Bad news and good news

The writer with participants from one of his Disability Equality Training workshops for Malaysia Aviation Group.

THIS has been a year of high drama for me. From being invited to speak at a prestigious international conference, to getting stranded inside an aircraft for one hour and being engaged by the airline to provide training on proper handling of disabled passengers, I thought I had seen them all.

However, 2017 had a few more nasty surprises up its sleeve. My kidneys finally crossed the threshold to requiring dialysis. I have been battling to avoid this day for the past 13 years. I conceded defeat and steeled myself for that eventuality.

Even as I head into the final days of the present year, they have not been short of unexpected twists and turns. My surgery scheduled on Boxing Day did not happen. This was for the insertion of the Tenckhoff catheter into my abdomen for me to perform continuous ambulatory peritoneal dialysis.

The doctor found out my name was not on the list again for the second time when I went for my routine medical check-up just before the surgery. I asked him if it was imperative for me to go on dialysis at this stage.

After reviewing my blood test results, he was of the opinion that my condition had stabilised and dialysis could be delayed for the moment. But he also warned me to maintain a strict diet and to immediately go back to the hospital if I contracted a urinary tract infection. It could totally wipe out my remaining renal function if left untreated.

This is not a victory as I will eventually have to go for the surgery and start dialysis. It is a matter of time. The temporary reprieve was nevertheless good news. I was determined to savour it no matter how fleeting it was going to be.

It allowed me the freedom to continue doing what I am doing now without hindrance. Once I go on dialysis, my daily routine will be severely restricted. There is a great possibility I may not be able to continue doing training anymore after that.

At another clinic on the same day, I complained to another doctor about pain from a wound in my toe that has been causing muscle spasms in my legs. The sudden and involuntary muscle contractions have been disrupting my sleep and also caused problems when driving for the past few months.

I had inadvertently hit my foot against a wall while in the bathroom earlier in the year. As there is very little sensation in my lower extremity, I did not pay any attention to it. I only realised the severity of the injury when I forcefully peeled the scab off and discovered a gaping sore that was about 3mm deep.

Although the wound was healing, albeit very slowly, the slight pain I felt was enough to cause discomfort and triggered spasms, especially when I wore shoes or had my legs all stretched out. I requested for medicine to reduce the spasms. I was aware of the side effects, having taken it more than 30 years ago. What the doctor and I did not anticipate was my adverse reaction to the medicine.

The first dose produced the desired effect of relaxing my muscles. I took the second dose the next morning just before I started work. By noon, I began to feel drowsy, delirious and nauseous. It got progressively worse to the extent I was constantly vomiting. Luckily my wife was on leave and decided to accompany me that day. Otherwise I would have had difficulty in going back.

As soon as we reached home, I got into bed to sleep off the effects. I could not sit up as each time I tried, I felt light-headed and disoriented. My wife was so worried that she stayed up all night to keep an eye on me.

She even called the doctors to ask for advice. Apparently, the medicine was not removed from my body as it normally would have due to my severely impaired renal function. Fortunately, the effects began to wear off after two days. We are grateful to have doctors whom we can consult in unnerving situations like this.

Bad news or good news, I have learnt to take them both in stride. All the bad ones have been blessings in disguise in their own ways. Notwithstanding what has happened, this is my most productive year yet. I am not only living my dream of becoming an agent of change. I have had ample opportunities to motivate many other people to join me in that quest as well.

I have conducted more training this year alone than I have conducted in all the years I have been at it. All in, I have conducted 56 workshops on Disability Equality Training for over 1,500 participants from various organisations in including Unicef, Asean, Welfare Department, Malaysia Airlines, MASwings, Firefly, and AeroDarat Services.

My training schedule is fully booked until December next year. I pray for strength, and hopefully further delay for the need to do dialysis, to enable me to accomplish what I have committed to. This has been the best and worst year of my life. Despite that, I have enjoyed it very much. At the same time, I would like to take this opportunity to wish readers of this column a Happy New Year. May you have a fruitful year ahead.

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