I’M OFTEN told I look normal. In fact, when I sit in the waiting room of the neuro clinic for my annual check-up, I might even look like I’m there for someone else. I dress neatly. I walk in unaided. I respond when my name is called.
There’s no oxygen tank by my side, no slurred speech, no visible signs that something once went deeply wrong.
But I’m the patient. I’m the one with a brainstem cavernoma—a rare malformation tucked deep inside the pons, where vital things live: breathing, swallowing, balance, vision.
Mine was discovered almost by accident in late 2015 after a year of quiet, persistent numbness. No real pain. Just a strange tingling on the left side of my body — like when your leg falls asleep. Except this one didn’t wake up.
Even after diagnosis, I felt mostly fine. Until I didn’t. On my 41st birthday, after a small slice of cake, I vomited. Just once. But I remembered what my neurosurgeon had said: If anything changes, head straight to emergency. So I did.
What followed was a slow spiral—days in a hospital room, my vision narrowing, my head heavy as stone. They drilled a hole in my skull to relieve the pressure.
And when things didn’t improve, they opened it properly. They removed the cavernoma. And with it, a part of the person I used to be.
The surgery was a success. Technically. The mass was gone, but the aftermath lingered. I emerged with right-side facial paralysis and fine motor loss in my left hand. I couldn’t use a straw to drink. I couldn’t button a shirt with my left hand.
I couldn’t pronounce the consonants F, V, B, or M without sounding like I was underwater. These were not headline-worthy losses. No one made a documentary about it. But they changed my daily rhythm in subtle ways. And now, almost a decade later, they still do.
In the neuro clinic, I’m often the most “normal-looking” person in the room. There’s a cruel kind of irony to that. Some patients shuffle in, others are wheeled. Some can’t speak. Others don’t respond.
Then there’s me—smiling halfway, speaking carefully, nodding with one side of my face. And because I pass, people assume I’m fine. That I’ve recovered. That the story is over.
But recovery doesn’t always mean return. Sometimes it means reinvention. I’m not who I was. But I’m someone still becoming. We live in a world obsessed with how things appear—with symmetry, vitality, performance.
And we admire recovery when it ends in a triumphant “after”. What we don’t talk about is the middle. That long, awkward middle where you’re not who you were, and not yet sure who you’ll be.
It’s in that space I’ve quietly learned how to live again—how to laugh when others flinch at my half-smile, how to teach when my words won’t form the way they used to, how to type research papers when my fingers fumble with the home keys.
Haruki Murakami once wrote, “Pain is inevitable. Suffering is optional.” It’s the kind of quote that looks great on a poster, but feels slippery in practice. Pain can change you long before you choose how to respond to it.
And sometimes, just waking up and carrying on is the only choice you have. Murakami’s characters often walk through surreal landscapes of loss and disorientation, not to escape their pain but to better understand it.
I think about that often—how we don’t really get out of the woods, we just learn to walk differently within them.
I like to think there’s a quiet club for people like me. We don’t meet. We don’t speak of it. But we recognise each other—in the slightly delayed grip of a handshake, in the gentle sway of someone regaining balance, in the pause before a word that’s harder to pronounce than it used to be.
Paulo Coelho once wrote, “The strongest love is the love that can demonstrate its fragility.” Maybe the same can be said for strength itself. Real strength isn’t loud. It doesn’t announce its victories. It adapts.
It hums quietly beneath the surface of ordinary things: holding a pen, buttoning a cuff, walking into a clinic with your head held just high enough.
Over time, you learn to stop explaining yourself. People will think you’re fine, and you let them. Not because you owe them silence, but because you’ve made peace with being misread.
When someone asks me if I’m fully recovered, I say, “I’m well.” And I mean it. I’m well in ways that matter. I teach, I research, I write. I raise three sons with a woman who knew me before all this. I show up. I adapt. I live.
But once a year, when I sit in that neuro clinic—surrounded by wheelchairs, soft-spoken nurses and a neurosurgeon who never forget my face—I remember that I belong to a quiet category. Not the visibly broken. Not the visibly healed. Just quietly altered.
And maybe that’s the mark I carry now—not the scar at the back of my head, not the asymmetry of my smile, but the quiet knowledge that looking normal and being fine are not the same thing. Not even close.
Ir Dr Nahrizul Adib Kadri is a professor of biomedical engineering at the Faculty of Engineering, and the Principal of Ibnu Sina Residential College, Universiti Malaya.
The views expressed are solely of the author and do not necessarily reflect those of MMKtT.
- Focus Malaysia
