Nama saya Riz. Saya ada Penyakit Motor Neuron

“How can I be happy when I know that I will not live for long?”

This was the question that Mr Mohamad Asri Sunawan asked in the book he co-authored with Hidayah Amin and Khairudin Saharom (illustration).

From a confident broadcast journalist, host and DJ to an award-winning radio presenter, his world was irrevocably changed in 2018 when he was diagnosed with the degenerative disease, Amyotrophic Lateral Sclerosis, a common form of motor neurone disease.

There is no cure for ALS, and Asri was expected to live for no more than five years.

In no time, he found himself in crutches, and subsequently a wheelchair.

Losing his ability and freedom to walk was a massive setback. But, slowly losing his ability to wield his voice as effortlessly as he had desired was that even greater a blow to him, a daily devastation, to say the least.

He was probably crying but hear him, we did not. 

Anyone that finds himself in such a state would have lost all meaning in life. In those earliest days and weeks after his diagnosis, he was probably no different.

He soon found acceptance, courage and peace from his faith.

Afflicted but not beaten. He began to stand tall. His deeds made him a giant of an inspiration.

In the midst of living out his last days, he co-authored a book (including translating it from English to Malay - and he did it all using an eye-operated assistive device), co-founded the Motor Neurone Disease Association Singapore in April 2021, as well as sat on the committee of Bulan Bahasa, an annual national-scale event that promotes the use and appreciation of the Malay language.

He lived with dignity, gave care, sustained hope and inspired many. Physically, he was half empty, but he lived the remainder of his life with fullness, grace, strength, patience and determination.

As a literarian of the Malay language since his earliest days studying at East Coast primary school, as well as a man of letters, he knew the power of words.

Through every word on every page of his book, he raised public awareness of a debilitating condition, all whilst he was bedridden.

He gave a voice to ALS and overcame the debilitation that inflicts him. This was a legacy that he can be proud of.

To compound matters for Asri, his mother, whom he loved dearly, passed away in October 2022.

Though he was grieving, he continued to do good and contribute to his community in his own relentless manner. 

He was a media personality, a communications specialist, a vocal talent, a disability advocate and an ALS fighter.

He was also a son, a friend, and a brother to many. 

Though he was in darkness, through his work and his personal example, he left a flame that was shining ever so brightly.

His was a light that was not extinguished by the failure of his physical self.  He is a beacon of hope.

As he puts it, “In whatever situation you are in, how difficult it may be, do not lose hope, do not give up, believe in yourself, Inshallah, you shall overcome what challenges you are facing”. 

Nama saya Riz. Saya ada Penyakit Motor Neuron.

His life was fast dissipating through his very eyes, akin to sand flowing through an hourglass.

But he made sure that every remaining speck of sand constituted the building blocks of his legacies.

Asri had asked, “How can I be happy when I know that I will not live for long?”

To that, he can be happy knowing that he had kindled fires for generations after to benefit from his light and warmth.

For that, we owe Asri a debt of gratitude.

His life was one that cradles death on its own as he weaves the eternal tale of love around living and dying.

Death did not extinguish the light he carries; it merely puts out the lamp, as his dawn has, today, arrived for him.

Farewell, Asri. To Him, he has now returned. Al-fateha.

Read more: Paralysed former newscaster writes bilingual book using his eyes to raise awareness about ALS