SINGAPORE: She was supposed to go back into hospital because her hand wounds were infected, but she put it off. Her son’s preschool graduation was the next day.
“I might not be able to see his other graduations. I’d rather fight, and go and see (this one),” said Ms Nur Zakiah Jaafar. “It’s only kindergarten, but it’s still something that he has achieved.”
Her mother was “nervous” about how sick her daughter might feel. It would be the pain, however, that the 34-year-old would have to fight off, more than anything. And she did, for her son Ahmad.
“I couldn’t believe that was my six-year-old (on stage) without me,” she said that day when emotion overcame everything else, bringing smiles on her face despite her condition.
“Seeing him perform up there with his friends was definitely worth every pain that I felt today, and because I know I wouldn’t be able to go back in time.”
Ms Zakiah suffers from Raynaud’s phenomenon and Buerger’s disease, a rare disorder affecting blood vessels in the arms and legs. Arteries and veins become inflamed and blocked, causing tissue damage that can lead to gangrene. There is no cure.
She has lost all her fingers, except her thumbs, and all her toes.
But she has not lost her determination to be a good mother, even if it might mean sacrificing what is left of her limbs, as On The Red Dot finds out in following three families struggling against rare disabilities.
IN INTENSE PAIN
Ms Zakiah’s medical condition started out as small blisters on her feet, when she was about 14 or 15. “The GP told us that maybe I wasn’t wearing proper footwear,” she recalled. “So we didn’t give it much thought.”
As she grew older, the wounds got bigger. About five years had passed when she was admitted to hospital for a thorough check-up and was diagnosed.
The turning point came in 2014, when sores on her right leg got “so bad” that doctors wanted to amputate it. She refused.
“That’s when I realised that this was getting serious,” she said. “I started staying in hospital a bit longer each time, and the antibiotics got a bit stronger … and the pain kept getting intense.”
Now, when the home nurse tends to her wounds, Ms Zakiah is left whimpering in pain on her bed. “The apprehension starts every night before the nurse actually comes … It creates a bit of nightmare for me,” she said.
“Before she comes, I’ll take a dose of morphine so that it would help me to be calmer.”
But it cannot stop her from crying as her dressing is changed. “The pain is like having someone rip off your skin, and then putting salt on it,” she said.
Her mother is there by her side, with the soothing words “don’t cry, dear”. Ahmad is close by, too – usually not saying much, but Ms Zakiah can see “he’s sad and afraid”.
“He sees that something’s wrong with Mummy, but he can’t do anything about it,” she added.
After his graduation day, she called for the ambulance to take her to hospital, feeling “scared” of what the doctors might tell her about her condition.
Before she left, she told her son tearfully as she kissed him, and he kissed her back: “Don’t be naughty. Stay with grandma. Mummy will always be near you. Mummy will come back soon. Please pray for Mummy’s speedy recovery.”
‘I’LL STILL BE HERE’
On her fifth day in hospital, there was an update on her condition: The antibiotic she had been given was not really controlling or preventing the infection, said a doctor.
So upon discharge from hospital, she was given another antibiotic – making it two antibiotics together – so that the infection would not worsen.
Back at home, she said: “I never thought that I’d be in this state … I took writing for granted because when you have fingers you don’t really see them there.
“Then suddenly (they get) taken away … You have to depend on other people to feed you.”
Ms Zakiah, an animal lover, used to work at the Singapore Zoo. That was where she met Ms Siti Aizura Kadel, who has been her close friend for nearly 20 years now.
“Back then, she was very jovial, very optimistic,” said Ms Aizura. “Despite her pain, what she’s gone through … the sickness hasn’t changed her.”
But it has taken its toll, as her friend has seen while visiting her during her latest hospitalisation and after she was discharged.
And Ms Aizura told her that, saying: “I don’t like to see you in hospital nowadays because you’re not your normal self … I can see it’s getting worse.”
It is rare that they “talk about sad things”, according to Ms Aizura, and if they do, they “try to joke about it”.
But even a couple of years ago, Ms Zakiah did not think she would lose her fingers, toes and half of her feet.
And her friend sometimes feels that “she doesn’t want people to see her sadness” at not being able to walk or hold her son.
Ms Zakiah admitted: “It’s easy to sink into, and be sucked into, depression. So it’s good that you have someone to pull you out.”
So she hopes their friendship will continue for “the next 40, 50 years”. “A few lost limbs, but I’ll still be here,” she said, reducing her friend to tears.
“You (better) make sure,” said Ms Aizura. “We need to see him (Ahmad) grow up.”
Ms Zakiah, a divorcee, replied: “We will … together.”
HER FIRST BEST FRIEND
If Ms Aizura is the sister she never had, then her 68-year-old mother Musliah Ahmad is the “first best friend” she has known.
“My mum and I have been very close because she was a divorcee as well, so she raised me and my brother with the help of my uncles,” said Ms Zakiah.
“We normally discuss anything under the sun. And sometimes there’s something bothering me, or there’s something that she’s upset about … or sometimes it may be just an opinion we need out of each other.”
She tries not to show her mother how much pain she is in, although it is hard.
“Sometimes I feel as if I’m being a burden to the family because of my illness. You see, it’s supposed to be me looking after my mum at this age,” she said.
“Now, she helps me to bathe, transfer me from the wheelchair to the bed, or she has to push me around.”
Mdm Musliah would not have it any other way. “How can I not love her?” she said. “Even though I’m tired, I see her smile (and) I forget everything.”
And her love does bring out her daughter’s smile, like the time Ms Zakiah playfully asked her, “How about a piggyback? Piggyback!”
Mdm Musliah also cooks, which helps to save money. Their family copes with the S$250 or so in Central Provident Fund money that she gets every month, and about S$350 from the Islamic Religious Council of Singapore (Muis).
As she is not working, and her daughter can no longer do so, the Medical Endowment Fund (Medifund) pays for the hospital bills and medications.
They also rely on their savings. And recently, Muis volunteered to pay for some makeovers in their flat.
Ms Zakiah “doesn’t dare” to plan long-term, taking “each day as it passes”. What she has learnt, however, is that disease is not “a one-person fight”.
“It involves everybody around you,” she said. And of her mum, she said this: “I’d never ever in a million years change her to someone else.”
For Mdm Musliah’s part, she still harbours hope that “one day, Zakiah will be fully recovered”. With her voice trembling with emotion, she added: “I’m very, very scared of losing her.”
‘EVERY DAY IS A GIFT’
Ms Zakiah made it home from hospital in time to spend her birthday with the family, which made her mother “very happy”.
And as a surprise, the On The Red Dot team threw a party for them with their relatives and friends. “(It) was a really big surprise,” she admitted. “The set-up was beautiful and the food was definitely great.
“When I saw everyone there, I was pretty touched … Everybody’s so busy, but they made time to come over and to celebrate with me.”
Her brother’s family was there, as was Ms Aizura’s, and some of the neighbours. “Everyone got a present. So it went pretty well,” said Ms Zakiah. “After everybody left, my mum actually tried on her abaya.
“Ahmad also asked us to open his present … He definitely enjoyed the birthday party as much as I did.”
