WHEN I started blogging many years ago, a reader asked me to write a story of one day in my life as a disabled person. She was interested to know what my routines were like. Back then, it was mostly, wake up, eat, watch television, more television, eat and sleep. Not that it was any less meaningful to me but I never got around to sharing it.
Since I started conducting training regularly for the past three months, I thought it would be interesting to share how it is like on a typical day for me. The following happened last Thursday.
The training was at the Malaysia Airlines Flight Management Building at KLIA. The distance between my house and the airport is about 60km, which is about an hour’s drive. I had booked a regular driver to drive me to and fro every day.
My day began at five in the morning. To be sure that we woke up on time, my wife and I set the alarm for our smartphones and an alarm clock to ring simultaneously. The first thing I did before anything else after I was seated on the wheelchair was drain my bladder with a catheter.
It was to ensure my bladder was totally empty to prevent infection and reduce the backflow of urine into the kidneys. This procedure is called clean intermittent catheterisation (CIC).
I perform it every four hours and this has been a routine I have strictly adhered to for the past 26 years.
After I was done with that, my wife helped me put on an adult diaper, clothes and shoes. As I am incontinent, the diaper was a precaution against wetting my pants just in case I could not make it to the toilet in time. She then helped me pack the laptop into my backpack as I waited for the ride to arrive at half past six.
The driver is a young man who is doing ride sharing full time. He has become adept at breaking down my wheelchair when he comes to pick me up and putting it back together at the destination. We made some small talk to break the monotony.
The long journey gave me ample time to gather my thoughts and mentally prepare myself for the day. It was still dark when I got into the car. Along the way, it became progressively brighter. I enjoyed the warm hues as the rising sun painted the sky in various shades of ochre. The sun had fully risen when I arrived at the airport.
I headed to the cafeteria for a light breakfast. The cashier took my order, asked me to get a table and served the food. I like hanging out there because it has a great view of the airport from where I could watch the planes docking and undocking at the terminals.
At eight, I made my way to the training room to set up my laptop, connect it to the projector and made sure all were in working order. The participants for the day started trickling in by quarter past eight. I liked that part of the day best as I got to meet and make new friends.
The first session began at half past eight and ended at ten for a 30-minute tea break. While most of the participants headed to the cafeteria for a cuppa, I went to the toilet to perform CIC.
To make it easier for me to unzip and zip up my pants, my wife attached a baby napkin safety pin to the zipper tab to give me a better grip. Still, it was a struggle with my barely functional hands.
I used the word ‘struggle’ to describe the various tasks I do to give an idea that they are not easy for me. Even for simple tasks, I use a lot more effort as compared to non-disabled people. However, I must also say I have accepted that due to my limitations.
The next session was on ways to interact, communicate and assist people with mobility impairments, especially wheelchair users.
I got the participants to do a live practice with me as the subject. They learnt to transfer me from my wheelchair to an aisle chair used for boarding mobility impaired passengers. I also taught them ways to assist a wheelchair user up and down kerbs.
We broke for lunch at half past twelve. That also marked the end of my training for the day. After packing up, I headed to the cafeteria again for lunch. I do not normally eat outside food due to my strict diet. My wife would cook my lunch before she goes to work.
Since I started training at the airport, I’ve had no choice but to eat at the cafeteria as it would be too late and I would be too hungry by the time I arrived home.
The driver came to pick me up at half past one. The journey back took about the same amount of time. I nodded off occasionally, lullabied by the rocking motion of the car and the steady humming of the engine. I noticed that I get exhausted easily nowadays due to the advanced deterioration of my renal function.
Back home, like always, I fumbled with the keys while trying to unlock the door. It was a great relief to be back home again. I performed another round of CIC after settling down and setting up my laptop. While waiting for the urine to drain, I checked my email, snooped around Facebook and read up on the news of the day.
After that, I spent 20 minutes struggling to remove my pants and diaper. I kept my shirt on. I could not unbutton my clothes and had to wait for my wife to assist me with that. It was already 4pm. Having been up for the past 11 hours, all I could think of was lying down to straighten my legs and spine. My frail health also meant that I need more rests in between.
As I laid on the bed, Cheeky, one of our three domestic shorthair cats, came to rest beside me. He does that whenever I am in bed. I patted his buttocks and slowly slipped into a deep slumber, pacified by his loud rhythmic purring. By the time I opened my eyes again, the room was in total darkness. My wife just got back from work. It was eight in the evening.
I got up and performed another round of CIC before my wife and I had dinner together. I bathed after a short rest. By the time I wound down and got ready for bed, it was already way past eleven. Although bushed, I actually looked forward to the next day. I love what I am doing. I like changing people’s perspective about disability and teaching them ways to assist a disabled person safely. This is what drives me. This is what keeps me going day after day.