THE common perception regarding people who are living with life-threatening diseases is that we must look sickly and weak. We are also expected to be despondent all the time. Friends I met who knew what I was going through, because I made it a point not to hide my condition, told me I neither looked ill nor jaundiced.
They also noted that I appeared cheerful in so many ways. Except for having lost some weight, I didn’t fit into the archetypal patient with end-stage renal disease. This is simply because I refuse to conform to that stereotype.
I want to be living life to the fullest regardless of my condition. In the months leading to my surgery and before starting dialysis, I did many things I had never done before. I started taking selfies, which I posted in Facebook. It was to be a record of my mood for a particular day and how I looked like before and after dialysis, and beyond.
Looking back, I am glad I did it. It was a good reminder of what I was going through. I found I experienced more good days than bad. It is true when they say tough days don’t last. This is something for me to ponder over when the times are lean and situations appear hopeless.
I took on a punishing schedule of conducting trainings, attending conferences and participating in events. It was not because I thought my time was limited and I wanted to do everything before that. Opportunities to do what I was trained to do knocked and I opened the doors. It was by chance that all these happened at the same time when my health was in rapid decline. The irony is that I was at my busiest and most productive when I was at my weakest.
I felt I was still able, and after having done them, I realised I indeed could. Yes, it was tiring. I needed to rest and sleep more in between. But I enjoyed every minute of it because it didn’t feel like work. So why not? I must mention that all these happened with the support of friends, who gave me opportunities to shine. They deserve as much credit in giving me avenues to bring out the best I could muster.
When I shared with friends the entire process of how I do dialysis, they never failed to cringe and gave me that you-have-my-sympathies look. Asking for sympathies was the furthest from my mind. All I wanted was to give an insight of what a wheelchair user and one with kidney disease has to go through.
These are stories seldom shared but could be useful to people who are going through the same condition. I want to tell them that they are not alone in this. There are people in similar situations out there. If other people can do it, and especially me in my condition, so can they.
I also want to create more awareness and understanding of kidney disease by being very open about it. This is not a condition that should be feared. I see my paralysis as part of living. Some people have it, some don’t. Likewise, I see kidney disease in a similar vein. Once people understand kidney disease better, it is my hope they will seek proper treatments and not wait too long out of apprehension or ignorance.
Acceptance may be difficult. But whether we like it or not, those with this disease will have to face the reality eventually. I have accepted it because in the early days of my spinal cord injury, I was already aware of the risks of being afflicted with kidney disease. When I was diagnosed in 2004, I already steeled myself for the day I would have to undergo dialysis.
Looking at it from another perspective by segmenting the symptoms, treatments, and precautions into smaller chunks instead of lumping it all together makes it less intimidating. The point here is to deal with one issue at a time. I used to be overwhelmed by all these but since I began to break them into smaller pieces, they have become easier to manage and work on.
I don’t see what I am going through as suffering but a necessity, as necessary as brushing teeth, bathing, eating, and defecating. It is more of a struggle to keep my emotions in check in order to keep moving forward. Dialysis is just one more thing I have to do to be healthier, like how people keep to a healthy diet and go to gym to get a good workout.
It is only now that I am living with a life-threatening disease that I truly understand the meaning of, “Don’t count your days but make your days count.” There is no point in counting the days when I make no attempt to savour each and every one of them. My goal now is to make each day as productive as possible. I shall neither allow stereotype nor kidney disease hold me back from doing what I want to do. I am determined to live life to the fullest despite the circumstances.