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Does the name Riz Sunawan sound familiar to you?
Mohamad Asri Sunawan, better known as Riz Sunawan, was a well-loved radio presenter and newscaster at CNA and Berita Mediacorp for almost 12 years before moving to the civil service in 2015.
Then Riz’s life changed completely.
In Aug 2018, he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), often called Lou Gehrig’s disease. Stephen Hawking, the famous theoretical physicist who died in 2018, had ALS.
ALS is a rare neurodegenerative disease that affects the nerve cells in both the brain and spinal cord. It causes muscle weakness or stiffness, affecting one’s ability to move, speak, swallow, and even breathe.
It is the most common type of motor neurone disease (MND). It is also a progressive disease – in other words, its symptoms generally get worse over time.
Currently, there is no cure for ALS, and patients with ALS typically live up to 2 to 5 years on average.
The 43-year-old former journalist’s life may have been irreversibly changed by his condition, but Riz is determined not to give in without a fight.
Since his diagnosis, Riz has set up a support group, Motor Neurone Disease Association Singapore (MNDa), with doctors, nurses, caregivers, and individuals living with MND.
He has also recently published a book with a friend, local author Hidayah Amin, to increase awareness of his condition and to raise funds for his medical bills, which can go up to $3,000 a month.
Riz vividly recalls how ALS crept up on him in 2018.
An avid cyclist, he started falling off his bike when he went for rides.
He had a sinking feeling because he was very active and did not have any physical issues. Losing his balance and falling so easily was a troubling sign.
A few weeks after a particularly bad fall, he finally went to see a doctor – he was unable to lift his foot to his bicycle’s pedal.
After a week, Riz was diagnosed with ALS.
“It came as a shock because the doctors told me that I only had two to five years to live,” says Riz.
Ever since then, ALS has gradually taken over Riz’s life.
When The Pride visited Riz at his 5-room flat in the eastern part of Singapore, Hidayah was with him to help answer many of our questions.
Apart from being co-author of Riz’s book, Hidayah, 51, has also been a close friend for the past few years.
She lives near Riz’s housing estate and Hidayah recalls one time when she received a text from Riz early in the morning, asking: “Can you please come now.”
Turns out, Riz had to change his tracheostomy tube. And because of how uncomfortable the process feels, he asked Hidayah to come over because he needed moral support. She rushed over without a second thought.
“I hadn’t even showered yet,” says Hidayah with a fond laugh.
He had a tracheostomy (where a tube is inserted through the windpipe to aid in breathing) in 2020 after he began finding it hard to breathe. This affects his ability to speak, and Riz has been using assistive technology with eye control to “write” words on a screen.
This is his primary way of communicating with others, and on social media and text messaging apps.
It is a tough blow to someone who used to be a familiar face as a CNA newscaster. He was even a voice trainer for newscasters at Berita MediaCorp.
As Riz’s muscles continued to weaken, he was eventually bedridden.
Now, his primary caregivers are his 74-year-old father, Sunawan Dasuri, and their domestic helper.
Creating a support system for himself and others
Though ALS has affected his life drastically, it has never derailed his goals to contribute to society.
Understanding how lonely it can feel to be diagnosed with a rare condition, in 2020, Riz co-founded MNDa with other individuals living with ALS as well as caregivers, doctors, and nurses.
MNDa aims to become a support group for people living with MND, be it patients or caregivers. It also aims to enhance public awareness on rare MND conditions.
“A little over a hundred of us came together to form the group, and it has been a crucial support system for us MND warriors. It is great knowing that even hospitals are supporting us,” says Riz.
Members of MNDa have gone out together for outings, enabling them to connect with one another, and reassured one another in their often-lonely journey.
“One time we went to East Coast Park. It was a simple bonding over food experience, but it was very heartwarming seeing one another there,” says Riz.
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Creating MDNa is not the only way Riz has contributed to the ALS community.
Most recently, he launched a book that he co-wrote with Hidayah called “My Name is Riz. I have Motor Neurone Disease” to raise awareness on MND.
“The book cover is inspired by the popular phrase ‘jangan cakap abang tak payung.’ (Malay for ‘don’t say that I don’t have an umbrella),” Hidayah says with a laugh when I asked her the symbolism for the book cover.
She explains that the book cover is Riz’s way of conveying that he is able to face his obstacles with support from people around him. It is illustrated by Khairudin Saharom, a local media personality and architect.
Ever since its launch on Dec 16, it has sold over 3,000 copies. It is part of a children’s book series by Hidayah, called I am Unique, that shares stories of children with different medical conditions.
“I started this book series because I wanted to educate young children on these health conditions and to help children with special needs not feel ashamed of their situation,” says Hidayah.
Riz co-wrote the book in both Malay and English using assistive technology. It started in mid 2022, with Hidayah and Khairudin going over to Riz’s place for discussions.
“Initially Riz did not want to write the book,” Hidayah says, smiling at Riz.
It took a lot of persuasion from Hidayah for him to agree.
“I didn’t want people to think that I was seeking limelight, or looking for pity for my condition,” explains Riz.
He eventually agreed to work on the book because he wanted to help raise awareness on the condition. As part of it, Riz and Hidayah are planning an islandwide book tour.
Impact on society
The book is a candid recount of what Riz’s journey since being diagnosed with ALS. The simple narrative is stark yet powerful, as Riz writes about his feelings as he grappled with his feelings of mortality.
In one part of the book, Riz writes: “How can I be happy when I know that I will not live for long?”
The answer, he says, when I ask him, is in his determination to continue his journey to raise awareness on MND and to give back to society.
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The sales of the $20 book have been helpful to alleviate his medical bills and equipment, and Riz intends to donate part of the amount raised to MNDa to help other MND patients.
But Riz says that his decision to say yes has given him fresh encouragement, as the book launch allowed him to receive an overwhelming amount of support from people that he didn’t expect to have.
“I learned that in order to make an impact on society you have to be seen,” says Riz.
Editor’s Note: Just two days after we posted this story, Hidayah contacted us with the sad news that Riz has passed away.
Many of the stories we share are of people trying to make the world a slightly better place, and Riz’s story is no different.
Yet what really hits home is his determination to share his truth, no matter what challenges he was facing at the time. He truly is an inspiration to all of us who have met him, and more who will read about his life.
Semoga rohnya, Mohammad Asri Sunawan di tempatkan di samping orang-orang yang beriman.
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If you would like to learn more about Riz’s personal account of his journey with MND, you can get a copy of I am Riz. I have Motor Neurone Disease at Wardah Books.