Words of wisdom from the dying: ‘Accept your burdens and move forward’
SINGAPORE – Mr Toh Kok Peng was diagnosed with ALS (amyotrophic lateral sclerosis), formerly known as Lou Gehrig’s disease, at the age of 36. Over time, the rare motor neurone disease affects control of the muscles needed to move, speak, eat and breathe. There is no cure for ALS.
Now 39, Mr Toh is paralysed and he cannot talk. He uses an augmentative and alternative communication (AAC) device known as Tobii. AAC refers to all the ways in which a person communicates besides talking. By using a communication aid that is controlled with his eyes, he can use a digital voice or type messages. He used the latter method to respond to The Straits Times’ interview questions.
Mr Toh, who used to work as a senior manager at a biotechnology multinational corporation, had led a physically active lifestyle since his national service days, where he served as a naval diver.
But one day, he could not turn a screwdriver while fixing a cupboard door. His initial assessment that it was likely a muscle strain evaporated after a battery of medical tests.
He says: “I was in the prime of my life, having been promoted to the role of a senior manufacturing manager just months before getting my diagnosis in mid-2020. In the initial stages, I had trouble confronting my disease. I lost my appetite and was rushing to get my affairs settled due to the prognosis of two to five years that I was given.”
The first neurologist Mr Toh consulted told him plainly that he “just had to wait” for his muscles to deteriorate and that there was nothing to be done.
“I felt very helpless because he was essentially asking me to wait to die,” he recalls.
But another neurologist changed Mr Toh’s perspective.
“He said not to look at it as a disease that I am going to die from, but as a medical condition that I am living with.
“In sum, the sooner that you accept your condition, the more time you will have to create happy, cherished moments with your loved ones and for yourself. Accept your burdens and move forward, for their sake.”
‘Eat, drink and be merry’
Taking his doctor’s advice, Mr Toh continued to swim until he could no longer undress himself or lift his arms.
He recorded videos for his two sons, aged seven and five, and his 35-year-old wife, who works at a statutory board. He shared stories from his life and imparted advice he hoped they might find useful in the future, ranging from how to handle stress to the importance of insurance.
“I was fortunate to have had a persistent financial planner who kept asking me to buy insurance policies,” he quips.
He also advises: “Eat, drink and be merry while you can.”
He indulged in buffets and his favourite fried foods, and quaffed sake, whisky and Coke, knowing that he would eventually lose the ability to swallow. He has been tube-fed since March 2024.
“As positive as I seem to make it sound, I do face trials and tribulations in a roller-coaster way. With each milestone of disability, you must learn to calibrate and cope. Managing mental and emotional states is more difficult than the physical part.”
Using Tobii’s eye-gaze or eye-tracking technology to create Excel and PowerPoint files, Mr Toh continued working until 2023. He had to give up the work he loved because he could no longer sit for many hours.
He says: “Thanks to my new-found faith in Christianity, I learnt to lean on spiritual support that I had been missing for a long time. Previously, I depended on myself and others for physical and emotional support, but when humans fail, faith in God filled the void that I had.
“You have to continue finding the reason or support that will lift you up, be it an activity, a thing, a person or a religion.”
‘Don’t be quick to judge’
Mr Toh, who co-founded the Motor Neurone Disease Association Singapore in 2021, cautions against underestimating people living on the margins.
He says: “I can’t move my four limbs. I can’t talk or swallow. I am fed through a tube that goes directly into my stomach.
“But my cognitive functions are still sharp and my senses are intact. I am the CEO and CFO of my household. I buy the groceries online and plan the meals for our two helpers to cook. I also manage the finances at home.
“There are many people who misunderstand ALS because they see someone who is paralysed. By leveraging technology, we can still accomplish many things.
“Don’t be quick to judge or underestimate people who are different.”
He is grateful for the limited time he has left.
“We should live our lives as though we are living our last, so that we will cherish precious moments. What would you do today if you know that you are going to die tomorrow? But my wife keeps reminding me that I am not going to die tomorrow,” Mr Toh says.
Join ST's Telegram channel and get the latest breaking news delivered to you.
Posts
No comments:
Post a Comment