On today’s Persons with Disabilities Day, writer Julie Ngadan reflects on her late father, a man who turned his post-stroke life into a testament of resilience. His journey reminds the writer that disabilities do not define a person — their spirit does.
Finding light even in the darkest times
I’ll never forget those days in university. Every time I stepped into the bathroom of my hostel, the weight of the news that my dad had suffered a stroke would hit me all over again.
I muffled my sobs with a damp towel, biting down hard to keep anyone from hearing. What kind of daughter was I to be so far away, oblivious while my father’s world crumbled?
That moment remained etched in me, a wound that never heals.
I only discovered the news because I called his office, pretending to be his sister, wanting to visit him at home.
A lie — desperate and born out of fear. I never imagined that a simple phone call would shatter my world.
The receptionist’s voice was cautious but kind: “Didn’t anyone tell you? He’s had a stroke.”
Stroke. The word echoed in my ears like a curse. I hung up, my hands shaking, my stomach hollow. A thousand miles from home, I, his firstborn, felt utterly powerless.
The man who had always been my anchor — who could carry the weight of the world and still crack a joke — had been brought low, and I hadn’t even known.
When I finally returned home, it wasn’t the same house I’d left. The walls seemed quieter, the air thicker.
And dad — oh, dad. He lay on his bed, his left side slack, his face turned toward the window as if searching for something he couldn’t name.
He smiled when he saw me — a crooked half-smile that shattered my heart. “Hey, indu Ganu,” he said, his voice slurred but still unmistakably his.
Indu Ganu, or Ganu girl — that’s what he always called me while I was studying in Terengganu for my degree.
Even though we were separated by a thousand miles, we never missed updating each other. Every day, he would send me MMS messages, snapshots of his day — a meal he cooked, a view from his room, or just a simple “thinking of you.”
Those little moments made the distance feel smaller, a lifeline that kept us connected. But then the messages stopped. A week passed without a word, and when I called, his phone went unanswered.
My mom and siblings assured me his phone had fallen in the bathroom, but I couldn’t shake the unease gnawing at me.
That’s when I called his office.
Finding peace in the storm
Back home, I threw myself into caregiving, determined to fix everything.
I thought I could outwork the stroke and undo its damage with sheer willpower. But reality crushed that illusion quickly.
The man who used to tie elastic ropes around me so I wouldn’t fall off his scrambler bike, who would take me hiking and swimming at the waterfall, was now someone I had to bathe and dress.
The weight of his helplessness — and my own — settled heavily on my shoulders. One afternoon, after he dropped a glass, I snapped at him in frustration. Guilt clawed at me as I stormed out of the room, tears burning my eyes.
When I returned to apologise, I found him by the window, his wheelchair bathed in the soft glow of sunlight.
“Daddy, what are you doing?” I asked, my voice cracking. He didn’t look at me. His gaze remained fixed outside, his face softened by the light.
“Enjoying the light,” he said, the words slow but deliberate.
“Why?” I whispered, trying to understand.
“Because… it’s still here,” he replied.
Something in me broke open. In that moment, I saw not just the pain of what we had lost but the beauty of what remained.
From then on, I stopped trying to fix my dad and started learning from him. It wasn’t easy. Some days, the weight of what we had lost felt unbearable.
But there were moments — quiet, luminous moments — where I saw that life hadn’t stolen him from me. It had simply rewritten him. The hardest part was letting go of who he had been to embrace who he was now.
But as we sat together one evening, watching the sunset bleed across the sky, I realised something profound.
My dad hadn’t lost his stories. He was still teaching me, still guiding me — just in a new, unspoken language painted with resilience and streaks of light.
Embracing love, loss, and light
It’s been six years since my father passed away on October 5, 2018, at Sarawak General Hospital due to a sudden lung infection.
I still vividly remember that the night before, we laughed so hard over his swollen hand — likely from a blocked central line. I never imagined that laughter would be our last shared joy, a fleeting light before the darkness.
The next morning, a frantic call jolted me awake. At the hospital, the doctor’s grave expression said everything the words couldn’t.
“Your father’s condition worsened suddenly this morning.
“His oxygen and heartbeat dropped sharply. I’m sorry, but there’s no hope of recovery,” he said, his voice heavy with both compassion and finality.
Nevertheless, the doctor offered me two options: let my father go naturally or use a defibrillator to try restoring his heartbeat.
I glanced at my dad’s face — so calm, as if he were ready to meet his eternal Father.
Through my tears, I made the hardest decision of my life: I chose to let him go peacefully. I didn’t want him to endure any more pain.
I held his hand as tightly as I could, my grip trembling as the heart monitor let out its unbroken beep.
The world seemed to pause, the Friday morning sun casting a gentle glow through the window, indifferent to the life slipping away.
And just like that, my father was gone. No tears came, only a silence that pressed down on my chest, leaving behind a pain so vast and unyielding that no words could ever contain it.
In the years since, I’ve learned that losing someone we love isn’t something we ever truly overcome.
I still miss his laughter, his cooking, and his jokes. I miss the way he blow-dried my hair before school and the rides we took on his scrambler bike.
Most of all, I miss the moments he could have shared with my two boys.
He would have been the aki (grandfather) who spoiled them, saying “yes” when I said “no,” just as he did with me and my siblings.
Now, as a parent myself, I carry his lessons with me. I strive to be the kind of parent he was — loving, supportive, and strong in ways my children may only fully appreciate when they’re older.
I also want to create memories they’ll cherish, the way my dad did.
Living with a disabled parent wasn’t just a challenge; it was a transformation.
It taught me that every moment, no matter how small — whether it’s sharing a laugh or simply sitting in silence — is a chance to create a memory.
These moments, etched with the beauty of imperfection and the grace found in life’s cracks, become treasures that outlast loss.
To my dad, Ngadan Tangkong, I miss you deeply. I still whisper prayers, asking if you can see me and my boys from up there.
I know you’re with Him now, and that gives me a measure of peace.
But it doesn’t stop me from wishing you were still here, riding through life with me, teaching me how to find the light even in the darkest times.
To those with disabled parents or loved ones, don’t feel burdened — feel blessed.
Cherish every moment, for once they’re gone, they become treasured memories, leaving behind a longing that haunts your soul forever.
