Family & Life Magazine Issue 4 | Page 12

FOCus StandingTall By Farhan Shah For most of us, it’s a time for celebration. For Noraini Adnan, a lady with cerebral palsy, she’s just thankful to be alive to enjoy this time together with her family. Speaking with Noraini over the phone is quite the treat. The enthusiasm in her voice is infectious, as though it’s the first time she’s having a conversation with someone over Bell’s invention. We met on a searing afternoon at The Fabulous Baker Boy Café, a cosy hideyhole at the bottom of The Foothills. As I opened the glass doors of the place, I immediately recognised Noraini, not by the motorised wheelchair that she uses to get around in, but by the radiant smile that broke out when she saw me. I would imagine it’s the same grin that appears on her face each time she uses her mobile phone. Any lesser mortal would have been crushed by the immense pressure. Noraini’s parents, spurred by a combination of love, devotion and responsibility, persevered. Noraini Adnan is 41-years-young with a healthy head of hair with eyes that sparkle when she talks about the different responsibilities that she’s currently handling. Noraini also has cerebral palsy, the result of a severe case of jaundice that struck her down when she was only three days old. “My parents had to rush me to the hospital for an urgent blood transfusion and were sick with worry. They were incredibly thankful when I survived,” says Noraini. During the next few months following the scare, Noraini’s parents went about with their lives, working hard in the day before happily returning back home in the evening. It was everything they dreamt of: the HDB equivalent of white picket fences. It was not to be. A year after she took her first few breaths, Noraini was still finding it difficult to sit up without the assistance of her parents. Speaking also proved to be hard and when the doctor diagnosed Noraini with cerebral palsy, her parents’ world crumbled. The word “cerebral” refers to the area in the brain or the cerebrum that is affected while “palsy” means complete or partial muscle paralysis. The cerebrum is responsible for memory, ability to learn, and communication skills, so when the cerebrum is damaged, it might lead to cerebral palsy. Scientists have discovered that cerebral palsy usually occurs in the first six months of the pregnancy and is due to three possible reasons: 1. Damage of the brain’s white matter 2. Abnormal development of the brain 3. Bleeding in the brain due to stroke 12 Family & Life • Dec 2013/Jan 2014 “But, they picked themselves up off the ground and carried on, trying to give me a normal life as much as possible,” says Noraini. It was a long and uphill trek, punctuated with three painful surgeries – physically for Noraini and mentally for her parents. Any lesser mortal would have been crushed by the immense pressure. Noraini’s parents, spurred by a combination of love, devotion and responsibility, persevered. And they never believed in hiding Noraini from the world. Instead, they brought her grocery shopping, took her on short holidays and allowed her to play with her cousins. “My cousin Juwanda dropped me once,” says Noraini, giggling at the roughhousing memory. She was eight, her cousin just a year younger, and they were on a grocery run at the neighbourhood supermarket. “Do you remember that incident, Juwanda?” Noraini asks her cousin, the fabulous baker boy. Juwanda, one year younger than Noraini, mocks a sigh. “She IS such a drama queen. The truth is, I was pushing her wheelchair, and we were running around and having fun, when she fell off the chair onto the ground. Instead of helping her, I just laughed. And she, too, started laughing!” “You see! He didn’t help me immediately!” It was an exchange that no one else would have dared to have with Noraini, for fear of being offensive. But, the bond the duo has developed with each other since young gives Juwanda an insight into Noraini’s life that no one knows – he understands that ultimately, Noraini just wants to be treated normally like everyone else, good-natured insults included. The both of them share a longrunning vacuum cleaner gag, when Juwanda first told the café’s staff that Noraini would be attaching a hoover to the wheels of her motorised wheelchair and would begoing around the café to clean the floor. The employees were, according to Juwanda, slightly aghast and momentarily thought that the bespectacled baker was dead serious. “She has to earn her keep! She can’t keep coming here to eat my cakes for free,” Joowanda said to me. Noraini breaks out into riotous laughter upon hearing that. These moments of levity with her close family member during the interview indicates how Noraini approaches life, despite being thrown a multitude of setbacks that she’s had to overcome. The three major operations that she was subjected to, the passing of her biological mother when she was 18, the numerous stares she received from the members of the public when she headed out with her parents – they’re experiences that have shaped her into the independent and spirited woman she is today. Noraini too was in a position to create history when she was 14, after she was selected to be the first student with a disability to be admitted into the mainstream school system. At that time, she was studying in the Spastic Children’s Association. Unfortunately, during that period, she was suffering from excruciating back spasms that would leave her immobile. The condition meant she was unable to accept the offer. It was only two years later that she met a renowned paediatric neurologist who managed to keep the spasms under control with medication, some of which she’s still taking now, almost 30 over years later. But, Noraini is not one to dwell on the past. Instead, she attacks the present with gusto and has kept herself busy, involving herself in a laundry list of activities to champion the disabled cause. And when she’s not busy scooting around in her motorised wheelchair to be the voice of the less fortunate, she meets her father, whom she’s still very close to, for a spot of coffee and heads to her cousin’s café to scare the new employees with made-up tales of the wheelchair-hoover hybrid. The enthusiasm never wanes and, of course, the smile never leaves her face.