Life’s A Song

I was a normal, active baby until the age of about 8 months when I could not move from one position to another. It came as a terrible shock to my parents when I was diagnosed with muscular dystrophy, a genetic disease characterised by progressive weakness and degeneration of the skeletal or voluntary muscles which control movement. My mother buried her head in her hands and sobbed when she heard the doctor’s diagnosis.
“Is there any cure? Will an operation do any good? Will my child be able to walk? Is there any therapy that can help this child?” These were some of the questions that raced through my parents’ head. They sought the advice of many physicians and spared no effort in looking for a cure for my condition, but it all came to nought.
I started schooling at the age of 6. Going to a kindergarten was a thrilling experience for me. Mother kept watch over me from a safe distance, as even the slightest push from my schoolmates could knock me off my chair. Throughout my primary school life, Mother was there to take care of my physical needs, to wheel me from class to class, or even to the toilet. I was the only wheel-chair user in the school, and I felt rather self-conscious of the fact. I missed running around with the other kids in school. My father sensed that I felt somewhat left out, and he spent the evening indoor games with me. We had such fun together.
I was prone to colds and chest infections which often required repeated courses of antibiotics. When I was 10, I was hospitalised for several weeks following a severe bout of pneumonia. It took a toll on my health and subsequently I landed up in hospital every few months for various respiratory problems.
Due to my poor health, I was often absent from school for one or two weeks. It was tough catching up on my studies. I am thankful for good friends who lent me their notes and kind teachers who gave me all the help I needed.
Mother was my heroine. She drove me to school every day, and used every ounce of her strength to carry me from the car into my wheelchair. She wheeled me into the classroom and also carried my schoolbag for me.
It was a routine for her to bathe and dress me, attend to my toilet and various needs. During my secondary school years, I could manage on my own with the help of my classmates. It was a relief to know that she could drop me off at school and return home to attend to other chores. My elder sister was studying in the same school and she played the role of big sister to the hilt. I was determined to do well in school so that I would not have to repeat my SPM and add to the family’s burden. So when I eventually passed my SPM, I was elated.
So how do I spend my days? I read to develop my mind. I took up a writing course and even won a short story competition. Winning the contest was the highlight of my life. I realised that if I set my mind on something, and worked hard, I could achieve anything despite my disability. It inspired me to write more.
I still write today even though my movements are very much limited. I type with only one finger due to the deterioration of muscle control in my other fingers. Writing even one sentence is a painstaking effort but I will not be deterred. Writing gives me a sense of freedom. I feel free as a bird when I am at my computer stringing words together to express my thoughts. It helps me to connect with the outside world.
One thing my parents had in common was that they never gave me the impression that I couldn’t do anything. They maintained expectations and treated me no differently from my sister. I was never mollycoddled. They rarely did anything for me that I could do myself or learn to do myself. They never gave me the chance to rely on them for the little things, which is why I ended up trying many things with sheer determination.
I realise from young how important it is for me to keep a positive mental attitude. Till this day, I refuse to let my disability stop me from trying my best. I live life one day at a time, and try to enjoy every moment of it.
My father taught me an invaluable lesson: to accept my condition and not allow myself to be consumed by worries. My mother groomed me from young to be proactive when it comes to matters that concern my health. When I look at a bird singing in a cage, I am reminded of condition. I maybe physically challenged and wheel-chair bound, but I can still sing of the goodness of life.

(839 words)

(Adapted from Hannah Vimala, Close to Heart Star2 Thursday 16/2/2012)