Monday, April 22

Life’s cruel joke


SOMETIMES I have a feeling life is playing a cruel joke on me. For all the years when my health was better, I was mostly idling at home looking for ways to kill time. Work was occasional. I had wished for more.

We have been warned to be careful of what we wish for because we may get it but may not always like it. Nevertheless, now that my wish has come true, and I am at the busiest phase of my life, my health takes a turn for the worse. Talk about luck! Perhaps I should have wished for good health and slow days. But my life would have been so boring with me doing nothing.

Work engagements have been steadily picking up since the beginning of the year. I have training sessions lined up several days a week for the next three months. Similar workshops have also been scheduled for the whole of next year, including an undertaking to work on a disability-related photography project.

I am excited and yet sad at these developments.

I love what I am doing especially when the results are apparent. The workshops I facilitated have made agents of change out of most of the participants, if not all. They are determined and motivated to make society more inclusive and accessible. That is the reason I find great fulfilment in what I do.

I would love to continue doing that but it looks like what I can do is limited by the need to start dialysis soon. Review of my most recent blood test results have revealed that my renal function is only at 11 per cent. It was 17 per cent at the end of last year, and 13 per cent three months ago. As much as I had hoped the results this time could show an improvement, they did not. There is no chance of delaying dialysis. It is inevitable.

On the contrary, the rapid deterioration is worrisome. I am living on a fine line. Any small drop in function at this stage can be critical. The doctor cautioned that I would need to undergo emergency haemodialysis if the function declines further between now and the scheduled insertion of the Tenckhoff catheter in December.

I earnestly hope my kidneys will hold up until then. Emergency haemodialysis is not a pretty sight. A temporary catheter is inserted into a large vein in the neck or groin from where blood is diverted into a machine to filter out toxins and then returned to the body. This is not the path I want to go down.

If the surgery goes ahead as scheduled in December, I will be out of action for one month as I recuperate and learn to perform peritoneal dialysis. I may or may not be able to continue working after that depending on whether I can independently perform the fluid exchanges required in this option of dialysis considering my lack of fine motor skills.

I am not going to question why all the good and bad are happening at the same time; why this twist of fate when things are looking up? Trying to make sense of it is futile. I am not even going to fight it. I have learnt that some things cannot be changed no matter how hard I try. Instead, I am just going to go with the flow and live one day at a time.

Come to think of it, it could be worse. I could have been stricken with an incurable fast-acting terminal illness. On the other hand, I have not reached the end yet. That, in itself, is good news. Instead, I have had time to prepare myself for the past 13 years, sort out my life, and settle outstanding issues. This may sound macabre but this is how I console myself whenever despondency is overwhelming. This is also how it truly is.

To ensure the workshops I have committed to can continue without interruption when I am incapacitated, I am training facilitators who can step in and take over when the time comes. They are given full access to all my training materials and resources. I have also promised to support them in any way I can. This is the least I can do. It is also part of my plan in developing a younger generation of facilitators and activists.

Despite the gloom and doom, I am determined to make the best with the time I have from now until December. Who knows? Something unexpected may appear to impact my life in even more positive ways between now and then. Like Alexander Pope so optimistically put it, ‘Hope springs eternal in the human breast’.

Seeing how other adverse events in my life have turned out to be blessings in many ways, I am confident everything will turn out all right in the end this time as well. Life’s cruel joke on me is a good thing after all because I am now prepared for all eventualities come what may.