elaine and Norwis.

Elaine has Cerebral Palsy (CP), while her husband Norwis has Spinal Cord Injury (SCI). A harsh stroke of fate made them wheelchair users for life.

Elaine explained the more accurate name for her condition is Spastic Triplegia as three of her limbs are affected – hence the prefix Tri in Triplegia.

She said as far as she knows, her CP was caused by very high fever when she was 14 months old. In the middle of one night, she woke up crying frantically. When her mum switched on the lights, she was horrified to see her baby blue all over.

Elaine’s panic-stricken parents rushed her to hospital in her hometown in Kuala Terengganu  but the doctor on-call at the Emergency Unit was not immediately available. In the meantime, the nurses tried administering oxygen to Elaine, who kept crying and pushing the oxygen mask away.

When the doctor arrived half an hour later, Elaine had calmed down a bit. Due to delayed treatment, she was diagnosed with meningitis, an inflammation of the membranes surrounding the brain and spinal cord. At least that’s what Elaine now suspects.

She said she grew up facing the frustration of being unable to do things kids of her age took for granted. That upset her and she frequently threw tantrums – and things around the house.

“But thank God, my parents were very patient with and supportive of me. Over time, they made me realise having the courage to face my situation with self-confidence was more important than worrying about how people looked at me,” she said.

A family photo taken during their wedding.

She related an incident when she was about five and the standard wheelchair was still too big for her.

“My parents used a pram to push me around when we went out. There was this woman, who, after staring at me for a while, proceeded to ask my mum why she allowed me to be so lazy that she had to push me around in a pram like a baby.

“My mum explained my situation and although the woman looked embarrassed, she just walked away without even an apology.

“Fearing I might be hurt, my mum quickly told me the woman just misunderstood the situation and I shouldn’t worry about what she said,” she said.

Her mother also told her there would be more such encounters, including with people who wouldn’t say anything but just stare.

“She advised me to respond with my sweetest smile and if I were lucky, I would get a sweet smile back.

“I have been doing that ever since. Ha, ha, it works most of the times,” she told thesundaypost.

Elaine said she was generally well treated in school but there was this incident where a Primary 1 classmate would steal her stationery and conned Elaine into giving her yoghurt drink and chocolate milk whenever the weekly delivery van came to the school.

She didn’t know how to say no and all she could do was to tell her parents, who managed to solve the problem after that.

She added that her husband Norwis often gave disability awareness talks when they were still living in the peninsula.

“He wants as many people as possible to know what disabled people like us really want from the public is understanding, acceptance, and compromise.

“Misconceptions can lead to a lot of frustrations, awkward moments, and even depression among the disabled.”

 

Elaine and Norwis on their wedding day.

Choices and decisions

Elaine noted that people tended to make choices or decisions for them and though the intention was good, she thought it would still be best for them to make up their own minds.

“At parties or wedding receptions, some friends would offer to take food for us but forget to ask what we wanted.

“They just went off and returned with plates filled with all kinds of food. They took a bit of everything but then, we might not want to eat many of the food items on our plates. We felt guilty for leaving so much food uneaten.”

Elaine said she and Norwis would be most appreciative if people could first ask if they needed any help, and if so, what kind, instead of going ahead to do what they thought was good for them.

She said they were always grateful for the help they got but very often, it was not for what they really needed.

Citing an example of what could go wrong if people did not consult a disabled person before offering help, she said one Saturday, she and Norwis went to the Kuala Lumpur City Centre (KLCC) for their usual appointment.

The elevator was out of order and while they were still deciding whether or not to take the escalator, a stranger offered to help them up the moving staircase.

Although they declined the offer, the person insisted on helping. He just put Elaine and the wheelchair on the escalator without giving her a chance to tell him what to do when they reached the top.

Then what she feared most happened. Her wheelchair got stuck at the top of the stairs, pushing the helper forward and, in turn, causing Elaine to fall forward.

Too shocked to know what to do next, the person just apologised and walked off.

Elaine said it was common to regard the disabled as being unable to make decisions for themselves and had to be helped.

“This is the general misperception about the handicapped,” she noted.

 

Elaine and Norwis during a holiday.

Meeting hubby

Asked how she met her husband, Elaine let out a laugh, “That’s long story but I’ll make it brief.”

She was from Kuala Terengganu but grew up in Kuala Lumpur while Norwis is from Miri. They met at a non-governmental organisation (NGO) called Beautiful Gate (BG).

Norwis was a trainee at BG where he stayed and learned to be independent. He was also preparing for his SPM after missing it when he was 17.

Elaine used to travel to and from BG as a tutor. One of her students was Norwis’ roommate.

Norwis and the roommate often chatted about their day. Sometimes, the roommate would mention his teacher Elaine.

Out of curiosity, Norwis would quietly go and take a look at the classroom where Elaine was teaching.

Although they got acquainted, they rarely had the chance to talk because whenever they saw each other, one would be busy teaching while the other would be rushing to tuition class.

Moreover, Elaine was facing a personal problem at the time. She said it was at such a low moment in her life that Norwis came into “my lonely world – out of nowhere”.

 

Working routine

She said the office van would pick her up earlier from her home to BG. And from there, it would send Norwis and his classmates to their class.

The routine was such that when Elaine got off the van, Norwis would get on. It was the reverse after school.

One day, Norwis went into Elaine’s class and casually said ‘Hi.’

By coincidence, Elaine, at that very moment, had to make an urgent call to a doctor regarding one of her students’ medication but did not have credit in her phone. So, she decided to borrow Norwis’ phone.

“Then suddenly a naughty thought came to mind,” Elaine said with a giggle.

“I made a call to my own phone with his phone, and with that recorded info, I could get to know about him on Friendster and MSN. It wasn’t the WhatsApp era yet.

“We got to know each other better, chatting almost every other day on MSN. Although we were already quite close, going out for lunch or to movies together, nothing really romantic happened.

“At that time, I was still trying to sort out my personal problem. It was a heart-breaking situation but I had to think for my own future. Three months later, on Norwis’ birthday, I gave him a YES and it has been 11 years since.”

Elaine said she dated Norwis for four years before marrying him and they are now in their seventh year of marriage.

 

Proposal by Norwis

Recalling how Norwis proposed to her, she said at that time, both of them were transferred to Sitiawan where they ran one of BG branches. She was on leave for a few days and had gone back to her parents’ home in PJ while he was in Sitiawan.

It was on the day Norwis was supposed to pick Elaine up that he dropped her this message on MSN — “Get ready. I’m leaving now, arriving in three hours’ time. Tell your parents I wanna meet them to propose marriage.”

Elaine thought Norwis was just kidding but it turned out he meant what he said. Some 10 months later, they were married in church in May 2012.

Elaine said the day she was helped down the aisle was the most memorable of her life. She never dreamed it could happen to her.

“Being a disabled person, how could I dare think of marriage? I couldn’t even fully take care of myself, let alone someone else.

“I learned to live one day at a time. I also realised people shouldn’t jump into marriage. It’s a new kind of life with lots of challenges and responsibilities.”

Elaine said after knowing Norwis, her horizons broadened significantly. She was previously just a homely girl who went to work and to weekend church activities. It was only after knowing Norwis that she got to visit the Kuala Lumpur City Centre for the first time in her life.

She said to her, Norwis is not only a husband but also a pillar of support.

He has leadership qualities and just a month or two into their courtship, he was selected as the fellowship leader at BG. The executive director tasked him with organising a day trip for BG members. They visited the Eye of Malaysia at Taman Titiwangsa. It was a memorable outing.

 

Crippling accident

Elaine said Norwis got his SCI when he injured the fifth and sixth cervical bones of his spinal cord in an accident 21 years ago when he was 17.

According to her, Norwis went to Lambir National Park in Miri with two friends. He was playing at the foot of the waterfall before jumping twice into the pool.

He couldn’t recall exactly how he made the second jump but what he could remember clearly after that was he couldn’t move no matter how hard he tried.

When he tried shouting for help, water rushed into his mouth. So he stopped struggling to save his breath.

He remembered asking God whether his time was up. Moments later, while still under water, he heard footsteps coming towards him and felt God had answered his prayer “by sending an angel” to rescue him.

It was one of his friends who had waded in to pull him out of the water. Norwis was immobilised and his two friends panicked and did not know what to do.

Despite his serious condition, Norwis still had the presence of mind to ask his friends to find some planks for making a stretcher to carry him out of the place and call for an ambulance.

Norwis spent six months in ICU. He had broken his cervical bone and a piece of metal had to be inserted in his neck area.

He spent seven years recuperating at home with the help of his parents. It was long convalescence and he felt he was wasting his life. Besides, he didn’t want to continue burdening his parents.

So he started researching on rehabilitation which eventually led to one of his church friends and a counselling teacher encouraging him to go to BG where he would be taught to be independent.

Elaine admitted she would not be able to bear a child because of a fibroid in her uterus. In 2007, she went for surgery to remove the growth. Three years later, the fibroid reappeared.

She and Norwis agree the whole uterus should be removed so as not to jeopardise her health.

 

Their NGO activities include outdoor gatherings at public parks.

How do the couple care for each other?

Elaine said they depended on each other’s strengths and worked on their weaknesses.

She admitted like any couple, they had ups and downs but when it came to helping each other, Norwis would stand in for what she couldn’t do and vice versa.

Since he is an awesome cook, he will do the cooking while she will slice and chop the ingredients.

Doing the laundry or dishes is quite difficult for Norwis, so Elaine will help out. Should they find certain tasks beyond them, they will ask their families or friends for help.

According to Elaine, they love the outdoors despite the limitation of using wheelchairs. For them, one of the most difficult things is getting in and out of the car. So they need help when they arrive at their destination.

They are not shy or afraid to ask for help and have had their share of rejections from people who just shook their heads and walked away.

One time, they were scolded by someone who rasped, “Aiyaa, since you already on wheelchair, don’t come out and kacau lah. Just stay home. Don’t be a nuisance to the public.”

Elaine said this could be very hurtful to some disabled people who were not emotionally strong, especially those who had no confidence coming out to public places.

“That’s where NGOs can help by raising public awareness about people with disabilities. Life must go on even for the disabled and society at large, including the disabled themselves, must work to create a positive environment for the less fortunate.”

 

Elaine and Norwis with Piasau assemblyman Datuk Sebastian Ting (left) and Assistant Minister of Tourism, Arts and Culture Datuk Lee Kim Shin during the Miri Hospital Run 2019.

Focus on the positive

Norwis said when talking about the disabled, people should look at what was left instead of dwelling on what was lost, adding, “After all, people with a disability might still have many other abilities. So focus on the abilities.” Norwis is involved with an NGO in Miri called Miri Ability Services Association or Persatuan Perkhidmatan Keupayaan Miri, which aims to enhance the quality of life for people with disabilities by fostering a more disabled-friendly society.

The association encourages the disabled to be proactive and will provide them with up-to-date information, advice and services.

Elaine noted that since its inception, the association has been cooperating with Miri Hospital in monitoring referrals, particularly on their therapy and rehabilitation.

To encourage the patients to be active rather than remaining sedentary, she said free badminton sessions were held every Saturday – thanks to the owner of the badminton courts.

Swimming sessions are also organised every second and fourth Sunday at Southlake besides outings to the parks every first Sunday of the month.

Elaine is happy with her life and her marriage to Norwis.

She said she had met more kind than unkind people and is grateful to her family for their tremendous support and encouragement, especially her sister who organised her wedding and was her bridesmaid.

Elaine said she is glad she met Norwis.

“We’re not only husband and wife but also the best of friends who help each other.”

Both love going to the movies and if they feel a little stressed, they will go to the beach to watch the sunset. This has led Elaine to compose the following poem:

 

When worries in the world weigh you down

And leave you with a distressful frown
Just let the sun that is setting each day
Take away with it the worries of your day.