Gen Y Speaks: I am dying and I want to talk about death

It’s sad that we often don’t think about death until it stares us in the face. How often have we read stories of people who realised they were mortal only after being stricken with a terminal disease like cancer?

Or those who had an epiphany after almost being killed in a traffic accident?

In part, this is due to Asian superstitions surrounding death: thinking about it — or worse, talking about it — is an invitation for it to happen to you.

As rational and educated people, however, we must recognise that these superstitions are nothing more than figments of our own imagination.

They arise because we humans are disturbed by ambiguity, so we need to feel like we have an explanation for everything. This causes us to see linkages between two unrelated events that happen one after the other. Psychologists call it “illusory correlation”.

To be fair, perhaps I have a natural inclination when it comes to being comfortable with the thought of my own death.

Unlike most adolescents and young adults, I am fully aware that I might die at any moment. The grim reaper is almost like my closest friend. He follows me everywhere I go.

When I was newly diagnosed with type 2 spinal muscular atrophy as an infant, the neurologist said I wouldn't survive beyond the age of two.

I am now 21, so 19 years past my sell-by date, I’m still sticking around, though I have had more than my fair share of brushes with death.

When I was two, I spent more than two weeks in intensive care as a lung infection threatened to make the neurologist’s prediction come true.

And at the height of the 2009 swine flu epidemic, I caught the deadly virus and had to be rushed to the emergency department as I struggled for every breath.

Thanks to a combination of blind luck, quick thinking by my parents, Singapore’s advanced medical care, and my own tough constitution, I have managed to stave off death repeatedly.

But I am under no illusions. Many of my peers with similar medical conditions are no longer around, having succumbed to lung or heart failure over the years.

Due to the degenerative nature of spinal muscular atrophy, my body gets weaker over time, so the next medical event could well be the end of me — what may have been survivable 10 years ago may no longer be now.

I’d be lying if I said the thought of death hasn’t kept me up at night.

As a child, I sometimes had trouble falling asleep because I struggled to accept the fact that my life would be much shorter than normal.

Worries and fears gripped me for hours as I lay alone in the dark. These days, though, I take a more pragmatic approach.

I don’t know when I am going to die — it could be tomorrow or a decade from now. But I want to be prepared for when it happens. That includes making sure everything that happens after I die is done according to my wishes.

For example, when I turned 21, the Health Ministry sent me a letter to inform me about the Human Organ Transplant Act. I had just become of legal age and could opt out of the scheme if I wanted to.

But another sheet of paper in the envelope caught my attention. It explained the Medical, Transplant, Education and Research Act, which is an opt-in scheme under which I can donate more of my organs for transplantation and scientific research.

I was keen to join the scheme because it would allow me to do one final good deed and hopefully contribute in some small way to making life better for others.

The option form required two witnesses’ signatures other than my own. Naturally, I wanted my parents to sign the form because they will likely be the ones to settle my affairs after I’m gone.

Being from the older generation, they had some doubts. To them the sanctity of the cadaver is paramount, and they fretted about not having an intact body for funeral rites if all the organs were removed.

They also worried about the length of time it would take the authorities to return the cadaver to them after harvesting the organs.

In response, a spokesperson for Live On, the division under the Health Ministry that oversees organ donation, said through a Facebook message: “After the patient is certified dead, a transplant coordinator will be there to guide the family throughout the donation process.

The thorough process of assessing the suitability of organs and tissues for transplantation will take about 12 hours and the subsequent operation also takes about 12 hours… [The family] will be able to collect the patient’s body after the operation.”

My parents seemed slightly reassured by this. But conscious of the pitfalls of pushing them too hard, I dropped the subject to give them some time to come to terms with it.

I plan to show them the form again in a few months, when they will hopefully be more willing to support my decision.

This example shows that it’s important not only to be open and honest when talking about death, but also to be sensitive to the feelings of others.

In an ideal world, everyone should be able to speak up about dying without hesitation.

But mindsets do not change overnight and using shock tactics to force others to talk about death suddenly will only alienate them and make them even more resistant to open discussion about the issue.

Far better to ease into the topic gradually, which I am now doing. In casual conversations with my parents, I have been including more references to my own demise so that they will get used to the idea.

But I take care to use euphemisms like “kick the bucket” to keep the mood light.

They are not ignorant people. Having read up about my diagnosis all those years ago, they are fully aware of the bleak prognosis of my condition and have long accepted that my life could be snuffed out without warning.

I’m just hoping to get them to a state where we can talk about it without fear.

ABOUT THE AUTHOR:

Jonathan Tiong is a third-year student at the National University of Singapore where he is majoring in Communications and New Media.