Thursday January 31, 2013
A battle with rare genetic eye disorder
CLOSE TO HEART
A young woman shares her battle with macular dystrophy, a rare genetic eye disorder which causes progressive vision loss.
HAVE you ever felt useless in that you could not do anything independently? Ever felt like a failure? Well, if you have, then perhaps thatís one thing we have in common.
I would like to share my story to encourage readers who feel that they are facing a dead end in life.
I was born a normal baby 21 years ago. My birth brought great joy to my family, especially to my dad, as he had always wanted a baby girl.
I grew up just like any kid. I went to kindergarten, attended primary school and had a happy childhood surrounded by loving parents and doting grandparents.
Everything went on pretty well until I reached the age of 13. I began to realise that I could not see the blackboard in class and told my mum about it. She took me to the optician and I got a pair of spectacles. However, the glasses were of no help. I still could not read what was written on the blackboard.
I had to borrow my friendís notebook to copy notes and catch up with lessons which I had missed during class. I kept this to myself and did not tell my parents about it as I did not want them to worry. But deep in my heart, I knew I had some sort of eye disorder. I tried to run away from the truth and did my best to cope, with some help from friends.
I was happy I got 7As for my PMR. Things were fine as long as my friends were with me. They were my pillars of strength.
When I was 15, my vision deteriorated further. I had to stop piano lessons as I could not read the notes anymore. It put an end to any hope of being a part-time piano teacher.
My ambition was to take on a job in the medical line, not necessarily as a doctor. Even a pharmacist would have been great. I got satisfactory results in my SPM examination and enrolled in college for a Foundation in Science course, leading to a degree in pharmacy.
I attended a new college where I knew nobody. I was nervous and afraid. Who would help me in class as I couldnít see the blackboard? Would my lecturers be as helpful as my school teachers were? Would my new coursemates be helpful? I did make new friends and got through the first semester.
However, during the second semester, things started to unravel. I was overloaded with assignments and had to type out my assignments which meant that I had to use the laptop. With my low vision, I had to go really close to the screen as I did not know of any special programs to enlarge the text.
I had a blackout one day, perhaps due to the eye strain. My parents got really worried and I had no choice but to tell them that I have had an eyesight problem for the past five years.
They took me to see the eye specialist but the doctor was unable to diagnose my condition and referred me to another hospital. I had to defer my studies to undergo a series of check-ups. I was shuttled from one hospital to another over the next few months, before I was finally diagnosed with macular dystrophy, a rare genetic eye disorder which causes vision loss. There is no known cure, I was told.
I was devastated. Worse still, I was told I would not be able to get a driving licence. I felt like a complete failure. Do I have to depend on people for the rest of my life?
To make things worse, the doctor advised me to apply for an OKU card and she even handed me an application form.
I stayed at home for the next six months, trying to come to grips with reality. I felt so lost. I was plagued by all kinds of fears. I lost my self-confidence.
I have two brothers and they are perfectly normal. If it was in the genes, how come they are normal while I am affected by the condition? Many questions ran though my head. I felt that life was totally unfair and I hated it. There were times when I just wanted to die.
I was angry with God for putting me through this. I had it all, but somehow I felt that I had lost it all. I had eyes, yet I couldnít see. I had the brains to study, but was unable to study what I liked. I had talent for music, but couldnít go any further.
God realised how broken I was and He felt my loneliness. He knew I needed a companion to keep me company, and sent me a dog.
My younger brother had gone jogging one evening and came across a lost puppy on the road. After some investigation, he learnt that the puppy had been walking around aimlessly for many days. He carried it home and my parents allowed us to keep the puppy. We named it Jay Boy. Jay Boy brought much sunshine into my life.
After some months, I was ready for college again. I enrolled for a Foundation in Arts programme, leading to a degree in Mass Communications.
I had a good friend there named Yen. She was a godsend. She was always by my side and offered me her notes as I could not see what was on the board in front of me. I pulled through my one-year foundation course and moved on to my degree programme.
I joined a college in Kuala Lumpur but quit within a year because I did not have anyone to help me there. I felt lost again. The students there were not very helpful. My eyes look perfectly normal so no one would know I have some sort of disability until they see me reading. Whether it was a book or a text message on my phone, I had to put it really close to my face to read it.
I was tired of explaining my condition to people. They wouldnít understand. They would ask me why I wasnít wearing spectacles without realising that glasses were of no help to me.
I used to wonder: if I looked a little abnormal, things wouldnít be so tough for me.
After quitting said college, I looked around for another college and found one in Perak. As usual, I was overwhelmed by worries and fears. But this time, God was on my side. During orientation, I met a student who suffered the same eye disorder as me. Although macular dystrophy is a rare disease, I managed to find someone who had the same problem. The best part was, we would be attending classes together. I was not going to suffer alone anymore. I had someone to confide in; someone who understood what I was going through.
In class, I had really good friends who were ever willing to help me. I felt very much at ease studying here. Well, I wouldnít say that all my problems have come to an end, but somehow, I felt much better. I have completed my first year now and have two more years to go.
I am happy here. I am doing quite well and have very understanding friends, a supportive dean and lecturers. I am confident that I will be able to graduate from this college.
Although I have to work a little harder than everyone else, I am grateful for Godís grace. Well, I do have my share of embarrassing and challenging moments. Whenever I am in the cafeteria, I worry that if one of my friends were to wave at me from a distance, I would not be able to spot them. They would think Iím a snob.
During class presentations, I try my best not to refer to my notes because if I did, everyone would stare at me as I would have to hold the notes very close to my eyes.
There are many challenges which I face but somehow, they donít seem as insurmountable as they used to, now that I have a new friend. Burdens, when shared, seem lighter.
Now I realise that God is looking after me. I am thankful, too, for family members and friends who have given me the strength to persevere in the face of adversity. Through all this, I have learnt that God is never far away from me. He answers prayers, maybe not according to the way you want, but in the way He thinks is best for you.
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