Thursday September 13, 2012
Living with a neurological disorder
CLOSE TO HEART
By AGNES ANGELINE ONG
THE medical experts were baffled. Diagnoses including cerebral palsy, dystonia and even Parkinson’s were used to describe the symptoms but none fit. Finally, doctors concluded that my spastic facial and neck movements, and slightly slurred speech were a type of neurological disorder. Drug prescriptions were suggested but this could cause side effects. Brain surgery was considered at one point, but quickly dismissed as too risky since the doctors did not know what was wrong with me. One doctor advised doing nothing since I could still function normally. I was 17 years old then.
I had a normal and happy childhood, thanks to my parents who did a great job of sheltering me from the harsh reality. One could tell that I was different from other kids at an early age. I still remember my kindergarten class group photo in which I stood out prominently. My neck was slanted at a 45-degree angle unlike other students who were looking straight ahead. I was smiling like a Cheshire cat and one could tell that I was really happy. I guess I was too young to be conscious of the fact that I was somewhat different.
I have happy memories of my preteen years. I did not do well in sports but neither did many other students. I did well in my studies with the encouragement of my teachers and parents, and my confidence grew. Most importantly, my teachers and friends accepted me, spasms, tics and all. My parents drummed into me that I was no different from any other kid, and could be whatever I wanted to be.
The teenage years were a little trickier as I became conscious of my appearance and the impression I made on other people.
I was more aware of the stares of strangers or the discomfort of people whom I had just met. Hence, I did not mix around much and kept to my circle of close friends.
The kindness and support of my family and friends kept me going, Without them, I would not have done so well academically. I began to realise that God had given me a good brain and if I worked hard, I could make something of myself.
During my teen years, my parents consulted many specialists for a remedy for my condition. Looking back, I now understand their concern. They knew I would be judged by my physical appearance more than anything else when I left home to further my studies. After several inconclusive consultations, we decided it was best not to pursue any treatment as the risks were too great.
Leaving home to pursue a university degree was a life-changing experience. Having to fend for myself and being thrown into a world where I was no longer sheltered, was an eye-opener. Many students and lecturers were prudent enough to not ask too many questions. However, I discovered that there were people who were initially uncomfortable with me. I learned to read body language. Although people were unsure how to react to me at first, they eventually got used to me.
I remember a particularly painful incident when a lecturer asked me to re-read a text in class because of my slurred speech. She even questioned why I could not read clearly. I was deeply humiliated but I guess I had the last laugh when I graduated with first class honours.
Unfortunately, I rarely come up tops when it comes to first impressions. In a society where people are often judged according to their appearance, I was at the losing end. A close friend revealed that some people thought I was retarded when they first met me.
When I graduated and started looking for a job, I could see reservation in the eyes of interviewers. Their wariness and assumption that a person with a neurological condition would never be able to perform a job well, irked me. One interviewer bluntly told me that the school did not want to hire me because I would scare the children. Thankfully, there were many saints and angels who believed in me and gave me a chance to prove my worth. They gave me the confidence to press on and brought out the best in me.
With marriage came pregnancy. The birth of my child brought a new perspective on life. However, I was deeply saddened that I could not be the perfect mother: my condition worsened after delivery and I was bedridden for almost six months. The recovery process was long and arduous. I am thankful for my family’s support throughout this trying period.
I never regained full mobility but I learned to cope and went back to work. Life was as normal as it could be again. Then one day, my nine-year-old son told me his friends and teachers at school were asking why his mother was different. I was stunned. As much as I had to deal with other people’s perception of me, I did not expect this burden to fall on my child’s shoulders.
In restrospect, this was the perfect opportunity to educate him. I carefully explained why I was the way I was, and how he could explain this to his friends or teachers. The questions stopped after that. Thankfully, my son is understanding and I hope he will grow up to be a caring person who treats others with compassion.
Through the years, one thing helped me cope with the ups and downs in life – writing. I was not much of an orator due to my slurred speech. So as a form of self-expression, I turned to writing.
During my school days, I wrote stories and poems. But with the busyness of working life, I stopped writing.
Still, I gravitated towards jobs that honed my writing skills. I dabbled in copywriting, editing and writing web content. My passion for writing was reignited when I worked as a children’s storybook editor. Recently, I took a leap of faith and became a freelance writer and editor. I hope to produce works to educate the future generation that appearance is not everything.
I have both good and bad days like everyone else. But I believe God has made me who I am today so that I can learn life’s lessons.
If I were perfect, I might become proud and insensitive towards those who are less perfect. My condition is a constant reminder to me to be slow to judge and quick to forgive, and to always be the best that I can be.
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