Your friend is dying and you're reading poetry?

Singapore poets and musicians pull together to help their Filipino friend dying from a rare disease. That's the power of community.

I try not to remember my experience with a rare disease in terms of the difficulties that my family and I had to go through. 

There were far too many difficulties.

Instead, I remember my days bed-bound and helpless in the hospital with Stevens-Johnson Syndrome, in terms of the two pervading human truths that accompanied me throughout the experience. 

The first is that life is irrevocably short and ultimately fragile. 

I was a healthy 23-year old, with a false sense of invincibility.

I thought that I had 50 or more years to live the life that I wanted, not realising that this singular, precious life must be lived now. 

Now is really all we have. The future is yet unwritten, unknown. There is no guarantee. There never will be. 

It may sound morbid but all of us have one foot in the grave already. We can die anytime, be it from an allergic reaction, an accident, or just because the heart decided to stop beating.

The second, more important, truth, is the universal relevance of kindness. 

Until now, I cannot look back on that gruelling experience without being overcome with gratitude, and I will never, in all my life I think, understand what made me deserve all the love, support and specifically, kindness, that I was showered with. From friends and strangers. 

It made all the difference in my recovery. I survived because of that kindness. 

I attribute it to the human capacity - the human need - to be kind. As a self-proclaimed cynic, I had always been doubtful of this kindness. 

But after what I went through, I can truthfully say that from now to my grave - whenever that would be, 50 years, 10, maybe even tomorrow - I will hold deeply to this truth from author Kurt Vonnegut: If there is one rule to follow, it's to be kind.

Jocelyn contracted Stevens-Johnson Syndrome, a deadly rare disease that destroys the outer layer of one's skin. You can learn more about living with rare diseases at Rare Disorders Society Singapore

About Jocelyn

Jocelyn Suarez is a writer and nurse who contracted Stevens-Johnson Syndrome, a life-threatening rare disease that destroys the outer layer of one's skin. She has since recovered, returning to nursing a year after falling ill, and continues to write and perform.



Paolo Ty & Karen Wai