COME Wednesday (Oct 15), I would have lived with tetraplegia for 30 years. It has been so long that I can hardly remember how it felt to stand up and walk under my own strength. I can imagine but that does not even come close to the sensation of actually doing it.
Memories, how they decay like old photographs, gradually losing their brilliance and fading into pale shades of sepia. Whatever is left, time has diluted and eaten away, leaving gaps that can never be filled. In that sense, my recollections of the past are now devoid of the experience of walking and everything else the spinal cord injury took away from me.
In all honesty, I cannot remember the last time I buttoned my own shirt effortlessly or snapped my fingers to the rhythm of a catchy tune. Somewhere along the way, the physical and physiological limitations got assimilated to become a part of me. It is as if I have been like this all my life.
I no longer mourn the loss of the ability to use my limbs and the extra effort required to complete most routine tasks. I have stopped comparing myself with other people. This is who I am now. I have managed to adapt and appreciate the little I have left. Life becomes simpler this way. There are less anguish and disappointment.
The dreams I have, uncannily tell of how much I have embraced the reality of the situation at subconscious levels. Long after becoming paralysed, I could still walk and run with gusto in my dreams but not of late. Short of appearing in a wheelchair, I am as physically paralysed in my dreams as I am in real life.
The same acceptance cannot be said of my friends who have hopes of me walking again one day. They regularly share news and videos of the latest advancements in medical treatments and assistive devices they come across. I know they mean well and I appreciate their concern. However, I want to impress upon them that walking is not the priority in my life.
Walking for people with spinal cord injury is not as simple as wearing a bionic exoskeleton or undergoing stem cell therapy and voila! Both cost a tremendous amount of money that I can ill afford and a commitment to go through the rigours of hard physical training that my body neither has strength nor stamina to endure. And there is no guarantee I will be better off than I am now, so there!
It is not that I have given up. I made a choice to move on to do the things I can do better.
The mindset that walking, among others, can solve the problems faced by disabled people must be changed. What happens to the people with impairments that cannot be cured? Do we leave them behind, or what? In reality, the underlying causes of disablement that need fixing are systemic barriers that have been mentioned countless times in this column previously.
But I have digressed.
The 30th anniversary of the greatest tragedy in my life is approaching. After all these years, there are not many things that can scare me any more. I thought I could not survive beyond a certain time based on statistics and the lifespan of peers who passed on before me. The years have come and gone. I am still around.
A routine medical review on Wednesday showed that the function of my kidneys have declined to 18 per cent of normal capacity. Dialysis is a certainty in the near future. I am bracing myself for that day. Could it be the eventual end of me? I try not to think of it too much. There is nothing much I can do to reverse the situation anyway.
It has been an eventful journey of many ups and even more downs. The first few years were difficult. The last few years have been wonderful. I have had a good run. I hope there might be many more. I am doing things that I have never envisioned doing. My life is as fulfilled as it possibly can be.
If there is anything I have learnt after all these years, it is to never give up. Bad times, and good times, do not last. Good things come to those who wait and persevere. I have hung in there for three decades. If I am allowed to blow my own trumpet, I would proudly proclaim that I have made it. The struggle was worth the effort no matter how difficult and uncertain it was.
What more can I ask for? More time for me to spend with my wife Wuan, who has been my pillar of strength and the staunchest supporter of the things I do. Another 30 years maybe? Who knows? Nothing is certain. Nothing is cast in stone. I leave all in God’s hands.
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