ALL is quiet except for the constant whirring of the table fan used for circulating the air in the bedroom rather than for cooling.
The cats are sound asleep. So is my wife. She hasn’t had a good night’s rest since the rapid decline of my health earlier this year.
Other than her work in the office and household chores, she doubled up as my sole care-giver. She is the one who makes everything works in the household. I’m blessed to have her as a life partner.
It is quarter past one now. I seldom get to stay up this late. My usual bedtime is around 10 o’clock. I could not keep my eyes open even if I wanted to. End stage kidney disease is hard on the body. Fatigue and lethargy are constant companions. I’m wide awake because I had taken a long nap earlier.
My movement is limited at the moment. I am tethered to the peritoneal dialysis cycler. It is a 10-hour process. The cycler and peritoneal dialysis solution have taken over the functions of my kidneys in removing waste and water from my body.
This is a therapy I have to do every day. Without dialysis, I would be very ill and perish within weeks. It was tedious in the beginning but we have gotten used to it now and have worked our daily schedule around it.
We are in the last days of 2018. In this tranquil and unhurried moment, I am filled with nostalgia at the impending change of year. Now is as good as any other time to reflect on the year that was. I must say it has been a very challenging one for me. There is no doubt about it. From the get-go, it was a rollercoaster ride of extreme highs and terrible lows. This was the year I truly discovered myself.
The few weeks prior to starting dialysis and the few weeks after were one of the worst times of my life. If I was not working, I was in bed resting most of the time due to extreme tiredness, caused by the accumulation of waste in my body.
There were days when it got so bad my wife had to feed me. It got to a stage where I thought I would be bedridden for the rest of my life. I was practically living one hour at a time, not thinking too much ahead because that was too overwhelming.
I am glad that difficult phase is over now and dialysis is working out very well for me.
The 15-month programme to train the frontliners of Malaysian Aviation Group on interacting, communicating, assisting and supporting disabled passengers concluded last week. All in, together with my colleagues, we have conducted 208 classes for 4,300 staff.
Being able to impart knowledge on disability to such a large number of people is most fulfilling. Nothing can beat the feeling of seeing enlightened faces when they discovered the real causes of disability and what they can do to resolve those issues.
Never in my wildest dreams had I thought I would be commuting to the airport in my wheelchair four days a week for one whole year for work. I know a lot of wheelchair users commute to work daily but I thought I could not cope, considering the severity of my physical impairments.
Having discovered I could survive by myself with the occasional help from strangers, I kept testing the limits of what I could do. I pushed myself to do more and venture farther each day. I found I enjoyed the sense of independence and freedom.
It then struck me I have limited my own potential through self-doubts and assumptions. As disabled people, we are often told we cannot do this and that, and I believed it. Now I know better.
These daily solitary journeys gave me a better understanding of the struggles disabled people have to contend with. Accessible facilities and services in Kuala Lumpur, and throughout Malaysia for that matter, are not up to par.
Small barriers that do not usually bother other people can be formidable and even dangerous to someone using a wheelchair like me. That is the main reason why disabled people are unable to participate effectively in society.
It took great effort to overcome the multiple barriers along the way. Imagine having to do this every day. Most times, it is easier to just give up. But then again, nothing will change if we throw in the towel each time we are faced with a challenge.
This column has allowed me to highlight the issues to the people that matter. Although all the issues happened in Kuala Lumpur, my articles have never failed to elicit a quick response and corrective measures.
For that, I am truly grateful to the editors of The Borneo Post for giving me the avenue to advocate for equality and inclusion.
Last but not least, I am thankful for friends who never failed to stand behind me whenever I needed support.
Knowing they are there was very reassuring. It meant a lot because it gave me strength to push on. They are far too many to mention here but I want to acknowledge their role in enriching my life.
Yes, 2018 has been a year of breaking barriers, great changes and pushing myself beyond the limits. Despite the grief and hopelessness I felt at times, this is the best year yet. I am glad everything turned out well in the end.
For now, I am savouring the short break so that I can begin the New Year with renewed vigour. I am looking forward to what 2019 will deliver.