Welcome to Unwritten's part of the worldwide A-Z Blog Challenge!! Every day in April (except Sundays), we'll have a new post related to the letters of the alphabet from A-Z. Our theme here on Unwritten is "I Will Survive". I hope these stories will inspire and uplift you. Comments are VERY appreciated!
N is for Neurological Condition
The medical experts could not put a name to my condition. Various diagnoses including cerebral palsy, dystonia and even Parkinson’s were used to describe the symptoms that I have but none of them was a perfect fit. The doctors could only conclude that my spastic facial and neck movements and my slightly slurred speech were a form of neurological disorder. Drug prescriptions to control these movements were suggested but this could cause side effects on a long term basis. Brain surgery was brought up and quickly dismissed as it was too risky since the doctors did not really know what was wrong with me. Then one doctor advised to do nothing since I could function normally as a human being. That was the best advice I had. I was 17 years old then.
Despite my neurological defects, I had a very normal and happy childhood thanks to my parents who did a great job in sheltering me from the harsh reality. One could tell that I was different from the other kids at an early age. I still remember a group photo of my kindergarten class which I stood out prominently. In that photo, my neck was slanted at a 45 degree angle unlike the other students who were looking straight ahead. But one could tell from my Cheshire-cat like smile that I was really happy. I was probably too young to know any different then.
There were many happy memories during my preteen years. I did not do well in sports but so did many other students and this helped me blend in at school. Moreover, I did well in my studies with the encouragement of my teachers and parents. This became the foundation of my confidence. Most importantly, my teachers and friends accepted me for who I was, spasms, tics and all. My parents had also drummed into me that I was no different from any other person and I could be whatever I wanted to be.
The teenage years were a little trickier as I became conscious of my body, appearance and impression I make on other people. I was more aware of the stares from strangers or the discomfort of new people whom I met. Hence, I did not mix around much and kept to my circle of close friends. Again, the kindness and support of my friends and family kept me going. Without them, I would not have done so well academically. It was then that I realised God had given me a good brain and coupled with hard work, I could actually make something of myself.
It was also during my teen years when my parents made many attempts to consult specialists for a remedy to my condition. Looking back, I now understood my parents’ concern as they knew that I would be judged by my physical appearance more than anything else when I leave home to further my studies. After several inconclusive consultations, we decided that it would be wise to not pursue any treatment as the risk of the unknown was too great.
Leaving home to pursue a university degree was a life-changing experience. Having to fend for myself and be thrown into a world where I was no longer sheltered and exposed to people from all walks of life and mind-sets was an eye-opener. While many students and lecturers were prudent enough not to ask too many questions about my condition, some reacted quite differently. I discovered that most people I met were initially a little uncomfortable with me. I learned to read people’s body language. Many were unsure how to react to me at the first meeting but they eventually got used to me.
However, one incident was particularly painful when this lecturer had asked me to reread a text in class because of my slurred speech. She even questioned why I could not read clearly. I felt humiliated to say the least. But I guess I had the last laugh when I graduated with a first class honours.
Unfortunately, I rarely came up on top when it comes to making good first impressions. In a society where people are often judged by their appearance, I was on the losing end. A close friend once revealed to me that some people even thought that I was retarded when they first met me.
As I graduated and started looking for a job, I was always fighting a losing battle to make a good first impression. I could see the reservation in the eyes of some interviewers. Their wariness and assumption that a person with a neurological condition would never be able to perform a job well irked me. The worst case was to have an interviewer tell me bluntly that the school did not want to hire me because I would scare the children.
Thankfully, there were many saints and angels which came my way. These people believed in me despite my appearance and gave me a chance to prove my worth. For them I am grateful, they gave me the confidence to move on and they bring out the best in me.
With marriage came pregnancy. The birth of my child brought on a new perspective to my life. However, I was deeply saddened when I could not be the perfect mother as my neurological condition had worsened after delivery. I was bedridden for almost six months. The recovery process was long and arduous but I was and still am truly thankful for my family who continuously supported me through this trying period of my life.
My recovery took years and I never regained my full mobility. My nerves became hypersensitive and my spasms were more visible than before. I learned to cope and gradually went back to work. Life was as normal as it could be again. Then one day, my 9-year-old son told me that 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 son’s shoulders.
On second thought, I found this to be the perfect opportunity to educate him on dealing with people like me. I carefully explained to him why I was the way I was and how he could explain this to his friends or teachers. The questions stopped after that. But most of all, I am thankful that my son is understanding and hope that he will grow up to be a caring person who would always treat people like me kindly.
Through the years, I have found one thing which helped me cope with the ups and downs of my life – writing. Since I have a slightly slurred speech from a young age, I was not much of an orator. Hence, as a form of self-expression, I turned to writing. During my school days, I wrote stories and poems as a hobby. But I stopped writing as I got caught up with life when I started working.
Still, I gravitated towards jobs that would hone my writing skills. I had dabbled in copywriting, subediting and writing web content. It was not until I worked as a children’s storybook editor that my passion for writing was reignited. Recently, I took a leap of faith and decided to become a freelance writer and editor. I hope to produce works to educate the future generation that appearance is not everything.
As I move on in life, I will have good days and bad days like everyone else. But I believe that God has made me who I am today so that I can learn life’s lessons. If I were perfect, I imagined that I would be a proud person and hurt people by criticising those who are less perfect. My condition is a constant reminder for me to be slow to judge and quick to forgive and to be the best I can.
Agnes Ong is a freelance web content writer, editor and novelist in the making, as well as an occasional blogger at Angie Creative Ink. Coping with an unknown nerve condition all her life has presented many challenges and it is through writing that she finds solace, escape and revelation. She hopes that her work will console, excite, delight and inspire. Her short stories have been published in Love in Penang - A Fixi Novo Anthology and Amok: An Anthology of Asia-Pacific Speculative Fiction. Find her blog at http://www.angiecreativeink.com/blog/ and Facebook page at https://www.facebook.com/angiecreativeink?ref=hl.